Tag Archives: lyme disease

Lyme: The Differential Diagnosis

By Jennifer Crystal

With overlapping symptoms, how do you know that you have Lyme and not another disease? It’s important to consider all health factors

A patient recently asked me, “How do you know you have Lyme and not multiple sclerosis or chronic fatigue syndrome? It sounds to me like you have chronic fatigue syndrome.”

I understand such questions. They come up because Lyme is considered the “great imitator.” Many of its symptoms are similar to those of other illnesses such as multiple sclerosis (MS) and chronic fatigue syndrome (CFS), as well as rheumatoid arthritis (RA), Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS), lupus, and fibromyalgia. If a doctor is not well-versed in tick-borne disease, they might have difficulty making a differential diagnosis—differentiating between Lyme and other diseases.

However, there are important distinctions between these conditions. For example, Lyme arthritis can affect one, few, or many joints, whereas RA tends to affect most. While synovitis (inflammation of a synovial membrane) can mean Lyme or RA, only Lyme would show fluid in the sub-patella area.[1]A good Lyme Literate Medical Doctor (LLMD) understands such nuances.

I know I have Lyme because I had an unequivocal CDC-positive test. I also tested positive for two tick-borne co-infections, babesia and Ehrlichia. I presented with specific clinical symptoms of these diseases and the tests corroborated my LLMD’s clinical assessment. He knew that my low CD-57 test was indicative of Lyme, because ALS and MS don’t usually have low CD-57 counts. He knew that my hallucinogenic nightmares and other sleep disturbances were a sign of neurological Lyme and babesia (later confirmed by a SPECT scan), and he knew that my migratory on-and-off aches were typical for Lyme, not RA (which are more symmetrical and persistent). Moreover, he recognized that my crushing fatigue was a result not just of my tick-borne illnesses, but also of my underlying Epstein-Barr virus.

Yes, you read that right: I write primarily about my tick-borne diseases, but they’re not my only medical conditions. So in some ways, the patient who questioned me was not incorrect; I do have CFS, or a version of it called chronic fatigue immune deficiency syndrome. It stemmed from a case of mono that became chronic Epstein-Barr virus (EBV) because I had underlying tick-borne infections that prevented me from adequately fighting the mono.

Here’s the rub with these umbrella diseases, diseases under which a number of symptoms fall: often patients have more than one of them, or their symptoms fall under the broad spectrum of more than one, because what they’re battling is actually a multi-system immunological breakdown from years of health issues. As Richard Horowitz, an LLMD, states in his book Why Cant I Get Better? Solving the Mystery of Lyme & Chronic Disease, “Identifying the multifactorial causes of chronic illness is the next most important paradigm shift in medicine.”[1]

To consider all health factors in making a differential diagnosis, Dr. Horowitz uses a detailed Lyme multi-system infectious disease syndrome (MSIDS) questionnaire based on one originally created by another prominent LLMD, Joseph Burrascano. This health map looks at Lyme disease, co-infections, other bacterial infections, viral infections, parasitic infections, and fungal infections, and takes into account immune dysfunction, inflammation, environmental toxicity, allergies, nutritional and enzyme pathways, mitochondrial dysfunction, neuropsychological issues, autonomic nervous system dysfunction, endocrine abnormalities, sleep disorders, gastrointestinal abnormalities, abnormal liver functions, issues with pain, drug use, and physical conditioning.[2]

As Dr. Horowitz notes, “This process ensures that no symptoms are left out and gives the provider an initial opportunity to develop a broad range of differential diagnoses…It provides the health-care provider with clues that point to whether the patient has a high probability of having Lyme disease, a possible case of Lyme disease, or is unlikely to have Lyme disease.”[3]

Other LLMDs use similar broad-spectrum evaluations to make differential diagnoses. Dr. Bernard Raxlen explains in his book Lyme Disease: Medical Myopia and the Hidden Global Pandemic that he looks for “red flags” or “common themes,” listing two full pages of symptoms that are specific to tick-borne illnesses. These include including air hunger, purple/red streaks or scratches, constant sweating on one side of the body, psychogenic or emotionally driven seizures, loss of reading ability, and migrating pain, particularly in joints, muscles, and nerves.[4]

I spent two years treating EBV before seeing an LLMD and realizing I was only fighting half the battle. I know now to ask, what else could be going on? Am I treating all of my symptoms? Does my diagnosis speak to all of them? The patient who questioned me probably only read one of my articles that described my fatigue, and made a quick assumption that I have CFS. Had this person read more of articles describing my specific experiences with neurological Lyme disease, they may have drawn a different conclusion. Its important for patients and for doctors to get the full picture before drawing conclusions or making diagnoses. Lyme may be the great imitator, but it is not a catch-all diagnosis, and we must understand what differentiates it from other diseases.

[1]Gaito, Andrea, MD. “Clinical Evaluation and Treatment of Lyme Arthritis; An Autoimmune Perspective.” ILADS, 2012.

[2]Horowitz, Richard I., MD. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press, 2013 (29).

[3]Horowitz, 58.

[4]Horowitz, 33.

[5]Raxlen, Bernard, MD with Cashel, Allie. Lyme Disease: Medical Myopia and the Hidden Global Pandemic. London: Hammersmith Health Books, 2019 (26-7).


jennifer crystal_2Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrysta[email protected].

william beesmer_planned giving_blog

William Beesmer: Why Giving Back is So Important for This Lyme Patient

Life hasn’t always been easy for William Beesmer, a life-long resident of West Hurley, New York. Born into an impoverished family in 1943, he and his 15 brothers and sisters grew up in a home without the conveniences many of us take for granted—there was no electricity, no indoor toilet, not even a refrigerator (ice was delivered and stored in an ice box). His father died suddenly of a brain aneurysm at age 48, a few months before Beesmer’s mother gave birth to their 16th child.

Beesmer still vividly remembers how his family had lived on food they received from welfare, friendly neighbors, and “lots of bartering” for credit at the local general store. Then, to make things worse, his family lost their home in a fire when Beesmer was still a teenager.

Neverthless, rather than lament his situation, Beesmer refused to let his circumstances color his outlook on life. Instead, the now-retired business development executive calls himself “damn lucky.”

He recalls how many people helped him as he was growing up. When he declined his high school guidance counselor’s suggestion to join the track team because he had a job in the local grocery’s produce department, the guidance counselor—also the track coach—reworked Beesmer’s classroom schedule so he could participate in sports and still hold the job. Beesmer wound up earning multiple varsity letters in track, football and basketball.

Moreover, when he thought it wasn’t even worth applying to a college because he couldn’t afford the tuition, he learned—much to his amazement—that his guidance counselor had actually already applied for him. Beesmer left high school with an award for “Admirable Determination.” Two years later, against all odds, he says, he graduated from SUNY-Delhi with an Associate’s degree in accounting.  Beesmer then earned his B.S. degree at Marist College in Poughkeepsie, New York.

Fast-forward to six years ago. Beesmer was well into comfortable retirement when, after seeing countless doctors, he was diagnosed with Lyme disease. He had been suffering from pain, he says, “so excruciating that sometimes I wished I was dead. Lyme really hits your psyche!” Beesmer also experienced muscle atrophy, knee damage requiring surgery, and could not walk or drive for almost a year without aid of crutches, cane or a walker.

Once again, Beesmer says, he was helped by his many friends and family members who assisted him during doctor’s and hospital visits, grocery shopping, cleaning his house, doing yard work and a host of other tasks.

Although he is feeling much better today, Lyme continues to affect his daily life with brain fog, fatigue and physical imbalance. “I was an active individual sometimes playing 36 holes of golf a day,” he says. “Now I’m lucky if I can play nine holes. And I can’t ride my bike anymore because I’m afraid I’ll fall off.”

Yet Beesmer has been left with a deep appreciation of the many blessings he’s received throughout his life. “It boggles my mind how many people helped me along the way,” he says. “That’s why I want to help others. I’ve become pretty benevolent.”

Among other philanthropic efforts, he has funded the “William Beesmer Admirable Determination Scholarship” at his former high school and has endowed an annual scholarship for college-related expenses at SUNY-Delhi, where he served on the College Foundation’s Board of Directors for 20 years.

A year ago, Beesmer decided he wanted to support Lyme disease research. He looked at a number of organizations before making a decision about which one to support. “I wanted to see the financial statements, what the organization had done, what it had accomplished,” he said. “Then I spoke to someone at Global Lyme Alliance (GLA) and they gladly gave me the information I needed. They were totally professional and financially impressive. GLA surfaced to the top of my search very quickly.”

In addition to his making a financial contribution, he is helping GLA with its ongoing fundraising efforts. “To date, the organization has funded more than $12 million in innovative research grants,” he says. “But this isn’t enough given the rampant spread of Lyme and related diseases with no cure or remedy currently available.”

Recently, he sent a letter to friends, family and others he knows asking them to donate to Lyme research. “I am not doing this for me,” he wrote, “but for the many others suffering from this obscure disease.” To date, he has raised over $75,000 and is quick to add that it’s not too late to give: GLA.org/donate.

Beesmer also complemented his philanthropic giving by volunteering to become a GLA Ambassador, as such he’ll engage with and educate his community about how to prevent tick bites, presently the only sure fire way to avoid Lyme and its tick-borne co-infections. Among his other activities, he plans to speak to the Hurley Senior Citizens, his local Church, and have a one-page letter in the church’s monthly newsletter.

The general public needs to be made aware of the risk of this horrific disease and how to protect themselves,” he said. “I want to provide them with that knowledge and make a difference in their lives.”

To ensure that his funding continues well into the future, Beesmer has—like many who choose to support their favorite charity—included GLA in his estate planning. “A lot of people don’t think about giving to a nonprofit until it’s too late,” he says. “Including a gift to GLA is easy—it only takes one sentence in your will—and ensures you make a lasting commitment.” Because the gift doesn’t occur until after your lifetime, he noted, it doesn’t affect your current budget plans and you can change your mind if you want, making it easy for the gift to align with your life circumstances.

“You can give a donation now or give funds later,” Beesmer says. “It’s up to you. But it’s important to make the commitment to help. I hope others will join with me in fighting to eradicate Lyme in the not too distant future.”

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Global Lyme Alliance stands ready to help you with an array of gift planning options. Whatever your wishes, GLA can work with you and your advisors on the solution that best fits your needs. Please contact Stacy Velarde at 203-921-7572 or [email protected].

new york city marathon_team gla_2019

Meet Team GLA for the 2019 TCS New York City Marathon

Meet the Team GLA runners for the 2019 TCS New York City Marathon. All 5 have personal reasons for taking on the 26.2 mile run through the streets of New York City.

 

If you ask Taryn Tomczyk, from Scranton, Pennsylvania, but now living in New York City, who’s the strongest person she knows, she’ll tell you without missing a beat that it’s her mom, Sue, a chronic Lyme disease sufferer.

new york city marathon_Taryn Tomczyk
Taryn Tomczyk

Sue was officially diagnosed with Lyme about nine years ago, but she was feeling ill for years before that. Unfortunately, as is too often the case, Sue’s doctors never thought to test her for Lyme until it was too late. She has since tried numerous treatments and dietary plans to get the disease under control, but nothing has been effective. She struggles with Lyme on a daily basis—some days she’s so fatigued she can’t get out of bed, on others she has trouble walking due to excruciatingly painful joints.

In support of her mother and others affected by Lyme disease, on Sunday, November 3 Taryn will join 50,000 individuals from across the globe who will gather on Staten Island to run the 2019 TCS New York City Marathon. Taryn will run as a member of Global Lyme Alliance’s (GLA) official charity partner team.

“I want to be able to help raise awareness as well as donate to Lyme research efforts, so that fewer people will suffer and those that do will be treated sooner,” Taryn said. “It means the world to my family and me to contribute to a cause that hits very close to home.”

Joining Taryn as members of Team GLA will be Erin Conant, of Milford, Massachusetts; William Egan, raised in Maryland, but now living in New York City; Mia Sapienza, of New York, and Philadelphia-born Jesse Ruben, who will serve as Team GLA’s captain for the second year in a row. Although each has a different personal reason for running the grueling 26,2 mile course, all want to help raise funds for GLA and make a difference in the fight against Lyme disease.

new york city marathon_Erin Conant with her son
Erin Conant with her son

Erin Conant, a mother of a seven-year-old, says she is “honored” to run in the Marathon for “a cause that’s meaningful and valuable to myself and my family, that is, raising funds to support ongoing Lyme research.” Four years ago she learned first hand how difficult it is to get an accurate Lyme disease diagnosis. She became quite ill with pneumonia and landed in the ER. Yet after a course of antibiotics and steroids and a month of rest she still hadn’t returned to normal. She went back to her doctor for a battery of tests and learned she had been suffering from previously undetected and untreated Lyme. She still experiences varied levels of fatigue and fevers almost daily, but that isn’t stopping her from running despite her personal struggles.

“Running the New York City Marathon is certainly a bucket list item,” she said. “But mostly I want to run to support the development of effective treatments, prevention education and ultimately a cure. It holds a special place in my heart.”

new york city marathon_William Egan
William Egan

After college in Utah, William Egan moved to New York and is now looking forward to tackling his first New York City Marathon. His main goal on race day, he says, is to show others that it’s possible to overcome life’s obstacles. His Lyme journey began a year ago when he took his daughter on a father-daughter campout in New Jersey. At the end of each day, he checked them both carefully for ticks. Yet less than three weeks later,  while vacationing in Florida with his family and in-laws, he started to feel symptoms that he initially dismissed as sun poisoning from being onboard a boat all day. Almost overnight, he started to feel extremely fatigued, and suffered from migraines, light sensitivity, intense night sweats and brain fog. He then spotted a large “softball sized” ring on his upper inner thigh, a tell-tale sign of Lyme disease. He had missed a tick from the campout.

Egan, who works for the investment banking firm Morgan Stanley, returned to New York, saw his general practitioner, and began medication to treat Lyme disease. Three weeks later, he learned he had also been infected with the co-infection babesiosis. In the next few months, his symptoms continued unabated. “I had completed a Half Iron Man a month before the campout with my daughter, and now I couldn’t even bike 20 blocks to my office,” he said. “I went to bed around eight o’clock every night and still woke up exhausted. I had migraines that shut me off from my family and work because I couldn’t even keep my eyes open.”

Grateful that he is feeling better today, Egan is determined to raise awareness about Lyme prevention—and one way is by being on Team GLA. He and his three children are excited about his running in the marathon. “My seven-year-old is also very excited about a series of bake sales/lemonade stands for my marathon fundraising and to remind New Yorkers to check for ticks during their adventures.”

new york city marathon_Mia Sapienza
Mia Sapienza

This will be New Yorker Mia Sapienza’s second marathon—her first was in 2017 and she hopes to finish strong. Her friendship with Team Captain Jesse Ruben and his wife, Jen, inspired her to run and fundraise for Team GLA. “Their love, Jesse’s strength in recovery, and Jen’s support have been inspirational to observe,” says Mia, a Human Relations executive.

Another reason, she says, is that her mom was recovering from Lyme when she was a baby. “My parents were nervous during my mother’s entire pregnancy,” said Mia, “and I grew up hearing about my mom recovering from Lyme with a newborn.”

These reasons have motivated Mia to run for GLA. “I believe in the cause and have witnessed recovery,” she said. “I know how many people suffer still, all over the world.”

new york city marathon_Jesse Ruben, Captain, Team GLA 2019
Jesse Ruben, Captain, Team GLA 2019

Philadelphia-born singer-songwriter Jesse Ruben, now living in Brooklyn, has run the New York City Marathon five times, three times for GLA. For the second year in a row he will run as GLA’s Team Captain.

When he performs at concerts, Jesse makes it his mission to raise Lyme disease awareness. He says no matter where he goes, there is always someone who has Lyme—audience members at concerts, Uber drivers, people waiting in line behind him at the bank. “There is still a long way to go. So I’m going do everything I can to help Lyme patients.”

He says he is proud to run the marathon again. “As Captain of the GLA marathon team,” he says, “I feel honored to be representing this community and running for all of those people who are suffering and who can’t run themselves.”

We hope you will cheer on this year’s Team GLA runners and support their herculean efforts.

Traveling With Tick-Borne Illness

by Jennifer Crystal

For many people, summer means travel, but for Lyme patients, vacationing is not as simple as it was in our healthier days. I miss being able to just throw a pair of pajamas and a toothbrush in a bag and take off for the weekend. Now my baggage is bigger and heavier. I have medications and supplements, specialty foods, and extra pajamas (in case of night sweats) that I have to bring along. I need to consider my daily schedule and my energy levels. Travel is still possible, but I’ve had to make some adjustments.

Many patients write with questions about travel. Can they get on a plane with a PICC line in? Can they bring their medications and supplements on a plane? How far can they travel? I responded to some of these questions in my recent Dear Lyme Warrior…Help post. But here’s a longer practical guide to help you determine if, how, and when you might travel, and what you should keep in mind when you do so.

  • Travel abilities—Your stamina for travel will fluctuate. This is probably the most important lesson I can impart. When I was first ill with Lyme and two co-infections babesia and ehrlichia, I could barely walk, let alone travel. It was exhausting to sit in the car and go to a doctor’s appointment. Someone else always had to drive. As my physical and neurological symptoms improved over more than a decade, I have been able to slowly increase my ability to travel. First I could drive myself short distances. Then I could take a short, direct flight if someone was with me. I’ve worked up to a four hour flight now. Hopefully I’ll be able to go even farther in the future, but I also have to remember that progress isn’t linear. With a relapsing condition like Lyme, there will be times when it will seem easy for me to fly to Florida, and times when it will be difficult for me to drive for an hour.
  • PICC lines—Yes! You can fly with a port! The important thing is to think about timing and supplies. How long will you be away? If you have a PICC line, how many boluses of medication will you need? Contact your airline to see about bringing your boluses on the plane, especially since most need to be refrigerated. Some airlines allow you to bring them through security in a cooler, but you should make them aware. Be sure to have your written prescription with you. Next, think about where you will store your boluses upon arrival. Is there a secure, easily accessible refrigerator? Be sure to bring extra boluses and extra supplies, and to have the emergency contact information of your doctor. You may also want to ask your doctor what you should do if there’s a problem with your line while you’re away (is there a nurse you can call? Should you go to a local medical clinic?).
  • Medications and supplements—When flying, I always carry on all of my medications and supplements in their original bottles. You do not want to run the risk of your medicine being lost in a checked bag. Some people get written prescriptions from their doctors in case they get questioned by airline security. I have never had this problem—prescription bottles with current labels have always sufficed, even when I went out of the country—but you might need this information if you’re traveling with liquid medication (for more information on flying with medication, visit tsa.gov and click “Travel Tips”). If you’re traveling by car, make sure your pill bag is in the car itself, not in an overheated trunk. I tape closed all the compartments of my weekly pill box, so they don’t spill all over my bag. I always bring more pills and supplements than I’ll actually need, in case I get stuck somewhere.
  • Health information sheet—Write out a list of your diagnoses, your medications and supplements, your allergies, your dietary restrictions, your practitioners and their contact information, the name and number of an emergency contact, and any other pertinent medical information. I keep a copy of this list in my suitcase, a copy in my purse/wallet, and an e-copy on my phone.
  • Pharmacy and doctor information—In case you do get stuck somewhere and need an emergency refill, find out before you go if your pharmacy has a store near your destination, and if they can transfer your prescriptions. Also be sure to have your doctor’s phone number easily accessible, and have it written on your health information sheet.
  • Food—Make sure you will be able to get foods that fit your dietary restrictions at your travel destination. Plan in advance—read restaurant menus online, research what grocery stores are nearby, talk to your hosts, call your hotel to see if there will be a refrigerator in your room. I always pack extra gluten-free snacks, even if I wind up putting them all back in my cupboard when I get home. Remember to bring meals and snacks in your carry-on, too. Additionally, I always carry a water bottle, and I bring rehydration tablets if I’m going to be somewhere where I won’t be able to find electrolyte-enhanced water (which I often need due to nightsweats).
  • Plan extra recovery time before and after your travel—Depending on how far you are traveling, you may need extra time to rest upon arrival. When I fly somewhere, I don’t do anything else on the travel day besides sleep and eat, and often I need the following day to recuperate, too. When I travel by car, I make sure that there will be a quiet place for me to nap upon arrival. Build in a couple days for recuperation upon your return, too. This means in general that you will need more time for travel—a three-day trip may turn in to a week-long endeavor.
  • Budget—The reality of traveling with Lyme disease is that it’s probably going to cost more than if you weren’t ill, especially if you’re a budget-minded traveler like me. I used to take red-eye flights or make multiple connections, because those options cost less. I can’t do that anymore. In order to save enough energy to function at my destination, I need to take direct flights at times that work well in my schedule, and that’s more expensive. To do otherwise though would jeopardize my health, and that would be even more expensive.
  • Have a buddy!—It’s much, much easier to travel when you’re accompanied by someone who understands your needs. Having someone to carry your bags, to drive, to help you navigate a new area, to help you find appropriate foods, all this makes travel much more feasible for Lyme patients. Make sure your travel companion is aware of your needs and how they might impact your itinerary. (For example, if you need to nap every afternoon, will there be a way for you to do that without disrupting everyone else’s day? Or will others be okay taking a midday siesta, too?).
  • Ask yourself, is it worth it?— Always ask yourself, is the distance of this travel, and the energy it will take out of me, worth it? Is this someplace you really want to go or someone you really want to see? Will the travel jeopardize your health? Think about costs of travel not just in terms of financial costs, but also in terms of costs to your health, including downtime.

Wishing you safe travels to farther and farther destinations!

Jennifer CrystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

ticks are everywhere_caroline blog

Ticks are Everywhere. Don’t Believe Me? I was Bitten in My Own Bed.

By Caroline Lewis

Tick prevention was never something that crossed my mind growing up, despite living in Fairfield, Connecticut. I would often go on hikes with my family and friends or walk my dog without a care in the world. I went to summer camp in Maine for eight weeks every summer for six summers, and was never bitten, or even taught about tick-bite prevention.

That all changed on Wednesday, June 26th, 2019. On that morning, I got out of the shower to start my normal post-shower routine. As I was rubbing in lotion on my left arm, I felt a small bump. I looked down to see a black tick attached to my arm. I panicked.  Everything I had read about Lyme disease while working for GLA flooded my mind.

Now how ironic is this? Luckily, the day before I was bitten, I took home from GLA a tick removal tool that we include in our Be Tick AWARE prevention kits, with the intent of giving it to my mom to use on my dog.  Little did I know that I would be using them to extract a tick from myself less than 24 hours later. After carefully removing all of the tick with the tweezers, I placed it into a plastic bag (OK, two bags just to be safe), and brought it to work to show everyone that their newest member of the team had been bitten by the very menace that those of us at GLA fear the most.

In my case, I got this tick bite from simply being in my own home. I did not go outside that day (except to go to work); I did not hike; I did not walk my dog in the woods; I didn’t go near beach grasses; I didn’t roll about in fallen leaves, and so on. I should not have gotten a tick bite, but I did. I came home from work and stayed inside for the rest of the night. Ticks are everywhere, and that is something you cannot allow yourself to forget.

Back at work I went to my boss and told her what had happened.  Soon, the whole office was invested in my story, with our scientists looking at the tick with a magnifying glass. We concluded that the tick most likely came into my house on my dog and was in my arm for less than 24 hours, since I would have noticed it when I changed my clothes the night before, or I would have seen it on my arm during the day.

I logged onto the GLA website so I could find a lab to test my tick. I ended up choosing UMass Laboratory of Medical Zoology in Amherst, Massachusetts since they offered to test the tick for common tick-borne co-infections as well as the Lyme disease bacterium.  I packed the tick up and sent it off.

The UMass Labs sent me convenient texts and emails whenever they discovered something new about the tick. For example, they updated me on when received my tick.

However, while getting those texts and emails was admittedly great customer service, I grew more anxious waiting for the actual test results.  My mind was swirling with the worst possible fears and I could not relax.  My heart would race every time I thought about the rick results, filling me with anxieties.

Flash forward to Monday, July 1st, 2019: The tick tested positive for the Lyme disease bacterium, Borrelia burgdorferi, but none of its co-infections.  It was a black-legged deer tick in the nymph stage, and it was only partially fed – confirming our guess that the tick was attached to me for less than 24 hours.  This fact calmed me because I remembered reading that it’s typically accepted that that the tick needs to be feeding for at least 24 hours in order to infect a person with Lyme disease.  I’ll be okay, I thought, it was only attached for around 12 hours.

On Friday, July 5th, I was waiting at the DMV when I noticed a small red rash around my tick bite.

Oh no, I thought, there’s no way! I quickly scheduled a doctor’s appointment for later that day. I have a doctor who has seen me since birth, however, she wasn’t available on such short notice. So, I saw another doctor within the same practice.

When I arrived, the doctor did not believe I had been bitten by a tick and questioned me intensely.  She also stated that the rash was less than 5cm, so she did not think it was a tick bite – just an inflamed insect bite. This doctor completely dismissed my tick bite, and even told me that sending a tick out for testing was useless, ultimately crushing my confidence and making me question my certainty. Yes, this happened in Lyme endemic CT.

She sent me home with the words “keep an eye on.”  The whole appointment lasted around five minutes. I started to feel like the majority of Lyme patients out there who see doctors who steadfastly refuse to believe them no matter the iron-clad evidence. I started second guessing myself. What if I’m just allergic to tick bites generally?  What if the lab misidentified the bug in my arm? This caused extreme anxiety all weekend.

When I returned to work that Monday, I felt defeated. I hadn’t looked at my rash that morning, but when I revealed my arm to my coworkers, it was clear that a bulls-eye rash had formed.

My coworkers suggested meeting with my trusted family doctor this time to check out the rash.  Later that day, my family doctor was available, and she took a look at my arm. She gasped and exclaimed that I needed doxycycline immediately.  She even asked if she could show her intern my rash, claiming it was a perfect example of a Lyme bulls-eye rash.

My bull’s eye rash continued to get worse after I started Doxy.  Here are some pictures of the first three days after I started the antibiotics. By now the rash has diminished and is completely gone.

Here are pictures of my bulls-eye from July 9th to July 11th.

I was relieved to get a final diagnosis, I also felt extremely lucky.  Not lucky in the sense that I had contracted Lyme disease, but lucky because I had the bull’s eye rash, which is a classic symptom of Lyme. Many people who’ve been bitten by a tick never

recall the tick, or even develop a rash. Lucky, too, that I had a doctor who knew the science and believed in me. Moreover, because I found the tick which had bitten me in a very conspicuous place. Sadly, a lot of Lyme patients aren’t so fortunate.

Looking back, it is almost amusing that in my whole life I was never bitten by a tick until I started working at Global Lyme Alliance. Every time I tell my story, it leaves my friends and family gaping in disbelief.

This experience has given me a small window into what some Lyme patients face, from physical fatigue to physician dismissal – it’s utterly frustrating. Admittedly, my round of horror was relatively brief, and the odds for recovery are in my favor as I started treatment so early. Consider those who are suffering for years and never know what they are suffering from, often because of the lack of understanding by too many physicians and the lack of accurate diagnostics.

My thanks to GLA for providing me with this platform so I could share my Lyme story.  Thanks, too, for providing me with the resources and guidance to help me get through this trying process. And to those who think you’re immune from a tick bite, think again. I was bit inside of my own house!

 

 


Caroline is Global Lyme Alliance’s social media and marketing intern for the summer of 2019.  She is from Fairfield, Connecticut, only one hour away from the birthplace of Lyme disease, Old Lyme, CT.  She is a rising senior at Denison University in Granville, Ohio and she is studying Psychology.

lyme warrior

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column, “Dear Lyme Warrior … Help!”, to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? You can email her at [email protected].


You mentioned that your memory improved. Did it all come flooding back one morning, or was it gradual?

When Lyme crosses the blood-brain barrier into the central nervous system, it can affect your memory. Memory loss can manifest differently for every patient, and so is its restitution. It can come back differently. It all depends how deeply the infection is embedded in your brain, what parts of your central nervous are impacted, and how you respond to treatment.

I never lost my long-term memory. In fact, it got stronger. Perhaps because I am a writer who is attuned to details, my long-term memory has always been good; I can remember what a classmate was wearing on the first day of third grade and what they said to me during recess. As my Lyme got worse, with antibiotics chasing the Lyme bacteria deeper into my brain, my hallucinogenic dreams got wilder, filled with minute details from random points in my past. This has been both a blessing and a curse. I remember exact scenes and conversations from a decade ago that I include in my memoir. But I also remember painful times that I’d rather forget.

My short term memory was affected by Lyme. I sometimes joke, “I can tell you what you said to me two years ago, but don’t ask me what I had for breakfast.” At the lowest point of my illness, my mom would call and ask how my day was— and I couldn’t remember. I would need to look at my calendar to recall what doctor I had seen that day. Now my short-term memory is better, but when I’m having a flare-up of symptoms or am feeling especially tired, I still struggle. I might ask a friend, “Did I already say that?” or repeat at the end of a conversation something I said in the beginning of it. At times I still have a hard time coming up with words mid-sentence. For the most part, though, my memory is relatively okay, and it came back gradually, as the antibiotics slowly killed off the bacteria in my brain.

You mentioned that you traveled to Florida and Mexico, but wrote that going to Europe and other places would have been too far. How did you make that distinction?

When I was first sick with Lyme and two of its co-infections babesia and ehrlichia, I was bedridden. Travel as far as the mailbox was impossible. As I slowly got better, I was able to make short trips to town and then around my small home state of Connecticut, usually with someone else driving. Eventually, I regained enough strength and cognitive function to safely drive myself, first for short distances, and then longer ones up to about an hour. Past that, I would get too tired, reaching that feeling of “hitting a wall” that marathon runners talk about.

Over time, my ability to travel has expanded, but it still depends on how far I can push myself before I hit that wall. I’ve learned to know my limits and when they can and can not be stretched.

Currently, I have good energy in the morning, but it runs out completely by mid-afternoon, and can be restored only with a nap. That means travel is best for me in the morning or evening, but not during nap time. Florida and Mexico are, respectively, three and four hour direct flights from my city. I have traveled to each in the morning, arrived at my destination by nap time, and went to sleep. Both were also due south, with the Mexican location being just one hour west. Pushing the time difference any further than that probably would mess with my circadian rhythms too much for me to enjoy the trip. Going to Europe would require an overnight flight and several time changes. That’s not entirely out of the question—it could possibly be done if someone were traveling with me, and if I had a lot of time to recover built into my schedule upon arrival— and a lot of time to recover upon returning— but that’s time, expense and energy I currently can’t afford.

Having someone with you who understands your health needs can also make a big difference in your ability to travel. I can take longer car rides if someone else is at the wheel. Moreover, it saves me a lot of energy when someone else carries my bags or loads up the car. I didn’t realize until I went to Mexico with a partner what a difference it made to have him lift my carry-on into the overhead bin, let me sleep on his shoulder on the plane, and say to me, “I already found a direct flight that gets us in by lunch time,” and this before we even started planning the trip.

No matter how much someone else helps, though, your physical limits are your physical limits. Only you know what these are. The most important questions to ask yourself include: How far can I go without spending the entire trip recovering? and What’s the greatest distance I can travel and still enjoy myself?


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

The Aches and Pains of Tick-Borne Illnesses

by Jennifer Crystal

The first time I saw the award-winning Lyme documentary Under Our Skin, I was seated in the theater. In the film, a doctor who doesn’t believe in chronic Lyme was asked what might otherwise be causing the symptoms of the more than 427,000 people afflicted by tick-borne illness every year. He suggested it could just be the normal aches and pains of getting older.

With that bit of ignorance so baldly stated, everyone in the theater let out a collective groan.

There is a big difference between the aches and pains that come with tick-borne illnesses and those associated with every day life.

To be fair, those who haven’t wrestled with tick-borne illnesses might be confused by the generic descriptor “aches and pains.” That’s because it’s like so many other nebulous descriptions,—like “fatigue”—that could be the result of any number of illnesses. Let me explain.

In my former athletic life, I was a hard-core skier. In college I skied almost every winter day, and after I graduated and moved to Colorado, I skied every Saturday and Sunday from November to April. Often my muscles were sore after these workouts. Sometimes I’d even wake up with an aching back, but only because I’d worked my arms too hard the day before. These aches and pains were akin to those anyone might feel after working out at the gym, going for a run, or weeding the garden. The muscles get overworked, and you feel residual soreness.

Unless this type of soreness is indicative of a larger injury, it usually can be alleviated with gentle stretching, rest, ice and ibuprofen. Generally, the soreness dissipates within a few days, and you can continue with daily life—sometimes even exercising moderately—while these aches and pains heal. They are a nuisance but they’re not debilitating.

The same is true for what I know of the aches and pains of getting older. Granted, I am only 41, so I can’t speak yet to the pain my older readers feel when their bones start to complain or they develop arthritis. For me, the aches and pains of getting older mean that my knees creak when I crouch down to talk to a child. My back twinges more than it used to when I pick up a heavy bag or box and I’m more susceptible to a pulled muscle. When I fall down skiing, the bruises hurt a little more, I’m having more soreness the next day than when I was younger, and I tend to need more ibuprofen.

These aches and pains are tolerable. I might complain about them to a friend, but then I go on with my day. These pains don’t have me bedridden for months or years. They aren’t all over my entire body, just at the stressed joints. They don’t make me feel like I have a perpetual flu.

The aches and pains of Lyme disease do cover the entire body. When you have Lyme, you feel like your whole body is weighed down with a thick coating of molasses. It takes a slow, exhausting effort to lift your limbs. Your joints ache not in a post-work-out way, but in a way that feels like that molasses is pooling in your elbows, knees and toes. I’ve often felt a pulling sensation in these areas, like someone was gripping and yanking at my joints.

And the pain was not only in my joints. Because Lyme is a systemic inflammatory infection, I felt aches and pains all over my body. Think about how your ankle swells when you twist it badly. That’s because of inflammation. Now imagine that type of inflammation all over your entire body. That’s Lyme disease.

Different Lyme patients feel pain in different areas, depending where the Lyme bacteria (spirochetes) are gathered, and depending on which areas the infection has spread to. Some have migraine headaches. Some Lyme sufferers have back and neck pain that makes it hard to move. My worst aches were in my forearms and shins. I felt a deep pain in those bones, which would bruise to the touch. Returning to the molasses analogy, sometimes my forearms felt so weighted down that I could not type. I could hand write one sentence and then had to lie down.

These aches and pains went on for months, until antibiotics and prescription anti-inflammatory medication killed enough Lyme bacteria that the molasses feeling blissfully dissipated. The pain could not have been alleviated with ibuprofen or ice, because it was the result of a bacterial infection that was deep in my body. It wasn’t just a nuisance; it made daily life impossible.

Now, when I get “normal” aches and pains—when I’m sore from skiing, or my calves hurt from walking around the city in bad shoes, I know it’s not Lyme-related, because it’s not as deep or painful. It goes away on its own in a few days. When I less frequently feel a pulling sensation in my joints, shins or forearms, or when I can actually feel the spirochetes buzzing under the skin in those areas,–when I put my hands on my skin, I can feel a buzzing underneath, like electricity–then I know it’s a Lyme-related problem.

If only Lyme patients could show others what’s inside—if only we could demonstrate our infection the way we see illustrations of a smoker’s lungs. Perhaps then people who don’t have Lyme would better understand. To reiterate, Lyme pain is not the same as the typical aches and pains of aging, and it needs to be treated seriously, by a Lyme Literate Medical Doctor (LLMD). You can find one here. 


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

hhs tbdwg

GLA Letter to Assistant Secretary of Health Re: TBDWG

Below is text from the letter sent to the Assistant Secretary of Health at the U.S. Department of Health and Human Services regarding changes to the 2019 Tick-Borne Disease Working Group, by GLA Chairman of the Board Robert Kobre

 

July 1, 2019

ADM Brett Giroir, M.D.
Assistant Secretary of Health
U.S. Department of Health & Human Services
200 Independence Ave, SW – Room 716G
Washington, DC 2021

Dear ADM Giroir:

I am writing on behalf of the Global Lyme Alliance (GLA), where I serve as Chairman. GLA is the largest full service 501c3 organization dedicated to finding effective treatments and reliable diagnostics for Lyme disease. Our rigorous research program has yielded more published studies in peer reviewed journals than any organization focused on Lyme (such as the definition of “Post Treatment Lyme Disease” & the widely accepted belief that 10-20% of patients continue to suffer from Lyme symptomatology after early antibiotic treatment). Further, our strong and open minded scientific approach which is backed by a world class Scientific Advisory Board has spawned many of the most promising areas of Lyme disease etiology, drug discovery and direct and indirect diagnostic pathways.

We want to thank the hard working members of the U.S. Department of Health & Human Services (“HHS”) who helped put together the original 2017 Tick-Borne Disease Working Group (TBDWG) and getting the various parties to work together to drive toward consensus recommendations.

GLA was especially pleased that one key conclusion of the TBDWG reinforced the previous year’s published findings of the GLA sponsored Banbury group (which included over 40 top scientists on both sides of the Lyme debate, and members of the CDC, NIH and FDA) – that the widely used two tier antibody test lacked the necessary sensitivity to be a useful tool for diagnosis and more current direct and indirect approaches were urgently needed. Without being able to identify who has Lyme disease and who does not, the debate about Post Treatment Lyme Disease and Chronic Lyme disease will continue.

We also wanted to voice a few concerns about the current 2019 version of the TBDWG. GLA was hoping that the newly constituted TBDWG would build upon the scientific road map and Lyme disease recommendations of the 2017 effort, which in turn would drive additional federal funding for Lyme disease research. Apparently the direction of the group has turned to Rickettsia, while also worthy of study, does not have the incidence rates associated with Lyme disease in the United States. To the extent the 2019 TBDWG focuses on Lyme disease, GLA would ask that the HHS and TBDWG leadership present a diverse set of views on long-term Lyme disease through the use of researchers and patient advocates at the committee and sub-committee levels.  If that is not possible, our strong recommendation would be to drop the Lyme arm of the 2019 efforts because having only one researcher who believes Lyme disease is a simple bacterial form and easy to treat, without having a balance of scientific experience on the committees, will undoubtedly lead to conclusions that are inconsistent with the findings of the previous TBDWG and can harm the advancement of Borrelia burgdorferi research. GLA’s DNA is disciplined scientific research. Over a decade of receiving grant proposals makes us acutely aware of the diversity of thought and proven science around this fast spreading, devastating disease and therefore having a single viewpoint on the TBDWG is both dangerous and short sighted.

GLA supports the efforts of other Lyme organizations, such as LymeDisease.org, who have voiced their concerns about the selection process, members, transparency, testimonial access, gender inequality and focus of the new committee. GLA understands that the composition of the TBDWG and its committee structure is not transparent by regulatory design, with mandatory short notice given to participants. However, we strongly encourage the leadership at HHS and TBDWG to improve transparency on selection and make the necessary adjustments to move us forward on the Lyme learning curve. With 425,000 new cases per year and over 2 million PTLDS patients and more who never received early antibiotic treatment who are suffering medically, emotionally and economically, we assume that you, like we, want to help accurately diagnose patients and cure those with acute and long-term Lyme disease as quickly as possible.

Thank you for your time and consideration.

 

 

 

Robert Kobre
Chairman
Global Lyme Alliance
Stamford, CT

Building Resilience

by Jennifer Crystal

Last spring was incredibly stressful for me. With adrenaline, good maintenance routines, and a bit of luck, I completed an intense amount of written work, a teaching load that included a lot of traumatic subject matter, and emotional upheaval in my personal life. By the time I stopped teaching in June, I was burned out.

That’s when my Lyme symptoms started to flare, and I started to panic.

Earlier in the spring, I’d experienced a flare-up of babesia symptoms—air hunger, post-exertional fatigue, low blood sugar—and quickly nipped them in the bud with medication. I had an uptick in neuropsychiatric symptoms —sleep disturbances, obsessive thoughts, some anxiety and depression—but assumed those were all a response to external stressors, not a flare up of infection. My Lyme Literate Medical Doctor (LLMD) agreed, but cautioned that I really needed to decompress this summer to restore the good health I’ve grown used to.

Borrelia burgdorferi, the spirochete that causes Lyme disease

As I finally took a rest, Lyme symptoms I hadn’t felt in years suddenly crept back. My shins and forearms ached, as they had when I first had Lyme. When I put my hands on my arms and legs, I felt the buzz of spirochetes spinning under my skin. I could still do errands and even go kayaking, but my store of energy was low and ran out completely afterwards. It didn’t feel like I had the flu and I wasn’t bedridden as I’d been in my early Lyme days, but I was more tired than I’d been in some time. Blood work confirmed that my inflammatory markers were high—not enough to warrant a mediation change, but what my doctor called normal variations in a relapsing cycle.

That frightened me. I hadn’t heard the word “relapse” in years. I’ve been in remission for more than a decade, and while I’ve had periods when my sleep was off, when my nightmares returned, when my night sweats were heavy, they were always quickly alleviated with a shift in supplements or extra integrative manual therapy appointments and neurofeedback sessions. (For information on integrative manual therapy, including research on how and why it works, check out the book Body Wisdom by Sharon Giammatteo, Ph.D. She’s also written several manuals on integrative manual therapy techniques for specific systems of the body).

“You’re much more resilient than when I first met you,” my integrative manual therapist has remarked often in the last few years. Overall, he feels far less bacteria in my body, and he says when I do have a flare up, my body knows how to bounce back from it quickly. I also know how to take better care of myself, and I’m generally more in tune with fluctuations in my body, which helps.

My neurofeedback practitioner has made the same comment about resilience I’ve arrived in his office haggard and crazed after several nights of wild dreams or several days of missing my essential mid-day nap. A few minutes in to the session, my brain would kindly remember why it was there and what it was doing, and settle back down again. After the sessions, I usually go home and take a good nap. “Signs of a well-trained brain,” my practitioner says. (The type of neurofeedback I do is called Neuroptimal. To learn more about it, click here)

Over time, without my even realizing it, my body and brain have built resilience. I’ve had enough appointments and sessions that my body has slowly gotten stronger. I’ve been on medications and supplements, and have kept to a solid routine, long enough that I’ve developed good foundational resilience. When a blow hits, I can weather it better than I used to.

Still, this most recent episode scared me. What if I did myself in? I worried, remembering how similar stressors led to my complete relapse over a decade ago.

However, I didn’t have the same armor back then. I had no antibiotics or immune-boosting supplements to defend against replicating spirochetes. I had some maintenance routines in place, but not enough of them. I had stopped adjunct integrative manual therapy and neurofeedback. I didn’t have good local support. I hadn’t yet accepted my illnesses as part of me, and therefore chided myself for a lack of fortitude when my body couldn’t perform the way I wanted it to.

Now, with years of building resilience—medically, emotionally, physically, and neurologically—I have much stronger physiological armor. I rested a lot last week. I did a lot of integrative manual therapy to quiet the buzzing spirochetes. I underwent a neurofeedback session. I took a true break from work. I ate well. I increased one of my homeopathic drops. I drank green tea.

And this week I am feeling much better. Not 100% yet, so I still need to be careful. I need to keep my foot off the accelerator for awhile. My blood work showed I was at a precipice, so I intend to keep working to tip back towards full remission. My improvement this week gives me hope that will happen soon.

If you are currently bedridden in the throes of one or more tick-borne illnesses, you might be thinking, Ha! I wish I could get better in a week! Believe me, I know how you feel. I was bedridden for years. I often took two steps back before I took one step forward. I did everything my doctors told me to do and I still didn’t feel I was making improvement.

What you can’t see from that position, though, is that your body really is building up resilience. If you’re on the right medications (a good LLMD will create the right pharmacological protocol for you), doing whatever adjunct therapies work for you, eating nutritiously, getting the rest you need, and generally taking care of yourself, eventually you should slowly start to feel better. Your Herxheimer reactions won’t be as bad. Your flare ups won’t be as severe.

I say this ten years out. Remember that healing is not linear but a holistic practice. You will cycle through terrible periods, but you’re ever inching ever forward, building resilience along the way. I hope that my resilience helps me continue to fight through this rough patch, and I hope that yours leads you to many years of good health.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

3 tips prevent tick bite

3 Tips to Protect Your Kids from a Tick Bite at Summer Camp

Summer camp can be one of the most memorable experiences for kids. It’s often the first taste of independence, fun from sunrise to sundown, and making lasting memories. A sure-fire way to make summer camp a negative experience for a child is if they get a tick bite that leads to Lyme disease or other tick-borne illness.

For parents, it might be the first time your child is away from your supervision. Away from you saying ‘no’ to Fruit Loops for breakfast. Away from you applying sunscreen. And away from you applying tick repellent and doing a nightly tick check. Don’t panic. While these tips won’t help with the Fruit Loops, these 3 simple tips are easy to go over with your camper before they take off for a few weeks of fun.

Tip 1:   Dress the Part

Wear clothing that keeps ticks off your skin and makes them easier to spot, including:

  • Long sleeved shirt
  • Long pants
  • Socks, with pants tucked in
  • Closed-toe shoes
  • For long hair, tuck it under a hat
  • Click here for GLA’s complete Be Tick AWARE tick bite prevention guide

Tip 2:   Wear Repellent

Use both on-skin and on-clothing tick repellent to ask as double protection.

  • In choosing a repellent, check for EPA-approval, toxicity, coverage time, and side effects. Click here for GLA’s Tick Repellent Roundup.
  • Preferred ingredients for on-skin repellent: picaridin 20%, DEET, or Oil of Lemon Eucalyptus
  • Preferred ingredients for on-clothing repellent: permethrin. You can purchase clothing pre-treated or treat yourself.

Tip 3: Check for Ticks!

Check for ticks every day. Look everywhere, they love to hide! And remember, a nymph tick is about the size of a poppy seed; and adult tick about the size of a sesame seed.

  • On scalp, in hard and behind ears
  • Under arms and between fingers
  • On waist, back, belly button, and groin area
  • Behind keens and between toes

Before your kids head off for fun, go through these tips with them and show them how to apply repellent properly and perform their own tick checks.

GLA_3 tips_tick bite prevention_betickaware


Additional tools and resources:

  • Certified Camps: Is your child’s camp taking precautions against ticks? Click here to see list of GLA partner Ivy Oaks Analytics certified camps.
  • Check 4 Ticks poster: click here
  • Be Tick AWARE poster: click here
  • Tick Repellent Roundup: click here
  • Tick Table: click here
  • How to Remove a Tick: click here

Not All Lyme Rashes Are Created Equal

by Jennifer Crystal

Lyme disease: that’s the illness you get when you find a bulls-eye rash, right?

It very well could be, but here’s the catch. The bulls-eye rash isn’t the only sign of Lyme disease. Nor does every Lyme rash (Erythema Migrans or EM) present as a target with red rings around it. To assume that Lyme always comes with a bulls-eye rash is, in fact, to be way off target and—worse—poorly informed when it comes to diagnosing the disease.

In fact, less than 50% of Lyme patients ever find a bulls-eye rash, or any rash at all. But that doesn’t mean they don’t have Lyme. It means they, and their doctors, will need to look a little further.

I found a rash on my forearm in the summer of 1997 while working at a camp in Maine. It wasn’t a bulls-eye shape. It was a series of red dots, sort of stippled, that extended from my wrist almost to my elbow. It wasn’t raised and it didn’t itch.

“It’s probably from your sleeping bag or something,” the camp nurse said. In 1997 Lyme disease was not on the public health radar or mine, which is ironic since I grew up in Connecticut where the disease was first discovered.

That same summer I developed hypoglycemia, which I later learned is a common symptom of the tick-borne disease babesia, a co-infection of Lyme. That fall I was bedridden with flu-like symptoms. Had I presented these symptoms, and my rash, to medical professionals today, they might have seen a pattern and tested me for tick-borne illnesses. Lyme literacy is improving, but not all doctors look at individual symptoms in a big picture way—and that pesky myth of the bulls-eye rash, especially if you don’t have one, still persists, which is why I continue to share my story.

Sample Em-RashEM rashes present in many different ways. Some are small. Some are big and blotchy. Some are spotted. Some are pink and some are bright red. If these sentences are starting to sound like a Dr. Seuss book, it’s because the lesson they contain is simple. If you find any type of rash at all, especially during the summer months, and if you subsequently experience symptoms of tick-borne illness, do not assume your rash is nothing. Show it to a Lyme Literate Medical Doctor (LLMD), who you can find here.

If you, your children, or your pets spend time outdoors, it’s important to do nightly tick checks of everyone exposed. As you are looking for culprits, also keep your eye out for rashes of all kinds. They don’t always appear in obvious places. A rash could be on your back—have someone else look!—in your groin, between your toes, behind your ears, or on your scalp.

And a rash might not be there at all, but you can have Lyme disease without ever getting one. Therefore, in addition to checking yourself for ticks and rashes, it’s important that you keep an eye out for typical Lyme symptoms. If you experience flu-like symptoms such as fatigue, joint aches, headaches, neuropathy, Bell’s palsy, or any other unusual symptom, do not brush it off as a summer flu.

Maybe you’ll get lucky, and that’s all it will be, the summer flu. But it’s better to be safe than sorry; let an LLMD make that call. You will also want to keep an eye out for symptoms of co-infections, like the hypoglycemia which I experienced.

Of course, if you are lucky enough to find a bulls-eye rash, take it as an unequivocal sign: you have Lyme disease. Do not wait to see if you develop symptoms. That can take months. By which time the disease, and possibly co-infections, will have spread further into your system and may cross the blood-brain barrier. Then the disease(s) will be much harder to treat.

In a way, finding a bulls-eye rash is like winning the lottery. If you’re smart, you have a ticket to immediate diagnosis and treatment. Moreover, it’s unlikely that you won’t have to deal with chronic symptoms and long-term treatments. If you aren’t so lucky as to win a bulls-eye, keep looking for ticks, atypical rashes, and symptoms of tick-borne disease.

I wish you all a Lyme-free summer!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

In the Lymelight podcast graphic

Podcast: In The Lymelight – Dr. Casey Kelley

WELCOME TO IN THE LYMELIGHT: A SHOW ABOUT…WELL…LYME DISEASE
Season 2, episode 4

Welcome to In The Lymelight: a show about…well…Lyme Disease. In the Lymelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco: I hope you enjoy listening in as much as I enjoy talking.

In our fouth episode of season two of In The Lymelight, Alex sits down with doctor and fellow Lyme warrior, Dr. Casey Kelley. Dr. Kelley and Alex discuss how Dr. Kelley’s own health journey brought her to helping others, why Lyme is so difficult to treat, the challenges in testing for Lyme and mold toxicity.

 

For interview suggestions, information or just to say hi- you can connect with me on instagram at: @alitmoresco.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with me at: @alitmoresco

REGAINING CONTROL …of your day, life… Why agency is important for Lyme warriors


by Jennifer Crystal

Agency—or, having a voice, having the power to make free choices about issues related to you or your body—has been a big buzzword in the news lately. I’ve been thinking about the word in the context of my own life.

For nine months, I was in a serious relationship with a man who seemingly understood and supported my needs as a chronic Lyme patient. And then, suddenly and without warning, I wasn’t. He decided he was done and simply informed me of his choice; I had no say in the matter.

Had the breakup happened mutually, or at least over time—with the discussion and effort we’d promised each other—it still would have been difficult, but at least I would have had some agency. And for a patient of chronic illness, that’s not a small thing.

Having the bottom drop out on my personal and emotional life was a sad reminder of the ways it had dropped out on me physically, many times. The chronically ill, and people who suddenly become sick or injured, are stripped of agency. It happens when we get sick without warning, when we can’t control how or if we’ll get better, when we’re dismissed by medical professionals. As a result, it’s that much more frustrating when we can have a say about something, but aren’t granted it.

Everyone deserves a voice. I learned this years ago as a summer camp counselor. During counselor meetings we would discuss issues campers were having due to behavioral challenges. A wise colleague taught us that every child needs four things: love, safety, fun, and power. When one of those basic needs is threatened, kids act out. I readily understood why children need love, safety, and fun. But I realized they need power, too, because they are often told what they can and cannot do; they don’t feel like they have a say over their lives. Giving them agency makes them feel more in control. Campers were less likely to break cabin rules if they helped create them.

When a Lyme Literate Medical Doctor (LLMD) finally put the pieces of my medical puzzle together and made an accurate diagnosis of Lyme disease—in addition to the co-infections babesia and ehrlichia—I at last felt I was heard and validated. Treatment was long and arduous and I had little control over how I felt day to day, but as I regained strength, I also regained agency. Over time, I could rely on my body more. I eventually knew when I would have good energy and when I wouldn’t, and learned habits to promote the good energy. I learned to speak up for my needs. Tick-borne illnesses were no longer completely running my life.

Then the bottom dropped out again: I relapsed. I fell into a pit of despair, not only because I was physically back at ground zero, but because I’d had no say in getting there. Sure, I’d taken on a lot and gotten overly stressed, factors that I now know can play a role in relapse. But the relapse itself was not my doing. That was up to the spirochetes that ran rampant in my body. I hated that I was once again at the whim of my illnesses, not of my own free will. I couldn’t work, live independently, exercise or do anything I wanted to do, and I railed against that loss of freedom.

Cognitive behavioral therapy helped me to take control over little things, even though so much was out of my hands. I had no say as to whether the antibiotics would work, how long it would take for me to get well, or if I even would. But I could control choices that would help my chances of my achieving remission. I could parse out my energy. I could limit screen time that riled up my neurological symptoms. I could eat healthy foods. I could say no to going somewhere or doing something when I didn’t feel well enough to do so.

And I could say no even if I did feel well enough to do something. One night during my recovery, my parents invited me out to dinner. It was a sweet and generous offer. They were surprised when I declined, because I seemed to have good energy that night. Why wouldn’t I go out if I could? But I didn’t want to go out to dinner. I wanted to stay home and have a little time to myself, maybe call a friend. Making decisions about what I wanted to do, instead of feeling like I had to do something just because I could, was an important way of maintaining agency.

We can’t always guard against the bottom dropping out in life. But sick or healthy, it’s important that we allow ourselves agency over those small things we can control. And it’s especially important for us to respect others enough to give them a say over matters that pertain to them or their bodies. We all want to take part in our own lives, not have life just happen to us. Everyone deserves that power!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

lyme education

Lyme Education: New Canaan, CT

TICKED OFF! INVASIVE PLANTS AND LYME DISEASE – A SURPRISING CONNECTION

Aaron Lefland, executive director of New Canaan Land Trust, surrounded by invasive Japanese barberry on Land Trust property. This presentation will look at the ties between the invasive plant, and ticks known to carry Lyme disease.

Date: June 12, 2019
Time: 6:30 pm – 7:30 pm
Location: New Canaan Library, 151 Main Street, New Canaan, CT 06840
Learn more: https://newcanaanlibrary.org/event/ticked-off-invasive-plants-and-lyme-disease-a-surprising-connection/

Reframing Restrictions

by Jennifer Crystal

A few months ago, someone told me that my life has a lot of restrictions.

From a certain perspective, this statement seems true. To thrive in the context of chronic tick-borne illness, rather than to merely survive it, I do have to adhere to certain rules that probably seem restrictive to the average healthy person. Before I got sick, I no doubt would have thought such a schedule was restrictive, too.

What exactly are these “restrictions”? I need to nap for a couple hours every afternoon. I need to make sure I’m in bed around 10:00 p.m. I don’t eat gluten or processed sugar, and I don’t drink alcohol or caffeine. I pace myself physically, planning out travel and exercise so I can enjoy activities rather than become depleted by them. I avoid over-stimulating events like concerts and fireworks that can rile up my otherwise controlled neurological symptoms. I don’t watch Game of Thrones.

These parameters are what allow me to function. It’s taken time, reassurance, and a perspective shift to recognize these boundaries are ensuring my health. In order to do a lot, I’m stinting myself a little. Without these “restrictions” in place, I would quite simply relapse.

Though I have generally accepted the limits or parameters on my life, sometimes I still do get frustrated by them. I’d prefer not to have to cut an afternoon or an evening short because I have to sleep. I don’t like missing out on things. I don’t want my needs to hold anyone else back, and I try not to let them (“You guys stay out; I’ll take a Lyft home.” “I’ll ski with you in the morning; you stay for the afternoon while I nap.” “I’ll drive separately to the party, so you won’t have to leave early when I do”).

Because I make these efforts, it hurt when someone told me that my life has too many restrictions.

It also gave me pause. I realized restrictions was not a word I had ever used before. I had often used the word “limitations”. When giving a quick overview of my decades-long struggle through misdiagnosis, diagnosis, treatment, relapse, and remission, I have said, “It was really bad for a lot of years. Luckily I’m much better now, though I do still have certain limitations.”

Limitations seems not as negative as “restrictions”, but it’s hardly positive, either. Using it gives other people permission to see my life as limited, when in fact I want them to appreciate the truer glass-half-full version of me.

I don’t have restrictions. I have needs.

Sure, my needs are different from those of others. But the fact is, everyone has needs. Introverts, for instance, need time alone. Extroverts need to recharge with others. Shift workers need to sleep during the day. These are simply things people need to do to live their best lives. To be the best version of themselves.

Sometimes that means putting other people’s needs first, to make sure they’re taken care of, too. Parents need to take time off work when their child is sick. They need to leave a dinner party earlier than they might otherwise have, so they can get their child to bed.

What matters is not what these boundaries of life are, but how they are viewed. Should we bemoan all that we can’t do? Or should we appreciate all that we can do?  I could say, I can’t work a 9-5 job and I can’t celebrate the New Year at midnight, and I can’t go to a Dave Matthews concert anymore. Or I could say, by not doing those things, I can work part-time. I can write. I can avoid brain fog. I can exercise. I can visit friends.

There was a time, when I was completely bedridden, when I couldn’t do anything. I know how lucky I am to have gotten as well as I have. Some Lyme patients are paralyzed. Some have schizophrenia. Other people have cancer and have to endure chemotherapy. There are veterans who suffer PTSD and limb amputation, people who have traumatic brain injuries and strokes and terminal diagnoses.

Even those people can choose how they view their restrictions. Take Jean Dominique Bauby, the former editor of French Elle magazine who suffered a stroke that left him with “locked-in syndrome”. His cognitive function was fine, but the only part of his body he could move was his left eyelid.

So what did he do? He figured out a communication system whereby he blinked letters to a scribe. It was a painstakingly slow process—it took him two minutes to blink out one word—and yet he managed to write an entire book, The Diving Bell and the Butterfly. Instead of being weighed down by his situation, Bauby found a way to shine his light out into the world.

He inspires me to see my own limitations in a new light. When I looked up restrictions in Roget’s Thesaurus, I found a long list of negative words, but in the middle of it, in capital letters, was the word CARE.

To honor your needs is to care for yourself, to free yourself from victimhood and, instead, turn yourself into a victor, a Lyme warrior. To honor your needs is to see yourself as chronically awesome rather than chronically ill.

If someone else can’t see the beauty of that reframing, that shortsightedness is their restriction, not yours.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

tick-borne diseases

Request for Information: Input on NIH Tick-borne Diseases Strategic Plan

Below is a letter from Global Lyme Alliance’s Chief Scientific Officer in response to the NIH’s request for information to their Tick-borne Diseases Strategic Plan

 

As Chief Scientific Officer of GLA, I herewith respond to the solicitation for feedback to the National Institutes of Health Tick-borne Diseases Strategic Plan, which was developed by the Tick-Borne Disease Working Group, a Health & Human Services advisory committee established by Congress in its 21st Century Cures Act. While the plan includes important topics on which research efforts should focus, our position is that it neglects several urgent areas that are of equal or higher importance.

Deficiencies in the current Strategic Plan include:

  1. The lack of any mention under the heading “Basic Research of the need to better understand mechanisms of bacterial persistence both in reservoir species and in the face of exposure to antibiotics and the implications for treatment failure and persistent infection/symptomatology.
  2. The lack of mention under the heading “Diagnosis and Detection” of the need to supplement indirect diagnostic tests, that rely upon the presence of antibodies, with direct tests that detect the presence of pathogen-specific protein antigens or nucleic acid. Additionally, the testing paradigm needs to shift towards multi-pathogen (bacterial, viral, etc.) rather than solely Lyme disease diagnoses.
  3. The lack of mention under the heading “Therapeutics” of the need to develop novel treatment strategies for those suffering from multiple tick-borne and/or opportunistic infections. Additionally, there is a need to explore non-traditional treatment modalities to care for patients continuing to suffer from persistent infection/symptomatology due to initial antibiotic treatment failure.

The list also underemphasizes (1) the ecology and management of ticks; (2) ecological interactions between ticks, hosts, and pathogens; and (3) environmental drivers of tick emergence, spread, and changing risk. Specifically, the plan lacks:

  1. Mention of national surveillance of ticks and tick-borne pathogens that would provide real-world representations of exposure risk in space and time;
  2. Any mention of finding vulnerabilities in the tick/host/pathogen life cycle and of the importance of seeking the means of exploiting such vulnerabilities to control exposure;
  3. A focus on identifying and ameliorating anthropogenic disturbances (land use changes, climate change, habitat degradation, etc.) that exacerbate tick-borne risk;
  4. Recognition of the importance of understanding how both native and non-native ticks (e.g., black-legged ticks, lone star ticks, long-horned ticks, etc.) become invasive, rapidly expand beyond their historic geographic ranges, and potentially share hosts and pathogens; and
  5. A focus on novel and existing methods to reduce tick populations.

It is our institutional view that any set of research priorities on tick-borne diseases in the United States must address these essential issues. We hope that by pointing out these omissions you will be allowed to redress their absence in a final draft of the NIH’s Tick-borne Diseases Strategic Plan.

Respectfully,

Timothy J Sellati

 

 

Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance


Related posts:

GLA Counters IDSA’s Criticisms of Tick-Borne Disease Working Group Report
GLA Comments on TBDWG Report to Congress

diagnosed Lyme disease

I Just Got Diagnosed with Lyme Disease. What Should I Do?

Welcome to the school of Lyme. 6 tips for those newly diagnosed with Lyme disease.

 

by Jennifer Crystal

Every day, I receive emails from people who have recently been diagnosed with Lyme disease. As most of us do when we hear a new medical term or leave a doctor’s office, these people frantically search the web looking for information. Sometimes they come across one of my blog posts. Then they write with questions about treatment, with requests for finding a good doctor and with prayers that I will be able to offer them some hope. Most of all, they want to know: “What do I do to get better?”

Because I find myself offering the same responses to many such patients, I thought I would create a “School of Lyme For the Newly Diagnosed.” Consider this a brief survey course on tick-borne illness, open to anyone who wants to learn the basics of what to do when you get (or suspect) a Lyme diagnosis.

Lesson 1: It’s Lyme, not Lyme’s!

It’s important to know the correct name of your disease! Many people mistakenly call it Lyme’s disease, assuming it was discovered by a Dr. Lyme. In fact, Lyme is named for the town in which it was first detected: Lyme, Connecticut. As for the names of co-infections, those are not as simple, but should still be part of your working vocabulary; we’ll get to those in Lesson 5.

Lesson 2: All cases are different

Everyone’s looking for a one-size-fits-all treatment protocol. Unfortunately, that doesn’t exist, and here’s why: Lyme bacteria, called spirochetes, impact every victim differently. It depends how quickly the infection was caught and diagnosed; how far it’s spread, and to where. The bacteria can affect different organs, muscles, bones and cells in different patients. It can cross the blood-brain barrier and enter the central nervous system. Moreover, there may be co-infections present—the list goes on and on. A Lyme doctor can see a thousand patients and use a thousand different protocols. Telling you what antibiotics I took won’t help you; you need to work with your doctor to figure out the best combination for you.

Lesson 3: Find an LLMD

An LLMD is a Lyme Literate Medical Doctor. This is a physician who has trained with ILADS (The International Lyme and Associated Diseases Society). Some practitioners claiming to be Lyme literate may not be versed in all tick-borne disease. The best way to know you are getting good treatment is to make sure your doctor is ILADS-trained. You can find an ILADS-trained physician in your area through Global Lyme Alliance, by clicking on GLA.org/find.

Lesson 4: Get tested for co-infections

Unfortunately, ticks don’t only carry Lyme disease. Many of them harbor what are known as co-infections: other tick-borne diseases besides Lyme. The most common are babesiosis, ehrlichiosis, anaplasmosis, and bartonella, but there are many others. It’s critical that you get tested for co-infections along with Lyme disease. If you are receiving treatment for Lyme and haven’t been tested for other tick-borne infections, you may be fighting only half the battle.

Lesson 5: Take probiotics

Antibiotics kill spirochetes, but they also kill the good bacteria in your gut, which can cause a yeast infection. To combat this, take probiotics (available at any pharmacy or health food store). Important: make sure you take the probiotics at least two hours before or after you take the antibiotics; if you take them too close together, the antibiotics will kill the probiotics.

Lesson 6: Don’t panic

The information available at our fingertips in this internet age is a double-edged sword. You may read stories that terrify you. Remember, every case of Lyme disease is different. If you catch tick-borne illnesses and treat them immediately, chances are you will not suffer as long those who have been sick for many years. Don’t let my story or those of other chronically ill patients frighten you. Do let these stories offer you hope, however, especially if you have been sick for a long time. I am living proof that even the worst cases of tick-borne illness can eventually be wrestled into remission. I am living proof that long-term treatment works. I am living proof that it’s a long road between being bedridden and skiing, but it can be traveled.

Most importantly, know that you are not alone in this fight. There are many of us battling tick-borne diseases right alongside you. We feel your pain. We validate your suffering. And we know that it can get better. There is hope!

 


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock for which she is seeking representation. Contact her at: 

[email protected]

outbreak news_podcast_lyme disease

Podcast: Outbreak News Interview on Lyme Disease, TBDWG, and IDSA

Robert Herriman with Outbreak News interviews GLA’s Chief Scientific Officer Timothy Sellati, Ph.D. to discuss Lyme disease, the Tick-borne Disease Working Group, and the IDSA

 

Read the complete transcript below or listen to the podcast:

 

Robert Herriman: Well hey everybody, this is Robert, and welcome to Outbreak News Interviews. Now the Federal Tick-Borne Disease Working Group recently released their first report to Congress about one year after the panel first convened. The Infectious Disease Society of America, or the IDSA, responded to the report in a letter that contained some criticisms of the report. So what is the Federal Tick-Borne Disease Working Group, what’s in the report, and what did the IDSA have to say? Well joining me to discuss these issues is Chief Scientific Officer for the Global Lyme Alliance, Timothy Sellati, Ph.D. Dr. Sellati, welcome to the show, sir.

Timothy Sellati: Thank you for having me.

Robert Herriman: You bet. So Dr. Sellati, let’s go ahead and start out with some basics ’cause some people may not be aware of this. What is the Federal Tick-Borne Disease Working Group, what’s their mission, and what’s the personnel composition of this group?

Timothy Sellati: So the Working Group was established as part of the Congress’s passage of the 21st Centuries Act, back in December 2016. The intent of that Act was to promote new healthcare initiatives for addressing array of public health issues, and one in particular was the advancement of research on tick-borne diseases. So with that as a backdrop, the US Department of Health and Human Services established the Federal Advisory Committee, the Tick-Borne Disease Working Group. So the Working Group is comprised of 14 voting members, there were seven public members and seven Federal members, and the composition of the Working Group was really drawn from a diverse group of professions. We had individuals that are world renounced research scientists, and physicians from top tier academic institutions and hospitals, subject matter experts from government agencies, as well as key stakeholders from the public sector including patients, and their advocates from several Lyme and other tick-borne disease nonprofit organizations.

Robert Herriman: Okay. So they recently released their first report, it’s a pretty hefty 108-page document. Dr. Sellati, what did you find good and important in the report?

Timothy Sellati: So I think some of the most important or key recommendations out of the report really related to epidemiology, and ecology, that was one of the subcommittees of the Working Group. And there, it was really driven home, the idea that Lyme disease surveillance criteria, which is a criteria that the CDC the Centers for Disease Control and Prevention, use for calculating the number of Lyme disease cases that occur annually. Those really should be used for surveillance purposes alone, and not for diagnostic purposes. The other important take home message from the prevention subcommittee was a focus on development of anti tick feeding vaccines, and really trying to work with key stakeholders to build trust via transparent mechanism to help examine and discuss the past Lyme disease vaccine activities, what some of the issues were with it, and the potential for adverse events so that that information coming from a number of different sources could help inform future vaccine development in Lyme disease. In terms of diagnosis, the real take home message was the importance of evaluating new technologies or approaches for the diagnosis of Lyme disease and other tick-borne diseases because of the inherent limitations with the current two-tier testing method. And the importance of including children in the process of diagnostic test validation as well, because children are particularly prone to the devastating consequences of dealing with Lyme disease, or other tick-borne diseases.

Timothy Sellati: In terms of treatment, I think conduct of additional clinical trials using appropriate target populations where gaps may exist. And there really, the glaring gap is with respect to patients, that experience, persistent symptoms and disability and diminished quality of life following the current standard of care, which is 10 to 28 days of antibiotics. So it’s really important to understand, this really came through as the overall gestalt of the report, that Lyme disease can be treated with antibiotics, but as many as 10% to 20% of infected individuals do not respond favorably to those antibiotics, so they go on to develop what we call Post Treatment Lyme Disease Syndrome, or in some circles, chronic Lyme disease. And so it’s really important to really address that gap in our understanding of how best to treat that patient population.

Timothy Sellati: And then the one last thing, and this was really a common theme that came out of all of the subcommittees’ reports, was the need to allocate increased funding for tick-borne diseases in the areas of research, treatment, and prevention, and have it really pegged to the burden of illness. So proportionally, there is much less federal funding to tackle tick-borne diseases than there are funding for other infectious diseases where the number of cases per year are considerably smaller.

Robert Herriman: Yeah. Now, were you 100% on board with everything in the report, or were there any issues that you had a problem with?

Timothy Sellati: I didn’t have any issues per se, with the report, as much as a concern about one of the recommendations. And this related to the protection of the rights of license and qualified clinicians to use individual clinical judgment to diagnose and treat patients in accordance with the needs and goals of each individual patient. I’m sort of reading that, verbatim almost, and while I don’t have any concerns about allowing licensed and qualified clinicians to care for their patients as they see fit, I also recognize that as a result of desperation on the part of some patients that have dealt with Lyme and other tick-borne diseases for years, if not decades, they are driven to seek out medical care from clinicians using treatment options that have not been carefully vetted by the scientific research establishment, or the medical research establishment. And so there’s a concern that there are some treatment options out there that really have not been proven to effectively treat the symptoms or the diseases that these desperate patients are dealing with.

Robert Herriman: Not too long after the release of the Working Group’s report, the IDSA sent a letter to DHHS Secretary Alex Azar, and it contained some criticisms of the report. You responded to the letter in a post on the Global Lyme Alliance website. Can you spend some time talking about that?

Timothy Sellati: Sure.

Some of the criticisms leveled by the IDSA that really caught my attention was that they had significant concerns with the Working Group’s lack of transparency, and minimal opportunities for meaningful public input. And I just didn’t understand the basis for that criticism, given that the Working Group was really comprised of so many different subject matter experts, and physicians that are treating patients, and the patients themselves, that I think the greater concern on the part of IDSA is that perhaps they didn’t have as much input into the report, or the content of the report, that came out of the Working Group’s extensive efforts.

Timothy Sellati: The IDSA also suggested that some of the recommendations of the working group would “cause significant harm to patients in public health,” and they really urged Alex Azar to ensure that the Federal government response to tick-borne disease’s fallacy rooted in the best available scientific evidence. And you know, part of the problem is in the controversy surrounding Lyme disease, is that the IDSA takes a strict parochial approach to considering Lyme disease, and the consequences of infection with bacteria that causes Lyme disease. From their perspective, they think Lyme disease, or promulgates this idea that Lyme disease is easily treated, and it’s easily diagnosed, and only very rarely does it result in lasting consequences of infection. But there is more and more well established scientific evidence in the main stream literature that argues against that very narrow understanding or narrative that IDSA wants to push forward.

Robert Herriman: Now, going to your first point, on the Working Group, is there any former or current IDSA members on that Working Group? I mean, do you know that?

Timothy Sellati:  Yes, I believe there are.

Robert Herriman:  Okay.

Timothy Sellati: I believe there are. But on the flip side, there are also, from what I understand, members of the ILADS organization as well. The composition of the subcommittees also was careful to include research scientists and physicians that really span the spectrum from IDSA on one of the end of the spectrum, to ILADS on the other. So I really do think that within the limited, within the capabilities of the Working Group, they were as intent as possible, in terms of hearing the voices of a wide variety of individuals. And again, to some extent, maybe IDSA would like to have had a larger bullhorn in terms of influencing the Working Group’s final report to the Congress.

Robert Herriman: So I just take it from your previous answer, that you don’t think most of the IDSA criticisms really hold a lot of water?

Timothy Sellati: No. No, I really don’t. And that’s what really spurred me to write this rebuttal in the first place. Again, I believe many of IDSA’s criticisms stem from the fact that the overall content of the report doesn’t necessarily fit into their mantra that Lyme disease is easy to diagnose, it’s easy to treat, and only very rarely results in lasting consequences of infection. So when you come into trying to solve a problem with that mindset, it limits how you approach trying to solve that problem.

Robert Herriman: Okay. Well, for the audience if you haven’t seen any of this, I will put up a link to Dr. Sellati’s rebuttal on the website when I publish the podcast, and I’ll also put up a link to the IDSA letter, and you can read it, and you can judge for yourselves. Dr. Sellati, any final thoughts on any of these issues?

Timothy Sellati: Yes, I’m glad you asked. So there is one final thought. As far as the report is concerned, I think there was a very important section in the report titled, “Looking Forward,” and in my opinion, I think one of the most important take home messages from that section was the need to develop and disseminate more comprehensive clinical education that highlights the diversity of symptoms that Lyme and other tick-borne disease patients might present with, expand the geography of infecting tics, and also the limitations of the current testing procedures. So I think if we do a better job of communicating to clinicians, and maybe even at the level of medical school students, the complexity of Lyme disease, and what some of the true limitations are in terms of prevention, diagnosis, and treatment, they will be better prepared to take care of the diversity of patients that they see during their practice.

Robert Herriman: Well very good. Well, I wanted to thank you Dr. Timothy Sellati for joining me to discuss these very important issues, I appreciate it, sir.

Timothy Sellati: Thank you very much.

catherine brissette_meet the researcher

Meet the Researcher: Catherine Brissette, Ph.D.

MEET THE RESEARCHER IS A BLOG SERIES TO INTRODUCE GLA-FUNDED LYME DISEASE RESEARCHERS MAKING A DIFFERENCE IN THE FIGHT AGAINST LYME DISEASE.


#MEETTHERESEARCHER
NAME: Catherine Brissette, Ph.D.
TITLE: Associate Professor, Biomedical Sciences
INSTITUTION: University of North Dakota

Catherine (Cat) Brissette received her B.S. degree in Zoology from Louisiana State University, her M.S. with Dr. Paula Fives-Taylor at the University of Vermont, and her Ph.D. from the University of Washington for her work with Dr. Sheila Lukehart on interactions of oral spirochetes with the gingival epithelium. She continued work with spirochetes as a postdoc with Dr. Brian Stevenson at the University of Kentucky, where she switched to the Lyme disease spirochete Borrelia burgdorferi. Her work with Dr. Stevenson involved studies of outer surface adhesions and regulation of virulence factors. Cat accepted a faculty position at the University of North Dakota in the Department of Microbiology and Immunology (now part of Biomedical Sciences), where she continues her work with pathogenic Borrelia species. Her lab is particularly interested in understanding why B. burgdorferi has a tropism for the central nervous system; that is, why the B.burgdorferi’s surface proteins interact with the hosts’ extracellular matrix, cells, and components of the immune system, and the regulatory mechanisms controlling the expression of these infection-associated proteins.

Dr. Brissette is also a member of GLA’s esteemed Scientific Advisory Board.

Drs. Eva Sapi, Ali Divan, Catherine Brissette, Janakiram Seshu, and Mayla Hsu, GLA’s Director of Research and Science, at GLA’s Lyme Disease Research Symposium 2017

GLA: WHAT MOTIVATED YOU TO FOCUS ON LYME AND TICK-BORNE DISEASE RESEARCH?

CB: My Ph.D. work involved a different kind of spirochete (one involved in periodontal disease); the challenge of working with a different pathogen (the agent of Lyme disease) was exciting.

GLA: WHAT ARE YOU WORKING ON NOW?

CB: We are working on several different aspects of neurological Lyme disease. More specifically, how the bacteria gets into the central nervous system in the first place, how the immune system responds, and how the bacteria adapt to that pressure. We have recently demonstrated that aspects of Bburgdorferi meningeal infections can be modeled in laboratory mice, which opens up a lot of research avenues. In particular, we are interested in the behavioral changes that occur as a result of meningeal infection. For instance, anxiety and memory problems are often reported by Lyme patients, particularly in people with long-term disease or Post-Treatment Lyme Disease Syndrome, and we want to understand how the Lyme disease bacterium and the host immune system contribute to these devastating symptoms. Having a small animal model allows us to more easily test potential treatments and interventions in the lab, prior to testing in people.

GLA: ARE YOU CONFIDENT WE WILL FIND A CURE?

CB: Absolutely. Lyme researchers, like Lyme patients, are tenacious and persistent. We won’t stop.

GLA-FUNDED RESEARCH GRANTS WITH DR. BRISSETTE INCLUDE:

  • “Adverse outcomes in gestation as a consequence of immune responses to B.  burgdorferi infection during pregnancy” (2017-18)
  • “Control of Bb DNA expression” (2016-17)

PUBLICATIONS RE: NEUROBORRELIOSIS

  1. Divan, A., Casselli, T.,Narayanan, S.A., Mukherjee, S., Zawieja, D.C., Watt, J.A., Brissette, C.A., Newell-Rogers, M.K. (2018) Borrelia burgdorferi adhere to blood vessels in the dura mater and are associated with increased meningeal T cells during murine disseminated borreliosis. PLoS One 13(5):e0196893. doi: 10.1371/journal.pone.0196893. PMID: 29723263
  2. Greenmyer, J., Gaultney, R.A., Brissette,A., Watt, J.A. (2018) Primary human microglia are phagocytically active and respond to Borrelia burgdorferi with upregulation of chemokines and cytokines. Front Microbiol. 9:811. doi: 10.3389/fmicb.2018.00811. PMID: 29922241
  3. Casselli, T., Qureshi, H., Peterson, E., Perley, D., Blake, E., Jokinen, B., Abbas, A., Nechaev, S., Watt, J.A., Dhasarathy, A@., Brissette@, C.A. (2017) MicroRNA and mRNA transcriptome profiling in primary human astrocytes infected with Borrelia burgdorferi. PLoS One 12(1):e0170961. doi: 10.1371/journal.pone.0170961. PMID: 28135303 @Co-corresponding authors
  4.  Brissette,A., E.D. Kees, M. Burke, R.A. Gaultney, A.M. Floden, and J.A. Watt (2013) The multifaceted responses of primary human astrocytes and brain microvascular endothelial cells to the Lyme disease spirochete, Borrelia burgdorferi.ASN Neuro 5(3). doi:pii: e00119. PMID: 23883071 Paper highlighted with a podcast: http://www.asnneuro.org/an/005/3/default.htm
  5. Brissette, C.A., H.M. Houdek, A.M. Floden, and T.A. Rosenberger (2012) Acetate supplementation reduces microglia activation and brain interleukin-1beta levels in a rat model of Lyme neuroborreliosis. J Neuroinflammation 9:249. PMID: 23134838

Click here to see GLA’s Research Report, detailing GLA’s research accomplishments

lyme partnership

Together in Partnership: Giving thanks to an amazing community

With 2018 drawing to a close, I want to take a moment to thank you for being a part of our community. Your generous support—whether in research dollars, program participation, or simply standing in solidarity with us as we move closer to a Lyme-free world—is deeply appreciated.

As the leading 501(c)(3) dedicated to conquering Lyme and tick-borne diseases through research, education and awareness, Global Lyme Alliance seeks to bring us all closer to improved diagnostics, more effective treatments, and a cure. Earlier in the year we announced that we had surpassed the $10 million mark in research grant funding. In 2018 alone, we awarded close to $2 million in research grants to 15 researchers at leading national academic and medical institutions.

We are fortunate to have many talented partners. More than 35 are leading researchers from world-class institutions. For many—Drs. Kim Lewis, Ying Zhang, and John Aucott among them—GLA was the first grant-making organization to invest in their research. Our Scientific Advisory Board, comprised of 16 of the world’s top researchers and clinical innovators, works diligently to guide us toward those studies which have the greatest likelihood of delivering significant, marketable advances.

GLA-funded scientists have achieved many advances this year, including progress in the development of a reliable diagnostic test; identifying potentially new therapeutic drugs, and exploring drug combinations that successfully attack “persister” cells, which successfully evade conventional antibiotic treatment, as well as antibiotic-resistant bacteria.

We have increased tick awareness levels through robust educational initiatives involving physicians, teachers, summer camps, and the general public. And we are particularly proud of our partnership with Ivy Oaks Analytics™ which has worked with GLA to reach more than 125,000 children (and their families) at 150 summer camps in 8 states through our “Be Tick AWARE” Program, the only such program of its kind.

A few highlights from 2018

Addressing the room at GLA's 4th annual NYC Gala
« 1 of 16 »

 

Our thanks, too, to colleagues in the Lyme world—including but not limited to Focus on Lyme, Alex Hudson Lyme Foundation, LivLyme, LymeDisease.org—who are vital associates in our largely collaborative effort to address a baleful threat which puts our vulnerable children at highest risk.

Thanks, too, to our passionate fundraisers, including our major donors, event sponsors, our athletic endurance program participants, Education Ambassadors, our thousands of first-time annual donors, and our celebrity partners who have helped us reach more than 10 million people through strategic outreach efforts. I want to single out our newest partner, The Avril Lavigne Foundation, with whom we will grow out vital outreach efforts. And a special thanks to our hard-working Board of Directors, including our newest members Avril Lavigne, Nancy Del Genio, and Peter Norley.

We hope you are as proud of GLA’s accomplishments as we are. If you haven’t done so already, please take a moment to read about our just launched “Lyme is Real” year-end fundraising and awareness campaign. And remember, a year-end gift is fully tax deductible. Together in partnership, we can keep the momentum going to beat this disease!

Happy Holidays,

 

 

Scott Santarella
CEO
Global Lyme Alliance

head above water

Avril Lavigne and GLA: Head Above Water Campaign

Avril Lavigne recently stated that fighting Lyme Disease has been the hardest battle she’s ever fought. If you are reading this post, we have no doubt you understand the sentiment.

The Avril Lavigne Foundation supports individuals with Lyme disease, serious illnesses and disabilities. We are excited to announce that as part of their expanded mission (which will include providing PREVENTION resources, funding TREATMENT and accelerating RESEARCH, in order to TRANSFORM lives), Global Lyme Alliance has recently become The Avril Lavigne Foundation’s newest partner.

Now, WE NEED YOUR HELP!

Avril’s “Head Above Water” charitable t-shirt will benefit the Lyme community as a whole – including GLA! We encourage you to support Avril, The Avril Lavigne Foundation & each other by purchasing yours today!

Buy a t-shirt

Once you’ve received your shirt, follow these three easy steps:

  1. Put your shirt on and take a selfie
  2. Post on Instagram with the hashtags #GlobalLymeAlliance #TheAvrilLavigneFoundation #HeadAboveWater
  3. Be sure to tag us in your post!

We’ll repost a few of our favorites, and everyone who submits a photo will be entered for the chance to win a personally autographed shirt – Avril’s gift to you to thank you for your support! (This is a limited time promotion – so get your shirt before they’re all gone!)

Thank you for your ongoing support of Global Lyme Alliance and thank you in advance for your support of our newest partner, The Avril Lavigne Foundation.


 

nantucket project

EDUCATION: Lyme Disease, The Invisible Illness

Lyme Disease is one of the fastest-growing diseases in the world and has reached pandemic levels.

But when Christina Womble was diagnosed with chronic Lyme disease at the age of 20 after being sick for over 12 years, she was faced with pushback from doctors, her insurance and people close to her.

Join Christina Womble and Scott Santarella, CEO of Global Lyme Alliance, for a look at the stigma behind an ‘invisible illness’ that packs a devastating punch.

Date: May 31, 2018
Time: 7pm
Location:  TNP Library, 123 Mason Street, Greenwich, CT
Registration: Seating is limited; Registration is required.

mary beth pfeiffer

FACEBOOK LIVE: GLA and Mary Beth Pfeiffer

mary beth pfeifferGlobal Lyme Alliance will host a Facebook Live discussion with investigative reporter Mary Beth Pfeiffer, to talk about her new book, “Lyme: The First Epidemic of Climate Change”.

Hosted by Timothy J. Sellati, Ph.D., Chief Scientific Officer, GLA.

Join the discussion on April 12, 2018 at 4pm ET on GLA’s Facebook page.

About the book:

Lyme disease is spreading rapidly around the globe as ticks move into places they could not survive before. The first epidemic to emerge in the era of climate change, the disease infects half a million people in the US and Europe each year, and untold multitudes in Canada, China, Russia, and Australia.

Mary Beth Pfeiffer shows how we have contributed to this growing menace, and how modern medicine has underestimated its danger. She tells the heart-rending stories of families destroyed by a single tick bite, of children disabled, and of one woman’s tragic choice after an exhaustive search for a cure.

Pfeiffer also warns of the emergence of other tick-borne illnesses that make Lyme more difficult to treat and pose their own grave risks. Lyme is an impeccably researched account of an enigmatic disease, making a powerful case for action to fight ticks, heal patients, and recognize humanity’s role in a modern scourge.

How to Show Someone With an Invisible Illness That You “See” Them

by Kerry J. Heckman

Invisible illnesses like Lyme disease are not always detected by your outward appearance. Here are 7 ways that you can show someone with an invisible illness that you “see” them.

Last summer Global Lyme Alliance sponsored an event in Chicago called the Sublyme Soiree. I invited my brother and sister-in-law to come with me. During the event, a doctor spoke about the impact of Lyme disease on his patients. I was so grateful that my family had made the effort to come to the event and that they were able to learn about the impact of Lyme from someone other than me. It was the first time in a long time I truly felt seen.

Invisible illnesses are not easily detected by our outward appearance. Because our illnesses are invisible we often feel invisible to the outside world. We are often mistaken for being “all better” or “not very sick at all.” In addition, many people with invisible illnesses, like chronic Lyme disease and autoimmune disorders to name just a few, experience flare-ups followed by periods of relief, which leads to further misunderstanding. If you have a loved one who has an invisible illness here are some ways you can show them that you care.

Never underestimate the power of snail mail

You know the feeling when you open up your mailbox and among the bills and junk mail, there is a card with your handwritten name on it? It always brightens your day. It’s nice knowing someone took the time to pick out a card or postcard at the store, write in it, buy a stamp and send it in the mail. Sending a card, postcard, or care package to someone who is chronically ill shows you care. Who knows? Maybe your card will arrive when the person is having a bad day and your compassion will make them feel less isolated.

Find a way to have fun on their terms

If you invite someone who’s chronically ill to an amusement park they are likely going to say no. If you invite them to tea, a short walk by a lake, or to a movie, they are more likely to say yes. It depends on their stamina. Some days are better than others. Try to think of an outing that doesn’t require a lot of energy. If the person is homebound, maybe you can binge stream a television show with them while sharing a pint of ice cream.

Remember chronic illness is inconsistent. On a good day people with chronic illness are able to do more but on a bad day, they may not be able to leave the house. The problem is we don’t know when we will have a bad day. It makes it difficult to plan, so try to be understanding if the person needs to change or cancel plans.

Never question a symptom or diagnosis

People with chronic illnesses are constantly being questioned by those in the medical field and also by people close to them. Frequently, we are questioned about our fatigue and pain—two things that can’t be seen and that change from day to day.

If you want to show a person with chronic illness that you care about them, take them at their word. If they say they are tired, they are tired. If they say they are in pain, they are in pain.

Ask about triggers  

Each person with chronic illness has different triggers. Personally, I’m triggered when people joke about my diet choices or comment about antibiotics being bad for me. The reason these are triggers for me is because I don’t want to be on a restricted diet or take antibiotics, but both make me feel better, so I do what I have to do.

For a person with chronic illness, each treatment decision comes with careful consideration and a great deal of anxiety. Once that treatment decision has been made, an outsider adding their two cents only causes more anxiety on behalf of the patient. If you are seriously concerned about a person’s treatment decision there is a way to discuss it without judgment.

Learn something about their illness

There is a wealth of information online about every illness. Take a few minutes and read up on what your loved one is going through from a reputable source. If your friend or family member posts a link with information, click on it and gain some new knowledge.

Recently, my dad alerted me to a new documentary on ME/CFS (Myalgic Encephalomyelitis or Chronic Fatigue Syndrome). I didn’t know he knew that was one of my symptoms. It meant a lot that all those times I was talking about my fatigue, he was listening and wanted to learn more about it.

Attend an awareness event or donate to the cause

If a loved one asks you for a donation or to attend an event for a cause, do what you can to make it happen. We all know how difficult it is to ask for money or time from someone, and when it is related to a friend or loved one’s personal health challenge it can make them feel even more vulnerable. This, of course, is not always possible. There may be financial and time restrictions that are insurmountable. It is not an expectation, but know that it will mean a great deal to the person.

Don’t treat them like they are a different person

When someone is diagnosed with a chronic illness they may change their behavior, but remember they are still the same person. Try not to avoid them or treat them with kid gloves. We may feel different in many ways, so we count on those close to us help us remember who we are.

At the end of the day, one of the most effective things you can do is ask yourself, “If I were sick, what would I want someone else to do for me?” Your friend or family member won’t expect you to do everything on this list. They will be pleasantly surprised if you do one or two of these things.

 


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Are Mold and Mycotoxins Compromising Your Recovery?

By Jennifer Crystal

When I was in elementary school, I developed a barking cough every spring. Loud, disruptive and persistent, the cough drew annoyed looks from teachers and students alike. Hearing me coming down the hall, the school nurse would call out, “Drink water!” But a few sips of water were not the solution to this cough because its cause went much deeper than a simple tickle in my throat. After a visit to an allergist, I learned that I was allergic to a number of seasonal and environmental irritants, including pollen (hayfever), fresh cut grass, dust mites, and mold.

I was given two inhalers, and the cough subsided. Besides some lesser springtime sneezing, I didn’t think much of my allergies after that. I forgot about the mold allergy entirely until I was in my early twenties when the ceiling of the schoolroom in the building where I taught started to leak. Shortly after, the teacher in that room came down with fatigue, migraines and sinus issues. The leaky ceiling had caused mold, which in turn caused my colleague to get sick.

I felt lucky not to be in that classroom. It didn’t occur to me that my room could also have mold spores, and that perhaps a lot of places where I’d worked or lived had also been infested with mold, which tends to hide in unseen areas like behind ceiling panels and in basements. Like Lyme disease, mold can quietly cause damage and create a litany of health problems. Also like Lyme, mold toxins can cause systemic inflammation.

For Lyme patients and others with compromised immune systems, mold, mycotoxins and heavy metals can seriously impact recovery. In his talk titled “Mycotoxins and Chronic Illness: New Insights: The Role of Gliotoxin, the Immune System and Chronic Infections” at the 2017 Boston ILADS Conference, Infectious Disease Specialist Joseph Brewer (of Kansas City, Missouri) said that greater than 95% of chronic illness patients test positive for mycotoxins, and at least 90% recall prior exposure to mold. Symptoms can show up immediately or years later. Due to inhalation exposure, most of these molds live in our nasal cavities, causing infection of the sinuses and lungs. Mold and mycotoxin exposure, as well as exposure to heavy metals such as lead, might directly cause illness, or might suppress the immune system just enough so that a patient can’t fight off acute infection. Dr. Brewer studied two patients with mononucleosis who never got better, and found black mold in their houses.

Throughout my battle with Lyme, I suffered constant sinus infections, ear infections, and bronchitis. I wonder, now, if mold and mycotoxins also played a role. They could have been culprits of these infections, or perhaps they weakened my immune system, making it difficult for me to fight off Lyme, Babesia, Ehrlichia, mono and other acute infections.

Though it took a long time, treatment for tick-borne illness did finally work for me. Other people, though, don’t respond to treatment. They may wish to consider whether mold and mycotoxin exposure is perhaps getting in the way of their recovery. As Dr. Richard Horowitz writes in his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, “Some patients, whether due to their genetics, their total load of these toxins, or their inability to properly detoxify, become ill when the load of toxic substances reaches a certain level.” They might experience symptoms such as “fatigue, fibromyalgia, joint pain, paresthesias, cognitive dysfunction, anxiety, depression, loss of balance and/or incoordination, abdominal complaints, urinary symptoms, visual symptoms, auditory symptoms, changes in weight, increased susceptibility to infection and cardiac symptoms.”

So how does a patient determine if they’ve been exposed to mold or toxins? If they have, what do they do about it? It’s really important to talk to your Lyme Literate Medical Doctor (LLMD) about testing for mold, mycotoxins and heavy metal exposure. Your doctor may recommend intranasal anti-fungal therapy. I use a nasal spray every other day which keeps my allergy symptoms at bay and helps stave off sinus and other infections. A cool mist humidifier during these cold months also helps, but you have to be very careful about cleaning it, or, ironically, it will grow mold!

While most mold lives in our nasal cavities, D.O. Thomas Moorcroft (of Origins of Health in Connecticut) said in his ILADS talk, “The Glymphatic System and its Role in Brain Detoxification,” that 70% of brain detox and drainage comes out of the nasal cavity. To be sure, brain detox is a huge part of recovery from neurological Lyme; once the bacteria has crossed the blood-brain barrier, it causes inflammation and build-up of both live and dead toxins in our craniums. Dr. Moorcroft talked about the importance of glymphatic drainage, also known as deep cervical lymphatic drainage. My integrative manual therapist often uses light pressure of his hands to open up drainage from my brain to my neck. There are also more traditional detox methods, including diets and supplements. Talk to your doctor about what might be best for you, and remember that those big culprits can live in dark, unseen places.

 


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  [email protected]

Coming to Terms With the Truth About My Health

by Emily Croot
#MyLymeLife

Learning to acknowledge my Lyme disease is a powerful gift that only I can give to myself

I recently rewatched one of my favorite TED talks, Susan David’s “The Gift and Power of Emotional Courage.” As I listened to her, I felt like she was speaking directly to me. I have for so long hidden my Lyme illness because I didn’t want to be viewed as broken or damaged. I wanted everything to be good and happy. As David puts it, I valued “positivity over emotional truth,” much to my own detriment.

I don’t like talking about my problems because it means I have to acknowledge they are real. I don’t want to have to say that I’ve been having trouble walking and don’t know why. I don’t want to admit I miss classes because I feel like I’m drowning in exhaustion. I don’t want to tell people I feel unsafe in my body. I don’t want to talk about it because I don’t want it to exist. I have been in denial.

But, as I have been told many times and was reminded by David’s talk, pretending isn’t going to make me a healthier person. Although I don’t want my illness to become my identity, the more I hide it, the more of my persona my illness claims. I am very scared about my future but I am ready to talk about it. In David’s words, “courage is not an absence of fear; courage is fear walking.” (I would say that courage is more like fear hyperventilating on a treadmill on fire but it’s not quite as succinct, is it?)

I plan my day around when I can lie down and simply exist. My life revolves around medication, figuring out how to make the most of my useful hours, and fighting to appear normal to others. Everything I do has to be carefully planned out and even then it doesn’t always work.

I feel like the world is happening around me instead of to me. I feel I have no agency. I feel unsafe in my own body. It’s hard to walk sometimes. I want to exercise and run like I used to. I want to do a lot of things I used to do, but this is my circumscribed life for the moment.

I have no idea what my future holds. Who among us truly does in the long run? Nor do I know how long my recovery process will be. I have a wonderful doctor who believes me and who is by far the best physician I have ever had in my life. But healing is a process which takes time and I don’t quite know what comes next.

But I am still me. I may be swimming in unfamiliar waters, but I can see the lighthouse. It’s a bright and beautiful lighthouse against a cloudy night sky. Its beam is strong and yellow while also warm and soft. It is all the parts of me that I love and can hang onto. It is my friends and family reminding me that I am not in the black waters in which I tread, not really. The lighthouse represents my friends and family, TED talks, books, molecular biology, fuzzy blankets, libraries, wool socks, kitchens and cookbooks, running trails, church choir, friends, and family. I can see all of these things in that wonderful beam of light that’s directing me back to terra firma.

In other words, I am still myself and I refuse to give in. I need to stop pretending that treading water is easy; the pretense only makes it harder. I’m done with that nonsense about pushing my emotions away (seriously, watch David’s TED talk below, it’s wonderful). And I’m done worrying about things I can’t control. I’m ready to keep moving toward my lighthouse.


 

Opinions expressed by contributors are their own.

Emily Croot is a student, writer, and cook splitting her time between New Hampshire and Union College in New York. She wants to help others and change her little corner of the world one person at a time. 

lyme warrior_lyme Q&A

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? Email her at [email protected].

I found a rash, but it wasn’t a bull’s-eye. Should I be worried about Lyme disease?

Yes. You should be evaluated not just for Lyme but for other tick-borne illnesses as well. Lyme disease rashes, known as Erythema Migrans (EM), can present in many different forms and can migrate to different parts of the body months or even years after infection. My initial EM rash was a series of red dots on the inside of my right forearm. When I discovered it at sleep-away camp, the nurse brushed it off as nothing. Had either of us been Lyme-literate, we would have known that I should have immediately been tested for tick-borne disease, especially when I developed hypoglycemia and flu-like symptoms shortly thereafter.

But consider yourself lucky, for while a rash is a telltale sign of Lyme, less than 50% of patients ever get or see one. If you find any type of rash and think you might have been bitten by a tick—or if you have symptoms of tick-borne illnesses—you should see a Lyme Literate Medical Doctor (LLMD) for a clinical evaluation at once. If I’d done so two decades ago, I might have avoided enormous suffering.

I’ve heard of the “Lyme diet.” Does it really make a difference to stick to a special diet when you have a tick-borne illness?

For me, it’s made a big difference. I started a gluten-free, sugar-free diet before I was accurately diagnosed with Lyme and its co-infections babesia, and Ehrlichia. A naturopathic physician had recommended I do so as part of treatment for Epstein Barr virus, which I was also battling. Gluten and sugar can both lead to intestinal yeast overgrowth, which can weaken the immune system.

Once I was diagnosed with three separate tick-borne diseases, it became even more important to stick to the diet. Yeast and sugar can speed up the reproduction of the tick-borne bacteria and exacerbate inflammation in the body. Eliminating—or at least significantly reducing—these foods has allowed me to stay on oral antibiotics for long periods without issues (I also take essential probiotics). I don’t consume alcohol or caffeine. Some people find that eliminating dairy also helps; this only seems to make a difference for me personally if I’m battling an upper respiratory infection. You might try eliminating these foods one at a time to see how you feel. If you stop eating everything all at once, you won’t really know which of the foods is the culprit. Think of it like a science experiment: you can’t have too many variables.

Once you know what foods are best for you to eliminate or reduce, the key is moderation. For three years I stuck so strictly to the gluten-free, sugar-free diet that I refused to even take a bite of chocolate. But how was I going to get well without my favorite food? My doctor helped me to see the bigger picture. He reminded me that dark chocolate is very low in sugar. So I now have one small piece of dark chocolate every day, and on special occasions, I have gluten-free brownies or ice cream sweetened with molasses or agave nectar. If I ate those treats every day, I’d still have a sugar problem, but having them once in a while—and then otherwise sticking to my usual diet, which is full of complex carbohydrates, lean proteins, and lots of fruits and vegetables—keeps me in good shape.

Did you ever suffer from sleep paralysis? If so, what helped?

Yes, and it was so scary because I didn’t know what was happening to me. Sleep paralysis is when the brain wakes up before the body, and the body cannot move. It can be caused by severe sleep deprivation, a common symptom of Lyme disease, and can also be a sign of neurological impairment brought on by tick-borne illness.

I would sometimes dream that I was awake, trying to move my legs and get out of bed, but when I did really wake up, I couldn’t do those things. Other times I’d wake up feeling like my blood was no longer circulating through my body; my limbs were like dead weight against the sheets, and I sensed that my head was being drawn back into the pillow. I’d try with all my might to lift my head; in my panicked state, I thought that if I didn’t, I would slip into a coma.

That never happened, and my body always did eventually wake up. Usually, sleep paralysis subsides in a few minutes. Once my doctor explained the condition to me, I was less fearful when it did happen. It got much better once I started getting more restorative sleep, which I achieved through a combination of pharmaceutical medication, nutritional supplements, cognitive behavioral therapy, and neurofeedback. What helped the most though was getting the Lyme bacteria out of my brain; once I’d been on antibiotics long enough, sleep also improved.

Even now, in remission, I sometimes get sleep paralysis when I’m extremely tired. This is a sign to me that I’ve pushed my body too far and I need to slow down. Scary as sleep paralysis is, I’m grateful to my body for giving me a signal to rest.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

GLA Point of View on New Lyme Disease Study

by Timothy Sellati, Ph.D., Chief Scientific Officer, GLA

A study funded in part by Global Lyme Alliance could spur further investigation into the cause of persistent symptoms, a source of medical controversy.

A controversial aspect of discourse in the medical and scientific community has been whether and how long some patients can suffer from symptoms initially triggered by infection with Borrelia burgdorferi, a bacterial spirochete and the causative agent of Lyme disease.  The underlying question being, can Lyme disease be chronic and are there clinical parameters by which this condition or syndrome can be defined?

Approximately 329,000 people in the U.S. are clinically diagnosed each year with Lyme disease.  Studies have reported a wide range (5 to 30 percent) of these individuals go on to experience Post-treatment Lyme disease syndrome (PTLDS).  PTLDS is a disorder defined as the development of significant fatigue, widespread musculoskeletal pain and/or cognitive difficulties that arise within six months after completion of antibiotic therapy for physician-documented Lyme disease and that last for at least six months.

The latest study to tackle this question, “The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome,” led by John N. Aucott, M.D., (associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center) and funded in-part by Global Lyme Alliance.  The results were published in the December issue of Frontiers in Medicine demonstrating that PTLDS is a real disorder that causes severe symptoms in the absence of clinically detectable infection. Key to the success of this study was the meticulous way in which the researchers gathered prior medical records for evidence of Lyme disease that excluded patients with conditions that may mimic those of PTLDS and whose inclusion would confound interpretation of results.  In a well-curated population of 61 patients, Johns Hopkins researchers found that although physical exam and laboratory tests showed few objective abnormalities distinguishing PTLDS patients from healthy control subjects, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with a poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls.  Perhaps most importantly, the study showed that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement.

An important conclusion drawn from the study is that “As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.”  Aucott cautions that because so little is known about the origins of PTLDS, its underlying cause has remained unclear, and a range of hypotheses exist.  However, with the advent of this study and the ability to unequivocally identify PTLDS patients suffering from persistent symptoms, investigators can begin the search for the cause and biological markers of this chronic Lyme syndrome and, ultimately, a means to prevent its development in the first place.

To review the press release from Johns Hopkins Medicine, click here. 


timothy sellatiTimothy J. Sellati, PH.D. is Chief Scientific Officer at Global Lyme Alliance

As GLA’s Chief Scientific Officer, Dr. Sellati leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis and treatment of Lyme and other tick-borne diseases.

In The Lymelight Episode 5

Welcome to In The Lymelight: a show about…well…Lyme Disease.

In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco and self-certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our fifth episode of In The Lymelight, Alex sat down with Sara Young Wang, a fellow Lyme warrior and career coach who stumbled into her Lyme diagnosis that ultimately changed her life. Alex and Sara chat about the bumpy road through treatment, finding a new career passion and overcoming the mental hurdles that come with living with a chronic illness.

P.S. – Apologies for the audio that’s slightly off at times. We thought the patient story was still valuable for you to hear.

You can follow Sara on her website, here. You can also keep up with Sara’s day-to-day life on Instagram.

A message from Alex and Sarah:

It’s never too late to make a difference. Sarah and I started In The Lymelight to fill a hole that I felt when I was diagnosed with Lyme, leaving me overwhelmed and scared. Our goal is to create a safe space for fellow Lymies to stay up to date on Lyme related information while building out meet-ups around our podcast for our community to connect in person (we held our first one in Chicago last week and brought together 60 Lymies!)

If you enjoy our podcast and want to see a breakthrough in Lyme disease research, please consider donating to Alex’s fundraiser for Global Lyme Alliance, HERE.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

 

Forget Ebola, Sars and Zika: ticks are the next global health threat

by Mackenzie Kwak

Ticks carry a wide array of pathogens – and environmental changes mean they are spreading

Since the beginning of our species we have been at war. It’s a continuous, neverending fight against the smallest of adversaries: armies of pathogens and parasites. As we have developed new ways to survive and stop them, they have evolved ever more complex and ingenious methods to thwart our efforts.

Humans have faced numerous attempts to challenge our dominance on planet Earth , and from the Black Death to the Spanish flu, we have weathered them all. However, since the start of the 21st century, with its trend towards global interconnectedness, these onslaughts are ever-increasing. In the past 17 years we have battled Sars, the Ebola virus, Mers, and more recently the mysterious mosquito-borne Zika virus. These diseases seeming to appear from nowhere and rapidly ravage our populations. One commonality is that they almost always originate in animals before jumping across to people, and few parasites are as good at jumping between animals and people as the tick.

Ticks could be best described as the used syringes of the natural world due to their promiscuous feeding habits. Most ticks go through three stages in their lives and feed on a different host at each stage, whilst simultaneously collecting hitchhiking microbes in their blood meals. Ticks also have one of the widest distributions of any vector on Earth – they can be found on every continent, including frigid Antarctica. This combination of ubiquity and a bad habit for accumulating pathogenic microbes make ticks some of the most dangerous vectors on the planet.

So why ticks? And why now?

Partly, it’s because ticks have been understudied for so long that only recently have we begun to realise just how much they affect our health. It took until 1975 for the infamous Lyme disease even to be formally described, and today the list of microbes found within ticks grows ever larger every year as numerous new species are discovered.

An engorged tick removed from a host. Photograph: Astrid860/Getty Images/iStockphoto

Changing ecosystems are also forcing ticks into closer contact with humans. Perhaps the most immediate changes are being driven by land clearing, which is forcing wildlife into closer contact with humans; with wildlife come ticks and the diseases they carry. Climate change has also been implicated: as the climate gets warmer, some ticks are expanding their ranges into places where cool winter temperatures previously limited their distribution. Geographical boundaries are also being eroded as rapid transport links environments which were previously isolated from one another. This presents easy opportunity for ticks to cross borders and spread to new habitats they may not have previously occupied.

In short, our manipulation of the environment has set the stage for a tick-driven health crisis.

Ticks can carry an extremely wide array of human pathogens, including bacteria, viruses, and protozoa. Within the long list of human ailments caused by ticks, several dangerous diseases stand out.

While the recognition of Lyme disease has led to a greater study of the bacteria which cause it and more frequent testing for patients, it has been a double-edged sword, as its notoriety has overshadowed equally important diseases like tick-borne rickettsiosis (TBR). TBR is caused by a number of different bacteria distributed across the globe. Unfortunately, TBR often presents with signs and symptoms similar to Lyme disease, such as rashes, joint and muscle pain, and fatigue. Although deaths are rare when TBR is treated with antibiotics like doxycycline, when the disease is incorrectly diagnosed or adequate medical infrastructure is lacking, mortalities can still occur.

Babesiosis is an emerging tick-borne disease caused by a protozoan called Babesia, a species related to the microbe which causes malaria. The disease is rarely tested for by doctors and the global levels of human infection are unknown, although some researchers believe that they may be much higher than present rates of diagnosis indicate. Infections can be highly variable, with about a quarter of infected adults showing no signs of the disease, while others will die from the infection. In truth the disease is still poorly understood in humans, which is compounded by the fact that several species of Babesia cause the disease and the signs and symptoms can be wide-ranging and often include fever, fatigue, anaemia, and nausea – all common features of other illnesses.

The distinctive “bullseye” marking caused by a bite from a deer tick. Photograph: anakopa/Getty Images/iStockphoto

Crimean-Congo haemorrhagic fever (CCHF) is perhaps the most terrifying disease spread by ticks, as there are no treatments available, and mortality rates can be as high as 40% in infected humans. To put it into perspective, that mortality rate is similar to untreated cases of Ebola or the bubonic plague. The World Health Organisation views CCHF virus as having a high chance of causing human disease epidemics and has accordingly directed considerable funding towards finding a treatment, although to date none have been developed. The wide distribution of tick vectors capable of spreading the disease coupled with the ability of common domestic animals such as sheep and cattle to maintain the CCHF virus in their blood at high levels means the potential for CCHF to expand into new regions like Europe is highly probable.

While only discovered in 2009, SFTS virus (severe fever with thrombocytopenia syndrome) has sparked widespread fear through much of Asia, especially in Japan where 57 people have died of the disease since 2013. Signs of the disease can range in severity from relatively mild, like fever and diarrhea, to severe, which can include multiple organ failures. The fact that the epidemiology of the disease is so poorly known makes predicting and controlling its spread difficult. It is also known to be carried by at least two cosmopolitan tick species which are spread throughout the world from the UK, to the US, and even Australia. That might sound bad enough, but things are even worse: although the disease typically gets to humans via a tick, from there it can spread to other humans or their pets and back again into ticks who feed on infected hosts.

Ticks are ubiquitous, dangerous, and are coming into ever greater contact with us. We must recognize that the next public health crisis may come from our backyards rather than a remote equatorial jungle in Africa or Asia.


Zoologist Mackenzie Kwak’s research focuses on the biogeography, systematics, and ecology of Australasian ectoparasites. She writes for the science blog on The Guardian, where this blog first appeared.

Opinions expressed by contributors are their own.

My #1 Headache Trigger? Lyme disease

By Jennifer Crystal

Skiing has always been part of my life. I went to a college in Vermont that had its own ski run. After graduation, I moved to Colorado to teach high school, and to become a ski instructor. It was supposed to be the high point of my life, and in many ways it was, but there were also some very low points because I was wrestling with undiagnosed tick-borne illnesses.

One such low found me on the bathroom floor, writhing in pain from an excruciating migraine. The throbbing started over my left eye, working its way up over that side of my head and around the back to my neck. I felt as if my brain was going to explode out of my skull.

“It’s probably from the altitude,” a doctor later told me. In the years since I had started developing strange symptoms—fever, joint aches, exhaustion, hand tremors, hives—I grew accustomed to doctors writing them off with a simple explanation.

But altitude was not causing my migraines. In fact, I was suffering from Lyme disease, Ehrlichia, and Babesia, the last being a tick-borne parasite that consumes oxygen in red blood cells. Due to these infections, a scan would later show that I was not getting enough oxygen to the left side of my brain. Living at a high altitude certainly didn’t help this situation, but the root cause was the fact that my oxygen levels were already compromised by infection.

Babesia is not the only tick-borne disease that can cause headaches; so can Ehrlichia and relapsing fevers. But with or without co-infections, the vast majority of Lyme disease patients complain of headaches as a chief symptom, with pain ranging from moderate to severe. Many patients, myself included, have encountered migraines so debilitating they’re relegated to bed in a dark room due to pain, light sensitivity and nausea. Though tick-borne diseases can cause pain throughout the cranium, migraines are usually focused to one side. As a child, I had four surgeries to correct weak muscles in my eyes, especially on the left, leaving scar tissue over that eye. I later learned that Lyme bacteria, spirochetes, like to hide out in scar tissue, which may explain why my migraines always started over that eye.

So why are headaches so common for Lyme patients? Spirochetes can enter the central nervous system by crossing the blood-brain barrier. This barrier is supposed to protect the brain from infection, but spirochetes are tricky and swift and can coil their way across, causing headaches for their victims.

Lyme is an inflammatory disease, so once spirochetes enter the central nervous system, they cause swelling there. In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Dr. Richard Horowitz equates this inflammation to a fire that ignites heat, redness, pain, and loss of function.[1] Feeling like my brain was going to explode out of my skull was not really hyperbole; my head was indeed swollen, but I just couldn’t see it the way I would be able to if  I’d had a swollen ankle or knee.

At my lowest points of illness, I got migraines several times a week. I tried to try to push through the pain. I wanted to be living my life, teaching and skiing. But I always paid a high price for not listening to my body—or in this case, to my brain. Ignoring the headache only increased the pain, sometimes sending me to bed for two or three days at a time. I got prescription medication, which I learned to take as soon as I felt a headache coming on, rather than trying to wait it out. I also found that staying hydrated, eating foods rich in iron, and stretching gently—to help increase blood flow—sometimes helped alleviate my headaches.

The best treatment, however, was rest. If you have a swollen ankle or knee, you stay off that joint, giving it time to heal. The same is true for your brain. Your head needs time to recover from inflammation, and nothing has helped that process more for me than sleep. Though I rarely get migraines these days, I still get pressure on the left side of my head when I get tired or neurologically overwhelmed. I never want to spend a day in bed, but one is better than being there for several days—and it’s certainly better than writhing on the bathroom floor. A day spent recuperating means more days on the slopes, and I’ll take as many of those as I can get.

[1] Horowitz, Richard I. Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. New York: St. Martin’s Press. 2013. (186)


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  [email protected]

Not Immune

by Erin Walker

Something is Not Right

 

As the wife of PGA TOUR player and major winner Jimmy Walker, I am used to supporting him during challenges. In April of this year, my husband was diagnosed with Lyme Disease.  It is my hope that by providing this insight into how we received that diagnoses and our journey, we can help educate others about this debilitating disease.

In November of 2016, my husband accepted an invitation from a good golf friend (now retired) to the King Ranch to go on a hunting trip. Jimmy is not much of a hunter; I can count on one hand the number of times in our 12 years of marriage that he has been hunting.

The guys had a great trip and the last thing to cross their minds was ticks.  Not being a super avid outdoorsman, DEET was not exactly on his list of things to take.

It is important to mention that at no time during his trip, or any point after, did Jimmy recall seeing a tick on him and never removed an embedded tick. In addition, he never saw the “bullseye rash” that sometimes accompanies a tick bite.  Because he never noticed any of these things, we do not know the exact timeline of the onset of his infection.

After his hunting trip, Jimmy hopped on an airplane and flew to Australia to play in the World Cup of Golf with Rickie Fowler.  When he arrived in Australia, he felt like he was hit with a very severe bout of the flu.  His body ached, he had fatigue and in general, felt terrible.  Jimmy felt fine when he left the U.S. so he didn’t bring any type of pain reliever or anti-inflammatory drugs with him.  After arriving, he was able to find some over the counter pain reliever, rallied through the week resulting in he and Rickie finishing second.

Through the rest of the winter he had flare-ups like the one he experienced in Australia.  I started to find it extremely odd that my generally healthy husband was getting the “flu” every other week. During Christmas Jimmy felt terrible (achy, headache, skin sensitive to the touch) and would nap often.  He was irritable and short-tempered.

Once we arrived in Maui for the start of the 2017 golf season, he felt better, had a bit more energy and his mood improved.  Who isn’t in a good mood in Maui?  But, while in Honolulu for the second week of the Hawaii swing, he was hit with another severe bout of flu-like symptoms and he even considered withdrawing from the tournament.

The diagnosis

This pattern continued throughout the winter. Good days, and bad days. Good hours and bad hours. His mood continued to decline and in hindsight, he has said he was possibly depressed.  We still aren’t sure if the Lyme caused the depression and mood issues, or if it was the fact that he felt awful all of the time. Jimmy had no energy to practice, so his golf suffered.  He didn’t have the energy to play with the kids or help in normal activities around the house.  Getting up to go to the golf course for his tournament rounds was the only energy he could muster and most days he felt like sitting down on the tee boxes in-between holes.

One of the biggest symptoms he was experiencing was brain fog.  From difficulty to remembering simple tasks such as leaving tickets for friends and family, to putting on a pot of water to boil and then leaving the house, he was experiencing these types of symptoms on a daily basis.

jimmy walkerIt has taken us awhile to quantify it, but Jimmy also started to notice what he described as a brain to body “disconnect.” He would especially notice these disconnects on the golf course.  Simple shots that he never had an issue with before were going very wrong.  These symptoms manifested itself in his chipping.  Jimmy traditionally has had an excellent short game, so he wasn’t sure what was going on. The dreaded “Y” word was even suggested.  His patience on the golf course was wearing thin and was prone to being visibly upset during his rounds.

(A side note – It wasn’t until roughly August of this year that we were even sure there was a connection between the Lyme Disease and the brain disconnects, but in July my mother forwarded me an article written in the Martha’s Vineyard Times.  The article cites Harvard Dr. Nevena Zubcevik, who runs a clinic for concussion patients. In the article, Dr. Zubcevik explains how PET scans of concussion and Lyme patients, show that the brain basically looks identical between the two patients. In essence, Jimmy has been playing golf all year with the same type of brain trauma as a patient with a massive concussion.)

After suffering from these symptoms for a few months, he decided to see his general practitioner (GP) for blood work.  At the urging of his sports psychologist, he was tested for Lyme at the same time.

Lyme is not common in Texas.  Getting the testing done in the first place required some mild arguing with his GP. (We have experienced multiple roadblocks since then, including when we tried to get our children tested as a precaution). His GP ran an extensive blood panel and the first positive test we received was for mononucleosis.  Mono is highly contagious and about 90% of the population has been exposed to the virus. Although we were surprised, at least we had an answer.  Or so we thought.

Curious if Lyme test had come back, Jimmy checked in with his GP on Wednesday night of The Masters.

Well, I was going to wait until next week to tell you this, but your test came back positive”, said his GP physician.

Needless to say, it was interesting news to receive as we were walking out the door to the Chairman’s cocktail party and on the eve of the first major of the year.  There was some relief but also confusion.  Was it Lyme? Was it mono? What was going on and what do we do next?

Ticks carry several strains of bacteria that can cause multiple infections and more testing was done to determine if any of these other “co-infections” were also positive.  After several more rounds of blood draws and a crash course in Lyme Disease, we learned that Jimmy had tested positive for Lyme, Mono, two different types of pneumonia, West Nile Virus and a virus common to children called CMV.

For the past four-plus months my husband had been trying to compete at the highest level of his sport with six or more fairly major active infections waging war on his body.  (Ok, so he gets a pass for being cranky, depressed and not really feeling up to doing the dishes at night!)

The treatment plan

Enter the specialty doctors into our journey. As one person on Jimmy’s social media posted, “Welcome to the very confusing and highly controversial world of Lyme!” That was an understatement.

erin walkerThe easiest way for me to explain this statement is by comparing it to cancer.  If a person is diagnosed with cancer they are usually offered options A, B and C. While the options are different, they are closely related.  With Lyme, the treatment options range from A to Z; CDC “routine treatment” to the vastly extreme, experimental and often very costly treatments.  What makes this step in the process even more overwhelming is the patient’s’ decision as to which path they want to take. Even after making a decision, the questions mount. Are we making the correct one? Is it going to work? Is Jimmy going to be able to play golf? Will the treatment make him more sick? A hundred questions without a whole lot of answers.

After talking to three different doctors, we decided to go with the “keep it simple, stupid” approach. He started the traditional Doxycycline therapy, but with the doubling the dose and length of treatment time recommended by the CDC for Lyme.

Being a fairly optimistic person (or he was in denial) Jimmy convinced himself that he could play golf on doxy.  The treatment had other plans.

One common side effect of doxy is sun sensitivity.  Starting a sun-sensitive drug in May is not ideal.  After taking a month just to get to a possible point of treatment, he was ready to get started.

Jimmy played one week of golf at the Players Championship and suffered second-degree burns.  His hands, neck, and ears blistered.  He was not only not feeling well from the Lyme, but felt like his skin was on fire from the doxy.

After The Players, the decision was made to shut down golf until he finished the medication.  No practice because he couldn’t be in sun. No chipping, no putting, no activity; his skin couldn’t handle the slightest sun expose.

While starting the doxy, we also made the decision to add in multiple vitamins, herbs and supplements to his daily routine to try to boost Jimmy’s immune system.  I have mentioned this process on my Instagram, @tourwifetravels.  His daily pill regimen since his Lyme diagnosis has consisted of roughly 40 pills a day.

After completing that hurdle, we decided to wait a few months and hope that the first treatment worked.  Testing for Lyme is highly inaccurate and outdated, so retesting his blood wasn’t  an option.  Most Lyme doctors use a patient’s symptoms rather than blood testing to make a diagnosis. We had to wait and see if Jimmy was going to continue to have symptoms after the doxy treatment.

Two and a half months post doxy, Jimmy was feeling better but nowhere near “normal.” He was still battling bouts of flu-like symptoms. Not for weeks at a time, but still daily.  He has dubbed those symptoms the “Lyme feeling” because he doesn’t quite know how else to describe them.  The flu-like/tired/lack of energy and drive feeling flairs up and goes away.  Often, that feeling and symptoms happen multiple times a day.  The “Lyme feeling” can last five minutes or all afternoon.  We have not determined a distinguishable pattern, nor is there anything that causes a flare up (alcohol, diet, sugar, etc).

By mid-August he was still having flare-ups and we (along with his treating physician) decided to reach out to two additional doctors for some ideas.

The Monday and Tuesday of the Northern Trust tournament week were spent running to Connecticut and Boston to see two different doctors – one a Lyme specific doctor and the other an infectious disease doctor. A more lighthearted “Lyme-fog” part of this journey we have been on is that these doctors appointments were actually supposed to be scheduled for the Monday and Tuesday AFTER Northern Trust and before the Boston tournament started, as to not interrupt his normal practice routine.  Well, Jimmy got the dates mixed up, so we were busy running around the northeast for the first few days of the first Playoff event. This story is a pretty good representation of how the year has gone living with my husband, aka the “absent-minded professor”.

After meeting with both doctors we have decided on a new treatment plan that includes “pulsed” tetracycline therapy; two weeks on the new antibiotic and two weeks off. This treatment will continue for the foreseeable future.

And that is where we stand today. He has done four “pulses” of the new antibiotic and four off cycles.  He is finally starting to feel closer to normal again. He still has bad hours, bad days, while he is on the antibiotics.  This makes sense when you learn more about Lyme, which is a “spirochete” infection.  In basic terms, the antibiotic agitates the infection until the infection gets smart and hides in tissue, blood, etc.  This is why he feels worse on the antibiotic instead of feeling better, and meaning the infection is still active in his body.

Pulsing the treatment is shaving off layers of the spirochete little by little until, hopefully, there is nothing left.  We have definitely learned that this whole ordeal is a marathon and not a sprint!  An infinite amount of patience is needed for the patent, as well as the caregivers.

Moving forward

Although we are both having to temper our expectations, Jimmy is thrilled to finally be feeling about 90% back to normal.  He has the energy to finally workout again and get back to a normal practice routine, which has not been possible for about a year.

This is our personal story.  What works for one person with Lyme, doesn’t necessarily work for someone else. But, the biggest thing we can do is share what we are going through.  We want people to be aware that this strange and horrible disease can happen to anyone.  Just because you don’t live in regions where it is prevalent, does not mean you are immune to this disease that affects over 350,000 new people a year.

While it is not my intention to make this story about me, I believe a caveat is needed. After originally writing this blog post, I was also diagnosed with Lyme Disease on December 15, 2017. Not wanting to make this post another four pages, I will update my blog www.tourwifetravels.com in the next few weeks with my own personal story and continued updates on Jimmy.


Erin Walker

Opinions expressed by contributors are their own.

Erin Walker is the wife of six time PGA TOUR winner and 2016 PGA Championship winner Jimmy Walker, a mother of two young boys, a competitive equestrian athlete and a business owner. Follow Erin on Instagram and Twitter at @tourwifetravels and her site Tour Wife Travels.


Serodiagnostic Testing

GLA POV: Advances in Serodiagnostic Testing for Lyme Disease

by Timothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance

GLA Point of View on “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” published in Clinical Infectious Diseases

 

In 2016, a scientific conference was held at Cold Spring Harbor Laboratory’s Banbury Center to discuss the state of serodiagnostic testing for Lyme disease, from both a historical perspective as well as recent advances in the field. This conference was supported by a meeting grant from Global Lyme Alliance (GLA). GLA, as part of its support, also inspired the topic for the conference; to discuss the adequacy or inadequacies of the current Lyme disease diagnostic testing paradigm. The opinion of conference attendees was detailed in a recent publication by John A. Branda, M.D. of Harvard University, Steven E. Schutzer, M.D. of Rutgers University-New Jersey Medical School, and co-authors, in the peer-reviewed journal Clinical Infectious Diseases.

The article titled “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” clearly articulates the fact we are at a historic turning point where new diagnostic approaches can deliver better performance than the current two-tiered testing protocol that was established for Lyme disease serodiagnosis back in 1994. Issues with poor sensitivity, specificity, and reproducibility inherent in the two-tiered testing protocol, which relies on Western immunoblotting, makes it a suboptimal choice and yet, more than two decades later, this approach remains the standard for laboratory diagnosis of Lyme disease. Branda, Schutzer, and their colleagues highlight several exciting technical and conceptual advances in laboratory diagnostic testing that, if adopted, would significantly improve the accuracy of testing and ease with which physicians can diagnose patients, particularly those in the early stages of Lyme disease.

The article describes a new generation of enzyme-linked immunosorbent assays (EIAs, the first tier of the current testing protocol) that have emerged and offer superior specificity, reproducibility, and ease of interpretation of assay results. The authors suggest that adoption of such NextGen EIAs, as a replacement for second-tier Western immunoblotting, could eliminate or at least significantly reduce the rate of false-positive or false-negative results associated with the second tier of the current testing protocol. Furthermore, coupling the use of multiple NextGen EIAs that target different parts of Borrelia burgdorferi, the bacterial causative agent of Lyme disease, would provide greater specificity than would be obtained with individual EIAs. This well-accepted principle is applied in rapid testing for human immunodeficiency virus (HIV).

The time for the Lyme disease community to benefit from implementing a similar test strategy is long overdue. In fact, in a separate study published by Branda et al. in Clinical Infectious Diseases, it was demonstrated that a two-EIA protocol can be more sensitive in early Lyme disease than conventional two-tiered testing.  GLA has been focused on investing in direct and indirect diagnostic methods using the latest available technologies.

Other key points made at the Banbury Conference include the following:

  1. Beyond improved sensitivity, the two-EIA protocol offers several advantages compared with standard two-tiered testing. The results are obtained objectively by an instrument system, and the information provided to the clinician is straightforward (e., the patient is either seropositive or seronegative), with an interpretation that is less complex than immunoblotting.
  2. Improvements in serologic testing methods or protocols will not address their inability to differentiate active infection from past exposure. Ideally it will be addressed through improved direct detection methods, because direct detection of the microbe is strong evidence of an active rather than a past infection.
  3. Ultimately, it will be advantageous to have both direct and indirect tests available, with direct detection methods favored in the evaluation of patients who present soon after initial infection, or who have been exposed multiple times and have a persistent antibody response, and indirect tests favored when clinical presentation of the primary infection occurs weeks or months after tick exposure.
  4. Although several next-generation EIAs are FDA-cleared as first tier assays, none is currently cleared as a second-tier test in place of immunoblotting. Currently, the Centers for Disease Control and Prevention (CDC) recommends that only laboratory tests cleared or approved by FDA be used to aid in the routine serodiagnosis of Lyme disease. Thus, an important next step for widespread adoption will be for assay developers to provide performance data establishing that their assay is equivalent to, or better than, the current reference standard, which is the two-tiered testing with immunoblots.

timothy sellatiTimothy J. Sellati, Ph.D.
Chief Scientific Officer
Global Lyme Alliance

A noted immunologist and microbiologist, Dr. Sellati has more than 20 years of research experience with Lyme and other tick-borne diseases. As GLA’s Chief Scientific Officer, Dr. Sellati leads GLA’s research initiatives to accelerate the development of more effective methods of diagnosis and treatment of Lyme and other tick-borne diseases.

Chronic Illness is a Big Waste of Time

by Kerry Heckman
#MyLymeLife

Every Sunday evening I get out my pill organizer and about 20 bottles of medication and supplements. I set up a station at my table and start dividing pills into little compartments for morning, afternoon, evening and bedtime. The entire process takes about a half an hour and a lot of mental energy. It’s not a big deal, but it’s just one example of the time-consuming tasks that go along with having a chronic illness. Things that we have to do that other people don’t have to think about. Each week I spend time ordering and picking up medication refills, making and attending appointments, and preparing special food from scratch. When you’re ill, taking care of yourself becomes a full-time job and everything is done while fighting through brain fog, pain and chronic fatigue.

Mundane tasks aren’t the only reason chronic illness is a waste of time. A lot of time and attention goes into self-care. It’s important but it still takes essential time out of the day. Every morning I meditate, do a few yoga poses, and use a detoxification technique called dry brushing. Then, in the evening, I spend at least a half an hour in an Epsom salt bath and prepare an essential oil diffuser to run while I sleep. Some Lyme patients sit in an infrared sauna or use an ionic foot bath. It’s great for our health, but it all takes precious time.

A big chunk of our time also goes to researching symptoms and treatments. Because research on Lyme disease and other chronic illnesses is lacking we are forced to do a great deal of learning on our own. This is done by reading books, articles, blogs, and message boards, in addition to communicating with others with similar symptoms. This can often lead to a rabbit hole and eat up hours at a time, especially since a lot of information on the internet won’t be relevant to you. On the whole, however, it’s time well spent, but it can become exhausting.

To top it off, people with Lyme are often forced to sit (or lay in bed) and watch life pass us by. We see our friends on social media hiking in the mountains, playing outside with their kids, or crossing the marathon finish line and think, “That could’ve been me if I hadn’t gotten sick.” Many of us have half-finished college degrees or gaps in our resume from when we weren’t able to work. No matter when Lyme strikes there are always missed milestones and lost years.

Recently, I was talking to my husband about how for the past two years we hadn’t been spending much time outside or taking advantage of all the thousands of things to do in Chicago where we live. It was then I realized that for most of the last two years I was either at work or on the couch. Time passes quickly when there isn’t much diversion. I imagine many other people with chronic illness wonder where the years have gone. We’re all waiting for the day we get better and can go back to doing everything we used to do.

In spite of everything, I have a strong drive not to waste precious time. Perhaps it’s because, like many people with Lyme, I’ve been forced to face my own mortality. I often remind myself I only have one life, no matter what circumstances I’ve found myself in. When I feel disheartened about the wasted years, I try to reframe the way I look at time. Lyme is a season in my life. In some seasons we are meant to be active and productive, but in other seasons we are meant to rest and recuperate. I know this season will eventually pass or at least get better.  I think this quote by TK says it all:

Be easy. Take Your time. You are coming home to yourself.

Maybe it’s not about wasted time. Maybe instead it is all part of a process of slowly becoming who you are meant to be. Some people are transformed by radical shift, but maybe people with Lyme need a softer transition. Like the caterpillar becoming the butterfly, we are slowly preparing to take flight.


kerry heckmanOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Words Heal. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

gla

Video: GLA CEO Scott Santarella’s speech at the 2017 GLA NYC Gala

Scott Santarella’s speech from the gala highlights GLA’s mission and some notable accomplishments in the past 12 months

Good evening. I am Scott Santarella, CEO of the Global Lyme Alliance. It’s an honor to be here tonight with all of you. To those of you who are back once again, thank you for your continued support. For those who are new, welcome to Team GLA.

A year ago, I introduced myself as the new CEO of Global Lyme Alliance and talked about the injustice associated with Lyme disease—the lack of disease awareness, inadequate diagnostics and limited treatment options for patients—all of which, we agree, are completely unacceptable!

I also shared with guests the responsibility we all share to do something when we see inequities in society, especially as it related to underfunded, underserved, and often stigmatized diseases.

And most unequivocally when the health of children and families are at risk, of which, all these, Lyme disease is very much guilty.

As we promised, and thanks in part to your support, GLA has been busy putting our words into action.

Over the last 12 months we have been tackling the injustices associated with Lyme disease with great success and measurable impact, best described by these numbers:

From 2 to 11

The number of countries from which GLA receives donor support, evidence our impact is worldwide.

From 22 to 50

The number of states, yes, all 50, from which GLA receives donations, proof positive Lyme is everywhere.

From a few hundred to 12,000

The number of elementary and secondary school teachers across the U.S. that have been given direct access, free of charge, to our Lyme disease prevention and education curriculum, further evidence of the need to educate nationally.

From 40,000 to 100,000

The number of children and families GLA has helped become tick and Lyme aware through our summer camp program offered at 56 summer camps in seven states and growing.

From $1 million to $2 million

The amount of grant dollars, since January 2017, GLA has committed to scientists focused on researching new ways to combat this disease.

From 2 million to 20 million

The number of media impressions GLA has had over the last 12 months through our social media platforms, educational programming, and awareness outreach efforts.

No doubt, we are all in this together … GLA is just getting started …

Recently, we hired a Chief Scientific Officer, Dr. Tim Sellati, who brings to GLA and our research-based mission 25 plus years experience in Lyme research, extensive disease knowledge and a track record of building bridges among scientists, clinicians, industry and government.

We held a successful fundraising event in Chicago in August which will become an annual event, and we have our sights set on major events in Texas, California, and Florida to further our national impact.

Lastly, we received more than 30 research grant applications this year … an indication of interest among the research community to help us solve the challenge of Lyme disease and reinforcing the need for resources to support their efforts.

This is the moment … now is the time to invest in GLA and our mission!

We have the leadership of our Board of Directors to set the strategic plan.

We have the commitment and dedication of our staff and volunteers to enact change.

And … we are all driven by a passion to erase the injustice for those suffering from Lyme and other tick-borne illnesses.

Together we will shift the paradigm of this disease from uncertainty, misunderstanding, and helplessness … to clarity, comprehension, and hopefulness … on a pathway toward a cure. Thank you for joining us, thank you for your support, and thank you for being part of Team GLA.

gla

Click here to donate to our year-end campaign #BePartOfTheCure

“And,” Not “But”: Taking Power Back With One Simple Word

by Jennifer Crystal

It’s all about perspective. Sometimes, changing the way you say something, can change the way you think about it. Writer Jennifer Crystal has some good advice for Lyme patients who need empowerment.

 
Recently a friend complained to me about a co-worker who also happened to be his brother. “He drives me crazy,” my friend said. “But he’s my brother, and I need his help with the business.”

“And,” I replied. “Not but.”

My friend looked at me quizzically.

“If you substitute ‘and’ for ‘but’, it changes the whole meaning of the sentence. It allows both clauses to be true, without being tied to each other. You need your brother’s help. AND he makes you crazy.”

I can’t take credit for this good advice; a therapist gave it to me years ago when I was wrapped up in conflicted feelings about my tick-borne illnesses. I was living with family, largely dependent on them and others, and I was wrestling with a lot of guilt. If I said something like, “My neighbor doesn’t get Lyme at all,” I felt I had to quickly add, “But he did run an errand for me, so I should be grateful.”

Though I was sidelined with a debilitating illness, I didn’t feel like I had the right to complain, because I was getting help and treatment. I added caveats because I felt bad saying anything negative when there was anything positive involved. I didn’t want to seem ungrateful, so I qualified that concern with “but”.

My therapist helped me to see that I was allowed to have both negative and positive feelings about a situation or a person. I could be sad, mad, and frustrated that I was sick. I could also be grateful that I was starting to make some strides in my recovery. By connecting those statements with “and” instead of “but,” I gave equal power to them both, instead of negating one with the other. Of course, sometimes we do need to use the word “but”; it is innocuous in a statement such as, “I tried to go to a movie, but it was sold out.” However, when talking about feelings for a person or situation, “but” implies guilt or shame for having those feelings, while “and” validates them. That can be empowering for a patient who is feeling not so powerful.

This trick can work for any adversity or strife, not just chronic illness. One might say, “That co-worker is so rude to me, but she’s helpful on this particular project, so I feel like I have to put up with it,” or, “My boyfriend can be so controlling, but he does pay most of the bills.” Statements like this show how powerless a person can feel, whether they are struggling with illness, a difficult work situation, or a bad relationship. Shifting “but” to “and” is a way to start taking power back.

If the co-worker is both rude and helpful, the person complaining can recognize the helpfulness as its own entity, which may free them to talk to their colleague about the rudeness as a separate issue. The person in the controlling relationship can appreciate her boyfriend’s financial support, and still have the right to talk to him about power struggles in the relationship.

“And” doesn’t solve problems, but it does help us to look at them clearly. It also allows us to have conflicted feelings without shame. For me, this shift in perspective took away a lot of the guilt surrounding my convalescence. I didn’t need to chide myself for feeling one way, and try to convince myself that I “should” be feeling something else. Instead, I could take ownership of all of my feelings. And that was a very liberating moment!


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

In The Lymelight Episode 3

Welcome to In The Lymelight: a show about…well…Lyme Disease.

 

In the Limelight aims to bring humor and knowledge to an otherwise somber topic with biweekly expert interviews that include, yes, the “heavy” stuff, but also everything in between that is meant to make your day a little bit brighter. Hosted by fellow Lymie and alpaca lover Alex Moresco and self certified iced coffee sommelier Sarah Aiken: we hope you enjoy listening in as much as we enjoy talking.

In our third episode of In The Lymelight, we had the opportunity to sit down with Sarah Greenfield, RD CSSD to chat about something incredibly important to those of us with Lyme disease: gut health. Sarah is a gut health expert that studied under a LLMD and lives in the Los Angeles area. Sarah explained the basics of gut health, breaking sugar addiction, tips on how to heal your body if your medication is making you sick and how the gut is directly connected to the brain and truly rules our body.

While episode three is a tad bit longer than our normal half hour, Sarah provides copious amounts of factual information that can truly make a difference to those of us battling Lyme.

To keep in touch with Sarah Greenfield, RD CSSD, you can check out her Instagram and read her website.


Opinions expressed by contributors are their own.

For interview suggestions, information or just to say hi- you can connect with us on Instagram at @alitmoresco and @saraiken.

 

The Pressure of Platitudes: Patients Are Only Human

by Jennifer Crystal

As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave…Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

One of my creative writing students, a cancer survivor, recently wrote about a time when she snapped at a fellow patient. This was while they were both receiving chemotherapy. A man sat down next to her and attempted to make small talk.

Just wanting to be alone, my weary student made a nasty comment, and he left.

You would think she wrote about this exchange years after it happened because she felt bad about whatever she had said. In fact, she wrote about the experience because it illustrates an important point that often can be missed: patients are only human.

Patients of any serious or chronic illness frequently hear, “You are so brave!” or “You’re such an inspiration!” These statements can be true, and can be nice to hear. As I wrestled through the darkest years with Lyme disease and its co-infections, there were times when I had to be brave: when I got my PICC line in, when I was fighting doctors and insurance companies who didn’t believe me, when I underwent emergency gallbladder surgery. Now that I am in remission, I try to offer inspiration to other patients through my writing, and I’m grateful to hear when I’ve succeeded.

But there were also times when I wasn’t brave, too. Those times when I didn’t advocate for myself, times when I didn’t stand up to someone, times when I wanted to give in to the illnesses. There were and are still times when I am not an inspiration after all: times when I’m grouchy, times when I overreact, times when I snap at someone thoughtlessly. Times when I, like my student, am all too human.

No one can be all one thing all the time. Part of being human is being multi-dimensional. Therefore, blanket statements like “You are so brave!” and “You’re such an inspiration!” don’t capture the full patient experience. Especially when given without context—like when you say it to a cancer patient you’ve just met and know nothing about him or her. In this context such compliments seem disingenuous.

In her book Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties, Laurie Edwards writes, “I fear it’s too easy to lump together platitudes about those who are sick—that we are somehow stronger or better people for having endured pain or extreme obstacles; that because we’re sick, we’re martyrs and capable of serenely accepting challenges, setbacks and procedures without complaint.”[1]

Sometimes we are strong and serene and capable of enduring more than we ever imagined. But usually we withstand obstacles simply because we have no choice.

“Very often, illness doesn’t allow the luxury of courage; pragmatism and practicality dictate the extent of our fearlessness,” writes Edwards. “I take the medications whose side effects I hate because that’s all there is left to do. There is very little room for interpretation, inspiration, or intrepidness in these situations.” As a patient who Edwards interviewed put it, chronic illness makes us better sufferers, not better people.1

Platitudes can also put unintentional pressure on patients to live up to super-human expectations. They may think they have to put on a good face even when they feel awful, or that they have to be brave even when they are scared. Patients wrestle with how they “should” feel or look, especially when they hear that other well-intentioned but off-putting statement, “But you don’t look sick!”

Beyond negating how sick someone is feeling, such a  comment also makes them think they shouldn’t try to look their best when out in public so that people can see how sick they truly are. I can’t imagine the mixed messages model Bella Hadid must contend with, since it’s her job to look beautiful but also to show that she is suffering from Lyme.

So what is a healthy person to say to someone with a chronic illness? My first piece of advice is “ask, don’t tell.” Instead of telling the person what they are, ask them how they feel, both physically and emotionally. Are they feeling brave? Scared? Cranky? Let them know that they don’t have to put on an act for you.

Second, be honest with what you feel and see. If a patient has done something that you recognize to be brave or inspirational, by all means, let them know, but be specific. Say something like, “I think you were brave to look for a different doctor” or “That quote you posted about chronic illness really inspired me to better appreciate my good health.” This way, the patient knows your compliment is genuine. You’ll feel better giving it, and they’ll feel better receiving it.

Finally, remember that the best way to help someone is by empathy. Let your friend or family member know that instead of telling them what to do, how to feel, or what they are, you are simply there to listen and to be with them. Chronic illness strips patients of so much, but it brings to the forefront their humanness. Let the patient know that you, too, are only human, and that both of you walk that journey together.

[1] Edwards, Laurie. Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties. New York: Walker and Company, 2008 (41, 42)


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

At 27 I was fully devoted to my career and would blow off steam from a long day’s work at a kickboxing class 2-3 times a week. It felt good to release negative energy after a stressful day. But in April 2015, I started missing regular workouts because I just couldn’t shake the flu. I had a scratchy throat, mild fever, swollen lymph nodes, muscle aches as well as sudden bouts of vertigo. This would come and go for a few days at a time but I would never actually get sick.

As the months dragged on my health did not improve and my energy was dropping. I couldn’t stay late at work when my job demanded it and would limit social engagements. I felt like my body was telling me, “You’re not getting enough XYZ!!”. If only I could figure out what XYZ was – surely I’d feel better. My new family doctor, a female, thought I was being dramatic and ordered some routine blood tests and a physical exam to quell my fears. It turned out I was deficient in Vitamin D, a common ailment in our cold Canadian climate. I started taking a supplement and carried protein bars since I was also borderline hypoglycemic. Years later I would find out that reactive hypoglycemia is common in Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) patients (Horowitz, 2017).

My bloodwork had come back with a positive Mono-spot test.

Despite my Vitamin D levels increasing and eating smaller, more frequent meals I still didn’t feel like myself, so I kept at it. After a few more rounds of blood work and months later, my family doctor called to say she had some results. My blood work had come back with a positive Mono-spot test. Little did I know, my positive Mono test and host of seemingly unrelated symptoms was a hint at something larger and much more dangerous. Many of us carry viral infections without knowing it and being infected with Lyme disease (and other co-infections) can cause a reactivation. Epstein-Barr is one of the most commonly reactivated viruses. (Horowitz, 2017)

I took about a month off work to recover from Mono. This would help subdue my dizziness but my health would continue to decline over the next nine months. When my symptoms were at their worst, my exhaustion would result in difficulty walking or standing for more than a few minutes. This would later be diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of autonomic nervous system dysfunction. It explained my uncontrolled blood pressure, dizziness especially after standing, brain fog and some of my digestive issues.

My family doctor was tired of listening to my complaints and ran out of specialists to send me to (six in total). Blood tests, MRIs on both my brain and stomach, neurological exams, echocardiograms, Holter monitors and plenty of EKGs – all came back fine. I also investigated other options including the Mayo Clinic, which turned me down. Best Doctors, a second-opinion medical service available through my insurance, diagnosed me with Somatization disorder (it’s all in your head disorder). The only hints in my bloodwork were a consistently raised ANA (anti-nuclear antibodies), elevated liver enzymes and deficiencies in B12, Zinc and Vitamin D, suggesting my body was over-worked and fighting an unknown intruder.

It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me

In the fall of 2016, I decided to see a Naturopath and she wanted us to take Lyme Disease seriously, despite the fact I had tested negative multiple times through the provincial testing protocol in Canada (which is famously unreliable). I sent my blood away to California (IGeneX labs). My result was positive for Lyme Disease and Ehrlichiosis (caused by various types of Ehrlichia formerly called HME, human monocytic ehrlichiosis; the severity of the disease can range from mild to life-threatening. It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me, but it made so much sense when I began to educate myself. My body had been under attack and was crumbling under the pressure. Due to the prolonged emotional and physical stress of those two years, my adrenal system was extremely fatigued, further worsening my sleep, hypoglycemia, and energy. After starting treatment with a Lyme-literate doctor I was also clinically diagnosed with Babesia and Mast-Cell Activation Disorder.

If it wasn’t for my Naturopath I don’t know where I’d be today. I hope that by telling my story someone else will be saved the pain I was caused by Doctors and Specialists who brushed me off and misinformed me about Lyme Disease. Always listen to your body and trust your instincts. Keep searching until you find the answers you deserve.

Chelsea’s Symptom Breakdown:

First onset symptoms: Dizziness, vertigo, lightheadedness, fatigue, feeling ‘rundown’, sore throats, migraine aura, swollen lymph-nodes, hypoglycemia

Recall tick bite/bullseye rash? No; possible rash

Chronic Lyme disease symptoms: Extreme fatigue, insomnia, POTS, low-grade fever, poor circulation, brain fog, stumbled walk, muscle aches, sore throats, inflamed gums, migraine aura, heart palpitations, heart block, heart murmur, low BP/high BP, difficulty breathing/shortness of breath, stiff joints, heightened anxiety, phantom sounds (between sleep and awake), difficulty remembering common words

Diagnosis before Lyme  disease: Mononucleosis, B12 deficiency, Somatization disorder, anxiety

Lyme Disease and co-infections diagnosed by:  Blood test through multiple labs in the USA (IGeneX and MDL) as well as clinically with a Naturopath, also receiving treatment for adrenal fatigue, mast cell infection, and Babesia.


Chelsea is the creator of itslyme.com. Chelsea’s treatment is ongoing and she looks forward to returning to work in the coming months. She is hopeful for a 90-100% recovery and thankful to the Lyme community for the support she’s received.

 

References

Horowitz, R. I. (2017). How Can I Get Better? New York: St. Martin’s Press.

lyme literate doctor

The Dangers of Playing Doctor

by Jennifer Crystal

Being a Lyme-literate patient doesn’t mean you’re a Lyme-literate doctor. It’s important to know the difference.

 

Remember the old TV ad where the actor says, “I’m not a doctor, but I sometimes play one on TV”? Well, I’m not a doctor either, but sometimes I feel like I play one in real life.

I’ve become so well-versed in tick-borne diseases that I can distinguish between symptoms of Lyme and their co-infections; explain in scientific detail the issues with testing; talk biofilms and inflammatory cytokines and Herxheimer reactions. I have explained to actual doctors what it means when Lyme crosses the blood-brain barrier, why spirochetes evade antibiotics and how tick-borne illnesses affect acute infections. I know which blood tests I need to be ordered every month, and I can interpret the results.

I am Lyme-literate. But I am not a doctor. It’s important to remember the difference.

Anyone who has suffered from an illness for an extended period of time becomes knowledgeable about it. It’s a natural consequence of spending so much time in doctor’s offices and in bed. You get to know your symptoms—and the reasons behind them—because you’re living them first-hand. I consider this a positive effect of my illnesses, because I’m an informed healthcare consumer who can work with my doctors to make good decisions for my health. Moreover, I can help spread Lyme literacy by teaching others what I’ve learned.

The downside to this wisdom, though, is that we can start to view everything through the lens of our particular illness. Whenever someone tells me they have a rash, or flu-like symptoms, or idiopathic headaches, I immediately wonder, Could they have Lyme? We Lyme patients all know someone, either personally or in the public eye, who presents with what seem like Lyme symptoms, and we are sometimes too quick to share our opinion of the situation.

These people may very well have Lyme or some other tick-borne infection. I’ve had friends show me photos of bullseye rashes, or tell me stories of symptoms, and I’ve been able to point them to a Lyme-Literate Medical Doctor (LLMD) who has accurately diagnosed them with the disease I could only, as a non-doctor, suspect they had. It’s crucial for me to remember though that my role in that patient’s journey is simply to inform and where possible guide. Only an LLMD can make an actual diagnosis.

When one starts making blanket statements like “Oh you definitely have Lyme” or “That person doesn’t have Parkinson’s; it’s actually Lyme” one runs the risk of feeding into Lyme-related frenzy.  Someone who is new to Lyme recently asked whether LLMDs also feed that frenzy.

“Don’t they all just say everything is Lyme?” she asked me.

Well, no, they do not. A good LLMD will look at both test results and a clinical evaluation to assess whether a person is suffering from tick-borne illnesses or from something else, be it Parkinson’s, multiple sclerosis, or possibly an autoimmune disorder. A knowledgeable LLMD remembers his or her Hippocratic Oath: to admit when they don’t know, and to do no harm.

Lyme patients must do the same. It’s imperative that we help spread Lyme literacy. But we must tread carefully between offering educated advice and playing a role we’re not qualified to fill. Our illnesses are real. Let’s therefore stay true to our real-life duty as Lyme literate citizens: to help educate through our insight and experience, without trying to play the LLMD.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Post Traumatic Growth: Reframing the Trauma of Chronic Illness

by Jennifer Crystal

Jennifer Crystal discusses how you can grow from chronic illness trauma and how it can change your life for the better.

 

After reading one of the most intense chapters of my upcoming memoir—about the downward spiral that led to my April 2007 relapse—a fellow writer said to me, “I see a lot of post traumatic growth emerging here.”

I looked at her quizzically. Post traumatic growth? Didn’t she mean post traumatic stress? That period was one of the most traumatic of my life, and even ten years out, I still get some traditional PTSD symptoms every April: flashbacks, nightmares, anxiety, increased concern that the relapse could happen again. Surely, reading about the initial trauma itself, this writer was talking about the post-traumatic stress that would emerge in the years following the relapse.

But I had heard her correctly. She meant post traumatic growth as she saw it reflected in my writing, especially the parts where I used an older, wiser voice to look back on the difficult event and draw lessons from it. My friend, an Air Force veteran who writes about her deployment to Afghanistan, is familiar with both trauma and reflection.

She’s also familiar with post traumatic growth, a concept that is being used to help veterans not just bounce back after experiencing trauma, but grow from it and change their lives for the better. Developed in 1996 by psychologists Richard Tedeschi and Lawrence Calhoun, the theory holds that “people who endure psychological struggle following adversity can often see positive growth afterward.” As Tedeschi explained in an interview for the American Psychological Association, “people develop new understandings of themselves, the world they live in, how to relate to other people, the kind of future they might have and a better understanding of how to live life.”[1]

These were exactly the kind of changes I  experienced after surviving my relapse. Until that point, I’d always talked about “getting back to life” after Lyme disease. It wasn’t until I went back to ground zero that I realized it wasn’t about going back; it was about moving forward in spite of Lyme. Tick-borne illnesses were coming with me, and I had to figure out a way to neutralize them as best I could their impact on my future.

I’ve always considered myself a resilient person, but post traumatic growth is about more than just resilience. As explained in a March 2016 article in The New Yorker article titled  “Can Trauma Help You Grow?”, “Psychologists have long studied resilience—the ability to bounce back and move on. But post traumatic growth, which has been documented in hundreds of studies, is different; it’s (more about) what happens when trauma changes and deepens life’s meaning.”[2]

Of course, this growth takes time. For me, it took many conversations with my doctor, my therapist, my family and my friends. It’s taken 10 years for me to fully recognize and appreciate the ways Lyme has changed me for the better, such that I can reflect upon those changes in writing.

To chart post traumatic growth, Tedeschi and Calhoun look for positive responses in five areas: appreciation of life; relationships with others; new possibilities in life; personal strength; and spiritual change. I can now attest to positive changes in all of those areas, but I certainly could not have done so in the past when I was stuck in bed, unable to think about anything beyond migraines and joint pains, suffering hallucinogenic dreams only to wake into a living nightmare.

But the beauty of post-traumatic growth is, it’s not supposed to happen right away. In fact, it can’t happen unless you first come to some understanding of your trauma. And here’s the best part: Tedeschi asserts that post traumatic growth is far more common than post traumatic stress disorder.[3]

That’s an assertion I can also attest to. While I’ll likely always have some distress in April, and while I still get nervous about a relapse when my symptoms flare up, those periods are mere drops in the bucket of growth that I’ve amassed in the last decade. Lyme disease has changed me for the better, and I wouldn’t change that for anything.How’s that for irony?

Next week Jennifer will be answering your questions about Lyme disease. Have a question for Jennifer? Email her at [email protected]

 

[1] http://www.apa.org/monitor/2016/11/growth-trauma.aspx

[2] http://www.newyorker.com/tech/elements/can-trauma-help-you-grow

[3] http://www.nytimes.com/2012/03/25/magazine/post-traumatic-stresss-surprisingly-positive-flip-side.html?_r=1


 

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Should I Tell My Employer I Have Lyme Disease?

by Jennifer Crystal

The chronic illness conundrum. When personal issues enter the workplace.

 

One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.

“But my editor doesn’t know I have Lyme,” I replied sheepishly.

“Why not?” he asked.

“I didn’t want her to think I’m not capable of doing my job.”

My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which  I was incapable of doing my job.

Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.

I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.

Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.

The flexibility of my job, however, had its downsides.  I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.

After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.

As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.

She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”

Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.

It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.

It’s quite a conundrum, with no set answer.

One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”

He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.

Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.

I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?

My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

kerry heckman

I’ve Been Sick So Long I Can’t Remember What it Feels Like to be Healthy

by Kerry Heckman
#MyLymeLife

Lyme disease, like a shadow, is always there even if you don’t see it.

 

Every facet of a person’s life is affected by it. It determines when and what we eat, when and how we sleep, how and if we work, how and if we are able to exercise, what our relationships are like, etc. There’s life and then there’s Life With Lyme.

It was 10 years ago, when I had the first sign that something was seriously wrong with my health. At the time I called it a bad shoulder and chalked it up to improper technique while exercising. Two years later, I was in the ER with a rapid heart rate, which was in time diagnosed as a thyroid disorder. A couple of years after that I felt so ill during the summer that I couldn’t get off the couch for two weeks.

Then things started to happen more rapidly, the shooting pain, night sweats, headaches, and blurry. Eventually I was diagnosed with Lyme disease. It’s been ten years of doctor’s appointments, physical therapy, scans, and blood tests.

At this point I can’t remember what it feels like to be healthy.

I forget what it’s like to skip a meal because I’m not hungry and haven’t planned out meals days in advance. I have to eat three meals every day, because I take a handful of medication with each one. Most people can plan simple meals and eat on the go. Since I’ve been eating a gluten-free, dairy-free, and sugar-free diet, meal planning and prep is a big time commitment.

I forget what it’s like to go to an exercise class and push myself to my limit. I used to take cardio fitness classes and enjoy getting my heart rate up as high as it would go. Now, I have to be conscious of how much energy I expend and not deplete myself. When you are healthy, exercise gives you more energy, when you have a chronic illness, it drains your energy.

I forget what it’s like not to have to keep track of meds, supplements, and other treatments.

Every week I spend a half an hour dividing pills into little containers. There are five prescription medications and 10 supplements that I have to keep track of for refills (which is low for most Lyme patients). I have a very detailed calendar of my complementary treatments and doctor’s appointments, that I constantly have to plan my life around.

I forget what it’s like to not have to ration my energy.

In the past there were few limits on my energy. I could plan activities from sun up to sundown. Now I have to look at my days and weeks and determine how much activity I can handle before I make plans. If I have a particularly busy day or week, I need to take a day or two off to recover.

I forget what it’s like to spend money on wants, and not medical bills.

Each month I shell out around $300 for medications and supplements. As for medical bills, I always reach my out of pocket maximum and then have to pay doctors for treatments that are not covered by insurance. My health is priceless, but it sure costs a lot of money. Moreover, I took a part-time job and cut my earnings by a third. It hurts to ponder what that money could buy, so I try to keep my mind off of it.

When I was healthy, I saw the doctor once a year for a check up, then maybe once more times for a vaccine or acute illness.

This past year, I’ve had 68 appointments for either a doctor, treatment, scan, or blood draw. I’m guessing that is low for some Lyme patients and high for others, but that’s  a lot of time out of my life scheduling and attending to appointments that manage my illnesss.

I forget what it’s like to not have symptoms every day.

With Lyme not a day goes by that I don’t have at least one symptom to remind me of my illness. It rotates between pain, insomnia, brain fog, fatigue, headaches, heart palpitations, and some days some combination or all of the symptoms are present. This leads to anxiety about what symptom will manifest next in addition to the other symptoms. It leaves me wishing for one day to pass without a symptom.

So, what is it like to feel normal?

Most people never feel completely normal all the time, even if that unease isn’t health related. There are however many persons who go throughout their life and don’t ever give a thought to the things a chronically ill person thinks about. Normal for me would be to live a healthy life, but for my medical matters to be mere background noise, not the main event.

While I forget what it’s like to be healthy, I also forget what it’s like to live without gratitude for what good health I do possess. I forget what it’s like to live without a community to lean on, and most importantly, I forget what it’s like to take life for granted. I’ve learned how important health is to overall well-being and plan to improve mine in any way possible.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

57 miles

Tackling 57 Miles to Take on the Fight Against Lyme Disease

Allison Donaghy is taking her fight against Lyme disease to the streets, for 57 miles to be exact.

 

As countless thousands prepare for the grueling 26.2 mile New York City marathon this fall, a Washington D.C. area woman has her sights set on a different goal. On November 2 she plans to run 57 miles from the Penn State track in State College, PA to the Bucknell University track in Lewisburg to raise funds for Global Lyme Alliance (GLA).

57 Miles? That distance would be an amazing accomplishment even for the most accomplished athlete. But for Allison Donaghy, who is battling late-stage Lyme disease, the challenge is even more awe-inspiring.

This will be the first 50+ mile run for Donaghy, a 2012 Bucknell alum, who was diagnosed with Lyme in 2016, after several years of searching for a medical answer to her many health issues.

She still deals with many symptoms that could have been prevented if she had been correctly diagnosed at the start, but Donaghy is not one to entertain regrets.

Donaghy, 27, was part of both the cross country and track teams during most of her years at Bucknell, decided to take on the lengthy 57 mile challenge to raise Lyme awareness. “At Bucknell,” she says, “the men’s cross-country team has a tradition of running from one campus to the other, so I am carrying on that tradition through my ultra-distance fundraising challenge.”

Allison Donaghy, North Face Endurance Challenge, Algonkian Regional Park, VA, April 2017

A life-long runner, Donaghy said that prior to being diagnosed with Lyme she had some health issues, but that trying to discover the cause was like a “wild goose chase.” She asked her then-primary care doctor for a Lyme test in 2015. But when only three of the five bands on the test came back flagged (the Centers for Disease Control and Prevention requires five for a Lyme diagnosis) her doctor told her she was probably just stressed. Yet her symptoms persisted and grew worse. Donaghy began losing her hair, felt extremely tired, suffered constant headaches, joint pain and digestive problems.

After several ER visits, she went to the Mayo Clinic in Florida and saw a number of doctors there, but left with no answers. She also saw gastro-intestinal doctors and was told she might have Crohn’s disease. One doctor diagnosed Donaghy with chronic gastritis. “But because I was having so many other non-digestive issues, she urged me to see another specialist, perhaps even a Lyme literate doctor,” Donaghy says. She took the doctor’s advice, found a Lyme Literate Medical Doctor and was diagnosed in short order with chronic Lyme.

“I was relieved I had an answer,” says Donaghy, a freelance writer/editor who works as an assistant manager at Pacers Running in Alexandria, Virginia, “but I wasn’t sure if the treatments would work.” She was put on four months of antibiotics and other medicines, numerous supplements and changed her diet radically.

“I feel a lot better, but it doesn’t mean I don’t have bad days,” she says. “I still deal with symptoms which could have been prevented if my initial doctor had known more about Lyme and I had been correctly diagnosed. But I feel fortunate that I am still able to run and do many things I love, compared to others who struggle with a late diagnosis of Lyme.”

On November 2, Donaghy’s plans to run and walk, stopping every five miles to make sure she has enough nutrition and hydration. She will have a crew on hand during the run to make sure she’s okay and her twin sister, a cyclist, will be riding alongside her.

“I’ve been running for as long as I can remember,” she says, “and running to raise awareness was an easy leap for me.” Nevertheless, she knows it won’t be easy. “I have no illusions that it isn’t going to hurt a lot, but I am excited about the challenge.”

Naturally, she hopes people will donate to support her fundraising effort (see link below). “Some of the stories I’ve read [about Lyme sufferers] are heartbreaking. Their lives are forever changed by the disease. These individuals are the ones who motivate me to run more than anything. I want to make a difference in the lives for those who are so much worse off than me.”

“Allison is truly a Lyme Warrior,” said GLA’s CEO Scott Santarella. “We’re deeply appreciative that she wants to raise awareness and funds that are so important in fighting this and other tick-borne diseases.”

Donaghy says she decided to advocate for GLA because “the organization’s mission to fund research and educate doctors about Lyme disease really resonated with me. I hope that the funds I raise will make a real difference in someone’s life.”


Click here to support Allison’s amazing 57 mile run.


Lori Dennis

Lyme Disease: The View from Canada

by Lori Dennis
#MyLymeLife

Lori Dennis shares insight into the Lyme madness facing Lyme patients in Canada

 

Ever since my adult son fell ill with Lyme in the fall of 2012 and we were plunged into the upside down, inside out, maddening world of ‘Lymeland’, I have witnessed the excruciatingly slow growth of a network of doctors and naturopaths who now treat chronic Lyme disease. For their own protection, most of these medical professionals must deliver care under the radar. In some U.S. cities and states, here in Canada, as well as Australia, Sweden, Amsterdam, and in many other countries around the world, doctors dare not use the “L” word for fear of professional reprisal, which happened several years ago to several of Canada’s finest Lyme literate physicians.¹

Only a few years back, most doctors here in Canada actually insisted that ticks don’t cross the border. Many mainstream doctors still believe this to be true. Here, as in most places worldwide, when you mention Lyme doctors will mock you and turn their backs, emergency rooms will send you home during a medical crisis offering little more than an hour of oxygen, insurance companies won’t provide coverage, family and friends roll their eyes, and politicians will speak in vague but grandiose terms but never hit the mark on what is actually needed now to help Lyme sufferers.

While some doctors in both mainstream and holistic medicine are trying to help, there are not nearly enough medical practitioners in Canada to serve the world’s fastest growing pandemic and patient caseload.

Despite what doctors and politicians tell us, ticks are in fact crossing the border and we do in fact have people suffering from persistent, or chronic, Lyme in Canada. However, Canada is a good 10 years or more behind the U.S. in its recognition and treatment of this disease—which is a gloomy prospect indeed.

While there is no official count of the number of cases here to date, I am told that we can safely guess that our numbers are 10% of that of the U.S. So, if there are 329,000 cases per year across the US (and we all know that is a gross underestimate), then it is safe to say that we have 32,900 cases per year here in Canada.

According to recent vector expansion models,² by 2020, 80% of the Canadian population, which amounts to over 28 million people, will be exposed to the deer tick, the main vector for transmitting Lyme bacteria.

This is why so many of us were painfully disappointed in May when our country’s Health Minister Jane Philpott released the first-ever Federal Framework on Lyme Disease calling for a $4 million investment to establish a Lyme disease research network with the aim of generating new knowledge to improve diagnosis and treatment. This investment is a mere pittance when you consider the huge financial burden that most Lyme patients are forced to assume as they are currently given no choice but to seek medical attention outside the Canadian system.

The framework offers no treatment plan for the tens of thousands who are currently suffering from chronic Lyme disease. Rather, it calls for a focus on surveillance, sharing of best practices, prevention and education. All important, to be sure, but not the immediate priority for those who are currently sick and dying without medical care.

Not only that! Minister Philpott refused to acknowledge 40,000 petition signatures, tens of thousands of comments and thousands of personal letters all pleading for her help, asking her to do right by those who are suffering. Lyme sufferers begged for equitable access to appropriate testing, diagnosis and treatment.

We continue to be left with the full responsibility of navigating this complex and debilitating disease entirely on our own. Here in Canada, there are far too many people who are forced to live with excruciating pain amongst other debilitating symptoms.  Far too many men, women and children who are bed-bound, wheelchair bound and unable to function. Canadians who cannot wait another five years let alone one more year for doctors to provide medical care.

I see the results of these gaping holes every day. Men, women and children suffering beyond description, unable to get treatment, forced to find the funds necessary to cross the border to the U.S., using all their savings, selling their homes, losing relationships, their livelihoods, their dignity and often relegated to suffer in silence because they have a disease that we cannot talk about here.

While our Federal government has offered all the ‘right sound bites’ calling the framework a way to move forward, it is far too meager a commitment to have a substantive impact in this very real health crisis.

Far too many Canadians have no idea that chronic Lyme disease is a global medical crisis.  Our government, by negating the seriousness of this health crisis, may have pulled the wool over the eyes of an unsuspecting public for now, but one day, Canadians will understand that our government has failed to meet a health crisis of the first order.

Dear Minister Philpott. Lyme disease patients deserve so much more. Lyme disease is here now and the number of cases continues to grow in every province across the country. With or without your acknowledgment and support, in the end, it will be the strength that we draw from one another that will allow us to climb out of this rabbit hole, together, whole and healed.

¹ case of “persecuted” Lyme officials
² refer to studies


lori dennisOpinions expressed by contributors are their own.

Lori Dennis is a registered psychotherapist and author of Lyme Madness, available on Amazon. For more information, go to loridennisonline.com

chronic illness

To Be Blunt: How Chronic Illness Made Me More Direct

by Jennifer Crystal

Having a chronic illness can sharpen your communication skills

 

A dear friend of mine passed away from cancer last year at only 38 years of age. In one of many conversations I had with him in the year leading up to his death, I asked how his diagnosis had most changed him.

“I have zero tolerance for bullshit,” he replied.

My friend was patient, humble, and kind. He could—and gladly would—listen to anyone for hours, taking the time to really process what they were saying before offering a thoughtful response. He almost never had a knee-jerk reaction. He also never, ever swore. Therefore, his response to my question stunned me. But it also made perfect sense.

When you have limited energy, as is the case for most Lyme sufferers, you have no time for drama or uncertainty. You can’t waste time analyzing conversations or situations for some mystery subtext, because you don’t have it to give. When you are deciding whether you can shower or do the laundry—but not both—you start to look for the most efficient ways to deal with all aspects of your life, be they physical, mental or social.

My friend recalled a scenario in which a colleague stopped by his office, asking for advice on how to talk to her boss about a certain issue. He remembered getting antsy, because he was sick and had limited time to do his work, but also because he realized that the only person who could adequately answer her question was the boss himself.

He remembered thinking, just go talk to him directly, and then we won’t have to analyze what he might be thinking or what he might have meant by whatever he said.

Knowing how tired my friend was and how hard he was working to triage his life, I didn’t see his thinking as out of character. I saw it as smart. As common sense. As an ability to see the forest for the trees.

I, too, had learned to see the bigger picture while dealing with a long-term illness. I, too, had learned to step back, to ask, what’s really going on here, and how can I best deal with it? In my healthy days I was a chronic over-analyzer. I spent hours, entire days, tearing apart a situation—usually involving a boy—and while I can still fall into that pattern, the repercussions on my health are too severe to keep that mindset for long. I simply do not have the luxury of giving situations the mental energy I used to. I must conserve my mental energies as well as my physical ones. I have no time for bullshit.

As such, having Lyme has made me much more direct. If I have a concern, I communicate it. If I’m not sure what’s going on in a relationship, I ask about it. If I need clarification on what someone said, I ask for it. While I still go to friends for advice, nine times out of ten I go directly to “the boss,” whoever or whatever that might be in a given situation.

Some people are startled by this bluntness. They are taken aback by the directness of my statements. I’ve seen the looks on their faces and watched their uncomfortable responses, and I’ve learned that I sometimes need to soften my directness, to go about it in a way that works for me and for the person I’m addressing. I try to do this by being a compassionate, active listener and making clear that I want conversations to be a dialogue. For example, I might say, “When we were talking earlier, I heard you say_____. I think you meant ______, but want to make sure I understood you correctly, because that statement made me feel ______.” I’ve found that it helps to use “I” statements to put on the onus on myself instead of someone else.

Overall, my candor has been a good thing. It has freed up mental and physical energy. It has allowed me to be a better communicator. It’s helped me to express what I need to without beating around the bush. For years of illness I worried, Well, if I go to that gathering, what will I do when I get overtired and need to leave early? Or, will there be food I can eat at that dinner party? Now instead of wasting energy on anguish, I simply state, “I’m really excited to celebrate with you, but just want to give you a head’s up that I’ll probably only be able to stay an hour or two” or, “I’m gluten-free, but don’t worry about me—I’ll bring a dish to share.”

And that’s it. There are no questions, there’s no wondering, there are no hard feelings. I set my parameters from the get-go, and then move along and have a good time. Like my friend, I’m glad for the change my illness has brought; it’s both liberating and empowering. Try it!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

natural vs pharmaceutical

Natural Isn’t Always Better: Getting Real About Pharmaceutical Medication

by Jennifer Crystal

Our society’s focus on living naturally has created a stigma around the “dangers” of pharmaceutical medications. But for patients with complex illnesses, like Lyme, it’s not that simple.

 

One of the most challenging symptoms of neurological Lyme disease is insomnia. I’ve wrestled with it on and off throughout my two-decade battle with tick-borne illness. During my very worst point, I was literally awake for weeks. In extreme distress, I cried that I didn’t want to die but couldn’t live another second if I didn’t sleep. My doctor prescribed a short course of a heavy-duty sleep medication to knock me out.

“Don’t take it,” a friend cautioned. “It’s such strong medication. Your body has the natural resources to get the sleep it needs. Try some lavender oil or breathing exercises.”

I was way past the point of being helped by natural remedies, yet I shared my friend’s concern. We’d both fallen under the common belief that natural is better. In a society where people are focused more and more on living naturally, a stigma has grown around the “dangers” of pharmaceutical medicine. The message seems to be that “natural is good, medicine is bad.”

But for patients with complex illnesses, it’s not that simple.

Sure, there are benefits to living naturally. It’s healthy to put organic food into our bodies and environmentally-friendly fuel into our cars. Yoga, meditation, and mindfulness practices are great ways to naturally center ourselves. In Lyme treatment, natural supplements often complement our medication regimes.

But natural methods are not always better. For example, some people use the mineral colloidal silver to combat infection. Just because it is a mineral doesn’t mean it’s safe, though. High levels of colloidal silver can permanently turn the skin blue, or cause liver damage. I know one patient who wound up hospitalized in renal failure. Another friend took colloidal silver for bronchitis, which turned into a severe case of pneumonia that required stronger antibiotic treatment than she would have needed if she’d taken conventional medicine.

When you’re fighting a multi-system bacterial infection, pharmaceutical medication is life-saving. Antibiotics kill spirochetes, plain and simple. Some Lyme patients are eventually able to wean off antibiotics once their infections are cleared up, and continue with homeopathic or naturopathic treatments. No one wants to be on medications any longer than their body needs them.

To avoid them when your body does need them, however, is dangerous. A new study by psychiatrist Dr. Robert Bransfield, published in the journal Neuropsychiatric Disease and Treatment, found that there were over 1,200 suicides per year1 related to tick-borne illness. Had I not taken the heavy duty sleep aid to get through the worst of my insomnia, I might have become part of that disheartening statistic.

I didn’t stay on the medication forever. In fact, I only used it for a few days. Then my doctor slowly moved me to a less potent medication, which worked in tandem with my neurofeedback therapy, a non-invasive treatment that relied on my body’s own internal signals to help me heal. My sleep doctor wisely reminded me that Western medicine helps you get through crisis, while Eastern medicine gets at the root of a problem and deals with more long-term effects. Both, he said, are necessary for proper healing.

This can be a hard pill to swallow for people intent on only going the natural route. Take the case of Luitha K. Tamaya, a shamanic practitioner who shunned conventional medical treatments—until she suffered post-partum depression. Her traditional techniques were not enough to see her through this condition. Reluctantly, Tamaya turned to pharmaceutical medication, “a decision that has since had surprising and beautiful results.” The medication helped her heal and, moreover, led her to a new understanding of her more natural beliefs: “I now understand that shamanism can encompass and enrich all of our modern sciences, instead of standing apart from them.”

I have come to the same opinion. What’s needed is a balance of Western and Eastern medical philosophies. I have been on a non-narcotic sleep aid for years. I’ve never had to increase the dose, and it has not caused any adverse side effects. “That’s effective use of medication,” my doctor told me, when I worried I’d been on the medication too long. I continue to complement this conventional treatment with neurofeedback therapy. Similarly, I continue to battle spirochetes and other tick-borne infections with a mix of pharmaceutical, naturopathic and homeopathic remedies.

Only you and your Lyme Literate Medical Doctor (LLMD) can decide what course of action is best for treating your one or more tick-borne illnesses. Your doctor should monitor your reaction to all treatments, whether they are pharmaceutical or naturopathic. As you decide together what’s best for you, just remember, natural is not always better.


1 Bransfield RC. Suicide and Lyme and Associated Diseases. Neuropsychiatric Diseases and Treatment. 2017 Jun; Volume 2017(13):1575—1587


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

heidi buono lyme warrior

A Lyme Warrior Bites Back

Heidi Buono wants others to have a fighting chance against Lyme disease. She is raising awareness about Lyme and other tick-borne diseases through her “Bite Back Against Lyme Run-Walk” in Albany, NY.

 

Nine years ago, on Halloween night, Heidi Buono received the scare of her life.

Although she had suffered from migraines and achey stiff joints in the past, she had simply dismissed her ailments as signs she was getting older. But that Halloween, she suddenly experienced fatigue so overwhelming she was unable to get off her living room couch. As Buono’s symptoms worsened in the days and weeks that followed, she underwent countless medical tests, but these all turned out negative. She couldn’t find a doctor near her Albany, NY home who could help her resolve the mystery.

Barely able to walk or talk and unable to care for her three children, the distraught Buono and her husband scoured the internet for answers, eventually finding a Lyme-literate physician two-and-a-half hours away who diagnosed her with late-stage Lyme and other tick-borne co-infections.

Heidi Buono with her daughter
Heidi Buono, pictured here with her daughter

In the years since, life hasn’t been easy for Buono. All three of her children were diagnosed with Lyme and like most tick-borne disease sufferers their ailments come and go. Not quite three years ago, Buono’s mother—who had been suffering from chronic Lyme—passed away suddenly. With all the upheaval, Buono then suffered a serious Lyme relapse. She gave up her job as a life coach for special education teenagers and moved the family to a new home with a smaller lawn, hoping to reduce their exposure to ticks.

Now Buono is more determined than ever to make something positive out of her struggles. “I really feel it’s my mission in life to help those who are suffering from Lyme disease,” she says. “When someone mistakenly says that Lyme isn’t a big deal, I’m happy to stand up and set them straight about this debilitating illness.”

To raise public awareness about Lyme and other tick-borne diseases, Buono is organizing a “Bite Back Against Lyme: Albany Run-Walk” to be held Sunday, September 10 at The Crossings of Colonie, in Loudonville, NY. Proceeds from the event will benefit Global Lyme Alliance, the nation’s leading nonprofit dedicated to conquering Lyme and other tick-borne diseases through research, education and awareness.

bite back against lymeThe 5K run is open to all ages and abilities and will start at 11 a.m. inside The Crossings of Colonie park and a 1.5 mile walk will follow. Registration for all will open at 9:30 a.m. The Race will cover a flat 5K loop on designated routes, ending back inside the park. The event will be held rain or shine.

Individuals can pre-register for $35 each; families (up to six participants, same household) can pre-register at the family rate of $100. Registration on the day of the event is $40 for individuals and $105 for families. Participants who pre-register by September 1 will receive a free t-shirt.

Buono has organized similar Run-Walk events in the past, most recently in 2014. But today she feels it’s more important than ever to speak out about the danger of Lyme. “Unfortunately,” she said, “even in upstate New York where Lyme poses a very great risk, people—including doctors—don’t seem to get it.” This worries her. “My son’s friend found six ticks on himself, but when he went to the doctor, he was only given two antibiotic tablets—not enough to treat anything, much less early Lyme or other tick-borne illnesses.”

The event plans call for Dr. Holly Ahern—a microbiologist at SUNY Adirondack and co-founder of the Lyme Action Network—to speak at the event.  Albany Massage therapists will offer free massages and there will be plenty of free snacks and bottled water. There will also be a raffle and a gentle Zuma pre-workout.

“We’re excited about this upcoming event,” said GLA CEO Scott Santarella. “In addition to raising awareness and funding—both so important to help fight Lyme and other tick-borne diseases—Heidi’s event will provide an opportunity for those who’ve been affected by these illnesses to come together and find a sense of community and common purpose. Bite Back Against Lyme is all in the cause of finding an accurate diagnostic test, effective treatments and ultimately discovering a cure for devastating tick-borne diseases.”

Learn more about Bite Back Against Lyme Run-Walk: register or email Heidi.

politics lyme disease

Partisan Politics in Lyme Disease

by Jennifer Crystal

This past year we’ve seen our country’s politics become sharply divided, even though our politicians are supposed to be working together for the greater good of the American people. Watching the news, I’m reminded of the partisan politics of Lyme disease: the doctors occupy two divergent camps, the Infectious Disease Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS).

 

Why would there even be two camps of diagnosing and treating Lyme? We don’t hear about that in cancer, or lupus, or rheumatoid arthritis. Sure, doctors may have different opinions on how best to treat these ailments, but there isn’t an overarching political divide that makes it difficult for patients to get an accurate diagnosis or proper treatment in the first place. Why is that the case with Lyme? How can a disease be so controversial?

Friends ask me this all the time. Until they go through it themselves—until they find a tick bite and have to talk about testing and treatment options with their doctors—it’s hard for them to understand the rift, and it’s equally difficult for me to explain it without giving what feels like a lecture. But it’s important for everyone to understand the basics of Lyme politics, so that when they do get a bite or symptoms, they can make educated decisions. As an informed constituent, I will try to provide a layman’s primer on the two “political parties” of Lyme.

IDSA’s guidelines for treating Lyme disease state that most cases can be cleared up with three weeks of antibiotics, and they do not recommend treatment beyond that point or recognize the existence of chronic Lyme disease, which I have long suffered from.

The problem is that not all patients are diagnosed correctly and immediately. Because Lyme tests only look for antibodies against the infection rather than the actual bacteria, they miss 30-50% of positive cases. Adding to the difficulty of diagnosis are the disease’s nebulous symptoms and their staggered manifestation throughout the human body over months or even years.

Unfortunately, doctors following IDSA guidelines rely heavily on these faulty tests. They also look for the “tell-tale” bull’s-eye rash, called Erythema Migrans or EM. However, this rash appears in less than 50% of all Lyme cases, and can also present in different forms and at different periods of the infection. My initial rash was a blotchy series of red dots on my inner forearm. Only years later did bull’s-eye rashes appear on both of my elbows.

Had I been accurately diagnosed with Lyme when I first discovered that initial rash, three weeks of antibiotics would likely have cleared up the infection.

But I wasn’t diagnosed for another eight years. Left untreated, the Lyme bacteria in my body replicated and spread, crossing into my central nervous system. By the time I was diagnosed, three weeks of antibiotics wouldn’t have touched such a severe, multi-systemic infection. Think of it like cancer: a small, Stage I cyst would require simpler treatment than metastasized Stage IV cancer. My infections were late-stage and therefore required more prolonged treatment.

Luckily, I found a Lyme Literate Medical Doctor (LLMD) who was able to treat me effectively. ILADS trains doctors in the complex diagnosis and treatment of Lyme and other tick-borne diseases. ILADS doctors understand the inaccuracy of testing, and therefore they rely on their clinical expertise to make a diagnosis, just as they would for a sinus infection or a cold. They recognize that Lyme often goes undiagnosed and untreated, and that late-stage Lyme requires longer treatment than the stringent IDSA guidelines allow. ILADS has written its own set of guidelines.

Both sets of guidelines include evidence-based research. Why, then, would there be such a discrepancy? To answer that, you have to look at who wrote the guidelines, and their conflicts of interests. As explained in the documentary Under Our Skin, some of the panelists who wrote the IDSA guidelines had connections to insurance companies and pharmaceutical corporations. For financial reasons, they had a vested interest in denying the existence of chronic Lyme disease, and arguing against the efficacy of long-term treatment.

Seeing my illness be denied for reasons that have nothing to do with my health is like watching politicians deny the science of climate change.

In today’s world, we have to dig through “alternative facts” and “fake news.” So what’s real and what’s fake, what’s right and what’s wrong in the Lyme divide? Only you and your doctor can make the best decision for you, but I can tell you my own facts:

Fact #1: If I had been tested for Lyme disease at the time of my tick bite, it might have been negative, even though I later had a CDC-positive test.

Fact #2: Had I seen an ILADS doctor first, he or she could have made a clinical diagnosis despite nebulous test results, and my co-infections could have been taken care of immediately. The next 20 years of my life would have been completely different: I would have had my health.

Fact #3: Had I seen an IDSA doctor at the time of my accurate diagnosis, eight years after the initial tick bite, I would have been given only three weeks of antibiotics, and I would still be very sick. My symptoms would have gotten worse. Today, 12 years later, I would still be bedridden, instead of in remission and living my life.

Fact #4: The treatment my ILADS doctor prescribed allowed me to get well enough to teach, write, ski and paddle board.

Fact #5: My ILADS doctor is well-versed in co-infections, and treated mine effectively. Had I seen an IDSA doctor, my co-infections in all likelihood would have been ignored.

Fact #6: My ILADS-based treatment for chronic Lyme has not been dangerous, as IDSA purports it to be. Long term antibiotics have had no adverse effects, and I have not built up immunity to the drugs. When I get an acute infection, I still take a normal dose of different antibiotics, and react to them just the same as anyone else would. My doctor is careful and cautious, checking my blood once a month to make sure my medications aren’t harming me in any way.

My hope for Lyme is the same as my hope for our country: that eventually we can have bipartisan support, in this case for the common cause of healing people who are very sick. Until then, it’s important for patients, doctors, and those who are one tick bite away from Lyme to arm themselves with the necessary information to make educated decisions, so they will not suffer as I have.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

tough mudder

Tough Mudder and Lyme Disease

by Scott Santarella, CEO, Global Lyme Alliance

I have always been intrigued by the endurance event concept and its connection to charity fundraising. More specifically, I have been a huge fan of Tough Mudder, which is surprising because I hate being dirty, especially hate being wet and muddy, and I abhor running.

 

So I am not sure what I was thinking when I decided to Captain the Global Lyme Alliance Tough Mudder Team. I certainly wasn’t expecting the impact it would have on me personally and I definitely did not predict the perspective it would give me about facing challenges and understanding, even if only slightly, what Lyme patients deal with every day and why we need to eradicate this disease.

The primary reason for my taking on the challenge of Tough Mudder was to support tens of thousands of patients who struggle each day with the insidiousness of Lyme disease, as well as to raise funds and public awareness of GLA’s efforts to eradicate Lyme. And, as an added bonus, it was the perfect excuse to get myself in shape.

So for three months, as Captain of Team GLA, I trained hard, proud of my own determination and initiative. But I was locked in an internal battle, too.  At times I felt powerful. At times I felt weak. There were days when I questioned whether I had the capacity to take on this endurance challenge, and days when I envisioned myself crossing a finish line in triumph.  There were also days when I didn’t think I could train for another minute. All thoughts and feelings I have heard Lyme patients share in their stories: being too weak to get out bed; today is a good day; today is a bad day; I can’t think straight because of my brain fog; my mind is working today; I feel achy and sore; today my body feels normal, and so on. The ying and yang of Lyme disease is endless. Probably the biggest injustice, in my mind, was I had a huge advantage as I could train for my challenge. With lyme disease patients, there’s no training or coaching, and in many cases there is no warning. Nothing can prepare one for Lyme disease and the battles one will face.

Team GLA in action at Tough Mudder in Bethpage, NY

What I learned about participating in a Tough Mudder is that the muddy, twisting, hilly, wet, challenging, obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits. And although I would be challenged for only a few hours, it was a tiny reflection of the challenge Lyme patients must deal with every day of their lives. The path from getting diagnosed and treated to long-standing remission can seem unbelievably long and winding. Doubts and fears that one will never be well again creep in—just as I worried I wouldn’t have the stamina to complete Tough Mudder. So like Lyme warriors do every day, I was was even more determined to test my strength, stamina and grit, if only for a few hours. A small symbolic gesture on my part to mark and publicize Lyme patients’ considerable suffering.

I was lucky. I ran with a team of people, all of whom watched out for one another, especially me as a 50+ year-old who was running, climbing, jumping, and sloshing about with 20 and 30 somethings. They constantly checked on me, made sure I was okay, and waited for me at each obstacle so I would not have to undergo that particularly grueling challenge alone. I was not the slowest, but I knew I was going to need their help all along the way. Unfortunately, for many Lyme patients, they don’t have a team to help them through the often mysterious stages of their journey and that saddened me. For many Lyme patients, they face their challenges all alone, which angers me. Yet, it also inspires me to work harder on their behalf.

Team GLA finished the race, in fact, the team, waited for me before crossing the finish line as I was bringing up the rear. They wanted all of us to cross the finish line together. It was a wonderful, touching moment and I was reminded that the team that is the essence of GLA—our staff, board, researchers, and donors, our patients and their caring families—we are all in this together. It is only through our collective efforts that we can achieve our goals. It is my hope that in achieving our goals we all cross the eradication of Lyme disease finish line together, some day very soon.

 

 

 

 

 

lyme caregiver

Care Versus Overcare: A Fine Line

by Jennifer Crystal

Well-meaning Lyme caregivers can easily cross the line from care to overcare. Here are some simple rules to follow for both patient and caregiver.

 

Recently a friend was going through a difficult time. When she confided in me, I offered her a non-judgmental ear and lots of hugs. I gave advice when she asked for it. Being there for her made me feel good. Indeed, as Doc Childre and Howard Martin describe in The Heartmath Solution, “care inspires and gently reassures us. Lending us a feeling of security and support, it reinforces our connection with others. Not only is it one of the best things we can do for our health, but it feels good—whether we’re giving or receiving it.” [1]

But then, as my friend’s problem became more serious, I became deeply worried about her. Her situation was on my mind often, and I started checking in with her in an overbearing way. I was anxious about her all the time. While my feelings came from a place of love and concern, I had crossed into the dangerous territory of overcare.

Childre and Martin define overcare as “a burdensome state…when care from the heart is bombarded by niggling worries, anxieties, guesses, and estimations from the head.” They caution it is “one of our biggest energy deficits, and it’s at the root of a lot of other unpleasant emotional states, including anxiety, fear, and depression.”

The line between care and overcare is so fine that it can be hard to distinguish the two. However, it’s important to be able to do so, to protect our own well-being and our relationships. This is especially true—and difficult—for Lymies and their caregivers.

While Lymies may take care by following doctor’s orders, we can have a hard time enacting self-care, because we are plagued by feelings of guilt and shame. Instead of being gentle and patient with ourselves, we spend time and energy wondering when or if we’ll get better, beating ourselves up for being sick, and worrying that we are burdens. I spent years doing this. I see now that I was in a detrimental state of overcare, which hindered my ability to get well.

Well-meaning Lyme caregivers can easily cross into overcare, too. Many work tirelessly to care for their children, parents, siblings, or friends who are sick. That much care is greatly appreciated, but can easily be taken too far, to the point where the caregiver gets burnt out. Once they hit that point, they’re not helping the Lymie or themselves. Moreover, when a caregiver over-identifies with a problem, getting too involved and worrying to the point that their own mental health is affected, the patient may feel smothered or guilty. Everyone loses.

So how do patients and caregivers negotiate this fine line? Here are some lessons I’ve learned along the way.

For Lymies:

  • Be a friend to yourself. Be as kind to yourself as you would to a friend going through the same thing. Would you make that person feel guilty or ashamed for being sick? Give yourself the love, care, and understanding you would give to someone else.
  • Give yourself positive affirmations. Instead of berating yourself, try out thoughts like, I’m doing a good job. I’m going to get through this. This is not my fault. Sometimes this disease is two steps forward, one step back, but ultimately I am moving in the right direction.
  • Establish a good support network. This could include a therapist, friends, family members, other patients—anyone who understands your situation, gives you the empathy you need, and can talk through your worries and concerns.
  • Take care of your mental health and your physical health. Any long term illness causes situational anxiety and depression, and neurological Lyme can make them worse. Personally, seeing a therapist and treating my anxiety and depression have helped me to physically heal from Lyme.

For Caregivers:

  • Give yourself breaks. Even if you are the primary caregiver of a patient, make sure you have other people who can fill in for you so that you can take time off.
  • Make time for fun. Don’t just take a break to shower or go to the pharmacy. Take yourself out for an ice cream cone, see a movie, or do an activity you enjoy. You are not neglecting the patient by doing this; you are recharging your own batteries so that you can continue to care for your loved one.
  • Have a support network. Have a therapist, friend, or family member you can talk to about the emotional toll of being a caregiver. Try to direct your worries to this person rather than to the patient.
  • Ask. Never assume that you know what a patient needs. Ask specifically how you can best help them.
  • Don’t smother. No one likes to be fussed over for too long. Depending on your relationship with the Lymie, establish a routine that’s comfortable for both of you: maybe you talk by phone briefly when the patient is feeling up to it; maybe you send one check-in text a day; maybe you stop by once a week for a quick visit.
  • lyme patientRemember, it’s about the patient. As a natural giver, this is one I struggle with the most. My instinct is to help, but I have to first be sure someone wants my help. I have to see if the concern I’m giving is about my need to show I care, or if it’s about the person getting the care they need.

For Both:

  • Remember the airplane rule. On a plane, you have to put your own oxygen mask on first before helping others with theirs. First and foremost, you must always take care of yourself.
  • Ask yourself: is this care or overcare? Keeping yourself in check based on the definitions above will help you to give healthy rather than detrimental care. Checking myself when I went into overcare with my friend helped me to be a better friend to her and to take better care of myself.

[1] Childre, Doc and Martin, Howard. The Heartmath Solution. HarperSanFrancisco, 1999 (159, 165).


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

#teamgla

One Family’s Motivation to Raise Awareness About Lyme Disease

by Global Lyme Alliance
#TeamGLA

Team Gottlieb is running on #TeamGLA in the Tough Mudder for their Mom

Kathie Gottlieb has always loved the outdoors and spent as much time as possible hiking, gardening and riding horses near her New York State home.

So when she started feeling tired and not her usual active, energetic self, she knew something was terribly wrong. She went to numerous doctors searching for answers but, invariably, she was declared “fine” or “stressed” and given an antidepressant since she was “a woman of a certain age,” as she recalls.

When she started feeling tired & not her usual, active, energetic self, she knew something was terribly wrong.

In 2010, after three and a half years of suffering, she was finally diagnosed with Lyme disease. By then she was experiencing fatigue and weakness so pervasive that she was bedridden and had to resign from her job as a language teacher. In the years since she has been able to return to work, but only one and half years before symptoms forced her departure again. (Kathlie Gottlieb, pictured left)

Today she lives with a host of debilitating problems—cognitive defects, significant sleep disruption, overwhelming fatigue, migrating muscle and joint pain, brain fog, tinnitus, neuropathy, digestive issues, plus light and sound sensitivity. As a result, Kathie is unable to attend most family gatherings or other social events—something that deeply pains her and her family.

Lyme really sucks…I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has…

On July 23, Kathie’s three children & her son’s girlfriend will be supporting their mom and Global Lyme Alliance (GLA) by taking on the Tough Mudder Half Long Island Challenge to raise funds for Lyme and tick-borne disease research and education. The Tough Mudder event is a five-mile mud obstacle course challenge that will take place at Old Bethpage Restoration Village in Old Bethpage, NY.

Lyme really sucks,” says Kathie’s daughter, Victoria. “It’s not something to be dismissed as not dangerous to a person’s health. I’ll be the first to admit I didn’t know a lot about the long-term damage it could do before my mom was diagnosed. Now I hate to think that other people will go through what my mom has, along with the family members who are affected in their own way.” (pictured left, Victoria & Kathie Gottlieb)

 

The Gottlieb family (Team Gottlieb) chose to partner with GLA, the leading nonprofit dedicated to conquering Lyme and tick-borne disease through research and education, because “we wanted to support an organization that understands what our family has dealt with for so long now,” said Victoria, “and to support a cause that hits so close to home.” (pictured right, Team Gottlieb: Nick, Victoria, Julian, and Nici)

Why GLA chose Tough Mudder as an official charity partner

While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.

“We feel there’s a special connection between GLA and Tough Mudder because the mud obstacle course tests people to their limits, just as having Lyme tests sufferers to their limits,” said Scott Santarella, GLA’s CEO. “While Tough Mudder challenges people for only a few hours, unlike the full-time suffering of tens of thousands of Lyme patients, we believe the symbolism is meaningful.”

Santarella, who serves as Captain of Team GLA, said that individuals can bring awareness to the challenges of Lyme disease by participating in the event. “We also hope to raise significant funds to invest in innovative scientific research and results driven efforts for the benefits of Lyme disease patients and their families,” he said. Since 329,000 people are affected with Lyme disease annually, Team GLA hopes the July 23 event will raise $32,900 for Lyme disease research & initiatives. (Pictured left, Scott Santarella)

To learn more about GLA’s Tough Mudder event or how you can donate, click here.

 

 

lyme disease

The Roller Coaster of Lyme Disease

by Kerry Heckman
#MyLymeLife

Living with Lyme disease comes with constant ups and downs

 

The MRI results were sitting in my email inbox a week before my doctor’s appointment. I couldn’t bring myself to look at them. Too much was riding on it. As a complication of Lyme disease, I have an infection in my spine, which no antibiotics seem to touch. It’s  been almost three years since it was discovered and no doctors can find a solution. Six months earlier, though, I started a new antibiotic and my doctor thought this was “the one.” I didn’t want to learn it was just another failure.

As soon as my doctor came into the room I knew my MRI results weren’t good. He had a serious look on his face, in sharp contrast to his usual jolly demeanor. I listened while he told me there was no change in the results and that maybe it was time to consider a more aggressive treatment. Getting this news was like being at the top of the highest peak on a roller coaster and then plummeting suddenly to its lowest point. I felt the same queasiness in the pit of my stomach, but it wasn’t a thrill. All the hope I’d built up, only left me disappointed.

I officially got on what I refer to as the roller coaster of Lyme in January of 2016, but like most Lyme patients I’d been on a health roller coaster most of my life. The ups and downs have been unrelenting. There are the short-term ups and downs of daily life, like when you have a good day immediately followed by one where you can’t get out of bed. And there are the long-term ups and downs of treatment. I start to make progress and then have a huge setback, like the one I had last month when I got the results of my MRI.

As Lyme patients, we try to make sense of the ride. We wonder if a peak or valley is due to a new medication, changes in seasons, or our hormone cycles. All these things do have an impact, but then there are times where there is no reason at all. Those are some of the lowest lows, because we don’t know what to do, lost with no answers and no momentum to get back up the hill.

With chronic illness, the jarring ups and downs take an emotional toll. We stop trusting our progress and are always waiting for the other shoe to drop, because, unfortunately sometimes it does. Imagine feeling the best you’ve felt in months, only to have a new symptom crop up out of nowhere. You stop trusting your good days, which can turn so quickly into bad days. There isn’t a day when you just feel at peace. This is why the question, “How are you feeling?”, has been such a hard question for Lyme patients to answer. I always feel like I’m lying, because people usually only see me on my good days, when I’m more likely to say I’m feeling well. On my bad days, I don’t leave the house.

To date, the roller coaster’s the best metaphor I’ve found to describe what it’s like to live with Lyme. It’s not an illness where you have steady forward progress, instead you go up and down, hopefully trending upward in the long run.

Despite being knocked down time after time, I choose to live in a state of hope, rather than despair. Why do I continue to hope even though it’s been three years with no change on my MRI? Because I have a choice. It’s the one thing I have control over in this illness. I can choose despair, or I can choose to keep up the fight. I think hope is the better option. Some people say if you build your hopes up, you risk more disappointment. I don’t think that’s true. I’m going to be disappointed either way on this roller coaster, and I’d rather live my daily life in a state of hope and positivity rather than being guarded and cautious. For me, hope is the better option.

Yesterday was a bad day, today was a good day. Who knows what will happen tomorrow, but one day the roller coaster will come to an end. My goal is remission, and when I finally reach it all the ups and downs will have been worth the ride.

Read Kerry’s last blog, “When I Miss My Life Before Lyme“.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

The Pursuit of Answers: What My Doctors Said

by Susan Pogorzelski
#MyLymeLife

What was the path to your Lyme diagnosis?

 

I’m in middle school the first time it happens. I’m 13, I think. Possibly younger. We’ve just returned from a school camping trip where I’d proudly proclaimed I was a nature girl after climbing up muddy embankments and hiking along trails lined with maple trees. I fall ill quickly with a fatigue that won’t abate and a fever that sends me directly to the doctor. The diagnosis: mononucleosis.

“I don’t understand,” I say to my mom. “Is this really what mono’s supposed to feel like?”

I get the nagging feeling that something isn’t right. But I’m 13. Possibly younger. What do I know?

* * *

I’m sitting in the living room with my parents a year later, watching a comedy rerun on TV. My chest feels inexplicably heavy. I inhale slowly, but my breathing feels too shallow. I take another breath, then another, and one more. It’s not enough.

My mom glances over at me and asks what’s wrong, but I shake my head, unable to speak. I’m sucking in mouthfuls of air, but it’s like the more I try to breathe, the shallower my breath becomes. My parents are alarmed. My mom instructs me to blow into a paper bag, but the air tastes tainted. I need fresh air, I tell them, but even outside, there doesn’t seem to be enough oxygen in the world. I’m weak. I’m pale. They usher me into the car and drive me to the ER. Tests are run on my heart and my lungs. Finally a doctor comes in to see me.

“You had a panic attack,” she says matter-of-factly. She makes a note of anxiety and depression in my chart and instructs me to follow up with my primary care physician.

It’s a diagnosis that will haunt me for years.

* * *

I’m a senior in high school, and although my original breathing issues abated within months, the panic attacks are real now. Dread rests in the pit of my stomach while an irrational fear runs through my body. I’m afraid to leave my house, afraid to leave my family, afraid, afraid, afraid…

It’s five in the morning, and I hear my dad getting ready to leave for work. In the darkness of the early hour, I’m gripped by a fear for which there are no words. I jump out of bed and race down the hall in uncontrollable sobs, begging him not to go to work, like I’m still a child afraid of being separated for even a few minutes.

“What’s wrong?” my parents ask, but I don’t know. I don’t know… All I know is fear has taken hold of me and won’t let go.

I spend my senior year trying to build up the courage to go to school. Once I’m there, I’m fine—happy and successful, even, with good grades, great friends, and leadership roles. But it’s the mornings that are the worst. I make it to the end of the driveway before I find myself running back inside. I drive a few blocks out of my neighborhood before I have to turn back around. I have a special excuse from class so I can sit in the courtyard and calm myself in the fresh air when that familiar fear grips me, and once or twice, I think about running all the way home instead.

It’s like something inside of me is telling me that home is the safest place there is, and if I’m home, then maybe I can cocoon my family there, too.

“Anxiety attacks,” my doctor says.

Now I’m seeing a psychiatrist who is talking about how getting ready to leave home for college and all the change that comes with growing up is triggering this disorder.

It makes sense. So I believe him.

* * *

I’m 24 and being scolded at my job for needing to take too many sick days.

“Well, what did the doctor say?” my colleague asks.

“Just another virus,” I say.

* * *

I’m 28 years old and in tears from the pain that’s shooting across my upper abdomen.

“It’s just a virus,” my general practitioner says, echoing an old refrain.

At my insistence, we schedule a never-ending parade of tests that I wouldn’t want if I had a choice and they don’t think I need except for the fact that the pain is persisting and only getting worse. I’m groggy after an endoscopy. My gastroenterologist proclaims nothing showed up as irregular on the test. Then he pats me on the shoulder and smiles.

“Just a sensitive stomach,” he says.

A few months later, they’re removing an infected gallbladder.

* * *

I’m 29 years old and dying. I know this. My parents know this. It’s been four months since my gallbladder surgery, and I’m so weak, I can’t walk. My brain feels so broken, I can barely talk. Burning sensations shoot through my legs. Words don’t make sense, and I can’t recognize my best friend even when she’s standing right in front of me. My face is ashen. The light in my eyes has gone out. I’m a shell of my former self.

My parents are determined to help me. We go to one of the top teaching hospitals in the country.

“Migraines and a vitamin deficiency,” the doctor says when my scans come back clear.

I cry.

I dry my tears.

I resolve to save my own life.

* * *

I’m sitting in a doctor’s office 200 miles from home. It’s six months after my gallbladder surgery and two months since my last hospital visit. This is my final hope.

I think about all the research I’ve done—all the studies I’ve read, all the patient testimonies I’ve reviewed. My suspicions—the very reason I’m here—is the only thing that explains the years and years of symptoms and this sudden decline in health. I see the look in my parents’ eyes, see the question that’s hidden there as my doctor reviews my history and labs—will he save my life?

“You have Lyme disease,” he confirms. “Without a doubt.”

I begin to cry, relief flooding through me.

Yes, he will.

* * *

I’m 33 years old today. In a few short months, I’ll be 34. I get to see 34 because after all these years and all this suffering, someone took the time to learn. They took the time to listen. For the first time, I’m not dismissed with a wave of the hand or a pat on the shoulder. For the first time, someone is looking at me as a human being instead of a compilation of conflicting symptoms.

I’m here because we fought to save my life together.

 * * *

Sometimes I look back on all those years and doctors, and I’m stunned by the flippancy with which I was treated. Yet I know even my experiences are tame in comparison to what I’ve heard from other Lyme patients. I remember a time when yet another doctor scolded me for looking up my symptoms on the internet, for not trusting him to do his job. But it was only by trusting myself that there was something more going on here, that there was some complex piece to this health puzzle that had yet to be resolved, that I ended up saving my life.

Over the years, I’ve learned to become my own health advocate, to speak up when a diagnosis or treatment doesn’t seem right. I’m formidable. I ask question after question and demand the reply. As Lyme patients, we don’t have a choice. While the medical community is slowly learning thanks to increased awareness, many patients continue to fall through the cracks, misdiagnosed with Band-Aids placed on aggravating symptoms, concerns dismissed with a flippant wave of the hand or those few damning words: “It’s just a virus.”

There’s one thing I know for certain now, after all this time: We are worthy of answers.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

When I Miss My Life Before Lyme

by Kerry Heckman
#MyLymeLife

Do you reminisce about your life before Lyme?

 

This morning my co-worker walked around to each of our offices to tell us that there were muffins the conference room left over from a meeting. Every time I passed the conference room the fresh blueberry muffins were calling out to me from the paper plate. I argued with myself throughout the day — it’s just one little muffin. What could it hurt? But I know what it would hurt. It would ramp up the inflammation in my body, eventually leading to aches and pains in all my joints. All that from a plate of muffins, which most people wouldn’t even think twice about.

I try not to live in the past. It’s not a good use of my time and energy to wonder what could have been…What would’ve happened had I never gotten sick? What if there had been better information about prevention at that time and I had gone to the doctor after those tick bites? What if my body was able to fight off the bacteria?

But there are days. Days when I miss staying out late at night. Days when I miss eating anything I want. Days when I miss not taking handfuls of pills and supplements with every meal. Days when I miss feeling full of energy.

When you are diagnosed with a chronic illness your future becomes full of unknowns. Chronic illness is a lifetime companion. Even if remission occurs, there is always the fear that it could come back, so I doubt I’ll ever entirely return to my old ways of going to all day festivals or binge-watching TV shows until three in the morning. This new life is here to stay, and sometimes I really miss the old one.

Summer is especially difficult. Some of my fondest memories are of being on a roof deck restaurant in Chicago. My friends and I would go there on warm days and drink cold beer and eat giant soft pretzels cooked on the grill. Because of antibiotics my skin is now sensitive to the sun, so roof deck restaurants are no longer an option. I probably wouldn’t enjoy it anyway, because the diet I follow doesn’t allow alcohol or gluten.

I don’t spend as much time outside during the summer anymore, because I’m afraid of reinfection. I miss walking on nature trails without fear and not worrying when my dog runs behind our garage into the brush. I used to see the beauty in a field of tall grass, now I just see the potential for ticks.

What do I do when I miss my life before Lyme? I allow myself to be disappointed for awhile. It’s okay to be sad that things are different now.

After the disappointment, I shift my perspective and give myself some gentle reminders. I have a chronic illness, not a terminal one. My illness is not rare, and there is a community millions strong I can lean on for support. My illness may not be curable—yet—but it is treatable.

It’s only then that I’m able to think about the ways I’m grateful for Lyme. Lyme has offered me the chance for personal reinvention. Instead of just being the person who can’t do things she used to, I’ve decided to become the person who explores the new things I am able to do. I’ve taken up meditation and gentle yoga. When I make travel plans, I look for places with plenty of opportunities for rest and relaxation. I’ve shifted my finances away from nights on the town and toward massage therapy and organic food. My focus has shifted from outward to inward and I’m okay with that. I like the new, low-key version of me.

Lyme has also taught me not to take anything for granted. I may not be able to eat a muffin or sip beer on a roof deck, but there is still a world of things that are available to me, like the occasional gluten-free cupcake or going to an organic farm-to-table restaurant with big open windows that let in a cool breeze in from outside.

There will always be reminders of what it was like before Lyme and sometimes I will feel nostalgic and even sad. It’s taken some time, but I’ve learned to love my life with this diagnosis.

Read Kerry’s last blog, “Meditation and Lyme: How It Helps, How It Doesn’t“.


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Meditation and Lyme: How it Helps, How it Doesn’t

by Kerry Heckman
#MyLymeLife

Without a cure, meditation can provide a relief of Lyme symptoms.

 

Sometimes meditation is offered up as a cure-all for chronic illness. This is certainly not true, and occasionally dissuades people from trying it. In my experience, it hasn’t cured my Lyme disease, but the benefits have been remarkable.

Meditation became a part of my self-care routine during my ordeal to find a diagnosis. I was so anxious about not knowing what was going on in my body that I was having frequent panic attacks and couldn’t sleep.

The slow process of speculating about a cause, scheduling tests, and then waiting on the results was so stressful I couldn’t focus on anything else. To take my mind off the waiting game, my integrative doctor suggested a mindfulness-based stress reduction class.

On my first day, I walked into a room of about 10 people. I was surprised to see a group of average looking adults. We went around the room and shared with each other why we were taking the class. We all had different reasons for being there, health issues, stressful jobs, relationship problems, but the common theme was the same—anxiety was taking over our lives.

The class was an educational seminar run by a psychologist. He showed us a powerpoint presentation that taught us about the “fight or flight” reflex. This response of the autonomic nervous system is only supposed to activate when there is an immediate threat to our lives. However, in people with anxiety it’s turned on all the time. The problem for people with chronic illness is that when the fight or flight reflex is turned on, the immune system is turned off; therefore, the body is not able to heal. This was a huge wake up call for me. I knew I had to do everything I could to put my body in a healing state.

At the end of class, the psychologist led us through a guided meditation in which we visualized putting our racing thoughts on leaves as they passed by in a stream. It was the first time in months I felt like I could let my worries go.

Each week I went back and learned a little more about the nervous system, the brain, and mindfulness strategies to use throughout the day.

The psychologist provided us with a digital recording of a 10-minute meditation we could listen to between classes. Whenever my heartbeat would start to increase signaling an impending panic attack, I put on the meditation and tried to breathe through it. Occasionally, I had to listen to it twice, but it was always helpful.

A few times when I was talking to my husband, he could tell my thinking was spiraling downhill. He suggested I do the meditation and then we could resume our conversation. Once I’d taken a 10-minute pause from fear-based thinking, I was able to rationally discuss the situation and decide on the next step.

Meditation will not fix everything. I’ve heard some Lyme patients get annoyed because people encourage them to meditate as if it’s a quick fix to a complex, serious illness. Meditation will not cure fatigue, vitamin deficiencies or swollen joints, but it does help with some symptoms. Meditation has had the following benefits for me:

Calms the “fight or flight” reflex: Prior to practicing meditation, I spent all day and night in “fight or flight.” Meditation and mindfulness taught me how to use my inner voice to talk myself down from imagined threats.

Prevents emotional extremes: I used to go off on my husband and say mean and hurtful things. Eventually, I learned this was because of “Lyme rage,” a symptom of neurological Lyme. We tend to become very frustrated and then unleash on those we love. After regular meditation for about three months, I noticed I wasn’t losing my temper anymore. I still became frustrated but my emotions stayed in check.

Helps with sleep: Insomnia is one of the hallmark symptoms of Lyme. Before I started meditating I couldn’t fall asleep or stay asleep. In combination with a very detailed nighttime routine, meditation has taught my brain how to shut down and prepare for sleep. When I have difficulty falling asleep I turn on a guided sleep meditation and it usually does the trick.

Taught me how to breathe through pain: Meditation has not changed my level of pain, but it has helped me cope with it. Remaining in a relaxed state, even when dealing with high levels of pain has prevented my thoughts about the pain from making it worse. If I stay mindful, I’m able to think clearly about what I can do to minimize the pain.

My practice consists of sitting for a guided meditation for five to 20 minutes first thing in the morning, followed by a few yoga poses to loosen up my spine. There are smartphone apps and websites that offer guided-meditations or meditation music. I learned that if I don’t do it first thing in the morning I won’t do it at all. Now it’s a part of my daily self-care routine.

Meditation may not be right for you, but you can still practice mindfulness. Try to stay in the present moment while doing dishes, going on a walk, or reading a book. Every moment in the present is an opportunity for healing.

Read Kerry’s previous blog, “Chronic Fatigue or Feeling Tired?


Opinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

A Lymie’s View from 39

by Jennifer Crystal

Birthdays and milestones can have a different meaning for Lymies and people with a chronic illness.

 

When I was six or seven years old, I asked a great-aunt how old she was. Winking at my grandmother, she replied, “I’m 39.” I understood 39 to be the last good year, the last decent age before it all started to go downhill; the year by which so many life goals are supposed to have been achieved. I didn’t worry too much, though, because 39 was always a long way off. By then I would be married, have a family, be settled in my career and stable in my life.

That was before I lost a decade to illness.

I turned 39 last month and it looks a lot different than I’d imagined, which is not to say it looks bad. My tick-borne illnesses have been in remission for years. I am writing and teaching, skiing and socializing. I’m living on my own. The view from 39 is certainly better than it was at 29, when I was in the midst of a relapse, back at my parents’ house, pulled away from my independent life for a second time.

That year I wrote in my journal, “I’m turning 29, and what do I have to show for it?” It was a sentiment I felt many times throughout the harrowing years of illness. Unable to work or even leave the house except for doctor’s appointments and trips to the pharmacy, I questioned my self-worth. Birthdays didn’t feel like celebrations; they were reminders of all that I wasn’t doing, all that I couldn’t do, all that I might never do. They were reminders of another year passing by while I struggled to survive.

What I didn’t understand then is that fighting tick-borne illness is an achievement of its own. Getting well was my full-time job, and I was working overtime. Though I often felt awful, I made strides. I was going to neurofeedback, integrative manual therapy and talk therapy appointments. I was taking all of my medications and supplements. Twice a day, I infused intravenous antibiotics and cleaned my own PICC line. I was working through the physical, mental, emotional and spiritual upheaval of being sidelined by illness, and that was certainly worthy of celebration.

I did not yet understand that success is not defined by a career, money or status. Of course, I wanted all of those things, and still think it’s important to support yourself through a job you love. That’s something I’ve worked towards in my thirties. But the fact that it wasn’t possible during the lowest point of illness did not mean that I have nothing to show for those years. I still had my character. I still had my values. I still had my sense of humor. And those qualities deserved to be celebrated.

Still, 39 is not what I expected it to be. I’m not married. I don’t have a family of my own. I am working hard but am not fully settled or stable in my career. I’m grateful for how far I’ve come, but I still want all those other things, and I’d be lying if I said I don’t feel some angst about not having them by this age. Most of my contemporaries are married with kids and mortgages and careers that allow for nice vacations. I love those friends and feel connected to them, but I’m not on the same track as them. My major detour puts me more on track with friends who are 29, because they are at the same point in their careers and personal lives as I am.

But the fact is, I’m not 29. As much as I can appreciate all that I went through in my late twenties and early thirties, I can’t get those years back. My body is aging. When I went skiing this year, I fell on some ice and remarked, “I don’t remember it hurting like this when I was younger. I would just get up and keep going.” I kept going this year, too, but spent the next day icing my sore spots and taking ibuprofen. I’m getting wrinkles around my eyes. Once in a while I pluck a silver hair from my head. My hands are getting veiny the way my mom’s and grandmother’s did at my age. I can’t blame those signs of aging on Lyme disease; I’m simply getting older.

The reality is that my biological clock is ticking. That scares me. But I’m also still holding out hope. During years of illness when I thought I might spend the rest of my life in bed, I nurtured a glimmer of faith, and it worked. I got better. Maybe not as fast as I wanted to, but it did happen. So I have to have faith that I will achieve all my other goals, too, even if they’re not happening in the time frame I’d always imagined.

If my great-aunt and grandmother were alive today, I might wink at them and say, “Maybe by the time I’m 40.”


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Determination Through Despair: A Lyme Warrior Speaks

by Susan Pogorzelski
#MyLymeLife

From one Lyme warrior to another.

 

I’d be lying if I said this wasn’t a difficult time. I’m still struggling to recover from this disease—the raw feelings surrounding this daily battle are documented regularly on my blogs and across social media. I’m still reaching out to Lyme patients and trying to find new ways to connect and provide emotional support and friendship to those who are suffering from this isolating illness. I’m still trying to grow my own business so I have some means of financial support, even though I’m only partially functioning and never have any consistency. I’m still trying to write my novels—my passion—in the rare moments when the fog in my mind clears. I refuse to let Lyme take that away from me, too.

But I’d be lying if I said it was easy to keep holding on.

There’s so much more to Lyme disease that most people can’t understand unless they’ve experienced it themselves. It’s not just the physical symptoms that make life impossible —it’s the emotional. It’s the financial. It’s the burden under which we’re forced to bend until we break. And boy, do we break. If anything, Lyme teaches us resilience. But how many times do we have to break down and build ourselves back up before it all becomes too much?

Sometimes this disease feels impossible. Too often, we walk in darkness.

I need to stop speaking in the abstract. That doesn’t help anyone. So here’s the truth of my Lyme disease: Even as I continue to get better, the bills add up. Medicine and doctor visits are all out of pocket and expensive—and that’s just for the oral antibiotics which I’m taking. I’m waiting to get a disability hearing, but that won’t be scheduled until 2018. In the meantime, I need some financial relief until I can go back to work without worrying that I’m either jeopardizing my health or that I won’t lose whatever job I do get because I have good health days, but they’re always followed by bad weeks.

I’m on government assistance. I’m relying on my family to get me through each month, placing an even bigger financial burden on them. Come August, if nothing changes, I’ll have to sell my house. In the meantime, I’m trying to build up my editing and writing business and do odd jobs so I’m able to earn some income. I’ve always believed in working hard for what you earn. But those jobs are hit or miss. It never feels like enough.

I try to be positive and live in gratitude because I have way more than some, and I recognize that. But every day is a struggle. Every single day. And the worst thing about it is that my story is all-too-common.

This is why I advocate so strongly for Lyme patients. Because we live in this hell for years and years, and if I can help prevent the suffering of just one person—if I can show them they’re not alone—then maybe I’m still here for a reason. Some days, though, it’s hard to tell.

I don’t mean to be so blunt. I don’t mean to sound so weary. But the truth is, I’m tired. I’m tired. I’m so damn tired.

I don’t like people to see this side of me—this side that’s depressed and anxious about her future, whose desperation screams so loudly, I begin to wonder if I even have one. I don’t like others to see this side of me because it’s not indicative of who I really am.

I’m the girl who is strong and brave and formidable in the face of adversity. I’m the girl who strives to help others rise in the face of their own battles, who offers hope in times of darkness because she believes hope can light the world. I’m the girl who faces obstacles with resilience and accepts challenges in stride, persisting despite resistance.

But sometimes I’m also this: Lonely. Scared. Defeated.

This week, I was the girl who sank so low into darkness, she didn’t think she’d ever find her way back out. I was the girl who lost her empathy and ability to cope, who pushed away loved ones, who lashed out at the hands that tried to help her rise from this dark corner. I was the girl who sank to the kitchen floor and curled up near the cabinets, sobbing because she couldn’t see a way forward, a way past this pain.

“I can’t do this. I can’t do this. I don’t want to do this anymore.”

How many times have I said those words? But I’m still here. I am still doing this. Because there is no choice. I can’t support others on this journey if I’m crumbling under the weight of my own.  So I’ve learned to keep picking myself up. I focus on the victories. I reassemble the pieces that fall apart. I fight to keep shedding light on the dark corners of the world even though my own world feels dark because the fire inside me refuses to go out.

I refuse to let it.

Little by little, the light I strive so hard to cast for others spreads to myself, and I bask in its glow for a while. I’m starting to learn how to do that, too. But it’s hard to keep that light there when this disease has shadowed you for so long. It’s hard to keep going when you don’t know where this ends.

All I can do is make a promise myself and to you. I’ll keep going. I’ll keep picking up the broken pieces. I’ll keep trying to shape them into something useful, something beautiful. I’ll keep casting light on all those dark corners of this disease. And I’ll keep trying to remember that I can walk in that light myself.

I promise I’ll keep fighting for you, for me, for us. I won’t stop.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Fear of Lyme Reinfection

by Jennifer Crystal

Hoping you don’t get another tick bite and Lyme reinfection this spring.

 

This time of year always makes me happy: the tulips come out, everything blooms, and the world feels hopeful again. It also makes me nervous, because I know spring brings an influx of my worst enemy: ticks. Articles and newscasts from The Boston Globe to CBS warn that a warmer winter will make tick season especially bad this year.

“But isn’t the horse already out of the barn,?” a friend asked me when I voiced my concern. She meant that since I already have Lyme and babesia, what would be the harm in getting a new tick bite? A lot, it turns out.

Getting a new tick bite ranks up there with relapse in terms of my worst fears. My Lyme and babesia are currently in remission, well-controlled and well-maintained by specific medication, supplements, dietary restrictions, and lifestyle limitations. A new infection could spur a relapse, and engender new symptoms that I did not experience with my initial infection.  It could also re-infect me with ehrlichia, a co-infection I previously beat, or give me several new co-infections. One bite could send me back to square one.

I know the danger of this because I watched a friend go through it last summer. Like me, she had been in remission, and was out living her life: raising her children, taking spin classes, working and socializing. Then one day she sat on a blanket under a tree at her child’s lacrosse game, and a few days later, woke up sicker than ever. A tick had bitten her while she sat watching that game, reinfecting her not only with Lyme but with co-infections she’d never had before. She ended up in the hospital.

Besides the physical toll these new infections took on her body—she went from attending spin classes to grimacing in pain when a physical therapist tried to stretch her legs in her hospital bed—the illnesses also took an emotional toll. The isolation and pain of tick- borne illness can cause depression and anxiety, but those feelings are much worse when you’ve survived the illness before, tasted freedom and suddenly had it stripped from you again. My friend felt hopeless.

Who can blame her? Remembering the devastation of my relapse, I can only imagine how distraught I’d feel if I were to get a new bite, especially since there are so many new tick-borne illnesses on the rise. A recent story on CNN warns of a rise in tick-borne Powassan virus, a potentially deadly encephalitis. Symptoms can include fever, headache, difficulty maintaining consciousness, cognitive impairments and seizures. A recent NPR report speaks to a rise in newer tick-borne illnesses, such as anaplasmosis and Heartland virus. Other prevalent tick-borne illnesses include Bartonella, Borrelia miyamotoi, Bourbon virus, Colorado tick fever, mycoplasma, relapsing fever, Rocky Mountain spotted fever, Southern Tick-Associated Rash Illness (STARI), tick paralysis, and tularemia.

Fear of a new bite can make a Lymie want to hide. Short of that, here are some tips for preventing Lyme disease while enjoying the great outdoors. These are important for everyone to follow, whether you’ve already had a tick-borne illness or not:

  • Use insect repellent that contains DEET, or the more natural components of picaridin and oil of lemon eucalyptus, and treat clothing and outdoor gear with permethrin.
  • Carry repellent with you at all times. You never know when you’re going to be at a friend’s house and they’ll suggest going for a walk or taking their kids out to play.
  • Wear light-colored, long-sleeved clothing. Tuck pants into socks, no matter how geeky that sounds. Wear close-toed shoes.
  • Stay away from grassy areas, wooded areas, brush and leaves. Stick to the center of gravel and dirt paths. One patient said she’s so afraid of leaf piles on the sidewalk that she walks in the street. I do this, too! (Just make sure it’s safe!)
  • Do a tick check immediately after spending time outdoors, remember to look in tick hiding spots such as the groin, the belly button, behind the ears, and on top of the head. Do a check every night before bed.
  • Remember to check your pets, too! One man in West Hartford, CT recently pulled 30 ticks off his dog after a walk around the reservoir. Dogs tend to run into the woods and roll in the grass, and then they bring whatever they pick up into your home.
  • Shower immediately after spending time outdoors. If you have small children, be sure to bathe them and check them for ticks every single night. Kids are at greater risk of getting tick bites and associated illnesses because they are closer to the ground and spend more time playing outside than adults.
  • Put clothes in the dryer as soon as you come inside for 10-15 minutes. High heat kills ticks.
  • Carry a mini lint brush with you, and periodically swipe it over your body and clothes. Remember that ticks are sometimes hard to see so they may get picked up and be noticeable on sticky lint paper.

Most important, we can’t let ourselves be blocked by fear, because then the ticks have won. Spending time outdoors will always make me nervous, but I believe that using these preventive measures will keep me safe. I wish everyone an enjoyable and tick-free season!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Lyme Moms: We Salute You

by Jennifer Crystal

A tribute to the mothers of children with Lyme disease and mothers with Lyme disease, out there on the front lines fighting for awareness, research, treatment, and validation.

 

When I was undergoing treatment for Lyme, I attended a local support group. Most of the members were parents. Some were trying to raise families while battling the disease. Others were healthy but were raising children who had tick-borne illnesses. Some of those children had been infected in their own backyards. A few families had more than one child with Lyme. Just as one child would start to get better, another would fall ill; for those families, beating Lyme was like playing dominoes. Listening to their stories made me realize how much more complicated their battles were than mine. Every Lyme patient suffers, but Lyme families face additional challenges.

I realized it is the mothers of Lyme kids who are often making the biggest difference. They’re on the front lines fighting for awareness, research, treatment, and personal validation. They’re fighting for recognition of an illness that is often dismissed as nonexistent by schools and pediatricians. I have heard horror stories of parents being questioned by school officials as to whether their child was truly sick. One mom said the Department of Children and Family Services had threatened to take her daughter away because the child had missed so much school. It’s hard enough for these kids to miss out on the academic and social events of their age. It’s hard enough for their parents to understand their children’s symptoms and get them proper treatment. But to then have the factual basis of the crisis questioned!

Even parents who find ticks or rashes on their children and seek immediate treatment are questioned by pediatricians who aren’t Lyme literate. A friend who found an embedded tick on her two-year-old son was told by the pediatrician not to even bother having the child or the tick tested, but to “wait and see” if the child developed symptoms. Lyme symptoms can be nebulous—and difficult to express, especially by a two-year-old—so waiting to see would have put the child at greater danger than giving him prophylactic antibiotics. Fortunately, the mother was well-informed and she insisted her son be given treatment.

These mothers persist because they love their children. As Staci Grodin, Vice Chair of the Global Lyme Alliance and a Lyme patient herself says, “Education is key. We must educate moms and kids on prevention so months and years don’t go by with any child suffering. Educating schools, camps, and other places where our children learn and play is also critical to keeping everyone safe.”

It isn’t easy for parents to fight this good fight when they’re the ones who are sick. But many like Grodin do. She was bitten by a tick in college and it was a couple years before she was diagnosed with Lyme and its co-infections. She’s wrestled with ups and downs since then, all while raising a family and working to advance Lyme education and awareness.

Some parents want to join this fight, but can’t because they are completely bedridden. They struggle with feelings of guilt and shame when they can’t be involved in their childrens’ lives the way they want to, so the bulk of the parenting falls to the spouse. Other parents have to navigate giving equal attention to both healthy and sick children. Lyme doesn’t just wreak havoc on a body; it can also wreak havoc on a family.

There is also the question of getting pregnant while battling Lyme. Research shows that the bacteria can be passed to the fetus, so both the mother and the baby’s health are at risk. In the documentary Under Our Skin, one patient suffered miscarriages due to Lyme and the fetuses tested positive for the disease.

Grodin remembers, “When I got married and wanted to become a mom in 2002, I weighed my options very seriously about what would be the best way to ensure the baby didn’t get Lyme and the other co-infections I had.” Grodin’s doctor advised she do shots of penicillin for 10 months. “I have three children, so as you can imagine that’s a lot of shots!”  All of Grodin’s children were tested at birth, and thankfully were Lyme-free.

There is always the risk that Grodin’s children could get their own tick bites. “As a mom, I’m constantly concerned about Lyme disease prevention and checking my kids for ticks,” Grodin says. “I make sure my own back yard is as tick free as possible, and I use tick control to ensure this is the case. I use permethrin on my kids’ clothing, backpacks, jackets and so forth, and have educated them to do self-checks as well. My kids still enjoy all of the field sports and go off to sleep away camps and do all of the fun kid stuff that they want.”

This Mother’s Day, I will raise a toast to Grodin and to all the moms who are Lyme Warriors. To my friend who insisted on treatment for her son; to my own mother, who makes me meals and talks me down when my symptoms flare; to my stepmother, who comes with me to my doctor’s appointments, takes notes, and asks great questions; to all the moms who are suffering from Lyme, or whose kids have it; to the moms who are fighting for awareness and prevention; and to the friends and caregivers who offer maternal love and support to patients.

We couldn’t do it without you!

Who is your #MyLymeHero?


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Loving Yourself Through Lyme Disease

by Susan Pogorzelski
#MyLymeLife

Living with Lyme disease can damage both your body and your soul. How do you take care of yourself, emotionally?

 

This May it will be five years since I was diagnosed with chronic Lyme disease and 20 years since I first started getting sick. Sometimes, I look at those numbers, look back on all the years, and I’m speechless. I don’t know how I’m still here, but I am. And I intend to stay.

Today my dad and I drove down to Maryland to see my new Lyme doctor. His wife also has Lyme and—like my first doctor who saved my life—I liked them immediately. He sat and listened to my story, asking questions about my symptoms and then examined me.

“How long have you had these stretch marks on your abdomen?” he asked.

“For as long as I’ve been fat,” I joked. Then I explained how I put the weight on—a lot and quickly—since I’ve had Lyme, and again when I relapsed.

“They’re going the wrong way for stretch marks,” he noted.

I looked at him, somewhat surprised. “Bartonella rash?” I asked.

“Bartonella rash,” he confirmed.

My body is what I’ve been the most insecure about since dealing with Lyme. When I was sick with mononucleosis in middle school I “blew up,” so to speak, gaining weight rapidly, unable to lose it. Eventually, when I was in high school, I did lose it all and rather quickly. I only wish now I had been more confident in who I was back then. Now, all these years later, I wish I could match what I feel on the inside—strong and brave and beautiful—with the outside, when all I see when I look in the mirror is someone who’s tired and weighed down by this disease.

Ah, but isn’t that just the way it goes?

Now that we’re able to recognize that bout of “mono” as my first brush with Lyme—now that I’ve experienced my second rapid weight gain—I’m starting to understand how this illness ravages the body and the mind. Stubborn weight gain is not unusual in that the bacteria damage the metabolism, thyroid, adrenals, and gut. It’s disheartening, truly. It feels like no matter what you do, it won’t make a difference.

Except it all makes a difference. I’m not going to lose the weight until I start getting better from this disease, I know that. But that means I need to reaffirm my dedication to my recovery—eradicating the infections with a new cocktail of antibiotics, reducing the inflammation with nutrient-rich foods and supplements so my organs start doing their jobs, and building my immune system strength so my body can learn to fight on its own again. It also means more patience on this journey, continued self-care.

I’m not doing anything wildly different as far as a treatment plan. Tweaks to the antibiotics, changes to the supplements, re-focusing on healthy foods, and exercising only as much as my stamina and the illness will allow. But once again I’m armed with renewed hope and determination. Once again, I’m ready to do what it takes to be healthy again.

Or, you know… For the first time.

This disease has been hell in so many more ways than one. It’s broken me time and time again, over and over. But it’s also forced me to face what I didn’t want to face, making me into someone I hope is better and bolder and stronger.

These past five years, I’ve spent so much time healing emotionally and spiritually. I’ve spent so much time trying to build back everything I’ve lost. I’ve spent so much time rediscovering who I want to be and learning to believe in and love who I already am inside.

Now it’s time to accept and love who I am outside. It’s time to accept and love my body for all it’s been through, to forgive myself for what it is right now.

Love is love
reflected inside and out.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

SUPPORT #TEAMGLA in TOUGH MUDDER

Dear Lyme Warrior … Help!

by Jennifer Crystal

Every couple months, Lyme Warrior Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she is frequently asked.

 

Do you have a question for Jennifer? Email her at [email protected].

I started treatment for Lyme, and now I feel worse! Is this normal?

Yes. As strange as it may sound, this is actually a good sign. It means the medication is working. What you’re experiencing is called a Herxheimer reaction: the antibiotics are killing off bacteria faster than your body can eliminate them, making you feel worse before you feel better. While Herxheimer reactions—often referred to as a “herx”—are tough to deal with, they usually don’t last too long. The first time I had one, my doctor told me to “stay the course”, and I’m glad I did. If your herx is unending or unbearable, you may want to talk to your doctor about “pulsing” your antibiotics—taking short breaks from them, or changing them.

I have mostly had neurological symptoms, but now I suddenly have fatigue and joint pain. Why did that happen?

Lyme bacteria, called spirochetes, are tricky. They spiral away from antibiotics in an effort to evade the treatment. This means they might burrow into new places, or they might move deeper into places they’ve already been. Without antibiotics, though, the spirochetes will eventually get to all those places and then some, without anything fighting them off. Eventually the antibiotics will win out, but in the meanwhile, you may experience new symptoms. Fatigue is especially common, because your body is laden with bacteria that is being killed off (a good thing!), and because your body is working so hard to fight the infection.

Spirochetes also love to hide out in scar tissue. If you’ve had an injury to a particular joint, you may feel more swelling or pain in that area than others. I tore my ACL a few years before I started Lyme treatment. The rehabilitation took much longer than expected because Lyme was living in the scar tissue around the knee. I’ve also had intense migraine headaches over my left eye. I had several surgeries on both eyes as a child, and my doctor suspects I have more scar tissue around the left, causing focalized pain.

Be sure to tell your doctor about new symptoms—especially if you develop neurological impairments that you never had before, as this could be a sign that the infection has crossed the blood-brain barrier. It helps to keep a daily log so that you can track your symptoms and accurately report them to your doctor.

I have spoken with many people with chronic Lyme disease who were on years of antibiotics and did not do well until going a natural route. Do you think it’s possible to treat Lyme disease without antibiotics?

My short answer is no. The long answer is that everyone has a different experience and reacts differently to treatments. Some people only get well with antibiotics. Some people start on antibiotics and then add or switch to naturopathic treatments. As I’ve said in the past, it all depends how long a patient went undiagnosed, whether their Lyme is complicated by co-infections, whether the infections have crossed the blood-brain barrier, and how a patient’s immune system responds to various treatments. Only you and your Lyme Literate Medical Doctor (LLMD) can decide the best course of action.

In my experience, the naturopathic route alone did not treat Lyme. For me, it took a combination of Western and Eastern modalities. Lyme is a bacterial infection, and antibiotics kill bacteria. I would not treat other bacterial infections, such as pneumonia or a urinary tract infection, solely with naturopathic remedies. I apply the same theory to treating Lyme. I take homeopathic supplements to help boost my immune system, replenish nutritional depletion, and augment the work of pharmaceutical medication. I also rely on adjunct therapies such as neurofeedback and Integrative Manual Therapy.

However, none of these therapies would have helped on their own. Before being diagnosed with Lyme, I was seeing a naturopathic physician who treated me with Chinese herbs, dietary restrictions, and acupuncture. After two years of these treatments, I showed only nominal improvement. That was because there was an underlying bacterial infection that wasn’t being adequately treated. It was the naturopathic physician who recommended I see a Lyme specialist; he knew he’d maxed out his ability to help me, so he sent me to someone else who could. That, in my opinion, is the sign of a good doctor.

How do you live out in the great outdoors without fear of reinfection? My fear of this is all-consuming. I used to be an outdoorsy person, and now I’m scared to walk on grass. A sidewalk littered with leaves makes me so overwhelmed that I’ll walk in the street.

This a great question that merits its own post, coming soon. Stay tuned!


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]


 

 

 

Why I’m Getting Dirty for Lyme Disease

by Scott Santarella, CEO, Global Lyme Alliance
pictured here with GLA teammate, Lindsy Brophy

I need your support for Team GLA and Tough Mudder

 

On Sunday, July 23rd I will Captain the Global Lyme Alliance Tough Mudder team in Bethpage, Long Island, raising funds and awareness to support GLA’s efforts to eradicate Lyme disease. Part of my incentive to take on the challenge of the Tough Mudder was to support the tens of thousands of patients who struggle each day dealing with the insidiousness of Lyme disease, and as an excuse for me to get my you-know-what into shape!

Getting Ready

I went so far as to exercise on LIVE TV!  That alone should tell you how important this is to me. If you want a laugh, check me out on this Good Day New York segment promoting GLA and our team. 

How You Can Help

You’ve witnessed me crawl, jump, and try to catch my breath – now it’s your turn to help.

  • To make a donation to support me and Team GLA, CLICK HERE.
  • To be part of the fun by joining Team GLA or participate in a Tough Mudder anywhere in the county on behalf of GLA, CLICK HERE.

Thank you all in advance for your consideration of support and I will report back on how sore I am with photos of me full of mud on July 24th!

Scott Santarella 

Taking Lyme One Day-Minute-Second At A Time

by Jennifer Crystal

How do you manage Lyme symptoms that can change day by day, minute by minute, second by second?

 

Last weekend in Boston we had a nor’easter. I wondered if it was just a bad April Fool’s Day joke, because come Monday morning the sun was shining, the snow was gone and the temperature was climbing towards 50 degrees. Looking out my window, I thought of the old adage, “Don’t like the weather in New England? Wait five minutes and it will change.”

This maxim applies to Lyme disease, too.

When I was really sick, people would say to me, “Just take it one day at a time.” But that wisdom didn’t apply, because my symptoms could run the gamut in the course of a day. I might wake up exhausted from a horrible round of nightmares and feel washed out and foggy for the morning, but then I’d perk up after lunch. Or I could wake up feeling “relatively” good—meaning well enough sit up for a couple hours typing emails or even drive into town to run errands. That last part was dicey, though, because I never knew when I would run out of steam. Some days I might feel okay at breakfast and intend to go to the pharmacy afterwards, but would then suddenly have to crawl back into bed as soon as I finished infusing my morning antibiotics. Sometimes I made it out for the errands but then crashed halfway through. I remember sitting in the dressing room of a store that was five minutes from my house, crying because I’d hit a wall and didn’t think I could go through with the purchase, let alone drive home. I was only trying to buy underwear! I remember thinking, “If I can’t even do this basic errand reliably, how will I ever live in a normal life?”

I had to learn that Lyme isn’t one day at a time. Lyme is one hour at a time, one minute at a time, sometimes even one second at a time.

The bad news about this is that I had to accept that those periods of wellness might not last. The good news, though, was that it helped me to hold on through the bad periods. I used to chuckle to myself as I lay in bed thinking, “You don’t like this? Wait five minutes, and it will change.” I didn’t always feel better in five minutes, but the worst periods did eventually pass, and it helped to remember that my illness could be as mercurial as the weather.

It also helped to alleviate the pressure of thinking about how to get through a whole day all at once. If I woke up feeling awful, the prospect of twelve hours of such torture was unbearable. But if I said to myself, “You just have to get through the next hour,” the pain and fatigue and anxiety and brain fog and word iteration became slightly more manageable. I was taking control of my emotional reaction to my symptoms, even if I couldn’t control the symptoms themselves.

On the flip side, I had to recognize that an hour feeling good might not stretch into the next hour. This was frustrating, of course, but it also helped me to be present. I would say to myself, “I feel good right now. It’s only 9 a.m. and I might feel awful by 11 a.m., but I’m okay this minute and am going to take advantage of it.” With Lyme disease, there’s never a minute of wellness or energy to waste.

Eventually, those good minutes and good hours started to stretch. They became more frequent. Now in remission, I generally know that my energy will be good in the morning, wane in the afternoon, and pick back up in the evening. Holding on through months of terrible hours, of terrible minutes, of terrible seconds, got me to a point where I can now enjoy months—years—of good days.

If you are at a point where you are surviving Lyme by the second, wait it out. Take the disease in whatever increments you can. And know that no matter how many surprise storms might there might be, spring eventually arrives.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Short-Circuited by Lyme Disease

by Jennifer Crystal

Understanding how everyday functions can be short-circuited by Lyme disease.

 

During my 2007 relapse, I was sent to a state-approved doctor who was supposed to decide if I really had Lyme disease, even though it had already been clinically diagnosed by a Lyme-literate doctor and confirmed by CDC-positive blood tests. I was nervous about this basic 15-minute physical exam that would determine whether or not I deserved disability benefits. I told the doctor all of my symptoms, but I wasn’t sure he believed me. My eyes, ears and lungs checked out okay, so I worried he would write me off as healthy.

Then he asked me who the President of the United States was.

Crickets…

Cheeks burning red, I stared at the doctor. Seconds passed, then minutes. For the life of me, I could not come up with George W. Bush. Of course, I knew he was the President at the time. I was a college-educated woman with a background in politics and a good understanding of current events, despite being so sick. But in that moment, my mind went blank.

These delayed reaction times are common with neurological Lyme disease. When Lyme crosses the blood-brain barrier, the bacteria invade the brain and central nervous system, causing operational slow down. I think of the brain as a system of wires: neurons and their connectors, synapses that when working properly allow us among other things to accurately communicate and move. That doesn’t happen, though, when there are bugs in the brain. I sometimes imagine the spirochetes chewing on the wires, fraying and sometimes ruining them like a phone cord getting caught in a vacuum.

Lyme patients can’t just buy a new phone cord; we must rely on antibiotics to fix our faulty wiring. In the meantime, we’re short-circuited, which can manifest in myriad ways: brain fog, word iteration, word mix-ups, tremors, mini seizures, sleep disturbances and, as shown in my embarrassing silence at the doctor’s office, delayed reactions.

Sometimes I joke that I need to do a Google search on my brain to come up with an answer. It might pop up in a few seconds, a few minutes, or not until hours or days later.

Lyme victims’ bodies suffer similar delays. When we’re attacked by infection, we feel sluggish and run down; think about how tired and achy you feel when you have the flu or bronchitis or a sinus infection. The same is true for Lyme, except the infection is not localized. It’s burrowed in bones, muscles, cells, and joints, and can spread to every bodily organ. Lyme weighs the body down like thick molasses, causing everything to run more slowly. I remember having my reflexes tested during my first appointment with a Lyme literate doctor. The physician’s assistant tapped on my left knee. At first, there were only crickets; my leg did not respond. Then, a few seconds later, it shot up the way it was supposed to.

That same knee had given me trouble years earlier, before I knew I had Lyme and other tick-borne infections. I’d torn my ACL skiing and the rehabilitation had taken much longer than expected. I was working overtime at physical therapy, but when the orthopedic surgeon examined my knee two months after surgery, he proclaimed, “This is awful. Your leg should be much stronger than this by now. Clearly you aren’t doing your exercises.”

In fact, I was doing more exercises than required, over-achiever that I am. But there was another important fact I didn’t yet know about: Lyme loves to hide in scar tissue. The spirochetes, not my lack of effort, were delaying my recovery.

Once I was accurately diagnosed with Lyme and co-infections, my recovery was tedious, as it is for many patients. My body is slow to metabolize medications (when I had the ACL surgery, the epidural took so long to wear off that I was almost admitted overnight; when I had my wisdom teeth removed, the twilight anesthesia didn’t kick in until after the procedure was over!). It takes me much longer than the average healthy person to recover from acute illness, too.

Everything is slower with Lyme. But it does still happen…just on delay. Even my disability benefits came through, years after I initially applied.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

When We Build Cathedrals

by Susan Pogorzelski
#MyLymeLife

Finding the strength to build when your chronic illness leaves you feeling exhausted and invisible.

 

I recently read a powerful story by author and speaker Nicole Johnson about a gift she received at a dinner party. It was a book about cathedrals whose message she didn’t understand until she read the inscription from her friend. The inscription read, “With admiration for the greatness of what you are building when no one sees” and came at a time when Nicole herself was struggling with feelings of inadequacy and invisibility as a mother.

When she read the book, she found it life-affirming. The world doesn’t know who built these cathedrals of prestige and beauty, she explained, but the builders were fueled by faith, passion, and purpose in their work. Nicole continued to reiterate a story in the book of a wealthy man who approached one of the builders while he worked. She writes:

“He saw the workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, ‘Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.’ And the workman replied, ‘Because God sees.’”

I’m not a mother, but these were the words I’ve been needing to hear for so long now. Because while I may not know what it’s like to feel invisible with regard to parenthood, I know what it’s  like in the face of chronic illness. I’ve lived with the hope that someone might see me, hear me, for the past five years—even longer, as this has been a common refrain for most of my life.

Doctors wouldn’t hear me when I told them there was something gravely wrong with my health, when I begged them to help me save my life. So I saved my own by finding a doctor who would. Colleagues refused to see my pain, instead spreading rumors and calling my character and work ethic into question when I couldn’t walk, could barely talk, couldn’t find the energy to lift my head from the pillow for more than minutes at a time. So I confronted them with dignity, pushed myself past my limitations, and fought my way into remission…and a promotion. Family and friends tried but couldn’t understand the lifelong effects of this disease. So I held awareness events in my local community, wrote blog posts and a second novel about Lyme disease to encourage compassion, and reached out to other patients knowing they might be feeling just as alone, to assure them that we were on this journey together.

With each challenge, I’ve pushed forward to save myself, to create something lasting for myself,  to leave a story of hope behind for others. Where this illness has consistently tried to break me down, I keep moving forward to build my life back up because I don’t know how to stop, even through this recent relapse, and the fire inside won’t let me.

But I’m tired now.

I’m tired of fighting against this dark cloud that seems to hang overhead, cutting the signal, preventing me from reaching those I want to reach and helping those I want to help. I’m tired of the days when my energy is sapped, when I lie in bed unable to move, wishing I could be working or writing or being useful in some way. I’m tired of the glimpses—small pockets of life purpose that give me just enough willpower to carry on into tomorrow, but maybe not the next day.

I’m doing so much, but it never feels like enough, and I’m just so tired.

I’m staring at my own life—this cathedral I’ve built from the ashes of this disease—and I can’t see past the beams. What will this life look like in the end? What positive change will have come from my own suffering? What purpose still remains? If I’m invisible to everyone already—feeling like I’m barely reaching anyone—then what hope is there for what I’m building now?

Why are you spending so much time carving that bird into a beam that will be covered by the roof? No one will ever see it.

Because it’s there. I know it’s there, this work I’ve created full of hope and heart, and maybe that’s what matters.

I don’t know if what I’m building will be seen. I don’t know if the words I’m sharing will be heard. But they’re here for those who need it. And I’ll keep sharing. I’ll keep building. I promise I won’t ever stop.

Word by word, carved bird by carved bird, I’ll work beside others and build and build and build until the legacy lies within the cathedral itself—hope and faith and change for those to follow, so that those who suffer will be seen and heard, and not just by those who choose to look.

There’s a purpose for us yet.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

GLA: Lyme Disease Research Symposium Highlights

by Mayla Hsu, Ph.D
Director of Research and Science, GLA

GLA hosts top researchers to discuss Lyme disease research.

 

How can we understand Lyme disease better? Are there drugs that can kill persistent bacteria? Why do some Lyme patients get well, while others remain sick? Questions like these were discussed at the 2017 Global Lyme Alliance Research Symposium, which was held March 31-April 1 in Greenwich, CT.

About 30 scientists from all over the United States met to share the latest data about Lyme disease. These were researchers who have received GLA grants, as well as Scientific Advisory Board members whose expertise spans both the clinical and basic sciences.

Norma Russo, board member, GLA; Dr. Ying Zhang, Johns Hopkins University
Norma Russo, board member, GLA; Dr. Ying Zhang, Johns Hopkins University

One highlight was the discussion of a new way of using the mouse model of Lyme disease, in which evidence of brain penetration by spirochetes has been found. In the past, this has not always been easy to demonstrate, and the new data will fuel further discovery of its direct effect on neurological infection and brain function.

Another area of discussion was focused on the 10-20% of Lyme disease patients who despite antibiotic therapy are not cured. Such patients often suffer debilitating pain, fatigue, and neurocognitive difficulties, which are termed post-treatment Lyme disease syndrome (PTLDS). Understanding the immune response in PTLDS patients and what causes a chronic inflammatory state is the subject of GLA-funded work, both in the mouse model as well as in the study of human subjects.

The search for more effective treatments for Lyme disease patients was also presented in talks and posters. The bacterium that causes Lyme disease is called Borrelia burgdorferi. When grown in the test tube and treated with antibiotics, some bacteria survive as persisters, which are very slow-growing bacteria. In patients, persisters may be the cause of long-lasting symptoms. Therefore, new drugs and drug combinations that directly target persister bacteria are a focus of research interest.

Lew Leone_Armin Alaedini
Lew Leone, board member, GLA: Dr. Armin Alaedini, Columbia University

The symposium wrapped up with a lively group conversation about the diagnostic blood test for Lyme disease, with widespread agreement that the existing two-tiered test recommended by the Centers for Disease Control is unacceptably insensitive. What it should be replaced with, however, is still being debated.

Overall, GLA was pleased to host this gathering of premier-level scientists. The newer research underway will in due course be published in high-quality, peer-reviewed scientific journals consulted by authorities in the tick-borne research field. We look forward to seeing the final results and to supporting ongoing studies.

Getting Involved: When Your Intention Says Yes, But Your Body Says No

by Jennifer Crystal

You’re feeling better and want to get involved, but your chronic illness has other plans.

 

Last January, a friend asked if I had attended a recent local Women’s March. I shook my head sheepishly. “But that doesn’t mean I don’t care,” I quickly said.

This is an exchange I’ve had many times. I often feel like I need to explain the difference between wanting to get involved and being able to. No matter your political leanings, the last few months have been unsettling for everyone. There have been so many causes and marches and ways to become engaged that even the most energetic of us has felt overwhelmed. For those suffering from Lyme and other debilitating illnesses, that feeling is amplified by the fact that involvement in daily life, let alone activism, is often too much to handle. When you are too physically or neurologically overtaxed to cook meals, talk on the phone, or read books, civic engagement seems out of the question. And that can lead to feelings of guilt, shame and selfishness.

Wanting to watch TV or hang out with friends and not being able to do so is frustrating. Wanting to get involved in something bigger than ourselves and not being able to takes those feelings to a new level. I remember, when I was completely bedridden, someone said to me, “Why don’t you volunteer, to get involved in something besides being sick?” What that person didn’t know was that if I could have volunteered, I certainly would have. If I could have worked part-or-full time, I would have. If I could have done anything that made me feel connected to the world at large, engaged in my community, or occupied with something bigger than my illness, I would have. But I could not.

I had to get well before I could do any of those things. It comes back to the old oxygen mask analogy: you have to secure your own mask on an airplane before helping someone else with theirs. This rule feels counterintuitive because our desire as humans is to help others first. But we can’t help anyone if we’re not breathing. Having Lyme or any of its co-infections is like being without the oxygen mask. There is very little we can do for ourselves, much less others without it.

Once we are breathing again, though, we still may not be able to participate in events and activities the way we’d like, but that doesn’t mean there aren’t other ways. Though I am no longer housebound, I have limitations that prevent me from participating in events like political marches. Big crowds and large noises grate on my neurological symptoms. Standing for hours tends to make me tired and cranky. No matter how much I care about a cause, I have to set boundaries on involvement to protect my health.

Last January I asked myself, if I want to make a difference but don’t have the capacity to do so in a traditional way, what other ways are there?

In the world of the internet, it turns out, there are many ways to get involved right from your couch. I discovered an online Disability March, which, as described on its website, is “a caucus of the Women’s March open to persons with disabilities and their advocates. The group began as a ‘virtual’ march of disabled activists who could not take part in the physical Women’s March in January 2017 but nevertheless  needed to have their voices heard, and has evolved to allow disability-rights activists to come together to share opportunities for the members to engage in various aspects of activism related to disability rights and healthcare.” There is also the Facebook group “ACA Stories: How Obamacared for Me”, which is a space for stories about the positive ways in which Americans’ lives have been touched by the Affordable Care Act.

If you care about these particular issues, you can share a quick story with one of these groups, and know that you’ve helped to make a difference. If you can’t type, how about asking a friend to post for you, or to help you research other causes and groups that you can participate in virtually? Whatever it is you want to get involved in, it’s likely an online group or app already exists to fill the need.

And if you’re not yet well enough to get involved, be gentle with yourself. You are currently involved in the most important cause of your life: reclaiming your health. Once you’ve done that, you can broaden your reach. In my view, there’s no better activist than one who has been in the trenches. If you’ve fought for your life, you can fight for anything.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

What’s Luck Got to Do with Lyme Disease?

by Jennifer Crystal

For many Lyme disease patients, luck starts with getting an accurate diagnosis.

 

Whenever someone hears my story and says, “Wow, you’ve really been through the wringer,” I respond, “Yes, it was a long haul, but I feel really lucky.”

Eight years of misdiagnosis, three years in bed, one year on intravenous antibiotics, and countless missed life events doesn’t seem so lucky, but that’s not how I look at it now. I’m lucky that I was diagnosed at all. I’m lucky that I fell in the hands of a good Lyme-literate doctor (LLMD) and got treatment. I’m lucky that I lived in a state where insurance covered that treatment.

So much of Lyme disease is just luck, good and bad.

My medical trajectory started with the bad luck of being bitten by a tick. I was in the back woods of Maine. I wasn’t focused on prevention and wasn’t wearing bug repellent, and I definitely didn’t know to check for ticks. These are factors I could have better controlled, which might have kept that original tick away from me. Then again, I have lots of friends who spent similar summers in those woods, who were similarly careless, who were never bitten by a tick. So even if I had been more careful, my being bitten may have just been bad luck. The fact that my tick also delivered three co-infections in addition to Lyme was even worse luck.

Recognizing the role luck plays in Lyme disease lets us off the hook a little. I’m not saying we shouldn’t be vigilant; anyone who spends time outdoors must be. We need to take the best care of ourselves we can. We need to follow the protocols our doctors give us. When those treatments don’t work, or when we aren’t comfortable with our doctors, we need to do something about it: we need to find new physicians, or work with our practitioners to try different mixtures of medications. We need to figure out what lifestyle changes we can implement and adjunct therapies we can try to best improve our health. We need to do everything in our power to get an accurate diagnosis, to get proper treatment, and to fight for what we need.

And then we have to let go and realize, like to stoics, that the rest of it is out of our control. The rest of it is up to luck.

Patients who get an early accurate diagnosis are lucky. Patients who respond well to treatment are lucky. But all of us have some bad luck along the way. Some of the antibiotics I tried didn’t work, or had side effects I couldn’t tolerate. One made me so nauseous I spent a week running to the bathroom. Another caused gallstones so big that I had to have emergency surgery. It took a long time to find the right “cocktail” of medications, and even then, I had bad patches. I still have them, especially when I change a medication or hit a stressful period in my life.

But still, I am getting better. So in the larger picture, I consider myself lucky.

The most important thing is to get an accurate diagnosis, and the best way to do that is to see an LLMD. Patients write to me all the time with questions and fears, wondering if they’ll ever get better. If I read that they’re already seeing a Lyme specialist I breathe a sigh of relief. I know they are in good hands, and the best I can do is wish them good luck on their journey.

If you need help finding an LLMD, please click here. Then know that no matter how hard the road has been, no matter how hard it might be, luck is likely on your side.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

The Mighty White-Footed Mouse

by Mayla Hsu, Ph.D., GLA Director of Research and Science

What makes the white-footed mouse more mighty than a lab mouse when it comes to tolerating Borrelia burgdorferi, the bacterium that causes Lyme disease?

 

When we think of mice, we envision cute furry rodents with big eyes and little feet, and we don’t usually associate them with disease. But when we discuss Lyme disease, we need to consider the wild, white-footed mouse because it is one of the most important reasons for the spread and continued existence of this illness.

Dr. Alan Barbour at the University of California at Irvine is a pioneer in tick-borne disease research and a Global Lyme Alliance grantee. He published a recent article that explained why it is important that we study Lyme disease in wild mice and not only in lab mice.

Peromyscus leucopus—the scientific name of the white-footed wild mouse—is abundant in North America, along with its close relative, Peromyscus maniculatus. Together, they act as natural hosts, or reservoirs, for numerous disease-causing microbes. This means that they provide a long-term home for pathogens to survive in nature. They are also blood meal sources for vectors, like ticks, which transmit the pathogens from one animal to another.

One reason why we should study Lyme disease in wild mice, Dr. Barbour writes, is because they are genetically quite distant from lab mice. Peromyscus mice are actually more closely related to hamsters and voles than to lab mice, which are genetically grouped with the black rat. The genetic distance between the species might explain why there are important differences in how wild mice and lab mice respond to pathogens like Borrelia burgdorferi, the bacterium that causes Lyme disease.

Capture of wild field mice indicates that compared to other small mammals, they are more heavily burdened by ticks. Although there is variation between different studies, up to 100% of these ticks have been found infected with B. burgdorferi. Dr. Barbour summarized studies showing that in the northeast and north-central United States, P. leucopus mice typically get infected during the spring and summer months. As part of their immune response, they produce antibodies in their blood that recognize OspC, a protein on the outside of the bacteria. This also occurs in lab mice and in humans infected with Lyme disease, suggesting that this part of the immune response is common to all three.

blog_mayla_white footed mouse_quoteBut what’s different about wild Peromyscus mice is that they exhibit no obvious pathology. In multiple studies, even though the bacteria could be recovered from the urinary bladder, kidney, heart, spleen, ears, tails and joints, there was no evident organ damage. There was no variation in the types of immune cells found in infected animals as compared to uninfected animals. Infected animals did not appear to differ in their body weight from uninfected ones, suggesting that there was no obvious impact on overall health. And the amount of time that Borrelia-infected P. leucopus mice spent running on their exercise wheels did not differ from the uninfected mice.

In contrast, lab mice, when challenged by Borrelia burgdorferi infection, typically develop arthritis, carditis, and joint inflammation. Studying infection in these animals is useful to understand how the bacteria cause disease and the dysfunction of the immune response, but that only tells part of the story.

It’s not well-understood why Peromyscus mice don’t get sick from Lyme bacteria, but we do have some clues. It has been speculated that B. burgdorferi infections have occurred for hundreds of years in North America. With time, it is likely that the host-pathogen relationship evolved into a balance allowing both of them to survive. While in the mouse, the pathogen has to reproduce to sufficient levels so that it can enter ticks and be transmitted from one animal to another.  But the pathogen can’t kill its host, or weaken it so that it can’t efficiently reproduce. The mouse host must live long enough to have progeny, in order to produce a new generation of hosts in which the pathogen can be maintained.

Somehow, Peromyscus mice are able to tolerate Borrelia infection without any obvious illness. If we study these animals, especially by comparing the immune response in both uninfected and infected mice, we may be able to learn much that might explain how Peromyscus mice avoid the damage caused by B. burgdorferi infection.

Lyme Lies

by Susan Pogorzelski
#MyLymeLife

How does your illness speak to you?

 

There it is again—that voice in the back of my mind, growing louder, crushing my confidence and making me feel worse.“You’re sick,” it reminds me. “You’re always going to be sick.”

I could close my eyes, but I’d still hear that voice. It’s like a shadow I can’t shake off. It’s there when the fatigue overwhelms me, when I can barely lift my head from the pillow to glance at the clock and see that hours have passed, but I still can’t wake up. The voice is there when the pain moves through my legs, squeezing the muscles, hurting right down to the bone. It’s there when the heels of my feet burn, when my heart flutters to its own eccentric rhythm, when the fever spikes.

“You’ll never travel again like you want to,” it says. “You’ll never go back to work like you need to or have the writing career you dreamed of.”

It’s there, the voice reminding me of everything I’ve lost, the future I could have had.

“You’ll never be well enough. You’ll never be good enough.”

Then, it grows louder still, pulling me in deeper.

“You’re helpless, useless, hopeless…”

The words are familiar. I’ve heard them before in a voice that sounds like my own. They’re the refrain I repeated for nearly a year when I was first diagnosed with Lyme Disease, when it was hard to see past the hour, never mind the day, in which I suffered. I gave into that voice, listened to those words like they were lyrics to a song stuck on repeat.

They’re right, I thought on the days when I could stay awake only for minutes at a time. I was helpless, useless, hopeless…

For months, that voice taunted me, until the day I stayed awake a little longer, until the day the pain subsided just a fraction, until the day the fever broke. It wasn’t until I began to feel better, until I began to find some reprieve from the symptoms and suffering of this illness, that the voice that had sounded so much like my own began to sing a different song.

“Be patient, dear girl,” it kindly said. “You’re so much stronger than you feel right now.”

The day I discovered self-compassion in the face of this illness was the day I learned that Lyme lies.

It lies when it tells you you’ll never get better. It lies when it tells you you’ll never be independent again. It lies when it tells you you’re without purpose in the world.

It lies when it tells you this disease is all that you are.

You are more than this disease.

This week, my recovery has had a bit of a setback. Those familiar symptoms have returned, leaving both my body and spirit weakened, leaving room for that voice to return and whisper its tale of destruction. It’s easy to let go of the self-compassion I’ve cultivated—a type of self-care, even self-preservation, that’s been necessary for my emotional healing. It’s easy to listen to the voice that wants me to succumb, to remember all that I’ve lost instead of all that I still have. But I won’t.

Instead, I’m reminding myself that I’m more than my illness, more than the sum of this disease.

I’m more than the lies that Lyme likes to tell me.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

What the proposed NIH budget cuts mean for Lyme disease research

GLA CEO Scott Santarella shares his view on what the proposed NIH budget cuts could mean for Lyme and tick-borne disease research.

 

by Scott Santarella, CEO, Global Lyme Alliance

As we learned last week, the Trump administration’s projected fiscal 2018 budget constitutes a radical reallocation of federal spending. The $5.8 billion in proposed cuts to the National Institutes of Health (NIH) budget would alone effectively defund thousands of biomedical research programs—in order to fund more military spending.

While this budget will be debated for some time to come, we are convinced that the proposed cuts would represent a grievous setback for Lyme and tick-borne disease research. The view that the security and prosperity of our country must come at the expense of medical research is simply incorrect. Research is an economic driver.

Government funding for Lyme and tick-borne disease research is already minimal, with only 17% of applications addressing Lyme approved by NIH every year. Yet the loss of even that small increment of funding would represent an unprecedented abandonment of those individuals suffering from this terrible disease.

Global Lyme Alliance is a dynamic and rapidly growing organization whose contributions to improved diagnostics and treatment modalities have been crucial. Still, it would take us years to supplant the lost NIH investment in Lyme and tick-borne disease research. The Lyme community cannot afford to face a gap of years in which research progress is static.

Lyme and tick-borne disease patients already face the great injustice of still having no definitive diagnostic test and only limited treatment options. Left untreated, or inadequately treated, Lyme’s victims suffer devastating health outcomes. To further compound that injustice by thwarting research progress is unconscionable. With 329,000 people in the U.S. diagnosed with Lyme disease annually, this is the wrong time for surrender.

Global Lyme Alliance will continue to do what it has always done to maximize its fundraising operations. But make no mistake, the loss of NIH research dollars would be deleterious beyond our imagining. We hope you will make your voice heard and send a clear message to your Congressional representatives to ensure federal funding levels for Lyme and tick-borne research remain strong.

Scott Santarella

Podcast: Tick-Borne Co-Infections, Bartonella and Powassan Virus

Bartonella is a tick-borne co-infection. As with Lyme disease, its symptoms can be debilitating.

 

While the most common tick-borne infection is Lyme disease, infected ticks may carry more than one kind of microbe or disease producing organism that can make humans very sick. The microbes are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease-producing organisms.

Dr. Mayla Hsu, GLA’s Director of Research and Science, and Dr. Harriet Kotsoris discuss Lyme and its co-infections in a recent podcast. Below is an excerpt of the podcast that focuses on Bartonella and the Powassan virus.

CLICK HERE to listen to the entire podcast.


Host: I’ve heard there’s a new tick-borne infection that’s somewhat controversial called Bartonella. Mayla would you like to tell us more about that?

Dr. Hsu: Sure. Bartonella is a bacterium that’s controversial in discussions of tick-borne illnesses because there is quite a lot of debate about whether it is actually spread by ticks and causes human disease. Now we know that it’s spread by fleas and body lice and sand flies, but ticks are a somewhat new idea that is gaining traction in some quarters. Bartonella is in domestic and wild animals and it causes various illnesses that we know about, such as cat scratch disease and trench fever, where people get bitten by fleas that are feeding on animals or by body lice. Now in recent years, Bartonella bacteria has been found in ticks in many countries around the world. The ticks do feed on host animals that carry Bartonella so it’s not surprising to find the bacterium in the ticks.

Humans with tick exposure, like hunters, have been found to have antibodies against Bartonella so that indicates they’ve been exposed, but whether Bartonella actually causes illness in healthy people is under debate. There’s no question that Bartonella is a big problem for people who are immuno-compromised and they can get sick, but even there we don’t know how much of it is acquired from tick bites versus flea bites. Now, if people do get Bartonella it’s diagnosed by looking for the DNA of the bacteria or by growing or culturing the bacteria, and then it is treated with antibiotics. Often the first symptom is striations or lines that look like stretch marks on the skin and it can progress into fever and lead to very serious illnesses including things like heart inflammation or endocarditis.

Host: A new class of microbe that is very different from the bacteria and parasites we’ve been hearing about are the viruses spread by ticks. Since they can’t be treated with antibiotics, should we be worried about them?

Dr. Hsu: The virus that is spoken about as transmitted by Ixodes or black-legged ticks, is the Powassan virus, which is also sometimes called deer tick virus. Powassan virus or deer tick virus are actually two different genetic lineages of very similar virus so let’s just call it Powassan virus. It was first described in the 1950s. Powassan virus can be very serious because in half of cases, 50% of cases, people have continued long-term neurological consequences and disability due to encephalitis, or inflammation of the central nervous system. The virus actually infects the brain. The fatality rate can be 10 to 20%, especially in the elderly, the immunocompromised or people with other health conditions.

The symptoms for Powassan virus are fever, vomiting, weakness, memory loss, and seizures. The diagnosis is made by doing a blood test or a spinal tap looking for antibodies against the virus. The treatment for Powassan virus is, as you said, it can’t be treated with antibiotics. They don’t work against the virus, so the treatment is mostly supportive. That is providing respiratory support, fluids, drugs to reduce brain swelling. Now, luckily Powassan virus is rare. There were 13 cases that were reported in 2013 to the CDC, so it’s actually not a really prevalent disease. It is found in actually a very low percentage of ticks, maybe three to 5% of ticks are co-infected with Lyme disease and Powassan virus, so it is there. It is present so we have to be concerned about it. Now overseas there are many more cases of a brain infection caused by ticks, there is tick-borne encephalitis, and that is also caused by a virus, a tick-borne encephalitis virus, that has been recorded and associated with serious illness.

Host: Obviously a lot of people haven’t heard of these co-infections spread by ticks, can you tell us about some of the major problems and how we cope with tick-borne diseases?

Dr. Hsu: One of the biggest issues is probably awareness. There are medical professionals who have heard of Lyme disease but may not have heard of these others.

Dr. Kotsoris:  Health authorities may not test for some of these if they’re unaware of them and then ordering the right diagnostic tests has to be done. The Lyme disease diagnostic by itself is highly inaccurate and so even getting that diagnosis is problematic. Without reliable molecular diagnostic techniques some tests are only available experimentally or at limited federal or state levels. Initial diagnosis is very difficult and you can’t sit around and wait for an antibody response, so physicians have to be better diagnosticians. They can not, as I said before, they can not sit around and wait for convalescent titers, antibody titers to indicate that the patient has had the infection. That’s four to six weeks after the initial infection. Until the FDA approves some of these experimentally available techniques, makes them more widely available to the frontline physician, we have to rely on clinical diagnosis.

Host: What about the treatment of tick-borne illnesses?

Dr. Kotsoris: It’s important to note the treatment for Lyme disease doesn’t cure the others necessarily, so proper diagnosis is critical to getting proper treatment that is specific for the co-infecting microbe. Also having two infections might make the symptoms tougher to treat. There are some research studies that indicate that co-infections actually make the illnesses more powerful individually. For example co-infections of Babesia and Lyme disease may make it harder to treat the patient than if he or she had only one of those.

Host: Are there other issues we should be thinking about with regard to tick-borne co-infections?

Dr. Hsu: I think there’s a lot we simply don’t know about the biology of co-infecting pathogens. For instance, we don’t understand a lot about how they grow in their host animals, more than one microbe. We don’t really understand how they get into a tick and how they survive in the tick, and very basic questions like infection of humans, from ticks to humans.

Host: Given all the lack of awareness, what kind of studies are needed to better understand and treat tick-borne diseases?

Dr. Hsu: There are some emerging illnesses now that are suspected of being caused by ticks but we don’t know for sure. We need more research. For instance, there’s a new illness that’s emerging called stari, S-T-A-R-I, and what that stands for is Southern Tick-Associated Rash Illness. We know that this is caused by a tick bite but we still don’t know what the pathogen or the microbe is that is responsible for the illness. Diagnosis, which we talked about is sometimes complicated. Some of the technology to diagnose some of these co-infections, like really sensitive molecular biology, looking for the DNA of the organism, is not readily available in some parts of the world.

Dr. Kotsoris: Travelers to other parts of the world may come home to the United States where the best of medical care is apparently available and doctors here may not know about those tick-borne illnesses, so education has to be a big part of it.

Host: Tick-borne diseases are a very big problem. Let’s hope that public health officials and the funding organizations take them seriously, especially since climate change is going to mean more sick people, more school and work absences, less productivity, and have a huge economic impact. Thank you for all the discussion today and thank you to all of you listeners.

CLICK HERE to listen to the entire podcast.

25 Ways to Be a Good Friend to Someone with Lyme Disease

GLA and The Mighty asked the Lyme community for some ways to be a good friend to someone with Lyme disease. Here’s what they said:

1. “Call, text or message regularly just to say ‘checking in.’ And ask if it’s OK to come by with coffee/tea/etc. and just sit with me, even if it’s just to watch TV. It can be lonely.” — Jennifer Nunn Box

2. ”Don’t ask all the time how are you feeling? Just offer to spend time and be OK doing anything or nothing. Don’t make them feel like they need to be full of energy and upbeat all the time. Try to learn about the disease so you can understand a little of what they are going through.” — Karen Nunes

3. ”Don’t suggest a symptom is something other than what it is. Be a good listener. Don’t rewrite the script.” — Sarah Red

4. “Believe me. If I look OK on the outside, I’m not on the inside.” — Jeannette Hefer

5. “Talk to your friend. Text them, FaceTime them, keep them in your life. Invite them over, ask to come over, make plans to go out but don’t be upset if they can’t follow through that day. Do everything you can to make sure your friend isn’t forgotten just because they may not be doing what you’re doing and are trying to get healthy.” — Cassidy Schod

6. “Just ask how we are doing, and don’t expect us to lie and say we are improving. Understand that just because we look good, we are still in immense pain and discomfort every day. Understand that it may take months or years to heal.” — Stephanie Tartaglia

7. “Don’t act like I’m faking it.” — Anonymous

8. “Call, check in, stop by with a bottle of wine. Understand that I can’t get out evenings to meet up like I used to. Bring a movie and hang out with me. Understand that I am lonely most of the time because my friends are all out enjoying life.” — Deborah J Winters

9. “Be flexible, and pray! I have a friend who says, let’s pick a few different days we could get together and you can let me know that morning if you are feeling well enough to have company. It is so nice to have her know that I have a hard time making and keeping plans because I feel terrible that day. It helps me feel less guilty, less isolated, and understood.” — Lisa Paganelli King

10. “Offer to help chop some veggies and help prepare something us Lymies can eat. Take a short walk. Remind us of our gifts and talents. Remind us that although we Lymers are going through something that can suck up our lives, let us know we still matter and life is beautiful.” — Toni Tolomeo Snyder

11. “Don’t give up on us when we keep canceling plans. Understand that sometimes we can do things, and sometimes we can’t. Keep contacting us if you don’t hear from us, and be prepared to come over and make tea and just hang out. It might seem boring to you but could be the highlight of our week.” — Kathlene Baker

12. “Just be there! When I actually make plans because I feel good, don’t cancel on me. This happened to me more than once and it tears me up!” — Natalie Smith

13. “Accepting my truths are reality. I feel marginalized every day by society and by my own family. I can’t imagine if somebody simply decided to ask questions and understand me instead of denying my reality.” — Kimberley Hodgdon Landsman

14. “Don’t give up! Know that it effects moods and sometimes makes us snippy, but we don’t mean it. We just want to feel cared about and not forgotten.” — Lisa Hart-White

15. “Don’t forget about me! Even just a quick call to check in and maybe help me run an errand.” — Claudia Recchio

16. “Don’t tell me to just get over it, I can’t just wish this away.” — Sherri Predovich Cunningham

17. “Just be there and be real, isolation is very dangerous for us Lymies.” — Linda Polizzi

18. “If a friend is too ill to get up from their bed, lie down with them. This is, very simply, true friendship.” — Paula Johnston

19. “Come over to play with our kids, because we can’t and it breaks out hearts every single day.” — Jennilyn Lynn

20. “Not to judge you if you’re not feeling well since they don’t know what you go through on a daily basis.” — Christen Wayland

Read the entire post on The Mighty.

Fear of Relapse

by Jennifer Crystal

Is Lyme disease ever really gone from your body? Relapsing is a constant reminder and reality that the bacteria are still lurking.

 

I am writing a memoir about my journey with chronic tick-borne illness. I avoided work on the manuscript for the last month not just because I was busy, but because I was scared. I’d hit the point in the story leading up to my 2007 relapse and I was terrified to write about it. This isn’t to say other parts have been easy to write; it can be difficult to revisit the angst and pain surrounding crushing fatigue, Herxheimer reactions, and migraines. That relapse looms as the very worst part of my whole journey. Ten years after that low point, relapsing is still my worst fear. It’s a worry many Lymies share.

Writing about the relapse meant I would have to confront that experience head-on. I shared my concerns with a writer friend, who asked what a relapse would look like for me. She hadn’t known me in 2007, and though she’d heard stories of what I’d gone through, she didn’t know the whole story of that period. Had it happened out of the blue? Had something caused it?

Lyme relapse can happen spontaneously, simply because all it takes for symptoms to recur is one dormant spirochete to start quietly replicating in the bloodstream. It’s possible that a Lymie could spend his or her days in a hammock on the beach and still relapse, because we can’t control what leftover spirochetes will do, the same way a cancer patient in remission can’t control when cancer cells start metastasizing again. That said, there are other factors that tend to contribute to Lyme relapse and we do have some control over them.

Because I had been feeling better, I stopped antibiotic treatment in summer of 2006. I continued to do well for several months, regaining so much strength that I was able to do a full workout at physical therapy. I was employed as an editorial assistant for a magazine, and was writing my first book. I still had some limitations, but I felt much better than in my bedridden days, and it seemed I would only continue to do so.

In November 2006, I moved to Vermont. I had been living in Connecticut with my parents for two years, and was ready to regain my independence. Instead of taking a small step, such as moving out on my own in their town, I rushed off to the outdoorsy environment I craved. But I wasn’t ready for that environment, and I didn’t realize that until I was there, five hours from my family and alone. I was not yet ready to ski, especially since my energy was now being spent on chores like food shopping, which my parents had taken care of in Connecticut. I knew how to fend for myself—I’d lived own my own in Paris and Colorado—but I didn’t have the physical stamina to do so in Vermont, not on top of taking care of my health and working. Very quickly, my fatigue returned.

I did my best to push through it, because work had suddenly picked up. On top of my usual writing and editing responsibilities, I was tasked with a huge research project that was far too taxing for a brain compromised by chronic neurological Lyme disease. It wasn’t long before I started experiencing brain fog, insomnia and anxiety again.

Then the muscular and joint aches came back, making it hard to type, and then the migraines, which felled me for whole days at a time. I didn’t have the energy to do laundry or cook, much less run errands. I saw myself headed back to the bedridden state I thought I’d left for good, and the mere idea of that terrified me. I became anxious about that possibility, anxious about not getting my work done, anxious about not being able to support myself, anxious that I wasn’t enjoying the Vermont lifestyle I’d envisioned. Stress, it turns out, is a leading factor in Lyme relapse.

“Getting that stressed out is like walking into a minefield of ticks,” my doctor told me when I called about the resurgence of symptoms. Stress causes a release of cortisol, which can speed up the reproduction of Lyme bacteria. The big move, the overload of mental work, the physical fatigue and the anxiety all created the perfect storm for me—especially because I was no longer on antibiotics. My system had no defense against the spirochetes that came raging back to life, replicating at such a rate that by February 2007 I was back in Connecticut at my parents’ house.

I could not stand the fact that I’d touched health, freedom, and independence, and then lost it all again.

I restarted treatment. It was a long, wobbly road, but eventually I battled my way back to remission once more. This time I took baby steps, moving just a few minutes from my parents, taking on smaller part-time jobs, really pacing myself, ever trying to ward off another crash.

I’ve been working to fend off relapse for a decade now. Even though I’ve gotten healthier and stronger—I moved to Boston, went to grad school, published my first book, started teaching, and started skiing—and even though I have a much better maintenance plan in place, I still fear relapsing. In a way the fear is good, because it keeps me on my toes;  it forces me to take care of myself, because I know how severe the consequences can be if I don’t.

When I explained all of this to my writer friend, she said, “Maybe writing about the relapse will be empowering. You’ll feel like you’re taking control over it.” Dubious, I gave it a try. To my surprise, the words have been flowing. I’ve written three chapters about my Vermont downfall. While I haven’t yet tackled the lowest point of my relapse, I’m getting closer to it. I’m learning that the best way to deal with fear is to grab it by the horns.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.

 

Do you have a question for Jennifer? Email her at [email protected].

How long did it take for you to get better?

I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.

What medicine and/or supplements did you take?

Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.

How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.

This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.

My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.

I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.

Do you have any communication strategies?

One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?

As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.


jennifer-crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

Why You Should Never Make Fun of a Restricted Diet

by Kerry Heckman
#MyLymeLife

For some patients with chronic illness, including Lyme disease, a restricted diet can improve their lives. So why the ridicule?

 

The jokes are everywhere. There is a popular meme that reads, “It’s gluten-free, sugar-free, dairy-free, soy-free, egg-free, & fat-free. They call it ‘water’ and you can buy it at Whole Foods.” Implying that the only thing someone on a restricted diet can have is water and only shop at grocery stores with a reputation of being pretentious. (Not that anyone on a gluten-free, sugar-free, dairy-free, soy-free and egg-free diet would ever eat anything that was fat-free, but that’s beyond the point).

I’m on a restricted diet and I’m often embarrassed to talk about it. Why am I embarrassed? Because there is a general consensus that special diets are a fad and only obnoxious people eat that way.

Why do I eat the way I do? By the time I was 34, I had already been diagnosed with two autoimmune disorders, later to be correctly diagnosed as chronic Lyme disease. I was in so much pain I couldn’t turn over in my bed without screaming. The doctors found so much inflammation in my spine and muscles in my back I was hospitalized for five days and underwent two biopsies. Conventional doctors offered no viable solutions.

An integrative medicine doctor encouraged me to try something called the autoimmune protocol diet, which is an extremely restrictive, low inflammation diet with no grains, no dairy, no sugar, etc. After only two weeks on the diet my back pain subsided and I was finally able to sleep. Eventually, the diet became too restrictive for me, so I modified it to meet my needs. Basically, I avoid processed foods, gluten, dairy and sugar. I had to give up a lot of the foods I love, but it changed my pain level from a steady eight to an intermittent two. When it came down to living in constant pain or giving up gluten, I had to choose the latter.

Nevertheless, I still get rolled eyes and laughter when I discuss my diet, even from people who know I’m sick. To be honest, before I got sick I probably would’ve reacted the same way. What people may not understand is that we don’t want to eat this way, we have to eat this way. We love gluten. Gluten makes doughnuts doughy, bread spongy, and pasta unsticky. It was next to impossible to give it up, and I still miss it every time I pass a bakery or pizza place.

The harsh reality is there has been an upsurge in people diagnosed with autoimmune and chronic diseases. You probably know someone with one of these diseases. Do you remember knowing so many people with such diseases the 1980’s or even the 1990’s? Probably not. I know I didn’t. Autoimmune disorders and chronic immune system dysfunction numbers are skyrocketing.

Integrative and functional medicine practitioners believe these illnesses are caused in part by the standard American diet. If people better understood the link between of certain foods and inflammation, they would realize it’s no laughing matter. We need a wake up call that our immune systems cannot handle all these inflammatory foods. For some patients with chronic illness changing their diet can save their lives. For a good example, read about Dr. Terry Wahl’s battle with MS and how she got her life back when she changed her diet.

Consider approaching the issue from a place of compassion. What if you had to give up your favorite foods? What if one piece of birthday cake made you ache for days? What if you had to stop going to all your favorite restaurants? What if you couldn’t have a glass of wine on a Friday night?

I understand restrictive diets are challenging to accommodate in social situations. It’s why many people on these diets stop going out entirely, leading them to social isolation and even depression. They are forced to choose between friendships and unrelenting symptoms.

In these situations the host can offer to dine at their own house or choose an activity that doesn’t involve food. As the demand for healthy options keeps growing, I am constantly finding new restaurants that fit my dietary restrictions, so maybe ask your guest where they are able to dine.

There are a few areas of concern one should be conscious of when discussing dietary restrictions. One is that it is very expensive and time consuming to eat a low-inflammation diet; therefore, people with limited resources might struggle to maintain it. A second concern is that some people don’t have dramatic results from the diet, which can be disheartening. And finally, some people take restricted diets to the extreme so it can itself become an eating disorder.

Everyone deserves to eat what they want without being put down. We have to stop mocking people who try alternative ways feel better. There are people who don’t have chronic illness who follow a special diet and the reasons are still valid—such as losing weight, gaining energy, and feeling better about themselves. Someday not so far in the future, no one will be on a restricted diet, because everyone will be.

I love lighthearted fun and joking around, but it’s time to take this one off the table.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Addressing the Ongoing Controversy Facing Lyme Doctors

In the January 15, 2017 issue of the The New York Times Sunday Magazine, a column called “The Ethicist” ran an item under the headline “What to do about a physician who may be a quack.” In it, columnist Kwame Anthony Appiah, who teaches philosophy at New York University, answers a question from an anonymous letter writer who believes an Ivy League college-educated, New Jersey Lyme doctor is a “quack.” While GLA does not typically comment on the practice of individual physicians, and does not know the NJ physician the author attacked, the allegations of the author were so unfair and inaccurate that GLA Chairman Robert Kobre felt compelled to respond.

 

Dear Mr. Appiah:

I was disturbed to read the letter in your January 15th column from someone who claims to be a Ph.D. scientist. The person writes that they worked for a company that researched Lyme disease—and this, therefore, qualifies them to be a Lyme disease “expert.” Yet their commentary proves otherwise.

Global Lyme Alliance's Second Annual "United For A Lyme-Free World" Gala
Robert Kobre, Chairman, GLA, Uniting for a Lyme-free World Gala, 2016

As Chairman of the Global Lyme Alliance, the nation’s largest 501 ©(3) dedicated to Lyme disease research and education, my team and I work with and support some of the world’s leading researchers focused on Lyme disease. A true Lyme disease expert would know that a physician does not have a definitive set of tools in which to diagnose Lyme, like one does for other illnesses, such as cancer.

The “expert” complains this Ivy League educated doctor is not trained in Lyme disease. How does he/she know? True, most doctors are not trained in the complexities of Lyme disease; it is not taught as a separate course in medical school and most doctors do not know enough about the disease to even consider it. However, some physicians make the effort to self-educate through Continuing Medical Education (CME) classes, like those offered by GLA. There is also ample published research and regular conferences on Lyme disease available to physicians.

One of GLA’s goals is to educate the medical community and the public about the prevalence, prevention, symptoms, and risks of Lyme disease. Over the last 10 years, GLA has supported many of the breakthroughs in Lyme disease research and we fund researchers at the world’s leading medical institutions who have dedicated Lyme disease efforts. All of our many projects have been published in peer-reviewed medical journals. We have invested millions of dollars toward various types of diagnostic tests and treatments and we have a world class Scientific Advisory Board which screens all research grants.  We have made significant progress.  Thanks to our work we know that the Lyme disease bacteria is unique and complex. Therefore the oversimplification of this “expert” is disingenuous.  Without biomarkers and a test, how would this “Lyme scientist” who failed to commercialize a diagnostic tool or cure at his last job, know if a doctor is over or under diagnosing Lyme disease? He/she wouldn’t.

Unless a patient walks into a doctor’s office with a new rash (which doesn’t always appear on Lyme disease patients), is holding the infected tick (most people don’t have the tick or can’t recall the tick bite), and can show the bite zone, a physician must rely on a range of criteria to make a diagnosis. In New Jersey, a Lyme-endemic state, a physician can only rely on clinical judgment, understanding of the local tick environment and, if lucky, a positive blood test. However, the current Lyme diagnostic only tests positive approximately 50% of the time.

By anonymously attacking a physician trying to treat patients, the letter writer is in essence attacking all of us in the Lyme disease community. Instead of attacking a physician who has no reliable blood test, scan, or culture to work with, and is trying to help very sick people who may have the fastest spreading vector-borne disease in the US, I would suggest a better use of time for your writer would be to take a class offered by GLA and then submit a research proposal to us which our real experts will review for funding.

Lastly, this “expert” complains that this doctor orders treatments which are not covered by insurance.  A true expert would know that GLA-published research has shown that the standard treatment covered by insurance for early Lyme disease still does not eradicate the disease in up to 20% of patients. We do not know if the patient cohort of this doctor are early in the disease when it’s easier to treat or late stage when standard treatments have a low yield for success.

GLA does not opine on individual physicians’ practices.  However, we cannot stand idly by when a person proclaims to be an expert, when they are not, and in so doing may harm patients by disrupting care on false pretenses. If this expert would help us find effective treatments that insurance companies would cover, that would be a far better use of his or her time and help a lot more people.

Sincerely,

Robert Kobre
Chairman, GLA

It’s OK to Be Angry

by Jennifer Crystal

What role does anger play in your Lyme journey?

 

For the last three winters, I have had the opportunity to teach an intensive “Healing Through Writing” course at my alma mater. Towards the end of the term, students read some of my own work, so that they can ask me questions about my medical journey and writing process. This year, a student threw me a curve ball. “Weren’t you angry at your body for letting you down?” she asked.

I paused. I experienced many forms of anger in the two decades I’ve been sick with Lyme. Anger, when no one could diagnose me with anything other than “stress” or “being run down.” Anger, when people told me the symptoms might all be in my head. And yes, anger once I finally got diagnosed and realized how long it would take for the antibiotics to work. I was angry at the all the doctors who had missed the diagnosis. Angry at the tick for getting me into this mess.

But had I been angry at my own body for letting me down? I had to really think about that one.“Yes,” I blurted out, quicker than I meant to. It’s like my body was saying, “Yes, you were mad at me.” I heard myself say, “For years I was so angry that my body wouldn’t get well as fast as I wanted it to.” I remember being mad when I had a Herxheimer reaction; mad when I couldn’t control how I would feel day to day, and often had to cancel simple plans at the last minute; mad when I woke up feeling worse than when I’d gone to bed, and mad when I had a fever or a migraine or my fingers ached too much to type.

I was mad at the illness. But when I really think about it, I was mad at myself, too.

I explained to my students that for a long time, there was a vast disconnect between my mind and my body. My body was stuck in park but my mind was in overdrive, not just from racing neurological symptoms, but also because of my desire to get up and moving and back to the high-functioning life I’d always led. My mind still wanted to be productive, active and successful, and I was angry at my body for not being able to do so.

It was precisely this disconnect that prevented me from getting well.

Sure, I got better. The antibiotics worked and my symptoms abated. But when they came raging back a few months after stopping treatment, I was, as my student had suggested, angry at my body for letting me down. Really, it wasn’t my body’s fault. It was my fault for diving into a high stress work and living situation without taking any baby steps in between. It was the Lyme spirochetes’ fault for taking these stressful conditions as an opportunity to replicate. It was, once again, the original tick’s fault for biting me and starting me down this long path.

I was angry, but it wasn’t my body’s fault. My body fell victim to the tick, and to Lyme, Ehrlichia, Bartonella and Babesia. It fought and fought against those illnesses and their debilitating symptoms. And my mind fought against my body, willing it to work harder, to get better faster.

A mind and body so vastly out of sync can’t be well, in the same way that two people constantly screaming at each other can’t suddenly get along. Those people have to stop and listen to each other. They have to really hear each other’s needs and be willing to compromise. The same is true for the body and mind. It wasn’t until I relapsed that I realized I couldn’t keep fighting with my body. I had to accept my chronic illnesses and learn how to incorporate them into the life I wanted to live. My body wasn’t something to be dragged along; it was the vehicle that was going to get me through life, and I needed to take care of it.

I started being gentle to myself. Instead of berating myself for having a bad day, I switched my messages to positive ones, saying things like, “Good job, Jen! You only did one errand today and then rested, and that means you’ll be able to run another errand tomorrow!” My anger turned to gratitude, and that made a huge difference in my recovery.

Of course, I still get angry sometimes. I still get “Lyme rage,” that is, going from 0 to 60 over something small just because I’m overtired. The difference is that I don’t get mad at myself for being angry. I recognize that it’s okay to be mad. I let myself sit with it for a short amount of time. And then I move on.

In my “Healing Through Writing” class we talk about the stages of grief, which include shock, sadness, anger, denial, bargaining, acceptance and healing. These stages are applicable to any traumatic situation, including serious illness. I tell my students that there are two important points to remember about these stages. The first is that they are nonlinear. It would be nice if we could move through sadness and anger and then stay in acceptance and healing, but unfortunately it doesn’t work that way. Instead we spiral through these emotions, working through shock and denial and getting to a point of acceptance, but then having an angry day before getting back to a steadier place. The spiral itself, though, is always moving up, as if on graph. We may dip down in to more “negative” places, but overall, we are moving forward.

I put negative in quotation marks because the other thing to remember about these stages is that they are all important. We tend to think of emotions like frustration, anger and sadness as bad, but in fact they have an upside, too. Without them, we couldn’t get to acceptance or healing. The key, of course, is not letting ourselves stay in those negative places for too long. I find it helps to recognize the emotion, allow myself a set amount of time to deal with it, and then get up and do something positive and unrelated. If you’re well enough, this might be taking a walk or calling a friend. If you’re bedridden, it might be flipping through a light magazine or listening to a peppy song. You can’t control what emotions will come up at any given time, but you can control your reaction to them.

I’m glad my student asked me such a thoughtful question; it gave me space to reflect upon the role anger plays in Lyme disease. What questions do you have for me? Every couple of months, I am going to dedicate one of my columns to answering your questions. Please email them to me at [email protected].


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

The Lyme Disease Divide

How to Make Sense of Conflicting Lyme Disease Facts

 

by Scott Santarella, CEO, Global Lyme Alliance

With the possible exception of HIV, no infectious disease in recent history has been as misunderstood and divisive as Lyme disease.  On one hand, there are tens of thousands of people suffering from debilitating physical and neurological symptoms who are unable to get the help they need from physicians, public health officials and insurance companies. On the other hand, the Infectious Diseases Society of America (IDSA) and the Centers for Disease Control and Prevention (CDC) maintain that Lyme disease is “easy to diagnose, easy to cure” and dismiss the persistence of symptoms over time, even after treatment. It’s no wonder that many people are confused about Lyme prevention, symptoms and treatment fundamentals.

Recently we’ve attended a number of public Lyme discussions held in Lyme endemic states and are both encouraged and concerned about how the disease is being discussed by the public and some in the medical community.

One event we attended focused on the very real threat of Lyme disease and children. Children ages 3-14 have a higher risk of contracting Lyme because they are physically closer to the ground, where ticks are plentiful. Children play in the grass, roll in leaves, run through bushes, thus increasing their exposure to Lyme-infected ticks. But because the symptoms of Lyme can be varied and non-specific—headaches, joint pain, anxiety, confusion, memory loss, anger, insomnia, for example— parents and teachers may not realize their children are ill. And physicians who are not well-versed in Lyme may not attribute it to the illness.

We were glad to hear speakers talk about the challenges in diagnosing Lyme and co-infections. If the disease is left untreated, it can cause a host of problems that can severely affect children’s long-term health, their behavior and school performance. Current Lyme tests are highly inaccurate, so diagnosis should be a combination of testing and a consultation with a Lyme-literate doctor.

Those attending the event walked away with a clear understanding of the true challenges related to Lyme disease in children. And also the importance of being a strong advocate for your child—you know their symptoms better than anyone. However, we attended another talk that was riddled with common misperceptions about the disease’s symptoms, diagnosis and treatment. A few examples:

What We Heard: Lyme is a very treatable, curable disease.
FACT: Although Lyme can be cured if diagnosed and treated in the early stages, up to 20 percent of those who are treated still go on to develop serious chronic symptoms including severe fatigue, muscle and joint pain, insomnia, headaches and “brain fog.”

What We Heard: It takes 36-48 hours for tick to infect a person.
FACT: The longer a tick is attached, the higher the risk of transmission. But it is possible to get Lyme disease even if a tick is attached for less than 24 hours.

What We Heard: If you have Lyme, you will see a clear bull’s eye rash, unless it’s on your back or somewhere hard to see.
FACT: Not everyone who has Lyme exhibits a rash, much less a bull’s-eye rash.  At least 20 percent of patients never develop the rash and fewer than 50 percent of Lyme patients ever recall seeing one. If you are “lucky” enough to see any type of rash, take a picture to show your doctor. A flu-like condition is also a common sign of Lyme infection and it can occur with or without a rash.

What We Heard: There’s a lot of bad press about the tests not being good.
FACT: There is still no reliable diagnostic test for Lyme. The standard blood test lacks sensitivity and is more than 55% inaccurate.

What We Heard: You shouldn’t need more than 4 weeks of antibiotics, 6 at the most if the patient requests it.
FACT: Existing guidelines from the CDC recommend against treating Lyme disease-positive patients with antibiotics for more than 28 days. However, up to 20% of patients treated with this recommended course of antibiotics will have lingering symptoms such as fatigue, pain, or joint and muscle aches. Longer treatment is advocated by the International Lyme and Associated Diseases Society (ILADS), based on a patient’s symptoms.

What We Heard: It’s very atypical with late Lyme disease for one’s hands and feet to be affected.
FACT: Although knee pain is most common in late-stage Lyme, the disease can cause pain and tingling in other body parts. In addition to Lyme, a tick can carry other tick-borne co-infections as well such as Babesia, Bartonella and Ehrlichia and transmit them in a single bite. When a patient suffers from atypical symptoms, a doctor must also consider possible co-infections as the cause.

What We Heard: Getting a tick tested for Lyme is unnecessary unless you think it helps the town learn how many cases of Lyme disease it has from ticks.
FACT: Some doctors will not treat a patient until symptoms of Lyme disease have manifested and this loss of precious treatment time often results in more severe symptoms. Tick testing can help you make treatment decisions before symptoms arise since testing may reveal the presence of other disease-causing co-infections the tick is carrying and transmitting.

The challenges in diagnosing Lyme and its co-infections early make it difficult for both the patient and the clinician. Knowing the facts about the disease can help. Your best option is strong prevention, but that’s not fail-proof. If you feel that you or someone you love may have Lyme, learn the symptoms and contact a Lyme-literate doctor for guidance. Please explore our website for the latest information, resources and support.

Scott Santarella

 

 

 

Keep It Simple: You’re Just Tired

by Jennifer Crystal

Fatigue is such a central part of Lyme disease that it can be easy to overlook. Don’t.

 

Recently I was on the phone with a friend telling her my woes. Angst about one area of my life led to anxiety about another, until I’d snowballed into an overanalytical, weeping mess.

“I think you need to just go to sleep,” the friend said.

I looked at the clock. It was almost my bedtime. Maybe I was just tired. Maybe in the morning my issues would seem smaller and more manageable.

Of course, they did. With a good night’s sleep, I was able to look at things with a clearer mind and more centered emotions. This was hard for me to understand when I was so tired because fatigue—especially the crushing exhaustion of Lyme—can make it impossible for us to see straight. It can make it difficult for us to recognize that when we’re feeling like our worlds are falling apart, sometimes the only real problem is that we’re tired.

Fatigue is such a central part of Lyme that it can be easy to overlook its various gradations. Lyme patients are tired, to some degree, all the time. For years, I struggled with a flu-like fatigue that left me shackled to the bed. Walking to the bathroom, lifting a dish from the table, and drying my hair were physically overwhelming tasks. Despite that incredible exhaustion, I was often unable to fall asleep, turning me into what my doctor once described as “a woman with her hair on fire.” A person is considered legally insane if they haven’t slept in 72 hours. At times I was awake for weeks on end.

After months of antibiotic treatment complemented by appointments with a sleep specialist, neurofeedback sessions, cognitive behavioral therapy, and sleep medication, I eventually was able to get a good night’s sleep. Of course, it’s all relative; those nights often still included heavy sweats and crazy nightmares, but at least my brain could rest. Over time the bad nights lessened in severity and frequency, and I was able to get more restful sleep, including restorative afternoon naps. With more hours logged in my sleep bank, my overall health improved. My body was finally getting the rest it needed, and my symptoms started to abate. Moreover, I became less of that weeping, emotional mess.

The problem with this chronic illness is that sometimes old symptoms flare, and when that happens, it’s hard to figure out what’s what. Fatigue can return virtually unnoticed. Even with my improved ability to sleep, I still get tired when I push myself physically or neurologically, and sometimes it’s hard to see that I’ve pushed too hard until it’s too late. Then, suddenly, I get overly tired and overly emotional. My thoughts grow repetitious. The songs and words that are always running in my head get louder. These flare-ups remind me of my worst Lyme days, and I start to worry that the castle is crumbling. Is my anxiety a sign I’m relapsing or neurosis? If I can’t nap for two days in a row, will I ever be able to nap again? Have I done myself in?

“No,” my mother tells me every time this happens. “You’re just tired.”

And almost always, after a neurofeedback session and an integrative manual therapy session and several good days of rest, my body and mind calm down. I return to my baseline of remission, where I function within a structure of good rest, where I work and write and socialize, where I offer a steady hand to friends needing emotional stability instead of the other way around.

When I was in high school, I struggled with math and science. Recognizing my tendency to overthink answers, my biology teacher used to walk by my desk during exams and whisper, “K.I.S.S.” The acronym stands for “Keep It Simple Stupid” and was first used by the U.S. Navy in 1960 as a design principle: designs work best when they are simple and not complex.

Same is true for our thoughts when we are overtired. Sometimes we do have issues that cause true anxiety, and sometimes symptom flare-ups are true signs of trouble. More often than not, though, we simply need sleep. I try to keep that in mind now when my hair starts to blaze. Next time, before I call a friend and let loose a snowball of angst, perhaps I’ll just crawl into bed and make the call in the morning, when things are almost always better.


jennifer-crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

A Matter of the Heart

by Jennifer Crystal

Lyme carditis: When it comes to maladies of the heart, don’t overlook Lyme disease and its co-infections.

 

In the summer of 1999, after studying abroad in Paris, I backpacked with a friend through Europe. We slept on trains, stayed in youth hostels, and met hundreds of fellow college students wearing small packs on their fronts and campers’ packs on their backs. We were sun-kissed, culture-saturated, and happy. The world was different then, and we were lucky to have had such a carefree experience.

Well, it was carefree for my friend and fellow travelers. But for me, something wasn’t quite right.

As I moved from country to country, I started noticing a pulling sensation in my chest. I would be walking down a street, or waiting for a train, and suddenly feel something akin to a tight rubber band being stretched from one side of my breastbone to the other. It would come on without warning, but then dissipate, until I’d feel it again a day or two later. I brushed the sensation off as strain from my backpack, which easily weighed fifty pounds.

But I felt the pulling when I wasn’t wearing the pack, too. Back in the U.S., I decided to make an appointment with my primary care doctor.

The previous semester, a student at my college had dropped dead due to an undiagnosed heart condition. Her story was in the back of my mind as I traveled, and I relayed it through fearful tears to my doctor. I remember the soft touch of his hand as he laid a reassuring palm on my forehead. “Ohhh, how awful,” he said. “Of course you were worried. But no, that’s not what’s going on here.”

What was going on, he said, was costochondritis: inflammation of the cartilage that connects the ribs to the breastbone. The doctor was able to diagnose it by pressing gently on the area, which felt bruised. He explained that while painful, the condition was nothing to worry about, and might have been brought on by the strain of carrying my pack or by stress.

That latter reason was a catch-all rationale I’d heard repeatedly in the two years leading up to my European tour. During that time I’d wrestled with an on-and-off flu, frequent bouts of bronchitis, idiopathic fevers, and hypoglycemia. No doctor had ever drawn a connection between those symptoms, and when standard lab tests came back normal, I was told I was run down or stressed—or that maybe it was all in my head.

blog_jennifer crystal_matter of the heart_lyme carditis_quote

In fact, my body was harboring undiagnosed tick-borne illnesses: Lyme, Ehrlichia, Babesia and Bartonella. It would be another six years before a specialist drew the right connection between the symptoms and made an accurate diagnosis. The costochondritis was yet another clue that was overlooked, as was the tachycardia (racing heartbeat) I sometimes experienced. Lyme bacteria can squirrel into all organs, tissues, and cells, and if it invades heart tissue, it can cause Lyme carditis, which can manifest in a number of ways: costochondritis, tachycardia, bradycardia (slow heart rate), heart block (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms), and myopericarditis (swelling of the heart).

Comparatively speaking, my symptoms were mild, and once I was accurately diagnosed and treated, I never experienced them again. Renowned oncologist Dr. Neil Spector was not as lucky. As he details in his memoir Gone In a Heartbeat, Dr. Spector experienced 16 years of episodic alternating tachy- and bradycardia, even once having the symptoms of a full heart attack. His heart rate would always return to normal, though, and his symptoms, like mine, were often blamed on stress. By the time Dr. Spector was accurately diagnosed with Lyme, he had dealt with brain fog, stiffening of the veins, visions of bright lights during sleep (later associated with lack of oxygen to the brain due to a slow heart rate), heart block, weight loss, and arthritis. He had a permanent pacemaker, a defibrillator, and ultimately underwent full blown heart failure and a heart transplant.

Had Dr. Spector’s heart problems been accurately diagnosed from the start as Lyme-related, he could have avoided this near-fatal trajectory. If your symptoms have been written off as “stress” and you know—in your heart—that something deeper is going on, please persist in finding the right doctor and right diagnosis.

If you have already been diagnosed with Lyme but have not had your heart checked, please ask your doctor to do so. Though the CDC only reports carditis in 1% of Lyme cases, its severity can be a matter of life and death.


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: [email protected]

How to Be Your Own Health Detective

by Kerry J. Heckman
#MyLymeLife

Getting an accurate Lyme diagnosis can take years. With poor diagnostic tools and limited support patients are often forced to be their own health detectives. Here are six tips to help in the process.

 

The test result email popped into my inbox. I was driving and couldn’t look until I was stopped at a red light. This was it. The final clue in a seemingly never ending mystery. The diagnosis I’d been waiting almost two years to get. Two years of crippling health anxiety, and a slow steady decline, all resting on one simple blood test.

Many people who are eventually diagnosed with Lyme disease spent years leading up to it searching for the right diagnosis. Because of poor diagnostic tools, we’ve had to learn to be our own health detectives.

My journey started almost three years ago.I’d been ill for many years prior, but doctors assumed all my symptoms related to an autoimmune condition, Grave’s disease. Then, in May of 2014, my right leg started to feel “heavy” and was aching. I looked down and noticed it had blown up like a balloon. I ended up in the ER. At first, the doctors took it seriously, because they thought it was a blood clot. After the test came back negative, I was quickly discharged with no answers.

I went to my primary care doctor and she told me to wait a month and see how I felt. I immediately found a new doctor and he told me that unless the swelling was more than two inches different from the other leg I should simply ignore it. Ignore it? I was just supposed to walk around with a swollen leg for the rest of my life? No tests were ordered, no follow-up appointments were scheduled, so I moved on to another doctor, and another, and another.

Like a detective on an important case, looking up symptoms on the internet became my full-time job. I’d get lost down a Google rabbit hole for hours on end. My husband would practically have to pry my fingers from the keyboard. Every time I discovered a new lead I would follow it as far as it would take me, usually to another annoyed doctor, who’d send me away with an exasperated look. This continued for six months. Then I developed a new strange symptom a stabbing pain in my side. Again I went to the emergency room. This time I was admitted after a MRI revealed what looked to be an infection in my spine. It took the doctors five days to determine the infection wasn’t spreading rapidly enough to cause immediate concern. I was discharged again with nothing but another piece of paper with the diagnosis left blank.

From there I was passed between a rheumatologist and infectious disease doctor for another six months. When I went to see the rheumatologist, he said it was an infection; when I went to see the infectious disease doctor he said it was rheumatological.

But I didn’t give up. I found an integrative medicine doctor who was willing to think outside the box. She ran some preliminary tests for Lyme disease, and when they came back suspect, she referred me to a Lyme-literate medical doctor.

Those two years were some of the most difficult in my life, but I had to stay on the case. Here’s some advice on how to keep moving forward even when the puzzle seems impossible to solve.

How to Be Your Own Health Detective:

  1. Start thinking like one

From the very first symptom, everything is a clue. Keep an ongoing list of every symptom you experience. Even if it doesn’t seem like an important one, write it down. Keep a folder of all your test results. Compare and contrast the results over time. You never know what will end up being the missing link.

  1. Ask the right questions

Make a list of all your doctors. When a question pops into your mind, write it down under the heading of the best doctor to answer that question. By the time of your next appointment, you will a have a thoughtful list of questions to ask.

  1. Be confident in your symptoms

Before I had a diagnosis, I found that many of my symptoms were minimized or ignored by doctors. Some of these symptoms seemed small on the surface, but ended up being the most important clues. Don’t allow a doctor to tell you a symptom isn’t real,  is all in your head.

  1. Set boundaries when using the internet

Google and Internet forums are a good tool for health detectives. The problem is it can become an enormous waste of time and energy. Some good boundaries to set are to spend no more than 15 minutes a day researching symptoms or asking questions on forums. Make sure you verify everything you read with a trusted doctor; there is a lot of dangerous misinformation on the internet.

  1. Talk about your illness

When you talk about your symptoms with other people, sometimes they have good input. For example, back when my leg first became swollen, a friend of my mother suspected an infection. This was something none of the doctors had mentioned, but I kept it the thought in the back of my mind. It turned out she was right.

  1. Never, ever, ever give up

The worst thing you can do for your health is to give up. Sure, you’ll hit brick walls, but you’ll have to learn to break through them. Nothing is more important than your health, so you have to keep exploring until you feel satisfied with your care. If you can afford it, get a second opinion (and a third, and a fourth). Determine how far it is reasonable for you to travel and how much it is reasonable for you to pay, and then go to the best doctor you can find who fits within those parameters.

I was stopped by that red light for just long enough to open the email. I was scared to read it. What if it’s just another negative test to add to the list? But it was “positive.” After two long years of no diagnosis and countless doctors, I had my answer. I had Lyme disease. When you receive a diagnosis it can be a strange mixed moment of emotions. You are devastated to have the illness naturally, but even more so you are grateful to finally know what it is. My detective work paid off.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Groundhog Day: Casting a Shadow on Lyme Disease

by Jennifer Crystal

The repetitiveness of living with Lyme disease can feel like Groundhog Day, over and over again.

 

When I was studying in France, I had dinner with my landlady on Groundhog Day. Except, as I describe in my memoir Et Voilà, “there are no groundhogs in France, so February 2nd is instead marked by a national celebration of crêpes.” As we sat down to a decadent meal of savory and sweet crêpes, I tried to explain to my landlady the tradition of Punxsutawney Phil. She gave me a look that said, you must just sound crazy because you don’t speak French well.

Now that I am fluent in another language—Lyme disease—I have similar trouble explaining myself. Because so many of our symptoms are interior, Lymies have difficulty getting healthy people to understand how we’re feeling. One aspect that’s particularly tough to communicate is the repetitiveness of the disease: days that roll into one; daily medication routines; obsessive thoughts; word and song iteration. Lymies tend to feel like Bill Murray in the movie Groundhog Day, when his character discovers he is stuck living the same day over and over.

Unfortunately, our problems don’t resolve in the span of a two-hour movie. Instead, we find ourselves playing out the same scenes day in and day out. When I was at my sickest, I’d go to bed hoping I’d feel a little better in the morning, and wake up feeling either exactly the same, or worse. Because of Herxheimer reactions and the ebb and flow of Lyme treatment, the worse-before-better phenomenon became frustratingly common. With each new day, I didn’t know if I’d move forward, stay put or take two steps back. Rarely did I take a step forward, and even when I did, it would be quickly followed by one or more steps back.

Most days I’d wake up feeling like I hadn’t slept. Sometimes I was exhausted from eight or more hours of harrowing nightmares. I’d want to roll over and go back to sleep, but couldn’t. I had to stick to a very specific medication routine. Each morning I’d attach a bolus of antibiotics to my Peripherally Inserted Central Catheter (PICC line) and watch it drip for an hour while I ate breakfast. Due to dietary restrictions, that breakfast didn’t vary much. Afterwards I’d swallow at least ten pills of various shapes, sizes, and colors, then eat a spoonful of peanut butter, the fatty food necessary to absorb a glowing anti-malarial syrup often referred to as “liquid gold”.

After breakfast I’d try to send a few emails, though that was dependent on how stiff my fingers were and how thick my brain fog. Some days I could write paragraphs, and eventually wrote pages of my book. Other days I couldn’t type or hold a pen, and couldn’t concentrate on even one sentence. On those mornings I’d retreat back to bed, sometimes dozing off but often just lying there, listening to the clock tick.

This went on until lunch, when I’d break for another meal and more pills, and then I’d try again, often unsuccessfully, to nap in the afternoon. I’d get up in the evening when my family came home and would try to sit at the table long enough to hear about their days, which had variety. They did different things at work and school. They had meetings in different locations. They had coffee with different people. They meant well when they asked me, “And how was your day?” but the question made me cringe, because I always gave the exact same report. After awhile, I was able to drive myself to appointments, meet friends for lunch, and tutor high school students in French. But for a long time—years—my days were very, very quiet.

blog_JC_groundhog_lyme_quote

That’s not to say my brain was quiet. Though I didn’t give it much fodder since I couldn’t read, watch TV, or focus on audiobooks or music, the spirochetes in my head latched onto a time my brain could do all those things. Each day I’d wake up with a song in my head. There was no rhyme or reason to which song my brain picked; when I woke up it was just there, playing over and over and over as a perpetual soundtrack for the day.

Everyone knows how annoying it is to have a song stuck in your head. But imagine what it’s like when you’re bedridden and can’t go out into the world and do something to make you forget the song. Imagine what it’s like when your head already feels like its filled with molasses, when you are exhausted but can’t sleep, when you have nothing to do but lie there and “listen”.

Sometimes, it wasn’t just one song. As the day went on my brain would add to its repertoire, so that I’d have three or four tunes playing at once. This cacophonous mashup made me want to shake my head and scream.

It wasn’t just songs that were stuck in my head, either. Ideas played on repeat, too. Many Lymies describe having obsessive thoughts. For me, it was like I had a voice in my head narrating lines from my book or reactions to conversations I was a part of. It would read those lines again and again. The needle in my head was stuck. My world was not quiet; it was maddeningly repetitive.

Now that I’m in remission, I can tell when I’m having a flare-up, because I start thinking of everything twice. It’s not a conscious choice. It’s just the place my brain goes when its overtired. That’s a sign for me to rest, to have a neurofeedback session, to get some cranial sacral therapy. No matter how well I’m doing, I still always have a song in my head. Always. Right now it’s “Payphone” by Maroon 5. I’m not at a payphone—haven’t used one in years, in fact—but that’s where my brain is. Luckily, my daily songs play in the background now, because so much living is happening in the foreground. The songs and the occasional word iteration are bearable, because in general, I am taking daily steps forward. I am even back to eating (gluten-free) crêpes.

I lived the movie version of Groundhog Day for a long time. I promise you, with proper treatment the long winter does eventually end. Here’s hoping that Punxsutawney Phil will not see his shadow this week, and you will have an early spring.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

Dreaming of Better Days

by Susan Pogorzelski
#MyLymeLife

Do you dream of the day when rest is a choice, not a need? And when your friends and family truly understand the toll that Lyme disease takes on your body and your mind?

 

It’s eleven in the morning as I write this, a full ten minutes since I’ve woken up from my first nap. My life is routine these days, thanks to Lyme disease. Wake at seven, let the dogs out, force myself to eat breakfast so I can swallow a handful of antibiotics, then back to bed because the fatigue lies heavy, like a blanket on both my mind and body. Only then, when I awake a few hours later, am I finally able to function.

Then there’s lunch, supplements, household chores or working on the new novel or, if I’m having a really good day, a much-needed trip to the grocery store. These activities are always followed by an afternoon nap. If I’m feeling well, it’ll last two hours at most. If I’ve pushed myself beyond my known limitations, I’ll sleep well past dinnertime, waking up only when my dogs nuzzle me with their reminder to feed them, waking up only because they need me.

My friends used to joke about my napping, and because I had a pretty good sense of humor back then, I laughed along with them. I wasn’t blind to how ridiculous it seemed. I was young, seemingly healthy, with passion and ambition guiding me forward in life. So why was I sleeping my life away?

Every day after school, I’d fall asleep on the couch until my parents woke me up for dinner and homework. I remember becoming irrationally angry with them, wondering why they couldn’t let me sleep until I was ready to wake up. I didn’t understand it then, but I recognize it now: my body was refueling itself, and waking up before my energy was fully restored meant that I wouldn’t have enough to get through the night and into tomorrow.

When I was in college, with a diagnosis of Chronic Fatigue Syndrome, I wisely scheduled my classes as far apart as possible so I’d have enough time to rest in between. I didn’t know I had Lyme then, and I didn’t understand the implications Chronic Fatigue Syndrome could have on a life. I only knew that sleep restored me while life seemed to drain me.

“Were you taking a nap again?” my friends would ask, their voices filled with amusement.

I’d shrug my shoulders and laugh along with them. “You need coffee, I need sleep,” would be my reply.

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While everyone else spent their evenings readying themselves for a night on the town, I made sure I had enough time to rest before getting dressed. When I entered the working world, early bedtimes became a staple, and I turned down more than one fun day out on the weekend because I knew I needed to conserve my energy for the week to come.

When I was finally diagnosed with Lyme disease, the reason for this inherent need for sleep finally became clear to my family and friends, though there are still days when they struggle to understand why I can’t accept their invitation for a spontaneous night out. Even now, they’ll send me cute memes and funny cartoons about napping, and I’ll laugh along with them because it is cute and it is funny, and I’m grateful to have my sense of humor back. But sometimes I wonder if they will ever really understand that this is a need, not a choice. I’d never choose sleep over friends.

I’d never choose this life with Lyme.

I wish more than anything I had the energy to be a part of the world like I want to be. I’d spend my time with friends and family and be the mom to my dogs that I want to be. I’d visit museums and attend concerts and travel to places near and far. I’d provide for myself, I’d be independent again.

I’ve been lucky in my life that I’ve been able to do so much despite this illness, but that’s what makes it that much more difficult: knowing what I was capable of before, knowing how limited I am now, knowing how much more of the world I still want to experience.

So I’ll finish writing this essay and make myself some lunch. Then I’ll play with the dogs or finish some chores until I notice my energy beginning to drain. I’ll wander to the couch and lie down and close my eyes.

And when I sleep, I’ll dream of the day when I can do so much more.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Winter Ticks Take a Toll: Rise of the “Ghost Moose”

by Hannah Staab

Over the past few decades, warmer winters have been associated with major declines in the moose population. These massive and majestic animals are dying across the U.S.—from Maine, New Hampshire and Vermont to Michigan and Minnesota—as well as throughout Canada. Twenty years ago, for example, two separate moose populations roamed Minnesota, but since the 1990’s one of the moose populations has essentially vanished, plummeting from 4,000 to fewer than 100. The other moose population in Minnesota has declined from 8,000 to fewer than 3,000.

What are the reasons for this decline? Among other factors, warmer winters have caused spikes in the winter tick population. Many of the moose in the areas experiencing population decline are seen covered in Dermacentor ticks— sometimes as many as 100,000 ticks. The insidious pests attach themselves to the moose and feast on their blood, leading to anemia. The tick-infested animals are called “ghost moose” because in an attempt to dislodge the ticks they scratch, bite, and rub at their fur, exposing a pale undercoat and bare skin. If the moose loses too much of its fur, it can lead to hypothermia, reduced fat stores, and a compromised immune system.

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Moose are not the only large mammals that ticks attach themselves to, so it is important to consider why tick infestations have such severe consequences on moose compared to other animals. For example, deer experience tick attachment to their fur, and yet they do not experience the same deadly symptoms as moose. It has been suggested that deer cope with ticks more efficiently because deer have lived among ticks for a longer period of time, and therefore have adapted grooming strategies that effectively remove ticks. On the other hand, moose habitats have only been exposed to ticks recently, leaving moose unprepared to handle ticks and their associated damage.

Moose habitats are being exposed to an increasing number of ticks due to the effects of climate change. Climate change is allowing more ticks to survive the warmer winters, and expand their range into more northern territories. Ticks attach to moose in the fall, remain dormant until January or February, feed on the moose until March or April, and then drop off. With warmer and shorter winters, more ticks are able to remain attached to the moose throughout the winter, increasing blood and hair loss. Moose are also most likely to be found dead in March or April, after the most tickrelated damage has been done.

Concomitantly, Canada, a country that was never previously vulnerable to ticks and their diseases, is seeing a rising number of Lyme disease cases in humans and animals. Regions like Canada that are facing their first exposure to ticks are both less aware of, and less equipped to handle the health hazards that ticks bring to a habitat, and therefore are more heavily affected.

In addition, moose are often co-infected by brainworm, a worm parasite that is associated with severe neurological illness. The cumulative stress imposed by brainworm and tick infestation, especially for calves, may be overwhelming.

It is important that we remain aware of the tick impact on moose. Hopefully, with more research and information, climate change mitigation, and conservation efforts, we will preserve and perhaps restore populations of this iconic symbol of the American wilderness.

For more on Lyme disease and climate change, click here

Being Lyme Brave

by Susan Pogorzelski
#MyLymeLife

When you’re finally diagnosed with Lyme disease there’s a feeling of hope. That hope can turn to pain and desperation as new treatments induce Herxheimer reactions.

 

“Does she have Lyme disease?” I remember my dad asking as he, my mom and I sat in the tiny exam room of a small brick house three hours from home.

My face was ashen. All I wanted at the moment was to layer my legs with wet paper towels to keep them from burning; all I needed was a few minutes of sleep, even if it meant curling up on the crinkling paper of the exam table. My ears were buzzing and my heart was racing, but I gathered what little energy I had to turn to my new doctor, silently begging for some confirmation of our suspicions.

“Oh, yes,” he replied. “And at least one of the co-infections.” He reached for a paper outlining my new treatment plan while my parents and I exchanged relieved smiles. Tears welled in my mom’s eyes; I could see the weight visibly lift from my dad’s shoulders. At last, we had answers. At last, I could start on the road to recovery.

“It’s not going to be an easy journey,” my doctor warned gently. “You’re going to feel worse before you get better.”

I nodded and listened as he explained what he meant, but I didn’t care. All I could hear were those words: “You’re going to get better, you’re going to get better.”

* * *

I should have listened to my doctor. Or at least, tried to understand what he was telling me. But I was so eager to start medication, so eager to get betterto get my life backI didn’t care to consider what he meant by “worse.”

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I’d learned all about the Jarisch-Herxheimer reaction—where the Lyme bacteria release toxins during die-off that cause an inflammatory response, worsening symptoms—during my initial research of Lyme disease. But I didn’t fully realize what that meant.

The herx reactions started almost immediately after I began my cocktail of antibiotics. Where before the fatigue made it impossible to exert energy for long, now I was sleeping 18 hours or more a day, too tired to even lift my head from the pillow. Where the joint pain and muscle aches in my legs were once barely tolerable, now I woke up crying in the middle of the night, clinging to the walls as I made my way to the Epsom salt bath because I could barely walk. Where the physical sensations were unbearable, the neurological and psychological symptoms became tortuous.

My memory seemed to float away like dandelion seeds on the wind. I couldn’t remember the words for postage stamps (“that thing you put on envelopes”) or doorknobs (“you know, that thing you use to open a door”). When I saw my best friend in the grocery store parking lot, I thought she looked vaguely familiar, but I couldn’t remember her name, never mind what she meant to me. When I read, large passages of text blurred into blocks of letters that didn’t make sense, like a foreign language I’d never learned; I remembered what a stop sign meant only after I was through the (thankfully deserted) intersection.

It only worsened.

Depression turned to desperation. Anxiety became paranoia.

I was afraid to fall asleep, the nightmares becoming so vivid. I couldn’t tell the difference between what was real and what was just a dream, and I spent half the morning trying to calm my racing heart and remind myself that I was real and the rest was only a figment of my imagination. Anxiety poured into my waking life. On the rare day I was able to make it into work, I stood huddled in a corner of the elevator, frozen by inexplicable, irrational fear when a kindly-looking man stepped in after me. At night, every creak and groan of the house sent me into a panic. I had my dog, who’s always been quick to alert me whenever someone so much as passes on the other side of the street, but there wasn’t anything he could do to dispel the fear that paralyzed me.

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The knowledge that another unavoidable herx cycle was just over the horizon kept me suspended in anxiety. As the days and weeks passed, I kept reminding myself that I was killing the germs, that I was, in fact, getting better. It was cold comfort, but I was grasping for comfort wherever I could.

For six months, I fought through the deluge of symptoms each herx brought on. I tried to calm my mind through meditation and distractions. I took Epsom salt baths twice a day, and I altered my diet according to the best detox methods. Eventually, the pain began to ease and the fatigue let up. Slowly, words returnedthere when I called for them—and though the nightmares lingered when I woke in the morning, I knew they were just fading dreams.

* * *

It took six months for those heavy herx reactions to abate. Even now, nearly five years and one relapse later, it’s hard to think about how I ever got through those days. When I relapsed, that same fear plagued me once again. I wondered if it would be that bad again, wondered if I could survive it a second time.

It was. And I did.

My herxes now seem mild in comparison: a few days recovering in bed, some muscle aches that are soothed with baths, words that still don’t come easily but aren’t lost completely. I recognize it now as the price to pay for eradicating the germs from the body—germs that desperately try to cling to their host with everything they’ve got, the herxes serving as one last moment of triumph, begging us to give up and give in.

We’re stronger than that. We’re stronger than the Lyme.

Looking back at what I went through those first six months, I’m reminded how brave we are for enduring such affliction, with only the scant knowledge that we’re getting better despite the pain to keep us going.

“It’s not going to be an easy journey,” I can still hear my doctor saying.

No. But we’ll be braver for it.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.

Podcast: Lyme Disease and Tick-Borne Co-Infections

The most common tick-borne infection is Lyme disease. However, infected ticks also carry and spread numerous co-infections.

 

The newest Global Lyme Alliance podcast, with GLA’s Dr. Harriet Kotsoris and Dr. Mayla Hsu, discusses Lyme disease and the co-infections that are often transmitted along with the initial tick bite. Below is an excerpt. CLICK HERE to listen to the entire podcast.


Host:  In this podcast we’re going to expand our discussion to include co-infecting tick-borne diseases that are often transmitted along with Lyme. I’m in our studio with Dr. Harriet Kotsoris and Dr. Mayla Hsu who are science and research officers at the Global Lyme Alliance. I’ll start off by asking, what is a tick-borne infection?

Dr. Harriet Kotsoris:   A tick-borne infection is an infectious disease spread by the bite of an infected tick. The most common is Lyme disease but many others are present in the same tick bite. Depending on the location and the season, up to half of all ticks may have had more than one kind of microbe or disease producing organism that can make humans very sick. The list of microbes is expanding up to 11 or 12 at last count, but we’ll focus today on the major ones. These are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease producing organisms.

There is an increasing number of ticks that are multiply infected as we just said. In a recent west European study of Ixodes ricinus ticks, very similar to the American black legged deer tick, up to 45% of those ticks were co-infected with up to five pathogens or disease producing organisms. We have a similar experience here in the United States.

Host:  How many people get tick-borne infections?

Dr. Kotsoris: The Centers for Disease Control calculates about 330,000 Lyme disease cases per year but it may be even over 400,000. It’s not really understood how many of these are also infected with other microbes, which in some cases cause different illnesses that require different diagnostic tests and different treatments.

Host: What can you tell us about the ticks that spread these diseases?

Dr. Mayla Hsu: Well in the United States there are different families of ticks that may be co-infected with various pathogens. As Harriet just mentioned, the Ixodes ticks or the black-legged ticks are now in half of all United States counties. There’s another tick that is further south, known as the Lone Star and there is also an American dog tick called Dermacentor that also harbors infectious microbes.

Host:  How about internationally?

Dr. Hsu: Well it seems that ticks are generally found in all temperate climate zones, so there are the Ixodes species in North America, these are also found in Europe and Asia, there are other ticks found in Africa, parts of temperate Africa, that infect humans as well as animals there, and they’re responsible for causing relapsing fevers. There are soft ticks, Ornithodoros, the Ornithodoros family of ticks, that are found in South America and Western Africa, and these too are associated with causing diseases in humans. The jury is still out in Australia. There are ticks there but it’s not known whether or not they’re correlating with human disease.

Host: What do we know about changing tick geography?

Dr. Kotsoris: It seems that in the United States, the geographic range where ticks are found is expanding and we know that with climate change the range is also changing, so for instance, it is expanding northwards into Canada where Lyme disease was never a concern, it now is starting to emerge. We can expect and see more tick-borne diseases elsewhere, also spreading in through the United States. These are now classified as emerging infections and so public health authorities are very concerned about this and tracking the emergence of more tick-borne illnesses.

Host:  What are some of the emerging tick-borne diseases and again we’re going to focus only on the major ones about which the most is known.

Dr. Hsu: One of the more interesting tick-borne illnesses that has been emerging in recent years is called babesiosis. This is an illness caused by a parasite that’s very similar to malaria. It’s called Babesia, Babesia microti. This is characterized by recurrent fevers, so people get fevers that spike and then go away and then come back over and over again, chills, muscle and joint aches and pains and it can be actually fatal in rare cases. The diagnostic test for this is not a blood test looking for antibodies, rather the blood is examined under a microscope and here you can see the organism actually growing in red blood cells, so just like malaria it grows in red blood cells and you can see it in a blood smear and the treatment required for this is also very similar to anti-malaria therapies, so that’s drugs that are similar to quinine but also anti-protozoan drugs like Atovaquone, also known as Mepron, and antibiotics, azithromycin and clindamycin.

About 1,800 people were reported to have gotten babesiosis in the year 2013, and the numbers are rising so where we see Lyme disease we are also starting to see more and more Babesia, and it’s important to point out that the treatment and diagnostic for Babesia is different from that of Lyme disease, so if Lyme disease is suspected and is looked for, and treated, a person who also has Babesia will not get adequately diagnosed or treated and can continue to be ill.

Host: There are several bacterial diseases that are spread by ticks that have been getting more attention in recent years, Anaplasma and Ehrlichia.

Dr. Kotsoris: Yes, historically these started out as veterinary diseases. They were identified in the late 80s and early 1990s, after having been studied as long-standing veterinary problems. These organisms belong to a group known as the Rickettsiae, Anaplasma, Ehrlichia, and Rickettsia itself. These are what we call obligate intracellular parasites. They’re bacteria that only live inside the cells of another organism, and that’s how they affect humans. Human granulocytic anaplasmosis is what we call a gram-negative bacterium of the rickettsia family. It invades white blood cells after a tick bite by an infected tick and it travels and lodges within granulocytes or the neutophils, the white blood cells of the human being.

About one to two weeks after the bite, the patient will develop spiking fevers, headache, drop in white blood count, drop in platelet count…the platelets are responsible for clotting blood, and a rise of liver function tests indicative of an inflammation of the liver. These organisms are very smart and release a chemical substance known as a chemokine, or a cytokine, interleukin-8 that actually is an attracting chemical for white blood cells to help propagate the infection throughout the body. The diagnosis has to be made by blood smear because the comparison of acute and convalescent sera that is the development of convalescent antibodies may be too late in the game, that the patient will have been compromised medically and treatment will have been delayed. The diagnosis can also be made by something known as polymerase chain reaction and the treatment is doxycycline, 100 milligrams twice a day, similar to what’s used in acute Lyme disease and the treatment is until three days after the disappearance of the fever.

Related is something known as human monocytic ehrlichiosis. Ehrlichia and Anaplasma were used interchangeably in the past, but now they’ve been divided into separate categories because of the bacterial composition. Human granulocytic anaplasmosis is carried by the black legged deer tick, Ixodes scapularis, Ixodes pacificus on the west coast, but this vector for human monocytic ehrlichiosis is the Lone star tick, or Amblyomma americanum and Dermacentor variabilis, the American dog tick. The classic infection in the Midwest in particular is by Ehrlichia chaffeensis and Ehrlichia ewingii, more so chaffeensis. Usually peaking in July, usually affecting males older than 50 years old, and again, within a few weeks of the tick bite, the patient develops headaches, muscle aches, otherwise known as myalgias, fatigue, a drop in white blood count, a drop in platelet count, fever, gastrointestinal systems, which may lead to also respiratory insufficiency and kidney failure.

The three states most affected by Ehrlichia chaffeensis and ewingii are Oklahoma, Missouri, and Arkansas. They account for 30% of the reported cases of these bacterial species. The numbers have been reported in the low thousands over the last few years. In 2009, a third cause of human ehrlichiosis was identified in the upper Midwest. This has been known as Ehrlichia muris-like agent. Interestingly, it also exists in Eastern Europe and Asia. The detection of this pathogen or disease producing organism is by looking for the DNA, that is the genetic material, of this organism in the blood of patients. About 2.5% of Ixodes scapularis ticks are infected by this E. muris type agent. Note that this one is spread by Ixodes scapularis, the black legged deer tick, not the Lone Star tick as in human monocytic ehrlichiosis.

One of the better known bacterial infections that people read about, hear about, especially with people traveling into the Rocky Mountain area, into the Midwest, into the Southeast, is something known as Rocky Mountain Spotted Fever. This is Rickettsia rickettsia…it is spread by the American dog tick, by the Rocky Mountain wood tick, and by the brown dog tick. There are reported 14 cases per million population, peaking in April through September. Despite its name, as I said before, it’s not confined to the Rocky Mountains, it’s also found in the southeastern United States. These bacteria, after the tick bite, travel within the blood stream and lodge within endothelial cells, that’s the lining cells of small blood vessels, and elicit inflammatory changes and make the blood vessels leaky, affecting all organs infected, especially the skin and the adrenal glands. The platelets responsible for clotting are consumed and you may have kidney malfunctioning.

Patient will present with severe headaches, high fevers, a few days after the bite and a few days after that, a spotted rash on the wrists, palms, and ankles. Patient may also have abdominal pain, nausea, vomiting, and other generalized symptoms. The mortality rate can be as high as 4% and this is caused by a delay in diagnosis and treatment. The treatment is doxycycline and patients do best, and have a much lower morbidity and mortality if they’re treated within five days of being infected.

Below is the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme and co-infections, specifically Bartonella and the Powassan virus.


Follow Global Lyme Alliance on SoundCloud to hear future podcasts.

What It’s Like to Have an Illness No One Believes In

by Kerry J. Heckman
#MyLymeLife

4 Lyme Bloggers Speak Out About Living with Lyme Disease

 

A doctor recently told me, “I don’t believe you have Lyme.”

It’s not the first time I’ve heard it and it probably won’t be the last. I was diagnosed with Lyme after ten years of being undiagnosed and misdiagnosed. I didn’t believe it either at first. It took two positive test results, a specialist’s reassurance, and hours of internet research to finally become convinced. Each time a new doctor questions me, I doubt myself all over again.

What’s it like to have an illness no one believes in? The experience is different for everyone and we are all at different stages in our illnesses. It’s still early in my experience, so I asked four other Lyme bloggers to weigh in.

Christina Kovacs of the blog Lady of Lyme says, “I believe that the ‘experts’ who spread the lie of chronic Lyme not being ‘real’ do know better, but choose to turn a blind eye.” Yet even after five years of living with this diagnosis, she still believes there is hope.

christina kovacs_lyme blogger“In early 2017 it is much more difficult to deny the existence of Lyme. Borrelia spirochetes have been found in brain tissue during post-mortem autopsies, and even fetal tissue of miscarried babies. The voices are growing, and the science is growing, which gives validity to the pain of every patient. On top of that, we have amazing senators and representatives, who along with patient advocates have passed laws to further advance Lyme disease treatment guidelines.

“But overall, when I am confronted with a non-believer (be it a Doctor, a nurse, or a layman), I find it only fuels me. That doubt just lights a fire under me to fight harder to enact change. I feel very lucky that celebrities have lent their voices to Lyme disease awareness, because it shines a broad light of legitimacy on the cause.”

Kami Lingren writes the Living Grace blog and she believes even when we are faced with adversity from the medical system it is important to be your own best advocate.

Kami Lingren_lyme blogger“Living with a disease that is misunderstood, even disbelieved, can be heavy. It takes strength to repeatedly stand up for yourself in conversations with doctors who belittle, laugh (yes, literally), and minimize your symptoms and diagnoses—all for the simple fact that they cannot see or understand what’s happening in your body. I now struggle to view hospitals or doctor’s offices as safe zones, because they usually produce more pain than help. It won’t matter how excruciating my pain is, how many symptoms are overwhelming my body, or how very real my struggle to breathe is. The response is consistently ‘you’re fine.’ One thing’s for certain, though: you learn to rise up and take care of your own health and to find doctors who will listen to you and understand your illness. Because we’ve also learned this: that life and time are too precious to wait complacently.”

Lyme warrior and blogger Victoria Faling touches on one of the biggest issues for Lyme patients— the fear of family, friends, and doctors thinking we are making it all up.

victoria faling_lyme blogger“The hardest part about having an illness that no one believes in is that people think you are exaggerating or acting a certain way to get attention. People you love and trust start to question you (whether it’s outright or in their own minds), which makes you trust and love them just a little less. It makes you not want to share with anyone and close yourself off, so you can just deal with your health in the safety of your locked room. The hardest part is trying to act as normal and healthy as possible around others as to not make them feel uncomfortable, which only makes you feel worse because the acting takes so much energy. Having an illness that no one believes in makes you want to scream from the tallest mountain, ‘Believe me! I’m sick! The pain is real!’ It makes you wish everyone around you had to deal with your symptoms for just one hour so that they can understand. But you can’t do those things and that’s hard to bottle up and contain. The hardest part is how incredibly angry and sad you feel; lonelier than you ever thought possible.”

With all the emotional pain, Victoria believes there is a silver lining, “But it also makes you realize who truly loves you no matter what, no matter if you actually are crazy, because they stick around through it all, listen to every complaint you have, and hug you whenever you need it, even if you don’t want it.”

Many Lyme patients would agree with April Moor of the blog Fitness Nutrition and Moor

april moor_lyme blogger“There are many obstacles and struggles when you are a person suffering from Lyme disease. One of the largest is that you have an illness that not many people actually believe in.”

She compares the difference between living with Lyme and living with other diseases that are more well-known. “There would be walks completed in your honor, scientists would spend endless hours researching a treatment, insurance would cover your doctor visits and medications, and people would ask how you are feeling for the entirety of your illness. With Lyme, there seems to be a limitation to how much people care. Because we don’t often look sick, people don’t ask how you are feeling, they don’t understand why you are always tired, and how about those harsh diets that we are on, they definitely don’t support that. Lyme disease is a lonely and helpless journey that only fellow ‘Lymies’ understand.”

After a year of following and communicating with Lyme patients like these bloggers, I can’t believe anyone would deny their pain, suffering, and resilience. Because of the willingness of these four women to share their stories, I’m finally learning to trust myself and my team. The doubts are getting softer and my voice is getting louder.

Keep speaking up for yourself, keep speaking out. Lyme is real and you deserve to be heard.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

 

Living with Lyme Brain

by Jennifer Crystal

Short-term memory loss, confusion, brain fog, and word repetition are just a few symptoms of Lyme brain experienced by many Lyme patients. How has Lyme brain affected you?

 

I was recently talking on the phone with a friend who is expecting a baby. “I’m so sorry I didn’t call you back earlier,” she said. “I can’t remember anything these days. It must be ‘pregnancy brain’!”

I knew what she meant. I’ve experienced “Lyme brain,” and the symptoms are similar. Throughout my 20-year battle with Lyme and other tick-borne illnesses—eight of which were undiagnosed and untreated—I have wrestled with shortterm memory loss, confusion, brain fog, word repetition, difficulty retrieving vocabulary, and a tendency to mix up words. Other neurological symptoms have included insomnia, hallucinogenic nightmares, migraines, burning extremities and mini seizures.

It’s hard to explain the neurological component of Lyme disease to people who haven’t experienced it. Most people know Lyme causes joint pain, and it does. But when it goes undiagnosed for too long, the bacteria can replicate and cross the blood-brain barrier, invading the central nervous system. A scan of my brain showed that the tickborne parasite babesia was preventing me from getting oxygen to the left side of my brain. The scan also showed lesions caused by Lyme.

But that scan was done years after my initial tick bite, years after I’d first noticed that my hands trembled when I tried to apply eyeliner, years after doctors had written off my migraines as “altitude sickness” or “stress.”

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Unfortunately, my story is all too common. The neurological symptoms of Lyme disease are some of the most confused with other illnesses. Besides the brush-off diagnoses I received, patients are often misdiagnosed with multiple sclerosis, Parkinson’s, and/or mental illness. Without proper diagnosis, neurological Lyme disease can lead to paralysis, schizophrenia and even death.

I was one of the lucky ones. My sleep disturbances were unbearable at times, but my day time neurological troubles never got worse than brain fog and word loss. So what did that actually feel like? Imagine molasses seeping through your brain, pouring into all the crevices until your brain feels so full that you wonder if it will explode right out of your skull. Imagine that thick substance sticking to the synapses of your brain, dulling your thoughts, slowing your ability to put those thoughts into words.

It became impossible to read or watch TV. Just skimming the opening paragraph of an article left me confused and frustrated. Sometimes I’d be telling a story to my family—something as simple as, “I ran into an old friend at the pharmacy today”—and I’d stop mid-sentence and ask, “What was I talking about?” I had no memory of what I’d just said or what point I was trying to make. I also sometimes mixed up the syntax such as, “I ran into a friend old at the pharmacy today.”

Other times, I couldn’t come up with basic words. While telling my family that story I might say, “I ran into an old friend at the…at the…at the blank today.” I knew that “today” came after the word I was trying to say, but I couldn’t fill in the blank. Usually whomever I was speaking with could fill it in for me, but I was nervous about that happening in public. I’d be at the pharmacy and suddenly not be able to come up with my zip code when prompted by the pharmacist. Sometimes the word or number would come eventually, as if my brain had done a Google search. Other times I would just try to laugh it off, saying something like, “Wow, I must be really tired today!” I wished I had the more obvious excuse of “pregnancy brain.”

As a writer, I have always been exacting in my vocabulary. Losing the ability to come up with precisely the right word was humiliating. Words are my currency, and I was broke.

Luckily, the antibiotics started beating out the spirochetes in my brain, and slowly things improved. Soon I could read an entire magazine, as long as I stopped in between articles to sit quietly and let my brain rest. Eventually I could type multi-paragraph emails. The word repetition fortunately decreased . I worked my way up to attending graduate school, writing papers and essays —thinking again at a high level.

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These days, I still wrestle with some neurological symptoms especially when I’m tired. Recently I was writing a chapter of my next book and called my mom to say, “I’m thinking of a word that sounds like ‘synonymously’ and means two things happening at the same time.”

“Simultaneously,” she quickly said. I smiled, filled in the blank, and continued writing.

While working on my book, I’ve been doing some prompts with a writing group to help generate material. Recently we wrote about things we’ve lost and found. “I’m writing about losing my mind,” I told my mother.

“How do you know you’ve found it?” she joked.

I know because I can write about my experiences with some distance, using exactly the words I want. I know because I can teach. I know because I can read student essays and newspaper articles. I know because I can read entire books—albeit slowly—and I’ve even written one, too. And in the rare event that  I can’t think of a word, I know I can always call my mother.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

Tainted Transfusions: Why Screening Blood is More Important Than Ever

by Mayla Hsu, Ph.D., GLA Science Officer

The importance of screening for babesia in our blood supply is the focus of a new study published in the New England Journal of Medicine.

 

The last thing anyone wants from a blood transfusion is to get sick from an infectious microbe. Currently, the American Red Cross and other blood collection agencies screen for blood-borne pathogens like HIV and hepatitis viruses. But there is a malaria-like parasite called Babesia microti that can make us sick, and is not routinely screened for.

Spread by the same biting ticks that transmit Lyme disease, babesiosis can be self-limiting and asymptomatic in healthy adults. However, in the immunosuppressed–the elderly or those co-infected with Lyme disease–the illness, which is characterized by recurrent fevers and pain, can become severely debilitating and is potentially fatal. When blood from such infected patients is examined with a microscope, the parasite can be seen replicating inside red blood cells.

A new study published in the New England Journal of Medicine has shown that screening for babesia-infected blood is useful in reducing transfusion-acquired babesiosis. This research, conducted by the American Red Cross, analyzed blood donation samples obtained in Connecticut, Massachusetts, Minnesota, and Wisconsin, all states with high incidence of Lyme disease and babesiosis.

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They found that after analyzing 89,153 blood samples, 335, or 0.38%, were positive for babesiosis, and these donations were removed from the blood supply. During the study period, which was from June 2012 to September 2014, there were 29 recorded cases of transfusion-acquired babesiosis. These came from blood that was not screened, and follow-up of the specific donor samples showed later that the source blood tested positive for Babesia.

When focused on Connecticut and Massachusetts, the researchers found that for screened blood, there were no transfusion-transmitted babesiosis cases in 75,331 blood donations. In contrast, with unscreened blood, there were 14 cases of babesiosis in 253,031 donations. This showed that blood donation screening was effective in preventing babesiosis transmission via blood transfusion.

Every year, about 1800 cases of babesiosis are reported to public health authorities, with 95% of cases in only 7 states. However, this is likely to be an undercount, due to low medical awareness and misdiagnosis of the disease. Presently, there is no Babesia blood donation screening test that has been approved by the Food and Drug Administration. This study and others like it will hopefully lead to such a test, by showing the vital importance of protecting our blood supply from a dangerous pathogen.

Looking Back, Looking Ahead, Giving Thanks

by Jennifer Crystal

The end of the year is a time to reflect. For those of us with a chronic illness, like Lyme disease, it can take a little more effort to look back, look ahead, and give thanks.

 

The end of the year is a time for reflection. As we prepare for what’s ahead, we look back at what’s happened over the last 12 months. By any measure, 2016 has been a tough year. We’ve suffered traumatic national and global events. Many people have suffered physically, mentally and emotionally from Lyme and other tick-borne diseases. Some have gotten better, but some are still struggling, wondering when their sufferings will end.

The end of 2016 puts a hard stamp on all that has been and opens us up to us a blank slate for 2017.

We don’t have control over what’s going to happen. We can’t turn our calendars and write “Tuesday, January 2nd: Get better.” We can, however, control our perspective on what has happened and what might happen.

Think about driving a car. In order to do so safely, we have to glance in the rearview mirror every so often. We can’t merge, pass, or exit without knowing what’s going on behind us. What we see in the mirror helps us determine the best course of action when moving forward.

There are rules of the road for life, too. We have to learn from the tough roads we’ve already traveled. For Lyme patients, it’s helpful to think about questions such as: What did I do to take good care of myself in the past year? What created an obstacle to my getting better? What changes can I make—to medication, schedule, sleep hygiene, support system, attitude—to help me on my journey to health? Which lessons do I want to take with me into 2017 and which do I want to leave behind?

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If we are to keep moving forward, we have to leave those bad times and bad choices behind. We reflect on them, but then we drive away, watching them grow smaller in the rearview. The terrible experiences of 2016 may loom large now, but someday, they’ll just be a blip on your map—even if you’re currently bedridden, racked with pain, soaked with nightsweats, and crazed by the thoughts and songs and images flashing in your head. I know this because, as so many past years drew to a close, that was me. And now I’m driving far, far away from all that, hoping to never turn back.

I also know this because rearview mirrors aren’t the only point of reflection in a car. Don’t forget about side mirrors which sometimes catch obstacles in your blind spot. The message scrawled across those mirrors is clear: “Objects in mirror may be closer than they appear.” In other words, good health may be closer than you think. Better days in 2017 may only be hiding in your blind spot, ready to pull into view at any time.

And so, we must remain hopeful.

What was good about this year for you? There must be something. Did you finally meet the right doctor? Did a friend drive you to the pharmacy, or sit with you on a particularly hard day and make you laugh? Did flowers grow outside your bedroom window?

As I reflect on the year, I find it helpful to create a simple list of good things that happened, and then make a list of small goals for the New Year:

  • If I am not comfortable with my current doctor, I will search for a new one (click here for help finding a Lymeliterate physician;
  • I will work to get off of just one of my medications or supplements, if I am physically ready to do so;
  • I will find a new way to pamper myself (how about a warm bath each night, or a subscription to a light magazine?);
  • Each night I will write down three good things about the day;
  • I will give thanks to people who support me (give a hug, send a note of appreciation, or frame their favorite quote)

Writing these lists makes me feel grateful and hopeful. It makes me feel ready to take one final glance in the rearview mirror, and drive forward into 2017. See you in the New Year!


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected]

 

Locking Up the Obstacle of Guilt

by Jennifer Crystal

Patients with a chronic illness, like Lyme disease, can carry more guilt than symptoms.

 

The holiday season is, as the Andy Williams song goes, “the hap-happiest season of all.” While many people feel this joy, others struggle to be of good cheer. Depression and anxiety can run high during the holidays. As we reflect on the year just passed, many people wrestle with feelings of guilt.

That’s one I know well.

Patients with Lyme or any long-term illness can carry more guilt than symptoms. We feel guilty for being sick, for not getting well fast enough, for being a burden on caregivers, for not being able to work, for being dependent on others. We have guilt about our guilt, a vicious cycle that can make us want to crawl in a cave.

I experienced all of these feelings when I first got sick. I went from leading a completely independent life—teaching, ski instructing, taking care of my own needs—to being bedridden and dependent. I felt intense pressure from others and from myself to get out of bed, get well, and get back to my life. How badly I wanted to do all of those things! But with increasing symptoms and only half a diagnosis—of Epstein-Barr virus, the treatment for which was “just rest”—my ability simply didn’t match my desire.

Guilt gnawed at my stomach when people asked, “So are you thinking of getting a job?” or “When are you planning to get well?” Even a simple “What did you do today?” made me cringe because I didn’t have much to report besides “sleep” and “eat”. The implication was that my illness was something I could control, and the fact that I couldn’t will myself to get well, sent me into a tailspin. I started thinking that getting sick was all my fault. Maybe I had pushed myself too hard during those years of teaching and intense exercise. Maybe I hadn’t taken good enough care of myself. Maybe some of my symptoms were all in my head, as a few doctors suggested.

It turned out that none of that was true. My intractable illness was the fault of an insect tinier than a poppy seed, which had bitten me many years earlier and thus made it impossible for me to get over Epstein-Barr. After two bedridden years, I was finally accurately diagnosed with Lyme and other tick-borne diseases. Once I had a concrete explanation for seemingly idiopathic symptoms, many people who had pressured or not believed me laid off the guilt trips.

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Laying off myself was another story. Recovery from Lyme is a long, zigzagging process. It took a year of intravenous antibiotics and intense anti-malarial medication for me to start feeling better. Guilt stayed with me on that journey. I felt bad that I wasn’t steadily getting well, that I often didn’t have the energy to do dishes or laundry or help around the house. I felt terrible that I was still so reliant on others.

When I finally was well enough to move out on my own and work part-time, I dove in head-first, wanting to escape the life of illness and prove to myself and others that I still was a motivated and capable person.

Unfortunately, the illness wasn’t escapable. Because I’d taken too large a leap, I quickly relapsed, landing right back where I’d started: bedridden, under my parents’ care, too sick to function.

I couldn’t stand it.

I felt guilty for taking too large a leap, for getting sick again, for being a burden. This time the guilt didn’t just gnaw at my stomach. It consumed me.

“You’ve got to stop this,” my stepmother said one day as I cried hysterically. “This guilt is going to block you from getting better.”

She stopped me in my tracks.

I realized in that moment that while I didn’t have control over my illnesses, I could control how I reacted to them. My therapist had been telling me this for years, reiterating that being sick was not my fault, that I was making myself worse by adding anxiety and guilt to the situation. But I didn’t really hear the message until that day at the kitchen table with my stepmom.

A physical therapist had once suggested I picture a wooden chest or trunk, and imagine myself locking all my worries inside. I didn’t have to throw them away. I could store them and take them out if I needed them, but I held the key. I got to decide when or if they came out.

Remembering that imagine, I suddenly felt like I held the key to allowing myself to get well. My guilt was still there, of course. But I acknowledged it and then locked it away, because keeping it out would only prolong my recuperation.

After I locked up my guilt, a funny thing happened. I started to get well. Not right away, of course—if only antibiotics worked overnight! But I transitioned to a calm acceptance of my situation rather than a nervous frenzy over it, and my body responded well to the shift. My symptoms abated much faster than expected.

Now that I am in remission, I still sometimes feel guilt. When I do, I ask myself if it’s over something I can change, or if it’s something that’s out of my control. If it’s the latter, I store the guilt in my wooden chest. Maybe one of these days, I’ll even throw away the key.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennif[email protected]

What to Do When You Get Bad News About Your Health

by Kerry J. Heckman
#MyLymeLife

Getting bad news is hard for anyone. For people with a chronic illness, like Lyme disease, it can happen often. Here are 8 tips to help you manage the bad news.

 

I went through three biopsies of my spine trying to find a reason why my MRI was so drastically abnormal. All three biopsies were inconclusive. This process is not for the faint of heart. It consists of fasting for an entire day, getting an IV, laying on your stomach in a CT machine, while the doctor sticks a large needle in a precise location within my back. During my first two biopsies, they took a sample of my bone, which I could feel them chip away. The sedative and twilight anesthesia helped, but caused me to throw up about an hour after I finished the procedure.

Each time I prayed for an answer to my long-awaited question, and each time the lack of a diagnosis stung a little more.

For people with chronic illnesses the medical tests are non-stop. My one good vein has so much scar tissue it’s hard to get blood from it anymore. Sometimes those test results are positive and hopeful, but many times they aren’t. The bottom line is when you get news about your health that isn’t what you wanted to hear, it’s very hard to cope with; and for people with chronic illness, it happens over and over again.

Here is some advice on how to respond:

1. Cry

You better believe I’ve cried a lot after a phone call from a doctor or an email from a lab. It’s okay to be disappointed, sad, and scared when you get bad news. Let the river of tears flow. Life is not always kind.

2. Talk to someone

When the news is bad, it can be helpful to talk to someone. This person can be your partner, parent, best friend, or a professional. Pretending you aren’t hurting and putting on a brave face won’t serve you in the long run.

3. Don’t let the test results define you

Test results are numbers on a page or the label of a diagnosis, but often these things are changeable, not fixed. I know one day my inflammatory markers will go down and the Lyme disease will be in remission. When I get bad news, I know it’s a measure of my current state and it’s only temporary.

4. Get a second opinion

If I hadn’t gotten a second opinion, or a third, or a fourth, I never would have gotten a correct diagnosis of Lyme disease. It’s also important to remember there is a time to gather new information and a time to contemplate what you know; try to find a balance.

5. Write down an action plan

When another spot of inflammation showed up on my CT scan, I was devastated and overwhelmed by the number of follow up tests and conversations with doctors that needed to take place. I was worried if I didn’t get it all done instantly something would get missed. I paused a moment and took the time to make a list of everything that needed to get done. Then, I put each item in order of importance. It helped to take all the anxious noise in my brain and lay it out in a strategic plan.

6. One step at a time

After you have developed your action plan, take one step at a time. You might not get all the calls made in one day. There may be tests that you have to be schedule far in advance or may take weeks for the results to come back. As long as you are marching toward the goal, don’t push yourself too hard.

7. Ask for help

Let’s face it, brain fog doesn’t necessarily lend itself to creating and following through on a detailed health plan. Ask your doctor, partner, or friend to talk it through with you. Maybe they have insights that you didn’t consider.

8. Look for a reason

I don’t necessarily believe everything happens for a reason. But my personal philosophy is even if there isn’t a reason, it still happened, so you have to make one.

When I had my inconclusive biopsy, a good friend said: maybe now isn’t the right time to find an answer. She was right. If I’d received a negative biopsy I might have given up the fight for answers, but since I had no answer I sought out a new doctor who ultimately led me to my Lyme diagnosis.

Each test, whether good, bad, or inconclusive is another clue along the path to recovery.

My mom recently had an abnormal mammogram and had to go through a biopsy of her own. With our stomachs tied in knots, my entire family waited for the results. We breathed a collective sigh of relief when the biopsy came back negative. When you get bad news about your health it’s important to remember that sometimes there is good news. I’ve had my share of positive test results. They’re just overshadowed by the negatives ones. Illness is a journey of ups and downs, for every dark of night there is the light of day. Waiting for the sun to come up is hard, but it’s there hidden just behind the horizon, ready to rise.


Opinions expressed by contributors are their own.

kerry-j-heckman-profile-picture_thumbnailKerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Tick-borne Infections on the Rise in Gray Wolves

by Mayla Hsu, Ph.D., GLA Science Officer

As the majority of emerging infectious diseases stem from wildlife, the rise of tick-borne Infections in gray wolves is a good indicator of the future of Lyme and other tick-borne diseases.

 

Wild gray wolves evoke images of unfettered nature and animals loping freely through forests and meadows. But a new study of wolf populations in northwest Wisconsin shows that a high percentage of them are actually infected with tick-borne infections, which suggests that they are potentially suffering ill health.

Many of us know that rodents like squirrels and mice, as well as larger animals like white-tailed deer, are hosts for Ixodes scapularis, the tick that transmits Lyme disease. The bacteria that cause Lyme disease (Borrelia burgdorferi), anaplasmosis (Anaplasma) and ehrlichiosis (Ehrlichia), grow in these host animals and colonize the ticks who bite them to take blood meals. When infected ticks then bite humans, we too become infected by the bacteria, and get sick.

Scientists analyzed 373 blood samples drawn from wild gray wolves between 1985 and 2011. Using the Snap 4Dx test, which is used by veterinarians to test for tick-borne illnesses in dogs, they looked for antibodies that recognize these microbes. Their presence indicates past exposure to the pathogens. Overall, they found antibodies to B. burgdorferi in 65.6% of animals, Anaplasma antibodies in 47.7% and Ehrlichia antibodies in 5.7%. These findings show that tick-borne pathogens are common in gray wolves in Wisconsin, and as expected, the American dog tick Dermacentor, and I. scapularis tick vectors that transmit them were routinely found on the animals.

While the sex of the wolves was unrelated to the percentage infected, their age was important. A higher proportion of adult wolves had B. burgdorferi, Anaplasma, and Ehrlichia antibodies than pups. This is unsurprising, since greater age means increased probability of being bitten by ticks. Also, adult wolves move greater distances, with greater exposure to questing ticks, compared to pups, who generally stay near their den.blog_tick-borne-gray-wolves-2

The research also showed a 50% increase in the prevalence of B. burgdorferi between 1985 and 2011 among gray wolves.  The counties in which wolf exposure has increased the most are among the Wisconsin counties in which human Lyme disease has also expanded the most.  By contrast, the prevalence of heartworm, a parasitic disease spread by mosquito bites, did not change during this time frame, suggesting that conditions favorable to ticks, but not mosquitoes, may be driving disease spread.

Why should we care about tick-borne diseases in wild wolves? They are free-ranging animals whose exposure to ticks is greater than that of pets or humans. They go places that we don’t go, and humans do not remove ticks from them as they do from domestic dogs. Thus, they can be regarded as sentinels of infectious diseases in wilderness spaces. Nationally, the Lyme disease epidemic in humans is expanding, particularly in the Northeast, Wisconsin and Minnesota. Several studies suggest that climate change may favor the growth of ticks and mosquitoes. So, information about vectors and microbes in wild animals everywhere will help us to plan and implement measures for safeguarding public health. In the last 75 years, 71.8% of emerging infectious diseases came from wildlife.

But aside from illnesses that we as humans may acquire, the health of gray wolves is important for another reason. They are predators and preserve ecosystem health, by preventing the overpopulation of prey species. Whether gray wolves become severely sick from tick-borne illness isn’t well known, with a few documented cases of captive wolves losing weight after Borrelia infection. So far, it appears that the wild wolf population, rebounding from near-extinction, has not been harmed by tick-borne microbes. However, we have a responsibility to remain vigilant to health threats to all species and in all habitats, not just our own.

 

It’s Not All or Nothing

by Jennifer Crystal

Suffering from a chronic illness, like Lyme disease, can make you feel like you are missing out this holiday season because you can’t attend a party or visit with a friend.  But it doesn’t have to be all or nothing. 

 

There’s a new movie out called Manchester by the Sea that I’d really like to see. When I mentioned this idea to a friend, she said, “That might be a tough movie for you.” She didn’t mean the content. She meant that it was filmed in a way that you always feel like you’re watching from a character’s shoulder, creating an intense visual effect that she worried might rile up my neurological symptoms. Furthermore, she cautioned there are a lot of driving scenes that could cause motion sickness.

“But you still should try it,” she said. “Just sit in the back, so you have the best peripheral vision possible, and leave after ten minutes if it’s too much for you.”

In the past, I never would have accepted this advice. When I was really sick, I didn’t have the energy to sit through an entire film, so I thought, why go? Another friend helped me to reframe that thinking. When I told him about all the things I wouldn’t or couldn’t do, he asked, “Does it have to be all or nothing?”

“What’s the point of paying for ten minutes of a movie, only to have to get up and leave?” I countered. In those days especially, it took a lot of energy for me to get dressed, wrap my PICC line under a sleeve, and drive to a theater. My hourglass ran out so quickly that I didn’t want to waste energy unless I knew for sure it would be worth it.

My friend just wanted me to see that while I was waiting to get better, I was missing out on a lot of good things in life. I had this vision of getting totally well—of having my energy completely back—and then going back to the activities I’d once enjoyed at full-tilt. I didn’t want to ski on the bunny hill, just to say I did it; I wanted to get back to deep powder and moguls. I didn’t want to go to a party looking tired; I wanted to be the life of the party.

The thing about Lyme, though, is we never know if we’re going to get that life back. It all depends on how long we went undiagnosed, how long we’ve been sick, whether we have co-infections, whether infections have crossed the blood-brain barrier, and how we respond to treatment. Most frustrating of all is that the answer to every one of those questions is different for each patient. There is no set protocol or prognosis for tick-borne disease. We don’t know when or if or to what extent our symptoms will improve. So instead of waiting for the big moment of “all better!,” we need to celebrate the little victories, and adjust our lives accordingly.

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This means instead of waiting to be the life of the holiday party, we should consider attending for just half an hour. Instead of waiting to see an entire holiday concert, we should commit to only going to the first half. Instead of lamenting how tired we might feel during that party or how weird it might be to miss half a show, we can reframe our thinking to, “It’ll be great to say hello to friends who I haven’t seen in awhile” or, “It’ll be nice to hear even a little bit of music.” Like most things in life, it’s all a matter of perspective.

Of course, this glass-half-full mentality doesn’t always work. Sometimes an event or effort really is too much for us, causing setbacks that make us feel like the glass has dropped and shattered all over the floor. I remember going to a piano concert at the local library one afternoon during my convalescence. I had just woken up from a nap, and was feeling sluggish and out of sorts. My nerves were frayed, which I quickly realized when the concert began and I looked around to see if other attendants found it to be as loud and grating as I did. Everyone around me—most at least three times my age—seemed to be enjoying the concert just fine. My sensitivity to sound was so hyper-engaged during what was usually a hard time of day for me that the classical piano sounded like crashing heavy metal. I had to leave.

That experience was discouraging, but when I told my friend about it, he didn’t let me give up. He validated why it had been particularly hard and then encouraged me to try attending events in the morning, which was and still is a much better time of day for me. Since then, I’ve learned to make similar choices and adjustments that allow me to do some fun things—even if only in part—that I might otherwise have given up on entirely. Movies in the theater can still be hard on my brain, because the previews are often loud and fast-paced, causing sensory overload before the feature even begins. So I’ve learned to wait out previews in the lobby. I look down or close my eyes when the action on the screen is flashing or violent. I leave parties half an hour before I hit  the physical or neurological wall, so that I don’t melt down while there.

When you’re bedridden, going to a movie or a party might be out of the question. Even in that state, though, your life still doesn’t have to be all or nothing. Is your family downstairs decorating the Christmas tree? Why not go hang one ornament to participate at all, instead of missing out entirely? Are your friends having a Hanukkah party? Why not go just to see them light the menorah, even if you can’t stay to eat latkes and play dreidel? Participating in even the smallest bits of life while suffering helps us get through bad periods, and reminds us of what we can do, no matter how sick we are. And that, to be sure, is better than nothing.


jennifer-crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at [email protected].

 

A Naval Aviator’s Experience with Lyme Disease

by Luke D. Miller
#MyLymeLife

When I was 21, I earned my bachelor’s degree and accepted a commission as a Marine Officer in Quantico, Virginia.  Serving my country was my only dream. I spent many days and nights training in the Virginia wilderness. However, after returning from a week-long training exercise, I pulled an embedded tick off my abdomen. Unbeknownst to me, that seemingly harmless tick bite would eventually end my career. Immediately after the bite, I came down with a severe case of bronchitis and widespread joint pain. I went to the hospital and was prescribed antibiotics and anti-inflammatories. About a month past and I recovered, forgetting about the tick bite. As I progressed through my career, which took me to flight school, I began experiencing short-term memory problems, loss of concentration, and extreme exhaustion. I was working 12-18 hour days, so I blamed it on stress and the difficult curriculum. I medicated with coffee. I successfully graduated from flight school, with honors, and moved on to my next duty station: Whidbey Island, Washington.

While stationed at Whidbey Island my health deteriorated to the point where I was unsafe to fly, relied on my car’s GPS to find my way home, and faced a potential death sentence – a provisional diagnosis of ALS. Unwilling to accept that diagnosis, I sought out multiple opinions and one finally made sense, Lyme disease.

tick bite ended career

Within five years, at the age of 26, my health deteriorated to the point where I was disabled and unable to work. Subsequently, I was medically retired from the military and survived off of military, veterans, and Social Security benefits. Physically, mentally, and emotionally broken, I was lost. How did I become disabled? To the average person I appeared normal, but I was fighting an internal war with Lyme disease.

Now, at the age of 33, I am in my third year of law school. In five months I will graduate from Willamette University College of Law and set out in my new career as an attorney. I wouldn’t wish my life on anyone, but also one I would not change if I could. Through my struggles I was blessed to meet and marry my best friend. We have two beautiful children: our four-year-old son, Isaiah, and one-year-old daughter, Kalani. Raising our children isn’t easy for my wife, because much of the family responsibility falls on her because due to my physical limitations.

After eight years of continued aggressive treatment with a Lyme-literate doctor and weekly chiropractic care, I still struggle but my symptoms are manageable. I suffer from widespread pain and neuropathy, fatigue, concentration and short-term memory issues, but those symptoms are not always present. I have “good days” and those good days are increasing in frequency as symptoms grow milder. While I may not be the same person I was (and likely will never be), I am back in control of my life. I am happy and flourishing.

lyme disease could have broken me

Lyme disease could have broken me, but I refused to go down without a fight. Ironically, I became infected with Lyme disease because of my military service, but both my military service and Lyme disease have lead to unparalleled opportunities. Our family now operates a successful real estate business, which came about in part out of necessity, and I had the pleasure of working as a law clerk for the Oregon Department of Justice, Oregon Legislature, Veterans Legal Institute, two private law firms, and Willamette University College of Law’s Veterans Legal Clinic. My personal battle with Lyme disease reinforced my desire to fight for others. As I approach graduation, I cannot help but be grateful for where I am.

Don’t let Lyme disease silence or discourage you. Use it as a springboard to propel you to where you ultimately should be. Minus the cockpit, I am serving others as I always intended, but in a new way. Lyme disease seemingly ruined my life and career, but in the long run it did not; it challenged me and forced me to shift course. Rather than flying and dropping bombs, I take the fight to the “enemy” with words through court pleadings. I utilize our judicial system to help others and hopefully prevent them from facing a horrific reality as I did. However, if they do, I am here to help them navigate those formidable waters.

Lyme disease recovery is a harsh reality. You are sick, unable to think straight, and feel backed into a corner. There are few people to help you so you go it alone. However, if you can survive the first few years, you regain yourself. You realize, as you assist others, you can relate to those you help, because they occupy the same confused and scared position you stood in earlier. Know yourself, your limitations, and then you can begin to bear the burden of others.


Opinions expressed by contributors are their own.

luke-miller_blog-writerLuke D. Miller lives in Oregon with his wife and two children. He is about to embark on his new career as an attorney.

Lyme Disease Prevention Needs Co-Operation, Not Isolation

by Hannah Staab and Mayla Hsu, Ph.D., GLA Science Officer

With the election of a new President in the United States, the heated rhetoric about reinforcing America’s southern border has ignored the critical need for international dialogue and mutual cooperation to control the spread of infectious diseases. Infectious pathogens do not respect national borders. As we have learned from Zika virus, both humans and animals can facilitate disease spread between countries, making the border areas between countries an important place for disease control. The U.S.-Mexico border zone can be considered a hotspot for diseases acquired from animals, such as Lyme disease and other tick-borne illnesses, whose spread may be promoted by factors including climate change, poverty, and migration.

A study conducted jointly by Mexican and American scientists found that Ixodes scapularis, the tick responsible for spreading Lyme disease, is present in the border area, and 45% of these ticks were infected with the Borrelia burgdorferi, the bacterium that causes Lyme. In Mexico, a survey of blood samples revealed that 6.4% of people living near the Texas border had antibodies for Lyme bacteria, while other regions in Mexico reported only 1.1% seropositivity. This region has a higher rate of Lyme disease and other tick-borne illnesses than anywhere else in Mexico, and reasons for this could include the high traffic of host animals, such as cattle and white-tailed deer that move through the area. Tick-borne diseases may also become more prevalent in this area due to climate change. Variables including rainfall, invasive vegetation and increasing temperature are shifting the habitat range of disease vectors like ticks as well as their mammalian hosts, and it’s speculated that Lyme disease incidence will increase in this border area. Poverty, which worsens difficulties in obtaining timely health care information and treatment, is not solely a Mexican problem: 15.9% of Texans live below the poverty level.

However, preventing the spread of disease to humans is not the only focus of tick control in this region. Rhipicephalus microplus is a species of tick usually found in sub-tropical regions, that often transmits Babesia bovis, a parasite that causes cattle fever. This infection causes potentially fatal anemia and wasting in cattle, and leads to devastating economic losses. The parasite is related to a similar tick-borne parasite, Babesia microti, that infects and sickens humans.

In the early 1900’s, the United States established the National Cattle Fever Tick Eradication Program, which eliminated virtually all cattle fever ticks. Still, these ticks remain abundant in Mexico, and to prevent their movement over the border, the United States Department of Agriculture created a Tick Eradication Quarantine Area (TEQA). Within the TEQA, stray, illegal and US-bound animals are inspected. In order to export cattle out of the quarantine area, they must be treated with acaricides, which are chemicals that kill ticks. Although this method has been very effective in keeping cattle fever out of Texas, the excessive use of acaricide has caused the ticks to adapt and become resistant.

A study by Busch et al. (2014) took tick samples from various locations in Texas and tested their resistance to multiple acaricides. These tests revealed that 15 out of 47 of the collections contained ticks that were resistant to acaricides. Eleven of 15 acaricide-resistant populations were collected outside of the TEQA, indicating the ticks were not contained. The authors concluded that despite the extensive actions to inhibit the spread of ticks into Texas, there were two dispersal mechanisms that led to these tick infestations. The first was frequent short-distance dispersal of acaricide-resistant ticks despite the precautions taken at the border. The second mechanism was the less frequent, long-distance dispersal from the TEQA, possibly mediated by humans, or carried on other host animals such as white-tailed deer.

Acaricide resistance is a major threat to the mechanisms that are currently in place to control tick populations. A study by Stone et al. (2014) examined the genetic mutations in ticks that are associated with acaricide resistance. They identified three single nucleotide polymorphisms that led to resistance in the sample population. Many communities on the Texas-Mexico border are concerned that their cattle will become infected with cattle fever, and without acaricides there are few weapons to battle the ticks. Studies like this will provide the knowledge necessary to enhance our tick control programs and prepare for future problems.

Protection of human and agricultural animal health will need research and testing on both sides of the border, as well as information sharing and collaborative implementation of vector control. In order to achieve this goal, it is necessary for the U.S. and Mexico to work together to stop the spread of tick-borne diseases.

Trauma and Lyme Disease

by Susan Pogorzelski
#MyLymeLife

How could I compare my experiences with Lyme disease to those who had endured worse?

 

It’s taken me a long time to get to this point, to be able to admit that what I’ve been through in the face of this illness has been traumatic. The words “trauma” and “suffering” were always reserved for other people—people who faced unspeakable horrors, visibly fighting their demons with inconceivable bravery. How could I dare use those words when so many had been through so much more? How could I compare my experiences with this disease to those who had endured worse?

The truth is, Lyme disease is a traumatizing experience. From the initial diagnosis through recovery, it leaves its scars in a way few other illnesses do—invisible wounds from daily battles permeating our everyday life. I didn’t want to admit this. I wanted to get through recovery and move on. I thought I had, for a while.

When I went into remission after two and a half years of treatment, I was eager to move forward with my life, pursuing dreams with vigor and tackling challenges with ease now that I was presumably healthy. Slowly, those years of pain and fatigue, of isolation and loneliness, of questioning my own mortality and ability to survive passed into memory, becoming a part of my history. I had let it go; I had moved on, and I wasn’t looking back.

But then came the relapse, and with it returned all of the pain, uncertainty and old fear. Suddenly, I was facing again what I had fought so hard against, and I plunged back into depression, wondering if I would survive a second time. Back again was the familiar pain and the fatigue draining every ounce of energy from my body. Back again was the paranoia and anxiety. I couldn’t bear to leave my house. Back again was the knowledge that I had to keep fighting relentlessly for fear that I might succumb to this disease if I let up for just one second.

Hour after hour, day after day, year after year of fighting is enough to make anyone grow tired and weary, but the hardest part of Lyme disease is that it never relents. In the beginning, you’re fighting for a diagnosis among feelings of betrayal from the very doctors you entrusted to help save your life.  They question your symptoms, tell you it’s nothing more than a virus, pat you on the shoulder and tell you you’re just sensitive, and slowly you begin to wonder if maybe they’re right. Slowly, you begin to lose faith in the medical profession and, worse, in yourself.

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When you finally do get your diagnosis, it’s like an oasis in the desert, and you’re so grateful to put a name to the enemy that has stolen moments from your life that you wear it like a badge of honor. Suddenly you want to scream, “Here’s proof! Look at what I’ve been through! Do you understand now?” But you’re met with blank stares and nonchalant anecdotes about that time your colleague’s aunt had Lyme and it wasn’t that bad. They question your character, spread rumors that you’re not really that sick, and you fight for your reputation and livelihood, at the same time desperately trying to build awareness for a disease so few understand, so someone can finally understand you.

Then comes treatment and recovery, the biggest battle of all. Every single minute is a fight for your life, and you never feel safe because you’re always gearing up for another battle as you struggle against this invisible enemy inside you. This enemy which has slowly drained you, stealing moments and breaths until there’s hardly anything left and you feel like you’re only existing, not living.

That’s how the relapse broke me. I couldn’t relax because I never felt safe. I couldn’t have fun because I’d forgotten how. I couldn’t look too far ahead because I feared I would always be one step away from being that sick again. I felt shattered by these years of suffering, plagued by a fear that it wouldn’t end.

Lyme disease is traumatizing to the mind and spirit, especially when you suffer for so long. Day in and day out, we live with a disease that does its best to bring us down, and every second, we’re fighting to survive. Even when we get a break, even if we reach remission, the memory of this fight is still there in the back of our minds—a knowledge that any minute we might have to arm ourselves with renewed strength, renewed courage, and fight again.

In the year since my relapse, I’ve had to face this fear for what it is: trauma due to the many nuances of this illness. I’ve had to admit to myself that what I’ve been through—what every Lyme patient goes through—is a war of a different kind, leaving behind its own invisible scars.

Like any trauma, it takes time to heal. Like any struggle, it can transform us into something more positive, if we let it. Because the good thing about scars is they show us where the cracks in our armor are, and our experiences help us fill them up with something stronger, someone new.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

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From Lyme to the NYC Marathon’s Finish Line

Running a marathon of 26.2 miles is a herculean effort even for most healthy people. But for those who suffer a chronic health issue, like Lyme disease, it requires determination and drive that most of us couldn’t even imagine.

 

On November 6, 2016, Toni Blanchard, of Greenwich, CT and Jesse Ruben, of New York, both members of Global Lyme Alliance’s Young Leaders Council, became the first Lyme patients to run the New York City Marathon for Lyme disease research. Wearing GLA T-shirts created especially for the race, Toni and Jesse ran to spread awareness about Lyme disease and the need to raise funds for further research. They set up a Crowdrise account and, together, raised over $15,000 for GLA.

Crossing the finish line was a dramatic achievement for both runners. Recently we caught up with them to talk about their success. We hope it will inspire those working their way back to health.

Can you tell us about your experience with Lyme disease?

JR: I started feeling ill at the end of 2012 and was diagnosed in September 2013. During the time when I didn’t know what was causing my symptoms, I was dizzy, nauseous, had brain fog, crawling sensations in my body. At one point I couldn’t even walk up a flight of stairs. I was a mess. After I was diagnosed, I went through nearly two years of treatment. My symptoms slowly lifted and I felt like I became a human being again.

TB:  I was diagnosed when I was six so I never knew what feeling “normal” meant. I had terrible body pains when I was young and my feet would hurt to walk. I experienced exhaustion and tremendous difficulty sleeping, but this was all normal for me, so growing up I never understood that I was compromised. Since I was young, running and exercise in general have been important elements in my recovery.

What made you decide to run in the marathon?

toni jesse lyme marathon ylcJR: The first thing I wanted to do after my recovery was run the New York City Marathon for Lyme research. At first I was told I couldn’t: no Lyme-related charities were registered. Luckily, I had gotten a spot in the marathon lottery. Once Toni and I discovered we both had spots in the race, we decided to set up the Crowdrise account so that people could donate to GLA on our behalf. It was an opportunity to be a voice for people who couldn’t run the race and to raise funds for the organization.

TB: I always wanted to run the marathon. Running has been a huge part of my health regimen. It allows me to detoxify my body and clear my head. The marathon was an opportunity to run for GLA, for the Lyme cause and for all Lyme sufferers, especially the kids.

Did having Lyme affect your training?

TB: I did a half marathon in April, but I didn’t start intense training until August. At the end of September, I did a 20-mile run in Greenwich and then I had to take a week off. My body wasn’t able to handle the intense training and from then on the longest I ran was 12 miles.  I questioned whether I could do the marathon, but I had already raised money for GLA and I didn’t want to let down all who had donated, so I decided I would walk to the end if that became necessary.

JR: My energy level and muscle recovery were affected. I did a 20 mile run about a month before the marathon. I noticed my body didn’t bounce back as quickly as it did before I got Lyme disease. I had to give myself an extra day to rest after my runs.

What was it like to run in the race?

jesse running nyc marathon lymeTB:  I was having trouble breathing and became quickly dehydrated. By mile 18, I was breaking down and I didn’t know how I’d be able to finish. It came down to my doing a run-walk and just putting one foot in front of the other. I was really dehydrated and nearly collapsed at the finish line. I then had to spend over an hour recovering in the medical tent. I finished in 4 hours, 12 minutes, but I expected to run it faster.

JR: I got a stomach flu the day before the marathon. That morning I had to ask myself, “okay, is this going to happen today?” I decided I would do the race, but I would run slowly and steadily. Instead of trying to break a record, I ran very, very slowly and finished in 5 hours, 11 minutes. The experience was emotional for me. At mile 22 or 23, I began to think “I want this to be over,” but I then thought about all the doctor appointments, IVs and what I went through to get to the race and I tried to stay in the present.

What was the best part for you?

toni blanchard nyc marathonTB:  It was great wearing the GLA T-shirts that were created for the race—they really stood out.  I was amazed to hear so many people along the path yelling out to me about their experience with Lyme. I also was so touched at the start when we were all gathered at the Verrazano Bridge. It’s such an international event and listening to all the different languages was amazing. Plus the support of everyone, especially little kids, along the route was great.

JR: It was a four-year journey between the last marathon I was able to run and this one—so it was very meaningful for me.  Representing the Lyme community was also very special. A lot of people at the event talked with me about Lyme.  Everyone knows someone with the disease. 

Would you do it again?

toni blanchard post marathonTB: It’s something I’m thinking about. It’s given me a lot of confidence going forward. It’s an opportunity to spread the word and raise awareness. It can be difficult to imagine getting better, but I want to give people hope and show those who are suffering that it will be okay and they can overcome.

JR: I am going to do it the next year, the next year and the next year. I can’t wait. But I’m not just running for me. Thousands of people are suffering from this disease and feel like there’s no hope. I want to show people with Lyme there is something besides the anxiety and fear that they feel day after day. I hope we have given people hope for their own recovery.

 

What We’re Thankful For–Thanksgiving 2016

As we approach Thanksgiving, many of us pause to reflect on why we are thankful.

 

Without a doubt, the challenges with Lyme remain—better diagnostics and improved treatments are still sorely needed.  But there are some things we and others in the Lyme community can be grateful for this year:

More Celebrities Speak Out

Supermodel Bella Hadid and President-elect Trump’s former wife, actress Marla Maples, were honored by GLA in 2016. They joined a growing list of celebrities who are turning the spotlight on Lyme disease, including singer Avril Lavigne; TV personality Yolanda Hadid; basketball superstar Elena Delle Donne; TV producer and author Ally Hilfiger; Daryl Hall; Marisol Thomas, wife of Matchbox Twenty frontman Rob Thomas, among others.

New State Laws Help Lyme Sufferers

Maryland’s first ever Lyme disease law requires healthcare providers and medical laboratories that draw blood for a Lyme test to give patients a written statement explaining the potential for inaccurate test results. In Massachusetts, health insurers must now cover long-term Lyme antibiotic treatment prescribed by a licensed physician.

Increased Research Interest

GLA received a record number of 31 grant requests for 2016-2017 research funding, an 80 percent increase over the previous year. This year’s applications are from researchers at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom. While their areas of research are diverse, it’s clear that the tick-borne disease community is zeroing in on unraveling the complexity of Lyme disease.

IDSA Guidelines Removed from Federal Database

Outdated Infectious Diseases of America (IDSA) guidelines were removed early this year from the National Guidelines Clearinghouse (NGC), a federal database used as a reference for physicians and healthcare practitioners in treating Lyme patients. The guidelines, currently undergoing revision, have for years restricted antibiotic treatment of Lyme patients to between two and four weeks. At present, only the guidelines from the International Lyme and Associated Diseases Society (ILADS) are on the NGC.

Increased Media Coverage of Lyme

FOX5 News aired two specials watched by tens of thousands called “Lyme & Reason: The Cause and Consequence of Lyme Disease” and “Lyme & Reason 2:0: Lyme Disease & The Voices of Change.” In addition, Lyme disease stories aired on WNET/MetroFocus, WBUR/PBS, CBS and local outlets as well as in national publications such as Huffington Post, Science, Town & Country, and others.

Most of All

… we are grateful for the unwavering support of Global Lyme Alliance’s volunteers, donors, and friends. Please help us accelerate progress in the fight against Lyme and join us in our Quest for the Test, GLA’s global effort to raise funds for a critically needed Lyme diagnostic test.

Wishing you and your loved ones a Happy Thanksgiving.

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Spreading the Light of Gratitude

by Jennifer Crystal

The importance of finding gratitude when you suffer from a chronic illness like Lyme disease

 

The upcoming holiday has us all thinking about being thankful. Thanksgiving is a time for feasting and gathering, but it is also a time for reflection on the things we’re grateful for. Depending on what’s going on in our personal lives and in the world, some years it’s easy to come up with a long gratitude list, and other times the list is sadly lean. Even during a time of purported joy, it can be easy to grow cynical and depressed when you don’t feel like you have much to be thankful for.

Lyme patients, people with chronic debilitating illnesses, and anyone going through adversity often fall into that trap. It’s hard to sum up gratitude when you’ve been sick for days, months, or even years. It’s hard to be thankful when it feels like the universe is conspiring against you, when things keep going from bad to worse, when it seems like your world or the world at large is falling apart.

It’s hard, but it’s important to find gratitude.  In fact, it can be game changing.

Research proves that practicing gratitude not only improves health and outlook, it actually rewires our brains. Following a study done by Indiana University researchers, New York Magazine reported that “…the more practice you give your brain at feeling and expressing gratitude, the more it adapts to this mind-set—you could even think of your brain as having a sort of gratitude ‘muscle’ that can be exercised and strengthened.”[1]

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How do you go about flexing that muscle when you’re bedridden, or you can’t see past your despair? My own gratitude muscle almost succumbed to entropy. I stopped that from happening by starting a simple practice: each night before bed, I pulled out a journal and wrote down three good things that had happened that day. It was something I used to do orally with my campers when I was a summer camp counselor. Each night at Taps, we’d go around the cabin and everyone would say three things they liked about the day. The activity helped us reflect on busy days that were fun but also had their hardships; it set a positive tone in the cabin; and it helped the campers drift off to sleep with warm thoughts on their mind. I figured I could use that same positivity during my dark life of illness.

At first I had a hard time coming up with even one good thing about a day filled with pain and fatigue. But I realized I could find good even in those symptoms. Maybe my pain had only been a 9 that day, when for the last three days it had been a 10. That was a good thing. Maybe I had been able to sit up for 30 minutes, when previously I hadn’t been able to get up at all. Once I started reframing my perspective on all the awful feelings I was experiencing, it became easier to find their silver linings.

Soon, I was able to look past my symptoms when I reflected on the day. I realized other things had also happened during the day, besides a migraine and a fever and an exhausted afternoon when I could not nap. A friend had called. A get well card had come in the mail. I’d had a delicious gluten-free sandwich for lunch.

It didn’t matter that my list was simple. What mattered was that it existed. In just a few weeks, my gratitude journal started to fill up. On bad days I could flip through old entries and find something to smile about. I held a burgeoning, tangible reminder of good things that were happening amongst all the bad, and simply holding that growing booklet in my hand gave me strength. As my gratitude muscle grew stronger, so did I, and that would come as no surprise to the researchers at Indiana University. According to the New York Magazine article, the study results “suggest that even months after a simple, short gratitude writing task, people’s brains are still wired to feel extra thankful.”

It gets better. The article also states, “…gratitude can spiral. The more thankful we feel, the more likely we are to act pro-socially towards others, causing them to feel grateful and setting up a beautiful virtuous cascade.”

I see this cascade every year at my own Thanksgiving table. Before the meal, each member of our family says what they are thankful for. We’ve done this for as long as I can remember. One year, my sister suggested we add candles to the tradition. Now, as each person says what they’re grateful for, they light a small votive candle. They then use their candle to light the next person’s candle. That person says what they’re thankful for and then passes the flame to the next.

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What strikes me about this exercise is that we can see how gratitude builds upon itself. Saying what we’re thankful for is nice, but the words disappear. With the candles, we have glowing reminders of our thanks. Each person’s flame is small, but together, we create a circle of light. It reminds me that there is more to be thankful for than I sometimes realize.

During my lowest points of illness, when I struggled to find something to be thankful for, this exercise also reminded me that I was surrounded by gratitude, even when I couldn’t feel it myself. There is gratitude and light around you, too. You may not feel it from the confines of your bed. You may not have the support you need from your own family or friends. But it is out there. By writing this piece, I pass my light on to you, in hopes that it will make your day a little brighter. When you’re better, you can pass that light on to someone else. Until then, remember that there are lights around you to buoy you up. Life is not as dark as it may seem.

And even from your bed, you have the ability to start controlling that light. To start flexing your gratitude muscle. Start tonight by writing down three good things about the day. What will the first one be?

[1] http://nymag.com/scienceofus/2016/01/how-expressing-gratitude-change-your-brain.html


Opinions expressed by contributors are their own.

Jennifer-CrystalJennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

How to Be a Good Partner to Someone with Chronic Illness

by Kerry Heckman
#MyLymeLife

How do I know how to be a good partner to someone with chronic illness? Because I have one. But that wasn’t always the case.

 

I was diagnosed with my first autoimmune disease shortly after my husband, Zach, and I got married. We’ve been married almost ten years, and I’ve been more or less sick the entire time. There was a time when Zach had very little patience with me and my ever changing symptoms.

Before I was diagnosed with Lyme disease, anxiety was one of my worst symptoms. I literally thought I was going to die. I would wake Zach up in the middle of the night, looking for reassurance for unexplained chest pain or a mole that looked different. I would jump to the worst case scenario in every situation, then perseverate on it for hours. After awhile he started walking out of the room, because he didn’t want to listen to it anymore. It felt like he wasn’t there for me.

Then, there was the year when I was really sick. I stopped being able to help out around the house and all the responsibilities feel on him. I couldn’t cook or clean, the laundry piled up in the basement. He wanted to go to concerts or out to a bar like we used to, but I was just too tired. By any definition, I was not a good spouse or partner and occasionally he would remind me of it.

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Yet something shifted after he came with me to my first appointment with my Lyme specialist. He developed patience with me. He started to listen more, and sit with me while we talked through my symptoms. Slowly we became partners in fighting Lyme.

Every day I hear heartbreaking stories of how chronic illness tears apart relationships and ends marriages. When you can’t see an illness, it’s very easy to think someone is faking it or taking advantage of the situation. Sometimes the healthy partner thinks “I did not sign up for this,” and takes off. Sometimes I think the partner leaves because he or she is not strong enough to watch a loved one suffer.

Some advice for partners:

Be there.

I’ve been known to break into spontaneous crying fits. I can only imagine it’s how annoying and frustrating that is for my husband. At first he tries to walk away and then I see the thought process going on in his mind as he slowly turns around sits down next to me. My crying fits only last a couple of minutes, then I take a few deep breaths and gather myself.

Just sitting with someone while they are breaking down is one of the most powerful things you can do, and you don’t even have to say a word.

Listen and ask questions.

Talking things out is how people process thoughts and emotions. Lyme has been described as a do-it-yourself disease. There is no standard treatment, so we have to make decisions about our treatment protocol, our diet, and our exercise regimen without much guidance. There are a lot of other things to process with chronic illness. We sometimes wonder why this is happening to us or if we’ll ever get better. Sometimes we don’t have “a point” or are not particularly good at making sense, but it helps just to talk.

When your partner asks you to read something, read it.

One of the symptoms of chronic Lyme is brain fog and we often have difficulty finding the words to express how we feel. Sometimes I find an article or blog post that I really relate to and I ask my husband to read it, so that he can understand me better. It’s a simple gesture, but it will bring you closer together. Do what you can to learn about the illness. You can even look for articles on your own, and bring them up to your partner.

Go to appointments when you can.

Like I said earlier, something changed after my husband started going to my appointments with me. I think a doctor validating my symptoms made it real for him. He knew I wasn’t making it up when the doctor said everything I was experiencing was a symptom of Lyme.

Embrace diet and lifestyle changes.

One of the most helpful things my husband has done was go on an elimination diet with me. He was having some health issues, but probably didn’t need to completely change what he was eating. It made it so much easier to do it together and we kept each other accountable.

There have been many times during this journey I have felt like a burden. Our money is spent on treatments rather than nights out, I have a strict bedtime of ten o’clock. I do not have the stamina to go to parties. But we still make an effort to make things fun, like cooking together, watching comedies to laugh together, and choosing low key events we both can enjoy.

Stand up for your partner to others.

My husband lives with me every day, while my friends see me only occasionally. He knows the truth about my illness, which I often hide from others. It makes me feel so supported when he speaks up about my illness to my friends and family. I get sick of defending myself and it’s nice that he is willing to take over.

Allow your partner space to heal.

This year my husband gave me the greatest gift he could ever have given me. He suggested I leave my job and take a part-time job. It’s allowed me the space to start the healing process.

Maybe allowing your partner to quit his or her job isn’t possible in your situation. Think about what else you can do to allow your partner space to heal. Can you put the kids to bed while he or she takes a bath? Can you help sort and pay the flood of medical bills? Can you give up a corner of your office for a meditation space? Any little bit helps.

Believe your partner, all the time, every time.

People with invisible illnesses, often feel just that, invisible. When we tell our coworkers we are in pain, but we don’t look like we’re in pain, we’re afraid they don’t believe us. A partner can be the one person with whom we don’t have to worry about being ourselves. Don’t second guess, don’t minimize, just believe.

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On the other hand, I have some advice on how someone with a chronic illness can be a good partner. Don’t expect perfection. Know that this is a hard road that no one asked for, including your partner. Express gratitude, even for the tiniest things that make your life easier.

Pass this article along to your partner. It may help to open a dialogue. However, be careful not to imply your partner isn’t doing a good job, which can easily make a person defensive. Pursue a dialogue on how you can be better partners to each other. As the patient, I have empathy for the caregiver. There is no recognition and no attention paid to your struggle. Doctors rarely ask the partner how they are feeling.

Lyme is a third wheel in our relationship. It’s something for which each person has to take some responsibility. Every day Zach is learning how to be a better husband to someone with a chronic illness. Sometimes I’m amazed at the information he has picked up about Lyme disease or my autoimmune conditions. He went from never wanting to talk about it, to bringing it up when he sees an article online.

All relationships take hard work, and when you add in Lyme it makes it ten times more difficult. While you are fighting the illness, the pain, and the fatigue, remember to also fight for each other.

Read Kerry’s previous blog, “Grieving the Loss of a Career to Chronic Illness“.


kerry-j-heckman-profile-picture_thumbnailOpinions expressed by contributors are their own.

Kerry J. Heckman authors the wellness and lifestyle blog Body Mind Lyme. Kerry was [finally] diagnosed with chronic Lyme disease in 2016, her journey with invisible illness began over 10 years prior.

Falling Back: It’s Not Real

by Jennifer Crystal

Changing clocks, Lyme disease, and Herxing

 

Twice a year I dread changing the clocks. Even in spring when extra daylight heralds warmer, brighter days, I know the shift will cause a dark period for me. It’s worse in autumn when twilight comes so early. The time change is an adjustment for everyone, but for Lymies, it can upset our already unstable circadian rhythms, causing sleep disturbances and an uptick of neurological and physical symptoms.

Twice a year I have to remind myself, it’s not real.

Of course, the time change is real. The loss or gain of an hour is real. The symptoms I experience are real, as are the frustration and anxiety that often accompany them. But they are not representative of a normal, “real” period for me, and that can be hard to remember when I’m in the throes of a flare-up.

Luckily, I have friends to remind me. One friend in particular taught me this important lesson years ago when I was in the midst of a Herxheimer reaction and absolutely beside myself. “Herxing” is when antibiotics kill bacteria faster than your body can eliminate them, causing you to feel worse before better. A body riddled with both live and dead bugs is a sick body indeed. When those active and slayed spirochetes are also in your brain, the situation goes from awful to unbearable. In that space, it’s hard to see what’s really going on. You need someone to say, “It’s not you; it’s a bug in your brain,” as one support group leader told me. Or you need a friend to tell you, “It’s not real.”

I remember sobbing to that friend on the phone as I lay twisted in my bed, rocking back and forth and wrapping my arms around myself. “I’m never going to get better,” I sputtered. “This is the worst I’ve ever felt. I’m only getting worse. I can’t sleep and my brain is racing and I’m too exhausted to even breathe and everything hurts and I can’t sleep and…”

“Shh,” my friend soothed. “It’s not real.”

This was an empathetic friend, so I knew she didn’t mean “it’s all in your head.” Instead of boiling over with anger, I paused in my tirade.

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I was months into treatment, and my friend had been through these ups and downs with me. That meant she knew the ups had existed before and would again. “This is just a terrible period you’re going through,” she said, “but it’s not really how you usually feel. I know you always feel sick. But this is especially bad, and it is going to pass. Your body has worked through this process before, and it will again.”

I took a deep breath. “You really think so? What if my antibiotics aren’t working and I need to switch them up?”

Ever the diplomatic problem-solver, my friend said, “How about this. How about you give yourself a week to let these symptoms settle out. If you’re feeling worse in a week, then talk to your doctor about maybe switching things up. But give yourself the time to see if these symptoms are your new real.”

Of course, she was right. The flare up wasn’t my new real. Within a week the Herxheimer reaction had settled down. I wasn’t feeling great, but I was no longer ready to jump off the deep end. My exhaustion had moved from excruciating to debilitating, which for me was normal. The insomnia had calmed down a few notches, and I’d gotten some sleep. I was back on an upswing, heading to my regular normal and not long after to an even better version of “real”.

The autumn clock change causes the same type of literal fall back I experienced during that Herxheimer reaction. Now that I am in remission, the resurgence of symptoms is thankfully not that bad, but it still makes me panic. It’s easy for to slip into a state of, “Oh no! My sleep is off! I’m so tired! I’m so irritable! I’m relapsing!”

I’m not. By next week, it’ll undoubtedly get better, just as it has every time I’ve had an upset from stress or from travel. If you are struggling with the clock change, let me be the friend to tell you, “It’s not real.” This too shall pass.


 

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at [email protected]

Night Sweats & Lyme

by Anthony Brandt
#MyLymeLife

The real estate ads never mentioned the deer. Thanks to a very smelly mix of chemicals we can still grow hosta, their favorite food, but the chemicals have to go on after every rain, and we now buy shrubs and other perennials according to whether the deer like them or not. But you can’t, in the end, spray everything. And the deer like our yard regardless. We drive up our driveway at night sometimes and there they stand, in the back yard by the hedge, four or five of them, just hanging out, staring in that startled deerly way—what are you doing here?—and we get out of the car and yell at them, or growl like very angry wolves, and they climb through the hedge and disappear.

But they have left ticks behind, you can be sure of that. I read somewhere that the average deer has something like 400 deer ticks living on each ear. Each ear? One of them is bound to get you.

I do my own gardening and one got me some years ago. I noticed what seemed to be a bite on my right knee but no bull’s-eye rash, which is supposed to be the marker for Lyme disease, and no tick either. So I ignored it. Big mistake. After a couple of days a redness did appear and, because Lyme disease is well-known in the Hamptons, on eastern Long Island, where we live, I made an appointment with my dermatologist, who I knew to be an expert on Lyme disease, and he explained that he couldn’t be sure, but it was best to be safe. This was a man who had saved my life by identifying a mole on my arm as a melanoma and taking if off at a stage where it was minimally dangerous. So two days later I was on doxycycline.

Too late. One day later I was sick in bed, feeling achy and stiff and weak, not interested in eating, like having the flu without the sneezing and coughing and runny nose. Then I went to sleep.

Do you know what night sweats are? I didn’t, but now I do. You wake up soaking wet. SOAKING. It’s as if you just stepped out of the ocean, you are wet head to toe, and the bed around you is equally wet and you wonder whether there’s a hole in the roof and it just rained on you. And this happens night after night. You think, this is what malaria must be like. Yet you don’t feel feverish, although you must be, it’s not like chills and fever. It is the thing I remember best about the whole experience.

In the end, the antibiotic did its job. I got better, and there has been no recurrence. I count myself lucky. I know people out here in the Hamptons who have had Lyme disease four or five times, and a few who have had it so severely that the damage it did is more or less permanent. On nearby Shelter Island, where deer are especially abundant, a large proportion of the population—I don’t have exact figures—have had it more than once. I’ve been bitten by ticks since, but I’m vigilant. If you find the tick on your body you go to any local doctor and get a prophylactic dose of doxycycline and take it right away.

We have programs out here now to deal with the deer. Some local towns hire hunting professionals to thin the population. The deer lovers, and there are many, object to the hunters and set up chemical rubs on posts where the deer come to feed on food laid down to attract them, and the deer rub against the posts. Some communities have expensive deer sterilization programs. Deer are a definite issue in the Hamptons.

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None of these programs, unfortunately, works very well. Nor are the antibiotics foolproof. If you live in an area where Lyme disease is not that common, your doctor may not be well versed in the ways of the disease and be reluctant to treat it. Some doctors rely on blood tests to see if it is Lyme disease, but they are often inaccurate. When the antibiotics are used too late, the disease can become chronic, and the symptoms persist for months or even years. I know of one person who spent six months in a hospital on an antibiotic drip before being cured.  I know of another who, after multiple infections, has never been cured.

My own solution would be to return mountain lions to the area. It sounds drastic, and it would be hard on the local cats and dogs, but deer no longer have natural predators in the East, and the population has soared. People are amazed to discover that there are more deer in North America today–more than 24 million–than there were in 1620, when the Pilgrims arrived. They are responsible for hundreds of deaths in automobile accidents every year; indeed, driving at night out here has become increasingly dangerous. My wife and I have had deer run in front of our car, bang into it from the side, and otherwise scare the hell out of us.

And they carry around an enormous number of ticks, which not only give people Lyme disease but Rocky Mountain spotted fever, babesiosis, and twelve other diseases. Mountain lions are not out of the question, to my mind.

But then I’ve had night sweats. I’ve worried about dealing with severe joint pain the rest of my life, which is one thing Lyme disease can cause. Before Lyme was first diagnosed, indeed, there used to be something called Montauk knee, a chronic pain in the knees that affected residents of Montauk in particular, where the deer population has always been high. Where there are deer, there are ticks. Once, on Martha’s Vineyard, my wife and I took a walk into the dunes there and came out with 20 or 30 ticks apiece crawling up our legs. We stripped to our undies on the spot to pick them off our bodies. My dermatologist talks about ticks as walking sewers. I sometimes think, suppose they had wings, like mosquitoes?

I garden on summer weekends, and then I check myself for ticks. I don’t want to have Lyme disease ever again. I took one off my knee–they seem to like my knees–this last June, and then took the prophylactic dose of doxycycline. It worked, I didn’t get Lyme disease. But I know I’ll get bitten again. I read somewhere that scientists have run experiments with ticks where they’ve placed them on blades of grass and the ticks have spent as much as a year on them without moving, waiting for an animal to come along and become their host. I have personally seen them in just that situation, one half of them clinging to the grass, the other half grasping the air, waiting for me, or some other host to come along.

Mountain lions. Coyotes. Whatever it takes. I should be able to walk across my own back yard without being afraid of getting deathly ill, don’t you think? Is that too much to ask?


Opinions expressed by contributors are their own.

anthony-brandtAnthony Brandt is the editor of National Geographic’s Adventure Travel series of books and the author of articles in numerous national magazines including The Atlantic, GQ, and Esquire.

Stabilizing Blood Sugar During a Season of Sweets

by Jennifer Crystal

Hypoglycemia and Lyme Disease

 

The first symptom of tick-borne illness that I experienced was one I’d never heard of: hypoglycemia. I was working as a summer camp counselor in the woods of Maine and had just finished a morning teaching water sports in the hot sun. As I walked into the dining hall for lunch, I suddenly felt the room was spinning. The chatting campers morphed into a blur of color. I sensed the blood draining from my face and grabbed onto a bench before my legs gave out. Friends held my arms and got me to an adjacent counselors’ room, where I lay down on a couch. “You must be dehydrated,” one said.

I shook my head and said,  “I’ve been drinking water all morning.” Despite lying down, I still felt like I might faint. My palms we