Category Archives: Blog

The Strange Symptoms I Never Knew Were Related to Lyme Disease

by Kerry J. Heckman

…each symptom was a piece of a puzzle. The pieces were scattered throughout my life and I didn’t know if they were all pieces of the same picture or not.

In college, I was in the concert choir and during my sophomore year, I lost my singing voice. For an entire semester whenever I opened my mouth to sing, nothing came out. I could speak normally, but my singing voice was gone. It was completely out of the blue and I thought it was because I was staying up too late and doing the things college students tend to do. Then just as strangely as it left, my singing voice came back.

Flash forward to 2017 when country singer Shania Twain was diagnosed with Lyme disease. Years prior she suffered from “dysphonia,” or hoarseness, which brought her singing career to a screeching halt. After she was diagnosed, she attributed her temporary vocal loss to Lyme disease. When I heard about Shania, the vocal loss I suffered over 15 years ago finally made sense.

By the time I was diagnosed with Lyme disease in 2016, I’d experienced almost 20 years of these odd, seemingly unrelated, symptoms. It’s like each symptom was a piece of a puzzle. The pieces were scattered throughout my life and I didn’t know if they were all pieces of the same picture or not. It wasn’t until I got a diagnosis that everything seemed to fit and the picture became clear.

My college friends used to joke that I was never able to get off the couch. I was constantly asking my roommates to bring me glasses of water. I thought I was lazy, but later I realized I had chronic fatigue syndrome even back then. It’s hard to understand because I was active and involved in countless clubs, but when I crashed, I crashed hard. No matter how hard I tried, I literally couldn’t drag myself off the couch. It wasn’t normal for a 20-year-old to feel this way, but I never thought to question it.

In my mid-twenties I started waking up in the middle of the night drenched in sweat. I thought it was from nightmares (which were probably also related to Lyme), but it turns out it was the multiple co-infections that often come along with Lyme. I also noticed bumps on my neck and behind my ears. Doctors weren’t overly concerned, but when I asked other people, no one had experienced anything similar. Later I learned these were swollen lymph nodes, constantly inflamed from years of battling Lyme spirochetes that were slowly multiplying in my body.

Around this same time, muscle and joint pain started in my shoulder and migrated to my hips. It was difficult to describe to doctors because it was there one week and gone the next. I remember getting a lot of shrugs and referrals to the next doctor or the next physical therapist, who also shrugged it off. There were days I could barely walk and had to shuffle across the floor, but I learned to live with it because there was no easy explanation for what was happening.

Now when I look back at these symptoms, I wonder why I didn’t fit the puzzle pieces together sooner. People in their twenties shouldn’t be waking up covered in sweat or shuffling across the floor like an octogenarian. Maybe it was because the symptoms disappeared and reappeared or maybe it was because they flew just below the threshold of what I considered serious. Maybe if I had just asked the doctors, “Could all these seemingly random symptoms be related?” they would’ve dug deeper. Unfortunately, that is not how our fragmented healthcare system works.

My story is not unique. Many people with Lyme disease and co-infections spend years putting band-aids on symptoms only to get an accurate diagnosis decades later. I marvel at the astounding amount of patience and persistence it takes one to finally be diagnosed with Lyme.

The symptoms of Lyme disease are as varied as the people who contract it. Each one of us has different puzzle pieces that make up the picture of our illness. These symptoms match those of many other diseases, which is why diagnosis is often so difficult. Lyme disease can even trigger autoimmune diseases making this puzzle one of the hardest to solve in medicine.

Let’s hope someday soon these strange symptoms will not longer baffle doctors and other health professionals, and instead be recognized as classic Lyme disease symptoms. When that day comes treatment will not be delayed, outcomes will improve, and all the efforts to provide awareness and education will have been worth it.


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.

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  jennifercrystalwriter@gmail.com

We Are the World: What I Learned About the Global Health Threat of Lyme disease

By Jennifer Crystal

It’s frightening that tick-borne disease is so globally prevalent. But I’m encouraged that so many doctors and scientists are studying the problem and sharing their findings.

As 2017 drew to a close, I found myself reflecting on some of the issues that divide and unite people around the world. You may be surprised to learn that tick-borne illness was high on the list— and not just because I suffer from it myself. This year I have received emails from patients in states across the country, and from Canada, Sweden, Germany, France, Costa Rica and Australia. After connecting with them and those attending the International Lyme and Associated Diseases Society “Global Perspectives” conference, last November in Boston, perhaps my biggest surprise was learning that tick-borne disease is a world-wide problem. Moreover, it’s one that people are working together internationally to fight, and that gives me hope as we start 2018.

In my October “Bursting the Woods of New England Bubble” post, I dispelled the common myth that Lyme only exists in the Northeastern U.S. I now learn more every day about just how far tick-borne disease has spread geographically. At the ILADS conference, I attended a presentation called “Does Lyme Exist in France?” by Dr. Christian Perronne, Professor of Infectious and Tropical Diseases on the Faculty of Medicine Ile-de-France Ouest.

I learned not only that Lyme indeed exists in France, but that it is a big problem across Europe, and has been for centuries. Dr. Perronne noted that Borrelia, the bacterium that causes Lyme disease, has existed in Austria and Italy for 5,300 years, and that research was beginning on the disease as early as 1883 in Germany, 1910 in Sweden and 1911 in Switzerland. Ticks have now spread across many European countries, and they are increasing contagion in Ireland, Great Britain, France, Spain, Portugal, and Italy. There are approximately 230,000 new cases of Lyme reported in Western Europe alone each year, creating an estimated 1 Billion euros financial burden. That’s almost as many cases as we see in the United States, and Europe has many different strains of Borrelia, making Lyme harder to diagnose and treat.

But the problem extends beyond Europe. At the ILADS conference, Dr. Ndudim Isaac Ogo of the National Veterinary Research Institute in Vom, Nigeria, gave a lecture called “The African Perspective.” I learned that tick-borne disease is a major issue for livestock throughout Africa and that many of the bacteria are infectious and can be transmitted to humans. Despite this growing public health risk, Dr. Ogo said that tick-borne diseases are largely neglected because the threat is not considered as important as endemic malaria or typhoid fever. Despite the fact that there are no “confirmed” cases of tick-borne disease in Africa, researchers are finding serological evidence of Borrelia in ticks on animals and humans. Many are suffering from Lyme, ehrlichiosis, anaplasmosis, the many forms of spotted fevers, and are not getting funds for essential research, diagnosis or treatment.

Medical surveillance is improving in some areas of the world, but a diagnosis is still difficult due to the inaccuracy of current tests. As John Lambert, MD, Ph.D. of the Dublin Ireland Infectious Disease clinic said in his own ILADS presentation, “just because you don’t test for it, just because you don’t survey it, doesn’t mean it isn’t there.” The good news is that research and awareness are growing, if slowly, in countries around the world.  I see evidence of it every day in various publications. The Himalayan Times recently published a piece called “Emerging Lyme disease: A Wake-Up Call for Nepal”. Researchers in the Philippines undertook a study of tick-borne disease in livestock, noting that “…further studies might be needed to determine the nationwide prevalence of TBDs (tick-borne diseases) and the presence of other tick species and TBD pathogens.” The Philippine situation may have parallels in other developing countries.”[1]

In scientific and medical journals covering infectious disease, pediatrics, ophthalmology, rheumatology, and veterinary medicine, I see articles on tick-borne diseases in countries from South America to Asia. It’s frightening that tick-borne disease is so globally prevalent. But I’m encouraged that so many doctors and scientists are studying the problem and sharing their findings.

Perhaps the best news of all is that thanks to digital technology, patients can connect with each other as never before. I recently Skyped a woman in Canada who told me she had never met anyone who understood her story well. I exchanged emails with a woman in France because I speak her language—not just French, but the language of Lyme as well. Everywhere patients go, they can work to spread the understanding of tick-borne diseases. A few weeks ago I shared a cab with an ophthalmologist from Sweden who was doing a month of medical training in Boston. He’d heard of Lyme disease but didn’t know how it was treated, how serious it could be, or that ticks could also transmit co-infections. By the end of our short ride together, he had a better understanding and asked for my card so he could look up the Global Lyme Alliance and learn more.

Tick-borne disease is a global problem, but it’s also a growing international conversation. Let’s all work to enrich the dialogue in 2018!

[1] https://thehimalayantimes.com/opinion/emerging-lyme-disease-wake-call-nepal/).


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  jennifercrystalwriter@gmail.com

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.


Making the Holidays Work For You

By Jennifer Crystal

Many people with Lyme disease don’t have the physical capacity to celebrate the holidays. But that doesn’t mean you can’t enjoy them! Here are some tips to work around your illness during the holidays.

When my college friends and I were in our early twenties, we used to gather every New Year’s Eve in a city where one of us was living. We partied, cheered at midnight, and continued celebrating into the wee hours of the morning.

Each year, the festivities got a little harder for me, and it wasn’t because I was getting older. It was because tick-borne diseases had been infecting me since I was 19, quietly spreading through my body and brain until, when I was 25, they fully commandeered me. Finally diagnosed with Lyme and some of its co-infections, and on intense treatment, I became bedridden. Traveling for New Year’s—let alone staying up until midnight—was out of the question.

Since I couldn’t celebrate the holiday the way I traditionally had, I came to feel that celebrating at all was also out of the question. I was wrong.

After their festivities, my friends began a tradition of traveling on New Year’s Day to my parents’ house in Connecticut, where I was convalescing. We’d eat lunch together, and they’d sit with me on the couch. Sometimes I fell asleep while they were talking, surrounded by the warmth of their voices. Sometimes I disappeared upstairs to rest in my bed. When I came back, they were still there chatting and laughing, waiting for me. It was a demonstration of unconditional love.

It was also a lesson in unconventional holiday celebrations. Many people with Lyme and patients with other debilitating illnesses don’t have the physical capacity to mark holidays the way they did when they were well. They may no longer be able to cook their favorite meal, travel to a family gathering, or even sit up through dinner. But that doesn’t mean they can’t celebrate at all. It just means they have to reframe the festivities to work around their illness.

What might this look like in practice? Here are some suggestions:

  •  Change the celebration to a time that works for you. Even after I wrestled my health into remission, I still couldn’t stay up until midnight. One year my graduate school friends threw a party on New Year’s Day instead of on New Year’s Eve. We had brunch and then I took a nap. My family now does Thanksgiving, Hanukkah and Christmas dinners around 4 p.m., after I get up from my nap. I miss hors d’oeuvres, but I’m still able to enjoy the meal and be well-rested to boot. My college friends still get together around the holidays for what we call “Christmakkah.” They drive to wherever I am, and though it’s not technically on Christmas, Hanukkah or New Year’s, the point is that we get together and enjoy each other’s company, in a way that works for all of us.
  • Bring the celebration to you. This doesn’t mean you have to do all the work. In fact, you may not be able to do any of it. But would friends or family members be willing to gather at your home, rather than you having to travel, and bring food with them or cook it at your house? Perhaps they can help prepare your favorite meal; you can direct them from the table or couch, or sit down to chop one apple while they stand to do the rest. I know how hard it is to ask for help, but friends really do want to pitch in and feel like they’re doing something tangible for you. They may be more open to changing tradition than you’d expect. Sometimes all you need to do is ask.
  • Realize it doesn’t have to be all or nothing. You might not be able to string lights on a Christmas tree, but that doesn’t mean you have to stay upstairs in bed while your family decorates. Can you hang one ornament? Or lie on the couch watching your family trim the tree, so you can still feel like you’re part of the action? You might not be able to attend a full party, but could you have a friend drive you over early to visit with the host for half an hour before things get too busy and noisy? Can you attend the party but ask the host if you can slip upstairs to lie down if you feel the need?
  • Remember it’s okay to say no. Holidays are stressful for everyone, a time when both the healthy and the infirmed tend to push their limits to travel, attend gatherings, or rush around shopping and going to parties. Ask yourself, is this push really necessary? Is it worth it to jeopardize my health? You must put your health first, even at the holidays, even if that means missing out or being disappointed.
  • Take time to celebrate yourself. One Christmas I was too sick to go next door to the neighbors for dinner. I had a pity party for a few minutes. Then I ordered my favorite Chinese food, put on cozy holiday pajamas, and journaled about the progress I had made during that year. Even if you can’t go anywhere or do anything this holiday season, you can still turn yourself and your place of convalescence into a comfortable spot for a personal celebration. Take a bath, read a light magazine, watch a favorite holiday movie, or do whatever it is that makes you feel nurtured.
  • Remember the big picture. Celebrating “Christmakkah” helped me realize that ringing in the New Year with my friends was about being with them, not about being awake at midnight on December 31st. You might not be able to do all the activities you used to do, but what’s the most important part of those celebrations anyway? Is it being with people you love? Singing carols? Eating a specific meal? Find a way to enjoy those parts on an alternate schedule, rather than bemoaning the fact that you can’t celebrate the full holiday as you are “supposed” to.

I wish you all a happy and healthy holiday 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. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

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.

Ticks Are a Year Round Threat: Don’t Let Lyme disease Become Your Holiday Surprise

By Jennifer Crystal

Writer Jennifer Crystal discusses common Lyme disease misconceptions. Many are surprising! Read on to ensure you are up to date.

In late November, a friend told me she’d just found an engorged tick on her leg. “Isn’t that crazy,” she said, “at this time of year?”

Like many people, she had fallen into the false sense of security that colder weather meant fewer ticks. Maybe this was true once. Now, however, ticks are a year-round problem. While deer tick nymph season is in late spring and summer, adult ticks feed in fall and—thanks to global warming— in winter too. Ticks can’t survive in very cold climates, but now that we are experiencing markedly warmer winters in the U.S., ticks are living year-round and in previously inhospitable areas. Warmer temperatures have also sped up ticks development rate, allowing them to reproduce faster.

In a recent Boston Globe article, Dr. Howard Frumkin, former environmental health director at the US Centers for Disease Control and Prevention, said that “the ticks do better with warmer weather.”[1] Indeed, Lyme cases have more than doubled since the 1990s, with the CDC now reporting approximately 325,000+ new cases each year.

Another reason for this explosion in numbers is the way Lyme disease is spread.

We typically associate Lyme with deer—and increased deer populations are a problem—but those animals are not the only tick vectors. Birds and white-footed mice also host ticks, allowing ticks to travel to unexpected areas at unprecedented rates. White-footed mice have become a bigger problem in the last two years due to a bumper crop of acorns—more food has meant more mice and, therefore, more hosts for ticks. A late autumn stroll among acorns and leaves—another hiding spot for ticks—can result in a surprise bite like my friend encountered. Though we tend to be covered up more in the colder seasons, ticks can still attach to our clothes and crawl under a pant leg or behind a collar to reach open skin. Hunters should take special care, and of course, it’s important to continue to check our children and pets for ticks throughout the winter months just like we do in other seasons.

Luckily, my friend’s tick tested negative for Lyme and co-infections. But another friend who found a tick on a winter walk in Boston was not so lucky. That’s right—this occurred in a city! That’s because to reiterate, ticks are not just carried by deer, but can live anywhere that birds and mice go. Researchers in Poland recently published a study in the peer-reviewed journal Parasites & Vectors that found “…well established populations of ticks in urban areas.” The study concluded that “awareness of the presence of these disease agents in cities should be raised.”[2] Around the world, tick-borne illness is not just a suburban problem anymore, nor is it just a summer problem. It is a year-round threat.

Even in Canada, ticks are still an issue well into snowy winter. One woman in Halifax reportedly pulled 12 to 15 ticks off her dog after an hour-long walk, while a zoologist at the Nova Scotia Museum receives 150 ticks a week for identification from various medical offices—more than he receives in the middle of summer. Donna Lugar, Nova Scotia’s representative at the Canadian Lyme Disease Foundation, gets a lot of calls from new patients in the winter—even ones who have become sick after being bitten in a Christmas tree farm lot.[3]

This story begs the question, can ticks come inside the house on Christmas trees? Many people have this concern after finding little black bugs crawling out of their trees. There’s been fear that ticks lay eggs in the trees, which then hatch in the warmer temperatures inside the house. Though Tick Encounter Resource Center has debunked this as a myth, saying that the “ticks” people find are actually Cinara aphids, six-legged bugs with antennae. Ticks have eight legs, and no antennae. Cinara aphids are pests particular to Christmas trees grown in the field, and if the grower doesn’t treat the infestation, the bugs make their way into homes.[4]

Aphids don’t pose a health threat, but ticks do. For that reason,  it’s important to look out for them not just in the woods or at Christmas tree farms, but anywhere you spend time outdoors in winter. Stay vigilant for a happy and healthy holiday season!

[1] http://www.bostonglobe.com/news/world/2017/10/30/global-warming-taking-toll-people-health/aX6hrAjmepoRrlfy9wvXOP/story.html

2 Parasites & Vectors 2017 10:573

https://doi.org/10.1186/s13071-017-2391-2

[3] http://www.cbc.ca/news/canada/nova-scotia/winter-lyme-disease-risk-1.4413245

[4] http://www.tickencounter.org/tick_notes/christmas_tree_ticks


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  jennifercrystalwriter@gmail.com

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