Category Archives: Blog

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 consensus 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

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.

In The Lymelight Episode 4: Things I wish I knew about Lyme disease when I was diagnosed

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 fourth episode of In The Lymelight, we sat down to chat about the things Alex wished she had known while going through the diagnostic process of testing for Lyme and things she wished she had known when she was eventually diagnosed with the invisible illness. Sarah and Alex chat about inaccuracy in testing, symptoms, insurance coverage and tips and tricks to help yourself heal.

Some of Alex’s favorite Lyme friendly literature includes How Can I Get Better? By Dr. Horowitz and Real Food Fake Food by Larry Olmsted.

Alex also recommends RachLMansfield, Minimalist Baker and One Part Plant for simple gluten, dairy and (mostly) sugar-free recipes.

A message from Alex and Sarah:

With #GivingTuesday having just passed, fundraising for Global Lyme Alliance is still at the forefront of our minds. 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.

 

How Chronic Lyme Disease Changed My Life

by Skye Cowie

How a professional athlete at the start of her career was sidelined by chronic Lyme disease

People always say that life can change in a blink of an eye, but I never truly understood that quote until it happened to me. One year ago today, December 1, 2016—after six years of searching for a diagnosis—I was diagnosed with chronic Lyme disease. I had been bitten by a black-legged deer tick when I was 12. For those reading this who don’t know me, I’m a 19-year-old professional athlete from North Carolina. I started playing soccer when I was 5 years old and loved every minute of it. Unfortunately, by age 13, I had to give it up due to chronic pain.

The diagnosis was a pivotal turning point for me, since I was lucky enough to discover a new sport called freestyle soccer. This was something I was able to practice on my own time, when I was physically able, without feeling pressure from others. My career in freestyle soccer has since presented me with amazing opportunities and I now have over 70,000 Instagram followers.

I’ve had amazing experiences working with brands like Adidas, Samsung, Canon, Puma, and even former First Lady Michelle Obama.  Due to my social media presence, I came to feel a certain obligation to speak out about my seemingly invisible illness, and to shed some light on what has, in fact, become a global pandemic.

When I was 12 I found a tick on my hand and was assured repeatedly that I was fine because I lacked the typical Lyme disease symptoms, a fever or bulls-eye rash. Gradually, my health deteriorated. I started with debilitating knee and back pain. Later symptoms included migraines, memory fog, chronic fatigue, and dizzy spells. I kept telling my parents that something was wrong with me, and they could see it for themselves. My light went out. My mom was adamant at every medical appointment that I had Lyme disease, but she was consistently ignored by the doctors.

Until I was 18 I seemed to spend all my time visiting every kind of specialist trying to discover the cause of my chronic symptoms. It became an exhausting, not to say hopeless, routine. Starting with my pediatrician, I was given brain and spinal MRI’s, multiple spinal X-rays and ultrasounds. I moved on to an orthopedic surgeon who injected steroids in my my knee. Then there was my primary care doctor who told me I was just a typical tired teenager, and then the acupuncturist, a chiropractor, endocrinologist, optometrist, immunologist, gynecologist, rheumatoid specialist—all with nothing meaningful to report— and, finally, a neurologist who told me that there was nothing I could do. I would just have to live with daily migraines.

I felt worse and worse. My days consisted of school—when my friend would have to carry my book-bag—then coming home and sleeping for hours, waking up to do as much homework as my fogged brain could handle, eating dinner and going back to bed again.

My only relief was in sleep. I had no social life. Worse, perhaps, was that I had no friends who understood what I was going through. It got so bad I decided during my junior year that I would graduate high school early, halfway through my senior year. By that time, I would have enough credit hours to do so. Getting up for school and faking a smile to hide my suffering had become impossible.

My mom started spending every waking moment looking for doctors who would take us seriously. Finally, her persistence paid off. We went to an out-of-network functional medicine doctor who ran full body tests on me. Although it wasn’t the news I wanted to hear, I finally got a diagnosis: chronic Lyme disease. I was also diagnosed with intestinal impermeability and celiac disease, but those ailments will have to wait for another blog post.

The days and weeks after my diagnosis were the hardest. I had never felt so isolated and alone. The lack of empathy from those closest to me was the hardest part. Most doctors don’t think Lyme disease exists, never mind trying to educate my egocentric teenage peers that it does. Last December not one of my friends would sympathize with the news I had just been given. They brushed it off and treated me as if I would be okay again in a few weeks. Nobody believed I was sick. Those closest to me didn’t know about half of the things I went through daily. Social media is a mask; it’s easy to live a beautiful life online. But it doesn’t give visibility to one’s real life behind the scenes. I have never posted a picture or list of all the pills I have to take every day. I have never mentioned losing my best friend over the disease. Nor the days and nights I’ve spent crying out of hopelessness.

Life is never what you think it will be. This truth is hard for all of us to accept, especially if you’re a teenager. Four months after my diagnosis I got accepted into my dream university. My celebration was short-lived, though, when I came to understand that I wouldn’t be healthy enough to attend. When August rolled around I made a compromise. Currently, I’m enrolled in two online classes that I can attend from my bedroom. This is my reality. The past year I have found out not only a lot about myself but a lot about the lives of those around me. Although most of my friends still don’t understand, I stopped letting that bother me. Now I focus on the few friends who check up on me and take time to understand chronic Lyme disease.

Although I am only starting my battle with Lyme, I feel as if I’ve been fighting it my whole life. It’s hard to remember days where I have not felt pain. Not a second goes by when I don’t feel Lyme’s debilitating effects. Some days I’m anchored to my bed with sadness. But on other days I feel more alive than ever. Before my diagnosis, I felt as if I was living my life on the sidelines while everyone else enjoyed the game. I have a long journey ahead, yet I’m thankful for this second chance to get well and play again.

I appreciate every moment I am fortunate enough be alive. I believe that you can get through the worst in life if you’re surrounded by the right people and have hope that things will get better. I refuse to let Lyme disease take control my life. I am going to fight it with everything I have.


Skye Cowie is a 19-year-old professional freestyle soccer player living in North Carolina. Follow her @skycowie on Instagram.

Chronic Lyme Disease Series: Bryce’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

Doctors tested me for MS, ALS, Lupus, Lyme disease and vitamin deficiencies but everything kept showing up normal.

When I was 18 I got very sick with a flu-like illness in the summer that didn’t go away. Months later, doctors found campylobacter (a bacteria that infects the intestines) in my digestive track and diagnosed me with Gerd and IBS. I was put on antibiotics for a few weeks and symptoms subsided. Since then I’ve experienced on and off IBS issues that gradually got worse over the years. I developed a food intolerance to both gluten and dairy. It wasn’t until the early spring of 2016 things got really bad.

I had just finished my latest bodybuilding competition and during my whole 20-week prep, I knew something was off. I contributed it to dieting and training too hard for the show. I thought after the show was done things would go back to normal but they didn’t. I developed bad fatigue and the following summer I got shingles. That’s when things really took a turn for the worse.

I had just finished my latest bodybuilding competition and during my whole 20 week prep I knew something was off.

Bryce at a bodybuilding competition

My face and legs began to tingle and twitch and felt like there were bugs crawling on my shins. I developed balance and cognitive issues. I also had floaters in my field of vision. I gradually became weaker but loved the gym so I still kept it up (to this day) but had to stop competing in bodybuilding. I also developed shooting pains in my legs as well as night terrors and anxiety. Doctors tested me for MS, ALS, Lupus, Lyme disease and vitamin deficiencies but everything kept showing up normal.

It wasn’t until I spoke to a lady in Brandon, Manitoba (Canada) who has Lyme disease and she mentioned the testing can be extremely inaccurate and doctors often misdiagnose patients who have Lyme disease. I ended up seeing a naturopath in Winnipeg, Manitoba (Canada) who thought my story fit Lyme disease. He suggested I send my bloodwork to IGeneX labs in California which is a lab that specializes in testing various Lyme strains and its co-infections. I ended up paying $1800 CAD for the IGeneX test and about four weeks later my result came back positive for Lyme and the co-infection Babesia (an infection caused by a malaria-like parasite that infects red blood cells). I then had to travel to Vancouver, BC (Canada) to see a Lyme-literate doctor who could properly treat me. He also clinically diagnosed me with the co-infection Bartonella (bacteria that live inside cells that can infect humans and a wide range of other animals and causes cat-scratch disease, endocarditis, and several other serious diseases in humans).

Bryce’s Symptom Breakdown:

First onset symptoms: fatigue, digestive issues, shingles, tingling, and twitching.

Recall tick bite/bullseye rash: no; no rash

Diagnosis of Lyme Disease: none, but suspected MS, ALS, vitamin deficiency

Chronic Lyme Disease symptoms: fatigue, eye floaters, balance issues, tingling, twitching, digestive issues, night terrors, depression, weakness, cognitive problems

Lyme Disease & co-infections diagnosed by: blood test through lab in the USA (IGeneX)


The Chronic Lyme Series: Bryce’s Story

Bryce lives in Bandon, Manitoba, Canada. At the time of writing Bryce had been receiving treatment for almost four months, and with a lot of ups and downs, he is optimistic that he has seen some improvement. 

TURN YOUR ANGER INTO ACTION

By Lori Dennis

I’ve been in the Lyme world for several years now. And if there’s one palpable emotion that reverberates throughout this community … it’s anger.

For reasons we all understand, Lyme sufferers and caregivers are not only confused, grief-stricken, and anxious. But we are also angry. Outraged might be an even more appropriate description. I hear it everywhere I turn.

The reasons for being angry are inexhaustible. As a mother whose son has been sick for a long time now with Lyme, as an author, speaker, and activist in the Lyme world, I understand and live with this anger every single day.

At the same time, I also know, without question, that anger can be personally destructive unless it is channeled into something actionable and substantive.

To deal with my own personal anger, I set out to write a book about our experience. It was my way of channeling my feelings of being overwhelmed. It was my way of helping to make sense of all that I learned, and providing a platform for others to tell their stories and share their perspectives. In short, writing was the best way I knew not to drown in my own indignation.

To best manage the overwhelming emotions we experience as both Lyme sufferers and caregivers, the healthiest thing we can do is channel our anger into action.

In the field of psychology, we call this sublimation – turning socially unacceptable impulses and feelings into ones that are more positive.

I don’t believe in repressing our anger because it absolutely needs to be felt. It is really to our own personal benefit to transmute it from a chronic feeling of negativity to positive and concrete endeavors. If we don’t, we can be subject to detrimental physical and psychological effects. Without a constructive course of action, anger can heighten our anxiety, deepen our depression, increase our blood pressure, and cause a myriad of other symptoms.

So, rather than letting anger eat us alive, we need to let it fuel our positive actions and provide us with the motivation, power, and drive necessary to get what we want and so clearly deserve.

The best strategy is to direct our energy towards a specific task––any task that can help you feel like you’re part of a solution. I recognize that it’s hard to do much when you’re feeling unwell. But remember, your actions don’t have to be heroic or superhuman. Any contribution you make will help you to feel connected to this mission for medical justice.

You can call or write to your local politicians. Bring an evidence-based Lyme article (or two) to your next medical appointment for your doctor to read. Join a Facebook support group so that you have an outlet to vent your anger with those who ‘get it’. Read blog posts on the subject to feel inspired and take comfort in knowing that advances are being made in the Lyme community. Start your own blog to share your experiences, tips, and learning with others. Follow the work of Lyme activists that you respect and trust. Channel your emotions into a creative endeavor––art, music, fiction, poetry––wherever your talents lie.

If you happen to have even more energy, volunteer at or even create a local event––an information seminar, a panel discussion, a town hall meeting––to educate the general public about Lyme disease, so that they won’t find themselves caught as unaware as you might have been. Creating the experience of community is the most healing action we can undertake.

Above all, let your voice be heard. Remember, our anger turned into concrete action will ultimately effect measurable change. Make an effort to connect with like-minded people who understand what you’re experiencing. This social connection will ameliorate your feelings of isolation, anger and despair.

There is always plenty of work to do in the Lyme world. Plenty of people to educate about Lyme awareness and tick avoidance. There are plenty of things to do that can propel us toward a new reality where all doctors are ready, willing and able to support us in our mission.

I hope that day comes soon. In the meantime, I will get back to the work at hand and channel my anger into continued advocacy for my son … and for all those who are suffering with this illness.


lori dennisOpinions expressed by contributors are their own.

Lori Dennis, MA, RP is a Registered Psychotherapist in private practice and the author of LYME MADNESS, named #1 NEW RELEASE in Immune System Health on Amazon. LYME MADNESS is available on Amazon. For more information, go to lymemadness.ca and loridennisonline.com. 

Join Global Lyme Alliance in taking action against Lyme disease. Click here to #BePartOfTheCure

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