Category Archives: Blog

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Here are her answers to questions she has recently received. Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

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

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

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

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

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

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

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

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

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

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

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

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


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

What’s In a Name? When talking about Lyme disease, it matters

by Jennifer Crystal

Before becoming so debilitated by illness that I could not work, I was a high school English teacher. My ninth grade students read Shakespeare’s Romeo and Juliet, and I’ll never forget our discussion of the lines: “What’s in a name? That which we call a rose/ By any other word would smell as sweet” (Act 11, scene ii).

Juliet is suggesting that the name we give someone or something is to an extent meaningless. To test this theory, I had my students write down the name of someone they loved. Then I told them to spit on the paper and tear it up. They were horrified.

“But it’s just a name,” I told them.

“No,” they argued. “It has an association. I can’t spit on someone I love.”

Years later, I think of that conversation when I hear people debate the nomenclature of Lyme disease. The Lyme Wars we so frequently hear about-covered in a five-part special on NBC New York and also in a New Yorker article -focuses on whether chronic Lyme actually exists. The name suggests a persistent, ongoing illness, like chronic obstructive pulmonary disease (COPD) or lupus. Those are recognized diseases whose injury and severity are not called into question, no matter how long the patient has suffered, how long it took them to get diagnosed, or whether or not the patient is undergoing treatment. Conversely, the Centers for Disease Control and Prevention (CDC) doesn’t recognize the term chronic, stating that “post treatment Lyme disease syndrome” (PTLDS) is the more appropriate term. Here the name we give to something actually matters very much.

Chronic Lyme is not the same as PTLDS. Post treatment Lyme disease syndrome assumes that a patient has undergone treatment and still has symptoms. Unfortunately, this is not the case for the vast majority of Lyme sufferers. Some patients do have persistent symptoms after treatment, but even those people cannot be gathered under one umbrella. For there are mitigating factors such as how long the person was sick before diagnosis, how long they were treated, how they responded to treatment, whether the infection crossed the blood-brain barrier, and whether the patient also has co-infections- these factors impact whether a patient will have persistent symptoms or not. No two cases of tick-borne illness are the same, meaning it’s very difficult, if not impossible, to lump those cases together

Chronic Lyme is at least a more appropriate term because it doesn’t define whether a person has undergone treatment or not. Usually, they haven’t. The reason Lyme often (though not always) becomes chronic is because it was misdiagnosed and left untreated in the first place. Under such conditions, the Lyme bacteria spend months or years replicating and circulating around the afflicted person’s body, sometimes crossing into the central nervous system. That’s what happened to me. Lyme coiled itself into my bones, joints, muscles, cells, and brain for eight years before I was accurately diagnosed. Eventually, treatment got me into a manageable state of remission, but because I had been sick for so long, I cannot be cured. Therefore, my Lyme is chronic-meaning recurring and difficult to eradicate.

My case is very different from someone who was only sick for two years, or who doesn’t have co-infections or has responded to initial treatment differently than I did. The same is true for cancer patients. A stage I breast cancer patient has a very different illness, treatment plan and prognosis than a Stage IV glioblastoma patient. They both have cancer, but when naming their illnesses, we don’t just group them together under the “C” word. Lyme disease should also be spoken of in more specific terms.

In her talk “Lexicon of Lyme” at last year’s International Lyme and Associated Diseases Society conference in Boston, Dr. Mualla McManus of the University of Sydney, Karl McManus Institute said, “Lyme disease is a household name-everyone talks about it, but no one defines it in a precise fashion.” I couldn’t agree more. There are now three recognized stages of Lyme disease, but many people don’t know about this breakdown in levels. Stage 3 is called Late Disseminated Lyme Disease. It would behoove us as patients to use this more precise wording instead of “chronic Lyme”-and certainly instead of the generic “PTLDS”-so that people can better understand the progression and prognosis of our illness.

Moreover, it’s important for us not to couch co-infections under the term Lyme disease and right now that’s all too common. These other infections are also transmitted through a tick bite; they are similar but are not the same as Lyme. For instance, it’s possible for a patient to get ehrlichia but not get Lyme disease. In another case, a patient may have Lyme and babesia, while another one might have babesia and Bartonella.

People need to understand that there are many tick-borne diseases out there and that have different symptoms from Lyme and often require different treatment. Though it’s wordy, I try to tell people that I have “chronic tick-borne diseases” rather than “chronic Lyme dis-ease,” because that phrasing is more accurate. In the future, I’ll try to say “chronic late dis-seminated tick-borne illness.” Is that a lot to throw at someone at a cocktail party? Yes. But the person I meet there wouldn’t want me to call him Jack if his name is really James. As my students discovered, there’s a lot in a name, and it’s important that we use the right ones to describe our illnesses with as much precision as we can.


jennifer crystalOpinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com

GLA Point of View on New Lyme Disease Study

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

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

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

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

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

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

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


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

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

CureTalks – Listen Now

Highlights from the International Lyme and Associated Diseases (ILADS), 18th Annual Scientific Conference – Boston

Lyme disease is an illness caused by the bacteria Borrelia burgdorferi, a complex microbe known as a spirochete. Lyme disease is a multi-systemic illness, if left untreated it can become a severely debilitating illness affecting the central nervous system, joints, and multiple organs, including the heart and brain. It presents in multiple-stages from: acute (early stage) to chronic (late stage or persisting) illness.

The CDC estimates over 300,000 people in the United States are diagnosed with Lyme disease each year. It is one of the fastest growing infectious diseases in the U.S. and Western Europe.

The Global Lyme Alliance is pleased to present Highlights from ILADS 18th Annual Scientific Conference, our expert panel of leading physicians will provide their insights and a summary of key data and research presented at this conference.

The patient panel includes Jackie Bailey and Jennifer Crystal. Jackie is a Nurse Practitioner at Apheresis Associates of Northern Virginia (AANV). She has been performing physical exams on donors since 2010. She has extensive experience working as a Family Nurse Practitioner. Jennifer is a writer and educator at Boston. She is working on a memoir about her journey with chronic tick-borne illness.

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

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