Category Archives: Blog

New test for Babesia approved by the FDA

by Mayla Hsu, Ph.D.
Director, Research and Science
Global Lyme Alliance

Screening the blood supply for infectious microbes should be an obvious and ongoing health sector priority, especially for those microbes known to cause disease. Although donor blood and organs are tested for viruses like HIV and hepatitis, screening for other pathogens is limited.

One such pathogen is the parasite called Babesia microti, which causes an infection known as babesiosis. Transmitted by the bite of black-legged ticks, babesiosis either causes no symptoms in healthy people, or mild self-limiting symptoms. However, in the very young or old, or in the immunosuppressed, babesiosis can cause a malaria-like disease that can be life-threatening.

Because B. microti replicates in red blood cells, an infected, non-symptomatic donor can harbor it in blood, tissue or organs. Worryingly, it’s not screened for, and until now, there has been no FDA-approved test to detect it.  Last week, however, the FDA approved two new tests from Oxford Immunotec to detect Babesia. One test looks for antibodies against the parasite in blood plasma, indicating evidence of infection. In whole blood, a second test uses sensitive nucleic acid detection to directly identify the presence of the parasite. These tests will be performed in-house at Oxford Immunotec facilities in Norwood, MA. They are not intended to be used for diagnosis of babesiosis in patients.

There is evidence that screening blood is effective in preventing transfusion-acquired babesiosis. In 2016, the American Red Cross published a study of babesia screening in states with a high incidence of tick-transmitted diseases. They found 14 reported cases of transfusion-transmitted babesiosis per 253,031 unscreened donations. In contrast, zero cases were reported from 75,331 screened donations. Moreover, a recent case report linked transfusion-transmitted babesiosis in three premature infants who received blood from one donor. Thankfully, all three infants were treated and have recovered.

The FDA is planning to issue draft guidelines with recommendations to reduce babesiosis acquired by transfusions later this year. It is expected that testing the blood supply as well as donor tissues and organs will become an important part of these guidelines, which will greatly help to protect the public. We also hope that this increased awareness of babesiosis will lead to greater vigilance among healthcare authorities as well as the general populace. Such increased awareness will be especially important in geographic areas where tick-transmitted diseases are endemic and are increasing.


Mayla Hsu, Ph.D.
Director, Research and Science
Global Lyme Alliance

Mayla manages GLA’s research grant program, working with the Scientific Advisory Board and creating viable partnerships to help advance the development of a reliable diagnostic test, effective treatments and ultimately a cure for Lyme.

Could a pathogen be the cause of Alzheimer’s disease?

By Philip Perry
Originally published on bigthink.com

For the last 40 years, a minority of researchers have considered the notion that a pathogen might be behind Alzheimer’s disease. In 2011, Judith Miklossy (former GLA Scientific Advisory Board member) and fellow researchers at the International Alzheimer’s Research Center, found evidence of spirochetes—the bacteria that caused Lyme, in the brains of former Alzheimer’s patients.

Today, about 5.5 million Americans live with the neurodegenerative disorder. By 2050, that number could be as high as 16 million. Besides the tremendous blow it delivers to the patient and their family, it also puts a terrible strain on the healthcare system.

Today, dementia sucks down $162 billion per year. Thanks to the “silver tsunami,” or the tremendous baby boomer generation climbing up into old age, dementia could cost the nation as much as $1.1 trillion by midcentury. As a result, Alzheimer’s research has increased dramatically in recent years. So what have we found so far?

We know that sticky globules called amyloid-beta plaques buildup in the brain and as they do, they begin to inhibit proper functioning. The more plaque accumulates, the more faculties a person loses, including chunks of memory, and over time the ability to make plans, drive, cook, bathe, dress one’s self, and eventually, even speak. These globules are aided by tangles of a protein called tau, which block nutrients from passing through neurons’ cell walls, essentially starving them. While tau tangles play an important role, the buildup of amyloid beta plaque is considered the main driver of the disease.

For the last 40 years, a minority of researchers have considered the notion that a pathogen might be behind Alzheimer’s disease. Since the ‘90s, only a few labs across the US have been researching different pathogens which might be associated with the disorder. Note that few microbes can cross the blood-brain barrier—a special protective border which blocks harmful pathogens from entering the brain.

In 2011, Judith Miklossy and fellow researchers at the International Alzheimer’s Research Center, found evidence of spirochetes—a bacteria which can cross the blood-brain barrier, in the brains of former Alzheimer’s patients. This is a type of bacteria responsible for syphilis and Lyme disease, and is also known to cause all kinds of neurological issues if such diseases are left untreated, long-term.

In Miklossy’s work, Borrelia burgdorferi—the species of spirochete that causes Lyme, was identified in 451 out of the 495 Alzheimer’s-riddled brains they examined. Yet, her work at the time was derived by other researchers and until recently, she had difficulty securing funding.

Now however, with many promising new drugs proven ineffective, the field is looking for a new direction to explore, and this may be it. Dermatology professor Herbert Allen of Drexel University, suggested that if Alzheimer’s is indeed an infection, then a biofilm—a bacterial colony that huddles together in order to repel the immune system, could be considered evidence for the presence of an Alzheimer’s-causing bacteria.

These have been found in brains affected by Alzheimer’s. Amyloid plaque buildup therefore could be evidence of an immune response. The person might be infected with a certain kind of spirochete years or even decades earlier, which lies dormant, until the time it deems necessary to become active. This happens with syphilis and sometimes with Lyme.

One interesting finding has been that neurosurgeons performing procedures on those with the neurodegenerative condition, are actually more likely to fall victim to the Alzheimer’s themselves. A 2010 society of neurosurgeons report, found that their members were six times more likely to die from Alzheimer’s than any other condition. Yet currently, the medical establishment considers Alzheimer’s to be non-communicable.

These days, two Harvard researchers have been looking into whether Alzheimer’s might originate with a colony of bacteria in the brain. To find out, they’ve had to launch a larger initiative. Assistant Professor of Neurology Robert Moir, teamed up with Professor of Child Neurology and Mental Retardation Rudolph Tanzi, both of Harvard Medical School and Massachusetts General Hospital.

To read the rest of this blog post, click here. Check back next week for GLA’s point of view on this theory.

Watch this: A video about what may be the culprit behind Alzheimer’s

Are Mold and Mycotoxins Compromising Your Recovery?

By Jennifer Crystal

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

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

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

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

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

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

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

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

 


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Do you have a question for Jennifer? Email her at  jennifercrystalwriter@gmail.com

GLA Point of View on “First Multiplex Test for Tick-Borne Disease”

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

Advances in Serodiagnostic Testing for Lyme Disease Are at Hand

…the TBD-Serochip represents an important advance and significant improvement over existing tests for tick-borne diseases (TBDs), which have poor diagnostic accuracy and cannot test for more than a single infection at a time.

The testing arsenal available to front-line physicians responsible for accurately diagnosing tick-borne diseases has recently been bolstered by a new blood test called the Tick-Borne Disease Serochip (TBD-Serochip).  Described in the journal Nature Scientific Reports, the TBD-Serochip represents an important advance and significant improvement over existing tests for tick-borne diseases (TBDs), which have poor diagnostic accuracy and cannot test for more than a single infection at a time.  Currently, the two-tier diagnostic test for Lyme disease identifies fewer than 40 percent of patients with early Lyme disease and results in false positives 28 percent of the time.

The TBD-Serochip research team was led by co-lead authors Rafal Tokarz, Ph.D. and Nischay Mishra, Ph.D., who are associate research scientists at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health.  As a true cross-disciplinary and multi-institutional effort, the team also included Brian Fallon, M.D. from the Global Lyme Alliance-funded Columbia University Lyme and Tick-Borne Diseases Research Center, who contributed to the study design, as well as researchers from the Centers for Disease Control and Prevention, the National Institute of Allergy and Infectious Diseases, Roche Sequencing Solutions, Farmingdale State College, and State University of New York-Stony Brook.

According to Dr. Tokarz, “The number of Americans diagnosed with tick-borne disease is steadily increasing as tick populations have expanded geographically.”  “Each year, approximately 3 million clinical specimens are tested for TBDs in the U.S.  Nonetheless, the true incidence of TBDs is likely greatly underestimated, as patients with presumed TBDs are rarely tested for the full range of tick-borne pathogens, and only a fraction of positive cases are properly reported,” added Dr. Mishra.  The power and promise of the TBD-Serochip derives from its ability to simultaneously test 170,000 individual protein fragments for the existence of pathogens connected to eight different TBDs including Anaplasma phagocytophilum (agent of human granulocytic anaplasmosis), Babesia microti (babesiosis), Borrelia burgdorferi (Lyme disease), Borrelia miyamotoi, Ehrlichia chaffeensis (human monocytic ehrlichiosis), Rickettsia rickettsii (Rocky Mountain spotted fever), Heartland virus and Powassan virus.

As such, a single sample via TBD-Serochip can determine whether an individual is infected with more than one tick-borne pathogen.  This diagnostic capability is essential as individual ticks frequently harbor more than one pathogen and appropriate treatment of patients with multiple TBDs would potentially require the use of different antibiotics to effectively kill them.  More importantly is the new discovery’s capacity for scalability, for as new tick-borne infectious agents are discovered, TBD-Serochip can be modified to target them, a process the researchers say can be done in less than four weeks.

Despite the significance of the TBD-Serochip being added to a physician’s diagnostics arsenal, as pointed out in another GLA POV titled “Advances in Serodiagnostic Testing for Lyme Disease Are at Hand” improvements in serologic testing methods or protocols will not address their inability to differentiate active infection from past exposure.  Thus, ideally, use of tests like TBD-Serochip will be coupled with diagnostic methods to directly detect the presence of B. burgdorferi and other tick-borne pathogens in patient’s samples, thereby discriminating between active rather than past infection in patients.  GLA is actively supporting research efforts to develop such direct detection methods.

 


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.

Coming to Terms With the Truth About My Health

by Emily Croot
#MyLymeLife

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

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

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

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

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

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

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

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

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


 

Opinions expressed by contributors are their own.

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

Feed Your Body to Fight Lyme

by Kenzie Vath

It has been a long nine years since I was diagnosed with Lyme disease. I have been suffering from chronic Lyme for twice as long or over 18 years. After my diagnosis, I started researching right away how I would be able to manage my illness. Many allopathic medical treatments flooded the internet and seemed to be the only option for Lyme treatment at the time. I noticed that none of the treatments were as effective though if I did not keep up with my daily self-care. This consisted of healthy nutrition, physical activity, and a personalized self-care regimen. Each played an important role in the outcome of my overall health.

I dove straight into researching what the proper nutritional requirements were for Lyme patients. In 2007 though, not much information was available to help guide me to the right nutritional choices. So I decided to go back to school and study holistic medicine. My education reviewed everything from Traditional Chinese Medicine (TCM) to Ayurvedic healing. Sharing this valuable information with those I met sparked my compassion to help others who were suffering from Lyme disease and its co-infections.

Thus Holistic Umbrella was founded. Holistic Umbrella is a wellness-based lifestyle company based in Southern California. Our mission is to provide a holistic approach to balance our client’s health and wellness; this as a means of creating joy in their personal, family and friends lives, and so that they can positively impact their community. My personal goal for the upcoming year is to offer a variety of wellness-based events to local communities. I would love for you to join me in 2018 to make a positive impact on your health.

Nutritional support for Lyme:

The most important thing to remember when battling an illness is to feed the body what it needs to heal. Our bodies house our minds, hearts, and souls, which we must first seek to be grateful for since a certain amount of self-appreciation is essential. Feeding the body quality nutrients is a positive way to demonstrate that we value ourselves and our health.

The ‘red flag’ foods that feed inflammation and Lyme are gluten, dairy, and sugar. Many of us have experimented with various gluten-free, dairy-free or other diets. Some individuals get positive results, while others continue to struggle with digestive issues. Finding the right dietary matches for your body is all about experimenting with all different kinds of foods and being aware of how those foods make you feel. No single diet is right for everyone. Everyone’s body is unique and requires a custom variety of nutrients to maintain optimal health. If you are not sure where to start, I would suggest beginning a food journal. This will allow you to track and become more aware of the foods you are eating and your body’s reaction to them.

What follows is a basic nutritional overview:

There are seven main classifications of human nutrition; fats, protein, carbohydrates, fiber, minerals, vitamins, and water. Each essential for our bodies to function at a healthy state; to prevent or fight off disease. Those with Lyme should be aware of the nutrients they supply to their bodies. Our bodies have a natural ability to heal itself if given the right care. Nutrition is an essential part of that care.

Water is by far the most important nutrient for the body. It is essential to every cell in the body. The human adult body is made up of roughly 60% water. Children tend to be 70 to 75% water. As we age our bodies become more dehydrated. When the human body is battling an illness it is especially important to consume adequate amounts of clean purified water. The rule of thumb is to consume: half your weight in ounces. (Example: if your weight is 100 pounds, your water consumption would be 50 ounces.) Water with added minerals or fresh spring water is an especially good choice since minerals will assist the body in staying hydrated. TCM recommends consuming room temperature water. Many ask why? The answer is that water at room temperature absorbs more quickly providing faster hydration to the body. Moreover, water assists in detoxification. Lyme patients naturally accumulate an excessive amount of bodily toxins. Water is the easiest and most essential way to help purge those toxins.

Vitamins and minerals are present in all foods. Many people feel they need to take a handful of vitamins to feel better or get well. This has not been my experience. Consuming too many supplements can over-burden the body. The key to getting adequate amounts of vitamins and minerals is to eat a variety of fresh whole foods. An easy tip is Eat the Rainbow! Each person requires specific amounts of additional supplementation. If you’re concerned that you are not getting adequate nutrients daily, ask your care health care professional (preferably a nutritionist of one with a knowledge of integrative medicine) for specific recommendations.

Fiber should be consumed daily to maintain a healthy digestive system. The recommended daily intake of fiber from food is 25 to 30 grams. Fiber is useful for regulating blood sugar and the bowels. Again, assisting the body with detoxification by eliminating wastes. If you are not eliminating with regularity you need more fiber in your diet.

Fats, proteins, and carbohydrates are definitely not all created equal. Fats can be anything from avocado oil (healthy) to soybean oil (not the best choice) since each oil has its own profile of fatty acids. Essential fatty acids are directly related to managing inflammation throughout the body. In the past, low-fat diets and non-fat products were encouraged as healthy eating options. More recent studies have revealed ‘healthy fats’ play an essential role in hormone production and brain health. Those who suffer with Lyme should be especially conscious about getting adequate amounts of healthy fat in their diets. Virgin Coconut oil is a great choice for a healthy fat. People have even claimed it’s the best fat on the planet since it has shown to increase healthy cholesterol HDL, work as a natural antibiotic, and suppress inflammation. A great addition to anyone’s diet. Here are a few of my favorite “go to” healthy fat options.

  • Virgin Coconut oil
  • Avocados
  • Ground Flaxseed
  • Walnuts
  • Extra Virgin Olive Oil
  • 70% or higher Dark Chocolate

Proteins come in many shapes and sizes.

This may seem obvious, but meat is not the only source of protein. Great vegetarian options are also available such as tempeh and lentils, to mention a few. This is an area you will have to personally explore. If your body can tolerate animal protein then I would say eat it, but remember to buy organic and grass-fed meat whenever possible. Fish is also a great source of protein and healthy fats. Avoid big fish like tuna and swordfish for these contain higher levels of mercury than others and so are not the best option. I would recommend wild-caught Alaskan salmon and filet of sole. You can find these fish alternatives online or at a good local grocery store which emphasizes healthy eating.

Vegetables should be your number one food choice. It is most important to eat a variety of vegetables. Here’s an easy tip. It is best if you lightly blanch or steam your veggies. When slightly cooked vegetables are much easier to digest and absorb. Here are some of my favorites.

  • broccoli
  • carrots
  • cucumber
  • kale
  • spaghetti squash
  • spinach
  • garlic
  • onions

Fruit should be consumed in moderation, since many options are high in sugar.The best fruits to help fight inflammation are those low in sugar such as, dark berries (raspberries, blueberries, blackberries and strawberries), limes and lemons. Apples are also a great choice, although higher in sugar they make up for it in high fiber content. Remember there’s something to the old adage “an apple a day keeps the doctor away.”

I hope this information has been helpful for those dealing with Lyme and will get you started on your journey to healthy eating and healing.


Opinions expressed by contributors are their own.

Kenzie Vath is the founder of Holistic Umbrella in Orange County, CA. Holistic Umbrella is a wellness-based lifestyle and coaching company whose mission is to provide a holistic approach to balance client’s health and wellness. Kenzie’s goal for the upcoming year is to offer a variety of wellness-based events to local communities. Do you have a question for Kenzie? Email her at  kenzie@holisticumbrella.com.

Learning to Love Lyme/ A lesson in self-understanding

By Jennifer Crystal

The recent celebration of Valentine’s day got me thinking about past posts I’ve written about the holiday. I’ve written about various matters of the heart: about Lyme carditis and about Valentine’s Day as a celebration of self-love. Whether you have Lyme or not, it’s important for everyone to literally and metaphorically care for their hearts, and for themselves. But what about learning to love an illness that has stripped you of so much? That’s harder but, as I’ve learned, equally important.

It’s hard to love an illness that knocked me off my skis and circumscribed my life for years. An illness that left me unable to work or care for myself. An illness that beat me down, let me get up for a minute, and then beat me down even harder with exhaustion and migraines and fevers and joint aches. What’s to love about such a disease? I spent a long time hating it.

The problem was that by hating my illness, I was hating a part of myself. For many years I just wanted the illness to leave me, so I could wipe my hands of it and move on with my life. After the first year of intense treatment, I thought I’d reached that point. I left my sick bed, went back to work, and moved to a place where I could get back on my skis.

But I never did, at least not that season. Instead, I relapsed back to ground zero and had to start the whole maddening convalescence process over again. At that point, I couldn’t have hated tick-borne illnesses more. I couldn’t have hated ticks more.

During that low period, a friend sent me an email that said, “If I ever find the tick that did this to you, I’m going to wring its little neck!”

And that’s when I realized something. It was the tick that did this to me, not the Lyme. Yes, the diseases of Lyme, as well as Ehrlichia, and babesia were making me feel awful, but they hadn’t spontaneously arrived in my body; they’d been transmitted by a bug smaller than a poppy seed. If there was anyone to hate in this situation, it was that bug (or bugs, as tests showed I may have had more than one tick bite). The ticks were long gone, but the diseases were a part of me; if I hated them, then that meant I hated a part of myself.

And so during relapse, when my illnesses were making me feel worse than ever before, I started to love them. It wasn’t easy. But as I’ve written about before, it was that relapse that made me realize what it really means to have a chronic illness. I had to accept that I was never going to be able to wash my hands of Lyme and walk away from it. I was never going to get back to my old, Lyme-free life. The tick-borne diseases were coming with me, and if I wanted to truly move forward, I would have to willingly or not bring them along.

Luckily, I was seeing a wonderful therapist who helped me not only to love my illnesses but to love myself. This didn’t just mean loving parts of myself that I liked, such as my sense of humor or my ability to connect with people. I also had to stop hating on the parts of myself I didn’t like, such as my insecurities, my tendency to over-analyze, or my perfectionism. I had to stop judging my body every time I had a setback.

Tick-borne diseases weren’t my fault. The relapse wasn’t my fault. And the more “negative” aspects of my personality-there wasn’t fault in those, either; they were just part of who I am.

Recognizing and working through those harder parts of myself helped me to become a better person. Do I still overanalyze? Sure. Am I still hard on myself? Absolutely. But I’m more self-aware, and I’m gentler on myself when I see I am falling into old patterns. Lyme gave me the opportunity to learn these lessons, and I love it for that.


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

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

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