Tag Archives: babesia

deer tick on grass

Have You Heard of the Tick-Borne Disease Babesiosis?

Lyme disease isn’t the only illness you can get from a tick bite

Babesiosis, a tick-borne infection caused by the parasite Babesia (most commonly, Babesia microti, though there are other species like Babesia duncani and Babesia divergens), is a malaria-like infection of the red blood cells. A 2019 report by the American Academy of Pediatrics states, “Although cases of tickborne babesiosis have been diagnosed in the U.S. since 1966, this disease only became nationally notifiable in 2011. A report of the first five years of babesiosis surveillance from the Centers for Disease Control and Prevention (CDC) shows an alarming increase in incidence.”[i]In his book Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, Richard I. Horowitz, M.D. speaks to this alarming prevalence: “Other studies are now showing evidence of a worldwide epidemic of babesiosis: It is now spreading to parts of the United States, Europe, and Asia…the scientific literature has shown that the number of positively diagnosed cases of babesiosis in New York state alone has increased twenty times.”[ii]

While increased Lyme literacy has improved awareness of babesiosis, many people still look at me like I have three heads when I say I have this infection. The name is indeed strange and difficult to pronounce; one of my graduate school professors said, “Can we just call it babelicious? That’s easier.” Whether you refer to it as babesiosis, Babesia, babelicious, or, as my friends have adopted, babs, it’s important that you understand what this illness is, how it is transmitted, what the symptoms are (and what they actually feel like), and what treatment options are available.

Babesia microti as seen in infected red blood cells via microscope

The tiny parasite Babesia is most commonly transmitted by a tick bite—meaning you can get Lyme and babesiosis, as well as other co-infections, all from the same tick. However, you do not have to have Lyme disease to get Babesiosis. Babesia can also be transmitted via blood transfusion or from mother to fetus. It depletes the red blood cells of oxygen, causing patients to experience air hunger, lightheadedness, weakness, shortness of breath, and post-exertional fatigue akin to what marathon runners describe as “hitting a wall”. Other common symptoms include high fever, night-sweats, headaches, chills, and hypoglycemia. Dr. Horowitz writes that babesiosis can also cause “a hemolytic anemia (due to red blood cells breaking down), jaundice, thrombocytopenia (low platelet count), congestive heart failure, and renal failure.”ii

What does it actually feel like to have babesiosis? While every case is different and not all patients experience every symptom, I can share my own 20+ year battle with this infection. After finding a splotchy red rash on my arm in the summer of 1997, the first symptom I experienced was hypoglycemia. After a busy morning teaching water-skiing, swimming, and canoeing at the summer camp where I worked, I collapsed in the dining hall from what I thought was dehydration but was actually low blood sugar. Beyond testing for diabetes, no one thought to look into the cause of my sudden hypoglycemia or to test for tick-borne infections. Instead, I continued to suffer low blood sugar reactions and sudden lightheadedness for years, and learned to always carry a snack with me.

As the tick-borne infections Lyme, babesiosis, and ehrlichiosis ran through my body unchecked over the next eight years, I developed smashing migraines that left me nauseous and crying on the bathroom floor. I now know that my brain was not getting properly oxygenated, causing my extreme pain. I lived in Colorado at the time, so doctors told me I had altitude sickness.

Babesiosis can exacerbate Lyme and other infections; not knowing I had any of them, they all were getting worse, the symptoms overlapping and manifesting more frequently. Flu-like symptoms, coupled with intense bouts of fatigue, came on-and-off for years. Despite being a gym rat and a life-long skier, I could no longer keep up with my friends on the slopes, experiencing low blood sugar, dehydration, and fatigue that would sometimes send me to bed for a day or two afterwards. By the end of my second year in Colorado, I’d developed asthma and needed to use an inhaler.

In 2003, I got mononucleosis that slipped into chronic Epstein-Barr virus—I couldn’t fight it because of the underlying tick-borne diseases—and in 2005 those diseases were finally diagnosed. By that point I was experiencing fevers that could have been associated with any of those illnesses, and occasional nightsweats.

Once I started treatment for babesiosis (along with antibiotics for Lyme and ehrlichiosis), those nightsweats increased, but that was a good sign. It was a form of Jarisch-Herxheimer reaction; my body was sweating out the dead parasites. I often woke in a puddle, my pajamas fully soaked, and sometimes had to change sheets twice a night. At my worst point, I couldn’t ride thirty seconds on a stationary bike without “hitting a wall”.

While Lyme Literate Medical Doctors (LLMDs) have varying opinions about the treatment and prognosis of babesiosis infections, the general consensus I heard at the International Lyme and Associated Diseases Society (ILADS) conference in 2019 was that there is no cure. Some doctors are having great luck, with patients reporting complete eradication of symptoms for both babesiosis and Lyme disease, with the antimicrobial drug Disulfiram (commonly known as Antabuse); however, more research is needed, and the drug has serious side effects. More commonly, doctors use anti-malarial drugs such as Mepron, Malarone, or Coartem to treat babesiosis, often pulsing these treatments over weeks or even months as the patient’s Babesia load decreases. Still others supplement these medications with homeopathic remedies such as artemisinin or cryptolepsis.

This is not a complete list of babesiosis treatments; Dr. Horowitz talks about others in his book, and your LLMD may have other ideas. I have been on different anti-malarial medications, paced at different intervals, and on different homeopathic drops, throughout my journey. Unfortunately, it doesn’t help for me to share my protocol, because it is ever-changing, and because no two cases of tick-borne illness are alike. Here’s what I can tell you for sure: babesiosis symptoms can get better. If you are being treated for Lyme disease and haven’t been tested for babesiosis or other co-infections, you may only be fighting half the battle. Whether you have a known or suspected case of Lyme, it’s critical that you talk to your doctor about other tick-borne diseases, too.

[i] http://dx.doi.org/10.15585/mmwr.ss6806a1.

[ii] Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease. Horowitz, Richard I., MD. New York: St. Martin’s Press, 2013 (135, 136).

Related Posts:
Differentiating Between Babesia and COVID-19 Air Hunger
New test for Babesia approved by the FDA
What is Air Hunger, Anyway?
Tainted Transfusions: Why Screening Blood is More Important Than Ever

jennifer crystal_2

Opinions expressed by contributors are their own.

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

Differentiating Between Babesia and COVID-19 Air Hunger

by Jennifer Crystal

Air hunger is a symptom of both COVID-19 and the tick-borne illness babesia. Let me tell you about my own experience with both.

During my April 2020 webinar on Lyme and COVID-19 with Daniel Cameron, M.D., one of the questions asked was whether COVID-19 worsened my babesia symptoms, including air hunger. The short answer is no. Though both illnesses affect oxygenation—COVID-19 is a respiratory illness, and babesia is a parasite that depletes oxygen from red blood cells—the air hunger caused by each is actually quite different.

Let me explain by telling you about my own experience with both.

Ill start with babesia, since Ive been wrestling that parasite since 1997—though I wasnt diagnosed with it until 2005, at which time I started treatment. You can get Lyme and babesia, as well as other co-infections, from one tick bite, or you might get them from multiple ticks. It’s very likely that I got Lyme and babesia from one bite, since I developed symptoms of both illnesses at the same time. Symptoms of babesia can include high fever, fatigue (especially post-exertional fatigue, or the feeling of hitting a wall” that marathon runners experience), low blood sugar, nausea, headaches, and air hunger.

That last symptom has been the most prevalent for me. When you hear the term air hunger, you might think of gasping for breath. But babesia air hunger doesnt cause me to gasp from the lungs. Instead, my limbs and head seem to gasp; that’s because they are not getting properly oxygenated. In my What Is Air Hunger, Anyway?” post, I explained, Often my arms and legs would feel jumpy like I was having a panic attack. This is because they werent getting enough oxygen; the jumpiness was their way of grumbling” like a stomach does when it needs food. My limbs felt, how can I put this? They felt empty, the opposite of the way they used to feel when they were pumped full of healthy oxygenated blood during exercise.” This air hunger caused fatigue—Id feel the jumpiness just walking up a flight of stairs—as well as migraine headaches and blood sugar crashes. Anti-malarial medication helped quell but not eradicate the infection. I still sometimes get these symptoms, generally every six months or so, and then I know its time to do a short course of medication.

When I first got diagnosed with COVID-19, I worried that my babesia symptoms would immediately flare. But they did not. The air hunger I felt with COVID-19 was much more literal: my lungs gasped for air. I was short of breath, especially during the first few weeks of infection. Talking or moving around too much—just doing laundry or dishes—would leave me winded, wheezing, and coughing. Even when I was just sitting on the couch, my chest would sometimes get tight, and I would feel a soreness like a bruise in both the front and back of my lungs. Luckily, I never needed a ventilator. My pulse oxygen levels remained at a safe level (97-99) throughout my convalescence, though my peak flow (a measure of how well the lungs can expel air) was sometimes low.  

An inhaler helped me manage my symptoms at home, but it has taken several months for them to resolve. The cough has decreased and shortness of breath has improved, but four months after getting sick, two months after my last fever, and one month since getting a positive COVID-19 antibody test, I still have some residual lung inflammation. I rarely cough now and can talk and exercise for longer stints. When at first I couldnt even stand or walk a few feet without feeling tired, my energy is now just about back to my pre-COVID-19 baseline.

However, the shortness of breath and cough still flare if I push myself too hard. For example, last week I took a half-mile walk, including a steep incline, to a dock on the Charles River. I took a few breaks along the way and felt good when I arrived. I sat and rested on the dock for about half an hour, feeling fine. But partway through the half-mile walk home, my legs suddenly felt very heavy. My chest felt tight. I had run out of steam. By the time I got home, I was totally worn out. The next day, my shortness of breath was back, and I coughed for the first time in days. I had to increase the use of my inhaler.  

The walk also riled up some of my babesia symptoms: my blood sugar crashed, and I experienced air hunger for several days. This brings us back to the question of whether or not having COVID-19 causes my babesia to flare? The short answer was no, and I believe that is the long answer, too. That is to say, my COVID-19 symptoms made that long walk difficult, and that may have sparked a reaction from the babesia in my body, but I know my body well enough to say that the babesia flareup had already been brewing. 

If COVID-19 were going to affect my babesia, it would have done it a while ago—say, when I was acutely ill, or when I first got back to kayaking. I didnt have any babesia symptoms during those times. In the last few weeks, though, I have experienced mild night sweats and lightheadedness. These symptoms simply increased after my long walk. Whereas I usually do my babesia maintenance protocol every six months, Ive pushed it off because of COVID-19. Now, eight months since I last did a round of that medication, my body is telling me were overdue for a tune-up.

So, despite the overlap in timing, it still seems that in my particular case my COVID-19 symptoms and my babesia symptoms are independent of each other. The air hunger I experienced with each is distinct. I hope that my experience will help reassure other babesia patients who are concerned about what might happen if they get COVID-19.

Related posts:
What Is Air Hunger, Anyway?
Lyme and COVID-19 Panel: Follow-up Q and A

jennifer crystal_2

Opinions expressed by contributors are their own.

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

Woman looks pensive for new blog post, Avoiding reminders until we're ready

Avoiding Reminders Until You’re Ready

by Jennifer Crystal

When I was very sick with Lyme disease and two of its co-infections—specifically, babesia and ehrlichia—friends invited me to a Warren Miller ski movie. Every season, the renowned filmmaker put out a new documentary about pros skiing in extreme conditions. The release of the film signaled the start of ski season, and I loved those opening nights when I was healthy and living a pre-Lyme life in Colorado.

I moved back to my childhood bed in Connecticut when I got sick. At the time my friends invited me to the movie, I had a PICC line in my arm, so skiing was out of the question. I was no longer bedridden, but I still was very low energy, and wrestled with brain fog, sleep disturbances, and occasional migraines. I could go on short outings in town, sure, but spent a lot of time in bed.

Going to a movie was a big push for me. In general I avoided them, even at home, because the flashing images on the screen agitated my brain. I had trouble concentrating. Movies in a theater were especially challenging because the images were so much larger and the sounds downright thunderous compared to those on TV, causing sensory overload.

But my friends really wanted to involve me in my favorite activity in some way. I was touched by their good intentions, and excited by the prospect of going out for a couple of hours with people my own age. So I went.

That was a terrible mistake.

Even though the only action in a Warren Miller movie is skiing, the loud music and intense movement made me feel like I was watching a 3-D IMAX on fast forward. My head felt full. My legs twitched, not just from neurological overstimulation, but from the desire to float through fresh powder like the skiers on the screen. I wanted to carve their turns, breathe the fresh air, and feel the adrenaline rush of slinking down a mountain with bright sun kissing my face.

I looked away, suddenly painfully aware of my hard seat in the dark theater. I blinked hard so my friends wouldn’t see my eyes brimming with tears. They meant well by bringing me to the film, but the outing was too much for me; I was overwhelmed physically, neurologically, and emotionally. I came home that night feeling sad and tired, wondering if I would ever ski again.

Well, that experience taught me that when we are struggling with serious illness, it’s okay to avoid reminders of what we’re missing until we’re ready to either seriously re-engage with the activity or have fully accepted—that is, become resigned to—accepting what we are no longer able to do.

The key word is until. Denying skiing entirely would not have been healthy for me either. Avoiding it forever would have meant grieving the loss of a favorite activity, or getting frustrated with waiting until I was well enough to get back to it.

It would have been far better for me to skip the film that year until I was well and fully ready to re-immerse myself in the skiing life. To wait until my brain was able to handle a movie, until my body was well enough to start physical therapy, until I had some strength and hope.

While we’re waiting for until, it’s okay to focus on other, quieter activities. If you love football but can’t watch a game right now, how about skimming a light magazine instead? If you’re usually out biking this time of year, how about taking up a totally different indoor activity, like scrapbooking? I used to think that getting involved with something new and different meant I was giving up on my former life. But I can see now that I wasn’t giving up on my old hobbies; I was protecting them. I was distracting myself until I was healthy enough to do otherwise.

I did eventually get back on my skis. It took many years of rest and physical therapy, and I had to start on the bunny hill even though I’d previously been an expert skier who could tear through the deep Rocky Mountains. I haven’t returned to the Rockies—I may not be able to, because of lingering babesia—but I have worked myself up to more challenging trails in the East, and can ski for longer periods of time now.

And in a couple weeks, I’m going to a Warren Miller movie. It’s been 12 years since my failed attempt to do so. But I have faith that this year I will be able to enjoy the film. I’ll avoid the previews, which are always too loud and fast for me. I’ll close my eyes when the images on the screen get too intense. Otherwise, I’ll watch the movie because I know my neurological symptoms are now recovered enough for me to handle it, because I know my body is strong enough to ski, because I can get as excited for the upcoming season as everyone else in the theater.

Because I am, at last, ready.

jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

[email protected]

What is Air Hunger, Anyway?

By Jennifer Crystal

Chronic Lyme disease & its co-infections, like Babesia, can produce unique symptoms. One of them is referred to as air hunger.


Listen to the audio version of this blog here:

When I tell people I have chronic Lyme and some of its co-infections, they often look at me quizzically and ask: “What’s a co-infection?” I explain that in addition to Lyme ticks can transmit other diseases as well. I get an understanding nod until I say the names of the diseases. Rarely have people heard of them: Babesia, Ehrlichia, and Bartonella. One of my graduate school professors got so tired of trying to say “Babesia” that he jokingly renamed it “babelicious.”

I get a similar reaction when I tell people that a chief symptom of Babesia is air hunger. Some hear the term and think of marathon runners or asthma patients. Most really have no idea what it actually means. Literally, it means to be hungry for air. But how is that related to Babesia, and what does the symptom actually entail?

Babesia is a parasite that eats the oxygen in red blood cells. This result is low blood oxygen levels in the body. When you are hungry for food, your stomach might grumble, and you might feel a gnawing or emptiness, a craving for sustenance. You might become lightheaded or even faint. The same is true when your blood is hungry for oxygen, except you feel the hunger in your cells rather than in your stomach.

You know when exercising how you can feel your blood pumping, whereupon endorphin release makes you vivacious and energized? That feeling when your muscles are a little tired from running or biking, but you’re also exhilarated, hitting that “runner’s high” when you feel like you can do a million jumping jacks?

I used to feel that, too. I used to ski for eight hours in the back bowls of the Rocky Mountains, bouncing through mogul fields with reckless abandon. And at the end of the day, my body would be loose and limber. I was tired, sure, but it was nothing that a good meal and a good night’s sleep couldn’t fix. The next morning, I’d be ready to ski again.

Then I got Lyme, Babesia, and Ehrlichia. At first, before the illnesses were properly diagnosed, I simply noticed that I couldn’t keep up with my fellow skiers as I used to. I tired more easily, needed more breaks, and often experienced blood sugar crashes and lightheadedness after a particularly intense run. Skiing at a high altitude means there’s less oxygen available, to begin with, but what I didn’t know was that a blood parasite was also compromising my oxygen levels.

As the tick-borne illnesses slowly took over my body, my post-exertional fatigue and hypoglycemia increased. Sometimes I’d experience these symptoms when I was simply walking down the street. I started to get terrible migraines, always after exercise but sometimes just after a long day of teaching, and sometimes for no apparent reason at all. What I didn’t know was that the oxygen level of my red blood cells was getting lower and lower, causing these debilitating symptoms.

One day towards the end of my second year of teaching in Colorado, I tried to go for a short hike near my apartment. I barely made it a few feet up the dirt path before I found myself gasping for air. I wanted to take a deep breath, but couldn’t get one. As I clutched my chest, another hiker asked if I was okay. “Asthma,” I wheezed, even though I’d never experienced that condition before.

A doctor did diagnose asthma but didn’t explain the sudden onset. He didn’t realize that my gasping for breath was a literal manifestation of air hunger caused by Babesia. Instead, he gave me an inhaler, which I sometimes needed to use in class; in the middle of a lecture, I would get so lightheaded and short of breath.

Later, when I was finally diagnosed with and treated for tick-borne illnesses, I experienced Herxheimer reactions so bad that skiing, hiking and even walking became activities of the past; I could barely get up a flight of stairs. Often my arms and legs would feel jumpy like I was having a panic attack. This is because they weren’t getting enough oxygen; the jumpiness was their way of “grumbling” like a stomach does when it needs food. My limbs felt, how can I put this? They felt empty, the opposite of the way they used to feel when they were pumped full of healthy oxygenated blood during exercise. I wanted to take a deep breath and send the air right to my limbs, right to my cells, to re-invigorate them, but I couldn’t.

Overeager during treatment, I started physical therapy too soon, and paid for it. A mere thirty seconds on a stationary bike left my limbs gasping for air. It seemed like a thick molasses was seeping through my whole body, weighing me down. A heavy sensation crept into my head, filling it with pressure until I was overtaken by a full-blown migraine. After, I was in bed for a week.

The good news about that experience is that it told my doctor I needed to increase my Babesia treatment. Anti-malarial medication got me back on my feet, eventually back on the stationary bike, and, finally, back on my skis. I don’t think I’ll ever be able to bounce through moguls for eight hours at a time again, but I can ski a full morning without getting air hunger. I can paddle-board or canoe for hours. Sometimes, when I push myself too hard, I feel a tightening in my chest for a day or two after exercise. And sometimes I begin to feel air hunger in my cells as I’m walking around the city, getting that jumpy feeling in my limbs when I climb a flight of stairs or get a headache shortly after exercise. This tells me that it’s time to increase the homeopathic drops I now take to keep Babesia at bay.

Now I can say to my doctor, “I’m starting to feel some air hunger,” and he knows exactly what we need to do. Hopefully, this explanation will be a revelation for those readers who, like me, were so long perplexed by this frightening undiagnosed symptom.

Related blogs:
What Does it Mean to Herx?
The Strange Symptoms I Never Knew Were Related to Lyme Disease
Dealing With Brain Fog
My #1 Headache Trigger? Lyme disease

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir One Tick Stopped the Clock is forthcoming. Contact her at [email protected].

patient laboratory

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.

marisol thomas

Marisol Thomas: Existing with Late-State Neurological Lyme Disease

Below is Marisol Thomas’ Honoree speech given at the 2017 Global Lyme Alliance New York Gala on October 11, 2017, printed in full with her permission.

When the Global Lyme Alliance reached out to me to say they wanted to honor me, my first instinct was to say no.  Actually, my first instinct was to run and hide.

I’m not the usual success story that you hear about in these speeches.  I’m not at the end of my long journey.  I’m deeply in the midst of it. To be completely honest, I’m in pain right now, and I was actually so worried that I wouldn’t physically be able to make it here tonight.

I don’t like to lie. And when I was approached to be honored, I feared that by accepting it and standing up here in front of you all, it would be just that. A lie.

Even after I agreed to be a part of this amazing evening, I had second thoughts every day. I kept thinking that if everyone could see me on the days and days that I spend in debilitating pain unable to get out of bed, they would realize that I shouldn’t be here.

Marisol Thomas
Marisol speaking to the more than 700 people in attendance at the 2017 GLA New York Gala

Then, just after my husband and family had convinced me to do some interviews to talk about what I’ve gone through, things shifted. I started to hear from other voices.

Voices that sounded like me. Some who have been in this same struggle, fighting to hold on just one more day. Some that have lived in pain for so long, having no idea what’s happening to them, that they start to believe maybe they’re going crazy. People who have spent decades going to the best specialists around the world and still have no answers.

These people started to reach out to me, thanking me for sharing my ugly story because it either helped them finally start to look in the right direction or just to simply say that it felt good to know that they weren’t crazy and they weren’t alone.

I have late stage Neurological Lyme Borreliosis, Babesiosis, Bartonella, and a host of other coinfections. To make things even more challenging, I also have Hashimotos Thyroiditis, an autoimmune disease that was triggered by the Lyme infection, when it unbalanced my immune system sufficiently to trigger the autoimmune mechanism.

Living with these multiple diseases has quite literally stolen my life. I went from being a happy and fulfilled person to just existing. There isn’t a day or even a moment where I’m not in pain. Many days so excruciating that I lose track of the hours that have passed.

On the days where people see me out and about with a smile, they don’t realize that I’ve just learned to function at a level of pain that most people couldn’t imagine. Each day is about surviving somehow.

My Mom’s daily mantra and mine has become JSS. Just Survive Somehow. This disease has affected my family and all my relationships in such a huge way that it pains me to even talk about it.

As someone with late-stage neurological tick-borne disease, I have joined a club of people with a stigmatized illness.  One that many don’t understand or want to believe. And that many doctors don’t even want to treat.

Having this disease feels like Groundhog Day in constant pain. It feels like you’re standing still just existing, unable to participate, as the world continues without you.

With fellow Gala Honoree Joseph Abboud

It is extremely isolating and you feel completely alone, as no one, not even the people who love you most, can understand the pain you live in every minute of your life.

So sadly many times, along with struggling to survive, you also feel the need to defend yourself daily. Desperately hoping to be believed.

The heartbreaking truth is that you will lose people on this journey. Some who can’t believe that anyone can be that sick with so many different symptoms for so long. Some who just get tired of you canceling plans at the last minute. And some that just can’t understand why you don’t get dressed, go out and get over it.

The sad reality is that when people don’t understand something, most of the time they don’t believe it. Nobody can really understand unless they have gone through it.

Those who stay, who really love you, who really want to help and try hard to understand your situation, still can’t grasp what you’re feeling, and many days you’re left feeling isolated and lonely in spite of all their efforts.

This leaves us feeling a tremendous amount of guilt. I feel guilty for being sick. For letting the people I love so much down time after time.

I have no control over it, and it’s not my fault, and yet it crushes me. Because I know my illness affects everyone around me.

As grim as my current situation is, I am one of the lucky ones. I have doctors who are willing to provide open-ended treatment and stand by me, no matter how long or how many twists and turns this journey takes me on.

And I’m also blessed to have a great support system.

I have a core group of wonderful people that have literally saved my life. Even though they probably don’t really know it.

My closest friends, don’t realize that just by sending me a text letting me know they are thinking of me, and are there for me, can brighten my day even when I’m unable to respond.

Getting weekly pictures and videos of my beautiful nephew Gavin, who I don’t get to see as often I want, helps me still feel a part of his life.

My Mom and Dad who have sacrificed so much in their lives to make sure I got all the opportunities they never had. And now continue to sacrifice trips and dinners, just to make sure they are always here for me.

My dogs…my boys…which, if you know me, are my world. Whose unconditional love, give me a reason to get out of bed some mornings.

Marisol’s husband Rob Thomas performing with Chris Daughtry

And last but certainly not least, my husband, who is not only my best friend, but also literally my other half. No one will ever understand how much he has sacrificed in order to be with me all these years.

They have no idea that moments before he goes on stage in front of 15,000 people, that he was just on our bus, administering some medical therapy on me, that he learned and perfected better than most nurses I’ve ever met. Only to go and finish his show, jump off the stage, and come right back to help take care of me and our boys, who as luck would have it, are special needs as well.

His fans think he’s a wonderful person and they’re right. They just don’t know how right they are.

But I know that many people out there are not as blessed as I am to have this kind of love and support.

They are suffering in silence with nowhere and no one to turn to. I have cried learning how many suicides occur due to how unbearable life becomes for some and having no one believe them. They just want relief from their pain, and for someone to believe their story.  This is all any of us want.

So after struggling so much with accepting this honor, it is for all those people out there suffering and feeling alone and isolated, that I decided I must not only keep fighting, but also help bring awareness to this very real, very life threatening disease that is so stigmatized and misunderstood.

Connecting with fellow Lyme warrior Yolanda Hadid

It was my own feeling of isolation that led me to Yolanda’s book. I used to love to read so much. I was always buried in a book. But for the longest time it has physically hurt me to try to focus on the words on a page due to my visual disturbances, and sadly I just slowly stopped reading.

But I found a way to read her book from cover to cover. There was a sad irony in reading about someone else’s struggle while the simple act of reading itself put me in excruciating pain, but seeing someone else’s pain mirroring mine helped me to focus. And it was the first book I was able to read in over two years.

That’s when I realized what the word ALLIANCE in GLOBAL LYME ALLIANCE truly stood for.

For those of us who live with this disease that makes us feel so alone and isolated, to find a group of people who feel exactly the same way and still find a way to get up every day to continue to fight to get to other side, somehow gives you strength.

Sometimes having an alliance to support you is the difference between those of us that make it and the far too many who don’t.

So while I don’t feel much like someone who should be honored here tonight, I do feel that it’s an honor to be a part of this amazing alliance that is fighting tirelessly to give us a voice and help find a cure. So that others won’t ever have to suffer this way again.

So thank you for allowing me to be a part of something so much greater.

Watch Marisol’s Speech

Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends. Special thanks to Marisol Thomas for giving permission to Global Lyme Alliance to reprint her speech from GLA’s 2017 New York Gala. Mari, we honor and thank you.

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.


Do you have a question for Jennifer? Email her at [email protected].

How long did it take for you to get better?

I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.

What medicine and/or supplements did you take?

Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.

How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.

This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.

My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.

I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.

Do you have any communication strategies?

One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?

As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.


Opinions expressed by contributors are their own.

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

A Matter of the Heart

by Jennifer Crystal

Lyme carditis: When it comes to maladies of the heart, don’t overlook Lyme disease and its co-infections.


In the summer of 1999, after studying abroad in Paris, I backpacked with a friend through Europe. We slept on trains, stayed in youth hostels, and met hundreds of fellow college students wearing small packs on their fronts and campers’ packs on their backs. We were sun-kissed, culture-saturated, and happy. The world was different then, and we were lucky to have had such a carefree experience.

Well, it was carefree for my friend and fellow travelers. But for me, something wasn’t quite right.

As I moved from country to country, I started noticing a pulling sensation in my chest. I would be walking down a street, or waiting for a train, and suddenly feel something akin to a tight rubber band being stretched from one side of my breastbone to the other. It would come on without warning, but then dissipate, until I’d feel it again a day or two later. I brushed the sensation off as strain from my backpack, which easily weighed fifty pounds.

But I felt the pulling when I wasn’t wearing the pack, too. Back in the U.S., I decided to make an appointment with my primary care doctor.

The previous semester, a student at my college had dropped dead due to an undiagnosed heart condition. Her story was in the back of my mind as I traveled, and I relayed it through fearful tears to my doctor. I remember the soft touch of his hand as he laid a reassuring palm on my forehead. “Ohhh, how awful,” he said. “Of course you were worried. But no, that’s not what’s going on here.”

What was going on, he said, was costochondritis: inflammation of the cartilage that connects the ribs to the breastbone. The doctor was able to diagnose it by pressing gently on the area, which felt bruised. He explained that while painful, the condition was nothing to worry about, and might have been brought on by the strain of carrying my pack or by stress.

That latter reason was a catch-all rationale I’d heard repeatedly in the two years leading up to my European tour. During that time I’d wrestled with an on-and-off flu, frequent bouts of bronchitis, idiopathic fevers, and hypoglycemia. No doctor had ever drawn a connection between those symptoms, and when standard lab tests came back normal, I was told I was run down or stressed—or that maybe it was all in my head.

blog_jennifer crystal_matter of the heart_lyme carditis_quote

In fact, my body was harboring undiagnosed tick-borne illnesses: Lyme, Ehrlichia, Babesia and Bartonella. It would be another six years before a specialist drew the right connection between the symptoms and made an accurate diagnosis. The costochondritis was yet another clue that was overlooked, as was the tachycardia (racing heartbeat) I sometimes experienced. Lyme bacteria can squirrel into all organs, tissues, and cells, and if it invades heart tissue, it can cause Lyme carditis, which can manifest in a number of ways: costochondritis, tachycardia, bradycardia (slow heart rate), heart block (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms), and myopericarditis (swelling of the heart).

Comparatively speaking, my symptoms were mild, and once I was accurately diagnosed and treated, I never experienced them again. Renowned oncologist Dr. Neil Spector was not as lucky. As he details in his memoir Gone In a Heartbeat, Dr. Spector experienced 16 years of episodic alternating tachy- and bradycardia, even once having the symptoms of a full heart attack. His heart rate would always return to normal, though, and his symptoms, like mine, were often blamed on stress. By the time Dr. Spector was accurately diagnosed with Lyme, he had dealt with brain fog, stiffening of the veins, visions of bright lights during sleep (later associated with lack of oxygen to the brain due to a slow heart rate), heart block, weight loss, and arthritis. He had a permanent pacemaker, a defibrillator, and ultimately underwent full blown heart failure and a heart transplant.

Had Dr. Spector’s heart problems been accurately diagnosed from the start as Lyme-related, he could have avoided this near-fatal trajectory. If your symptoms have been written off as “stress” and you know—in your heart—that something deeper is going on, please persist in finding the right doctor and right diagnosis.

If you have already been diagnosed with Lyme but have not had your heart checked, please ask your doctor to do so. Though the CDC only reports carditis in 1% of Lyme cases, its severity can be a matter of life and death.

Opinions expressed by contributors are their own.

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

Podcast: Lyme Disease and Tick-Borne Co-Infections

The most common tick-borne infection is Lyme disease. However, infected ticks also carry and spread numerous co-infections.


The newest Global Lyme Alliance podcast, with GLA’s Dr. Harriet Kotsoris and Dr. Mayla Hsu, discusses Lyme disease and the co-infections that are often transmitted along with the initial tick bite. Below is an excerpt. CLICK HERE to listen to the entire podcast.

Host:  In this podcast we’re going to expand our discussion to include co-infecting tick-borne diseases that are often transmitted along with Lyme. I’m in our studio with Dr. Harriet Kotsoris and Dr. Mayla Hsu who are science and research officers at the Global Lyme Alliance. I’ll start off by asking, what is a tick-borne infection?

Dr. Harriet Kotsoris:   A tick-borne infection is an infectious disease spread by the bite of an infected tick. The most common is Lyme disease but many others are present in the same tick bite. Depending on the location and the season, up to half of all ticks may have had more than one kind of microbe or disease producing organism that can make humans very sick. The list of microbes is expanding up to 11 or 12 at last count, but we’ll focus today on the major ones. These are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease producing organisms.

There is an increasing number of ticks that are multiply infected as we just said. In a recent west European study of Ixodes ricinus ticks, very similar to the American black legged deer tick, up to 45% of those ticks were co-infected with up to five pathogens or disease producing organisms. We have a similar experience here in the United States.

Host:  How many people get tick-borne infections?

Dr. Kotsoris: The Centers for Disease Control calculates about 330,000 Lyme disease cases per year but it may be even over 400,000. It’s not really understood how many of these are also infected with other microbes, which in some cases cause different illnesses that require different diagnostic tests and different treatments.

Host: What can you tell us about the ticks that spread these diseases?

Dr. Mayla Hsu: Well in the United States there are different families of ticks that may be co-infected with various pathogens. As Harriet just mentioned, the Ixodes ticks or the black-legged ticks are now in half of all United States counties. There’s another tick that is further south, known as the Lone Star and there is also an American dog tick called Dermacentor that also harbors infectious microbes.

Host:  How about internationally?

Dr. Hsu: Well it seems that ticks are generally found in all temperate climate zones, so there are the Ixodes species in North America, these are also found in Europe and Asia, there are other ticks found in Africa, parts of temperate Africa, that infect humans as well as animals there, and they’re responsible for causing relapsing fevers. There are soft ticks, Ornithodoros, the Ornithodoros family of ticks, that are found in South America and Western Africa, and these too are associated with causing diseases in humans. The jury is still out in Australia. There are ticks there but it’s not known whether or not they’re correlating with human disease.

Host: What do we know about changing tick geography?

Dr. Kotsoris: It seems that in the United States, the geographic range where ticks are found is expanding and we know that with climate change the range is also changing, so for instance, it is expanding northwards into Canada where Lyme disease was never a concern, it now is starting to emerge. We can expect and see more tick-borne diseases elsewhere, also spreading in through the United States. These are now classified as emerging infections and so public health authorities are very concerned about this and tracking the emergence of more tick-borne illnesses.

Host:  What are some of the emerging tick-borne diseases and again we’re going to focus only on the major ones about which the most is known.

Dr. Hsu: One of the more interesting tick-borne illnesses that has been emerging in recent years is called babesiosis. This is an illness caused by a parasite that’s very similar to malaria. It’s called Babesia, Babesia microti. This is characterized by recurrent fevers, so people get fevers that spike and then go away and then come back over and over again, chills, muscle and joint aches and pains and it can be actually fatal in rare cases. The diagnostic test for this is not a blood test looking for antibodies, rather the blood is examined under a microscope and here you can see the organism actually growing in red blood cells, so just like malaria it grows in red blood cells and you can see it in a blood smear and the treatment required for this is also very similar to anti-malaria therapies, so that’s drugs that are similar to quinine but also anti-protozoan drugs like Atovaquone, also known as Mepron, and antibiotics, azithromycin and clindamycin.

About 1,800 people were reported to have gotten babesiosis in the year 2013, and the numbers are rising so where we see Lyme disease we are also starting to see more and more Babesia, and it’s important to point out that the treatment and diagnostic for Babesia is different from that of Lyme disease, so if Lyme disease is suspected and is looked for, and treated, a person who also has Babesia will not get adequately diagnosed or treated and can continue to be ill.

Host: There are several bacterial diseases that are spread by ticks that have been getting more attention in recent years, Anaplasma and Ehrlichia.

Dr. Kotsoris: Yes, historically these started out as veterinary diseases. They were identified in the late 80s and early 1990s, after having been studied as long-standing veterinary problems. These organisms belong to a group known as the Rickettsiae, Anaplasma, Ehrlichia, and Rickettsia itself. These are what we call obligate intracellular parasites. They’re bacteria that only live inside the cells of another organism, and that’s how they affect humans. Human granulocytic anaplasmosis is what we call a gram-negative bacterium of the rickettsia family. It invades white blood cells after a tick bite by an infected tick and it travels and lodges within granulocytes or the neutophils, the white blood cells of the human being.

About one to two weeks after the bite, the patient will develop spiking fevers, headache, drop in white blood count, drop in platelet count…the platelets are responsible for clotting blood, and a rise of liver function tests indicative of an inflammation of the liver. These organisms are very smart and release a chemical substance known as a chemokine, or a cytokine, interleukin-8 that actually is an attracting chemical for white blood cells to help propagate the infection throughout the body. The diagnosis has to be made by blood smear because the comparison of acute and convalescent sera that is the development of convalescent antibodies may be too late in the game, that the patient will have been compromised medically and treatment will have been delayed. The diagnosis can also be made by something known as polymerase chain reaction and the treatment is doxycycline, 100 milligrams twice a day, similar to what’s used in acute Lyme disease and the treatment is until three days after the disappearance of the fever.

Related is something known as human monocytic ehrlichiosis. Ehrlichia and Anaplasma were used interchangeably in the past, but now they’ve been divided into separate categories because of the bacterial composition. Human granulocytic anaplasmosis is carried by the black legged deer tick, Ixodes scapularis, Ixodes pacificus on the west coast, but this vector for human monocytic ehrlichiosis is the Lone star tick, or Amblyomma americanum and Dermacentor variabilis, the American dog tick. The classic infection in the Midwest in particular is by Ehrlichia chaffeensis and Ehrlichia ewingii, more so chaffeensis. Usually peaking in July, usually affecting males older than 50 years old, and again, within a few weeks of the tick bite, the patient develops headaches, muscle aches, otherwise known as myalgias, fatigue, a drop in white blood count, a drop in platelet count, fever, gastrointestinal systems, which may lead to also respiratory insufficiency and kidney failure.

The three states most affected by Ehrlichia chaffeensis and ewingii are Oklahoma, Missouri, and Arkansas. They account for 30% of the reported cases of these bacterial species. The numbers have been reported in the low thousands over the last few years. In 2009, a third cause of human ehrlichiosis was identified in the upper Midwest. This has been known as Ehrlichia muris-like agent. Interestingly, it also exists in Eastern Europe and Asia. The detection of this pathogen or disease producing organism is by looking for the DNA, that is the genetic material, of this organism in the blood of patients. About 2.5% of Ixodes scapularis ticks are infected by this E. muris type agent. Note that this one is spread by Ixodes scapularis, the black legged deer tick, not the Lone Star tick as in human monocytic ehrlichiosis.

One of the better known bacterial infections that people read about, hear about, especially with people traveling into the Rocky Mountain area, into the Midwest, into the Southeast, is something known as Rocky Mountain Spotted Fever. This is Rickettsia rickettsia…it is spread by the American dog tick, by the Rocky Mountain wood tick, and by the brown dog tick. There are reported 14 cases per million population, peaking in April through September. Despite its name, as I said before, it’s not confined to the Rocky Mountains, it’s also found in the southeastern United States. These bacteria, after the tick bite, travel within the blood stream and lodge within endothelial cells, that’s the lining cells of small blood vessels, and elicit inflammatory changes and make the blood vessels leaky, affecting all organs infected, especially the skin and the adrenal glands. The platelets responsible for clotting are consumed and you may have kidney malfunctioning.

Patient will present with severe headaches, high fevers, a few days after the bite and a few days after that, a spotted rash on the wrists, palms, and ankles. Patient may also have abdominal pain, nausea, vomiting, and other generalized symptoms. The mortality rate can be as high as 4% and this is caused by a delay in diagnosis and treatment. The treatment is doxycycline and patients do best, and have a much lower morbidity and mortality if they’re treated within five days of being infected.

Below is the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme and co-infections, specifically Bartonella and the Powassan virus.

Follow Global Lyme Alliance on SoundCloud to hear future podcasts.

Tainted Transfusions: Why Screening Blood is More Important Than Ever

by Mayla Hsu, Ph.D., GLA Science Officer

The importance of screening for babesia in our blood supply is the focus of a new study published in the New England Journal of Medicine.


The last thing anyone wants from a blood transfusion is to get sick from an infectious microbe. Currently, the American Red Cross and other blood collection agencies screen for blood-borne pathogens like HIV and hepatitis viruses. But there is a malaria-like parasite called Babesia microti that can make us sick, and is not routinely screened for.

Spread by the same biting ticks that transmit Lyme disease, babesiosis can be self-limiting and asymptomatic in healthy adults. However, in the immunosuppressed–the elderly or those co-infected with Lyme disease–the illness, which is characterized by recurrent fevers and pain, can become severely debilitating and is potentially fatal. When blood from such infected patients is examined with a microscope, the parasite can be seen replicating inside red blood cells.

A new study published in the New England Journal of Medicine has shown that screening for babesia-infected blood is useful in reducing transfusion-acquired babesiosis. This research, conducted by the American Red Cross, analyzed blood donation samples obtained in Connecticut, Massachusetts, Minnesota, and Wisconsin, all states with high incidence of Lyme disease and babesiosis.


They found that after analyzing 89,153 blood samples, 335, or 0.38%, were positive for babesiosis, and these donations were removed from the blood supply. During the study period, which was from June 2012 to September 2014, there were 29 recorded cases of transfusion-acquired babesiosis. These came from blood that was not screened, and follow-up of the specific donor samples showed later that the source blood tested positive for Babesia.

When focused on Connecticut and Massachusetts, the researchers found that for screened blood, there were no transfusion-transmitted babesiosis cases in 75,331 blood donations. In contrast, with unscreened blood, there were 14 cases of babesiosis in 253,031 donations. This showed that blood donation screening was effective in preventing babesiosis transmission via blood transfusion.

Every year, about 1800 cases of babesiosis are reported to public health authorities, with 95% of cases in only 7 states. However, this is likely to be an undercount, due to low medical awareness and misdiagnosis of the disease. Presently, there is no Babesia blood donation screening test that has been approved by the Food and Drug Administration. This study and others like it will hopefully lead to such a test, by showing the vital importance of protecting our blood supply from a dangerous pathogen.