Tag Archives: babesia symptoms

deer tick on grass

Have You Heard of the Tick-Borne Disease Babesiosis?

by Jennifer Crystal

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].

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].