Dear Lyme Warrior…Help! Steroids and Air Hunger

Do steroids make Lyme disease worse?

Yes. I learned this the hard way. Twice before I was accurately diagnosed with Lyme disease, I was prescribed steroids. The first time was in 2002, five years after my tick bite, and three years before I started treatment for Lyme disease, babesiosis, and ehrlichiosis. I was prescribed steroids to treat systemic hives that, unbeknownst to me or my dermatologist at the time, were caused by Lyme. After being on that round of steroids, I was stricken with my usual on-and-off flu for several weeks.

I was prescribed steroids again in 2003 when I had a bad case of mononucleosis. Ironically, I begged my primary care physician for that prescription, so that I could speed up my recovery and get on to my summer job as a camp counselor. The steroids did clear up my sore throat and swollen glands very quickly, and while I was on them, I felt like I had energy. I went to camp, which was a mistake. My energy levels soon crashed, and the mono slipped into chronic Epstein-Barr virus. Two bedridden years later, I discovered that the Epstein-Barr was not improving because I had underlying tick-borne infections. Those infections probably would have come to the forefront anyway while I had mono, but the steroids certainly didn’t help.

Why do steroids impact Lyme disease patients so negatively? In his blog post “Steroid Use Can Lead to Long-Term Treatment Failure for Lyme Disease Patients”, Daniel Cameron, MD explains, “An association of steroid use with an increased failure rate or worsening of disease is understandable in view of the well-known effects of these agents on the inflammatory and immune responses.” Dr. Cameron points to several studies that tie steroid use to Lyme disease treatment failure.

My Lyme Literate Medical Doctor (LLMD) has told me that the response to oral steroids is different than inhaled steroids. I have been on inhaled steroids for sinusitis (nasal spray) and for post-COVID-19 lung inflammation (inhaler) and have not had any issues with those, but of course the best thing is to always check with your LLMD about the way your own body might respond to any medications.

I have babesiosis and am starting to get back into exercise. Should I go until I feel air hunger, push beyond it, or stop before I feel it?

This question comes in response to my post “What is Air Hunger, Anyway?”, which describes a common symptom of babesiosis. Babesia is a parasite that eats the oxygen in the red blood cells, making the body feel hungry for oxygen. For me, that feels like molasses weighing my body down. Sometimes it feels like my arms and limbs are “gasping,” my cells craving air the way your stomach might grumble for food when you’re starving. I feel lightheaded, and experience low blood sugar reactions. I often get a headache.

These symptoms usually come on post-exertion. I started physical therapy while I was still in treatment for Lyme disease and babesiosis, and that was a bad idea; thirty seconds on a stationary bike caused such bad air hunger that I was in bed for a week. While trainers will often tell a healthy individual to press through fatigue and push their bodies just a little further with each workout, this advice is detrimental for a babesiosis patient. Even now that I am in remission, pushing doesn’t make me stronger; it sets me back. I have learned that I need to stop and rest before I feel air hunger. I need to pace myself. Even if I’m not yet tired, it’s better to take breaks, or even call it a day, so that my body is able to keep going the next day. With babesiosis, slow and steady definitely wins the race.

Will you give an update once you get the COVID-19 vaccine?

Yes! I have written four blog posts about my experience with COVID-19, which I had from March to June 2020. As I explained in my post “I Have Lyme Disease. Should I Get the COVID-19 Vaccine?”, the decision whether to get the vaccine is a personal choice that depends on risk-benefit analysis for each patient. Considerations should include where you are in Lyme treatment, how your immune system is doing, etc. For me personally, my doctors and I have determined that the benefits of the vaccine outweigh the risks, so I will be getting the vaccine once I become eligible. I anticipate some kind of immune response, and hope it will not last too long, but I will write an updated post after receiving both doses of the shot.