February Lyme Warrior Q & A

https://globallymealliance.org/dear-lyme-warriorhelp-16/

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by Jennifer Crystal

Every few months, Jennifer Crystal devotes a column to answering your questions. Do you have a question for Jennifer? If so, email her at lymewarriorjennifercrystal@gmail.com.

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.

GLA is offering a free webinar, “COVID-19 Vaccines and Lyme Patients: What You Need to Know” on March 3rd at 6:00 p.m. You can register here.

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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 lymewarriorjennifercrystal@gmail.com.

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**Comment**

A few points for consideration:

  1. There are many types of steroids including: anabolic (building up) steroids and catabolic (immune suppressive – often called corticosteroids).  Only the catabolic steroids are of concern to the Lyme/MSIDS patient due to their ability to depress the immune system, and even then they can be used in specific cases, but according to experts, always in tandem with antimicrobials so infections are kept at bay and not allowed to proliferate.  So saying “steroids” are bad is like saying all plants are bad when there are certainly poisonous ones to avoid but many other plants that are healthy.
  2. Since Lyme/MSIDS is parasitic in nature, hosting off of us and depriving us of many nutrients, minerals, and yes – hormones – supplementing with the things we are deprived of will build our bodies up and make us tougher targets for disease and actually helps us fight disease.  The body is a complicated machine and there are many issues involved in health.  Again, what’s good for one patient may not be good for another.  My husband and I have been on steroids for years including vitamin D (yes, it’s a hormone), testosterone, various thyroid hormones, and I’ve been on 7-Keto DHEA as well as progesterone – all of which have helped us immensely.  Steroids are hormones that our bodies make and need.  Also, there are times a person requires synthetic steroids (not bioidentical).  My daughter is one such case as she has severe endometriosis.  The reason this is important is similarly to there being a concerted effort by mainstream medicine in denying persistent Lyme/MSIDS and long-term antibiotics as a treatment, there is a concerted effort to vilify steroids.  From everything I’ve experienced and learned from experts, steroids could replace many expensive pharmacuticals – making them a competitor to pharmaceuticals, and THAT is the reason they are vilified.  They work and are cheap.  
  3. Oversimplifying the exercise question is similar to oversimplifying the steroid question.  There are a million ways to exercise – one of which is right in your bed!  Pick a type of exercise that you can do without making yourself feel worse.  Do something you enjoy and will continue. This could be simple stretches on the floor.  Lifting canned goods a few repetitions, or doing Yoga.  Some love to swim and feel refreshed afterward.  Some love riding their bike or taking a walk.  If you are exhausted after walking to your mailbox, well, start there and feel good about it!  One must be creative and open-minded with Lyme/MSIDS.  Your body does need to move but move it in a way that builds you up – rather than tears you down.  Start small and see where it can go.  No guilt!
  4. From everything I’ve read and studied, there is a prolific and checkered history of public ‘authorities’ hiding the truth about vaccines risks, and the fact they are not safe for everyone.  Mainstream medicine is guilty of trying to put everyone into the same box when individual health matters greatly.  This is one reason Lyme/MSIDS is in the state it’s in.  It doesn’t fit the one-germ, one-drug allopathic germ theory.   I believe strongly in the right to choose and taking your individual health into account as well as the risks present for you.  So far I’m not seeing anything convincing, productive, or worth the risk about this experimental, fast-tracked COVID injection, that isn’t a vaccine and that doesn’t stop transmission or prevent infection. There are numerous issues that have yet to be addressed and the media/’authorities‘ are doing all within their power to downplay serious reactions and deaths.  Antibody dependent enhancement (ADE) is very real, and there are many testing positive and getting sick after the injection.  This “must see” video reveals those getting this injection are getting far more than they bargained for. (Dr. Lee Merrit is past president of the Association of American Physicians & Surgeons)
Lastly, every single Lyme/MSIDS patient I’ve worked with has suffered a relapse after getting vaccinated.