Let me start by saying I had no question in my mind that I would get vaccinated for COVID-19. I wasn’t sure when or which vaccine, but I have family I can only visit by plane (driving from coast to coast roundtrip once last summer was enough for a lifetime). So I knew that, unless specific contraindications for people with chronic Lyme Disease were published by the FDA or CDC, I would get my shot(s). I currently have an appointment to get my first Moderna shot on April 24 at a drug store in my town. I will update the blog with my experience in the weeks after the first shot (or days, depending on how my Lyme infection and immune system react).
What the LLMDs Said
As crazy as it sounds, I haven’t called my LLMD to ask his opinion about the vaccine. I already knew I planned to get it, so I figured I would let him know about what happened, after it happened. However, I’ve been obsessively reading what there is out there, and I signed up for the Global Lyme Alliance webinar on Lyme Disease and the COVID-19 vaccine. Unfortunately, there is no way to view the webinar if you didn’t sign up for it, and the GLA hasn’t posted a summary of things to consider. Mostly it says to talk to your LLMD (which is great if you have one). Fortunately, I sat through an hour and a half of two extremely knowledgeable and respected doctors telling us that there isn’t much data to work with, and took notes on their suggestions.
For Lymies who plan to get the vaccine, there are two things to consider: preparation to balance the immune system, and aftercare for the immune system going out of control or a relapse of one of the chronic tick-borne infections. In the preparation category, the first thing to do is to look up the ingredients in each vaccine. If you have a reaction to any of them, choose a different vaccine. For people on disulfiram, the Johnson & Johnson vaccine contains ethanol as a preservative. If you choose to get it, you need to be off disulfiram for two weeks beforehand. Once you determine that there is no allergen for you in the vaccine, the next thing to do is get yourself as well as you can beforehand. It’s probably not the right time to start a new drug or treatment protocol. Go with what you know works for you. Make sure you rest/sleep consistently and sufficiently for the week prior to the vaccination, eat well, get whatever level of exercise works for you. Basically, do the stuff you know helps you minimize your symptoms, and use whatever herbs/supplements/drugs/other treatments you normally would to keep you on an even keel. Try to avoid extra stressors and any other environmental exposures that tend to trigger flares or relapses of the tick-borne infections. (You probably know what they are for you, for me it’s sugar, wheat, and nightshade vegetables.) One of the doctors also recommended a few supplements that help balance the immune system: vitamin D, vitamin C, zinc, probiotics, gultathione, fish oil, and vitamin A. (I’m not adding any of these to the multivitamin & NAC and herbs I already take.)
The last bit of preparation is to get ready for a big reaction to the vaccine followed by a flare/relapse in tick-borne infection symptoms. The doctors recommended using resveratrol (or Japanese knotweed) as well as whatever detoxification regimen you already use for Herxheimer reactions. These tend to reduce the toxin load and reduce the excess triggers that might ramp up the immune system even more. If you use them already, keep taking them. If you don’t, then (check with your LLMD and) have them on hand in case you have a big reaction.
The first big reaction one might get is an immune response to the vaccine. This should be similar to what is publicized: flu-like symptoms, body aches, headaches, fever, etc. For those of us with altered immune systems, we might experience nothing at all, or a more extreme version of the same symptoms as everyone else, and maybe for a few days longer. The regular approach of pain killers/fever reducers that is recommended for everyone is equally recommended for us. Then the extra things I mentioned in the paragraph above.
The secondary reaction, one that I’m familiar with from getting my annual flu shot, is a few days after I feel better, I have a big Lyme and Babesia flare. The way to prepare for that is to have on hand whatever you normally do for flares (herbs, antibiotics, alternative treatments). Don’t wait to try to contact your doctor while you are overwhelmed with brain fog. Get out your usual plan and make sure you have what you need in the house.
The last bit, which they didn’t mention, is to clear your schedule and have food on hand. If you don’t have a big reaction, then you still don’t have to worry about cooking or time-sensitive deadlines. If you have a big reaction, at least there will be food in the fridge that doesn’t require your energy to prepare…and you won’t have to cancel zoom calls or other activities you like to do when you aren’t feeling run down. (I also got a blessing from my husband to monopolize the choice of streaming movies/shows until I recover. Gotta love him!)
Not My First Vaccine Rodeo
The main reason I had no compunction about getting a COVID-19 vaccine is that I’ve had other vaccines since I became disabled by Lyme and other tick-borne infections. I’ve had several flu shots (since my husband worked in a hospital and I was afraid he’d bring it home, and, as I mentioned I fly to visit family, including elderly parents, and I didn’t want to bring the flu to them or be sick while I was visiting). I’ve had a moderate flare in Lyme and Babesia symptoms after each shot, in addition to flu-like symptoms for two or three days after the shot. I’ve gotten vaccinated for Hepatitis A (not the live attenuated but the dead version), tDaP, and rabies. (The last one sounds crazy, and maybe it was, but for the purposes of this blog, it gave me data.) For each, the initial reaction was a mild vagal response, not fainting, but feeling lightheaded and nauseated. I didn’t realize until later that I have a vagal response to needles. However, I don’t avoid them, I just prepare for the reaction. The Tdap hit me pretty hard. It took over a month to get through the Lyme/Babesia flare after that one.
The point in saying all this is that having a Lyme flare is not the end of the world. I’m already disabled from these illnesses. I already have two seasonal flares and other flares after I catch a cold or eat pizza. Some flares are worse than others. I have my list of herbs and my trusty coil machine. If I’m still messed up after two weeks and not showing any improvement, then I can call my LLMD for some antibiotics to knock the infections back, before returning to herbs and coiling. I don’t experience the vaccine with fear, just mental, physical, and logistical preparation. I have a stack of books to reread (nothing mentally taxing) and a good attitude. I hope for the best, prepare for the worst, and generally land somewhere in the middle.
I had COVID-19 in March last year, before it was trendy. I got it from a housemate who was working at a grocery store in Silicon Valley after cases had been identified there and before community transmission was recognized. (But like all things about this virus, we figure out something is already happening long after it has affected large numbers of people.) Test access was difficult and delayed. She never tested positive, though she didn’t have access to a test until after a week past her first symptom. I never tested positive, though I didn’t have access to a test until two weeks after my first symptom, and one day after my symptoms were gone. But, I knew I had it once it was gone. At the time, I was on disulfiram (and because of logistical problems in the house, I couldn’t use the coil machine, resulting in my taking a lot of herbal supplements), and I wasn’t surprised at the first bout of diarrhea. I was surprised that the diarrhea lasted two weeks continuously. I knew that I had magically developed a desensitized smell response to all the clorox wipes I was using (what a relief!) and that all the super-savory soups I was making for her tasted like cardboard to me. (She had no appetite, but she thought the soups smelled and tasted fabulous.) A day or two before my sense of smell came back, I read about anosmia for the first time in the New York Times. I wondered if it applied to me. I discovered it did when, in a flood of sensation, I could smell and taste again in the middle of an afternoon. Magic! Clorox wipes? YUCK! Beans & greens soup with thyme and rosemary? Mouthwatering!
So, officially, I was never diagnosed. But, in the year since then, I’ve had recurrent episodes that long-haulers describe: sneezing & congestion followed by a week or so of diarrhea (so bad that I get a bleeding hemorrhoid). I didn’t join any of the long-hauler groups because I’m already a Lyme long-hauler, and the rest of the symptoms overlap, specifically brain fog and fatigue. For me, it has meant that everything I do is impeded by an additional disease burden. It has been worse since January, with the COVID type bouts coming more and more frequently.
The good news, or at least potentially good news, is that COVID long-haulers, particularly with digestive and respiratory symptoms, seem to have a big reaction to the vaccine followed by a complete resolution of their symptoms. (NYT article) I’ll take that. I can’t find the other article, but a Yale scientist posited that long-haulers have one of three problems: (1) the COVID-19 virus triggered an autoimmune response, (2) there are fragments of the COVID-19 virus left in some tissue that the body never cleaned up but keeps reacting to, and (3)the COVID-19 virus has stored itself somewhere in the body because the immune system didn’t get rid of it. The first one sounds like the same nonsense theory that plagues the Lyme community and causes insurance companies to refuse treatment. It also has not been shown to be true (unlike actual autoimmune responses where antibodies to the person’s tissue can be found) for Lyme or COVID-19. The second theory seems like a compromise that doesn’t make sense because the way our bodies react to foreign substances is to expel them. The third theory is the one that rings true to my observations. Since our bodies have never been exposed to this virus before, some bodies will overreact (and land a person in the ICU), or underreact to the point that the virus compromises the patient (also landing a person in the ICU). There is a range in between, no symptoms to disabling symptoms with complete eradication of the virus, at one end, and mild to severe symptoms with incomplete eradication at the other end. (The latter may be the cause of the pediatric cases that land asymptomatic children in the ICU weeks later and long haulers.) There have been a few reported cases of people with severe immune dysfunction who had cases that lasted months and multiple trips to the ICU prior to death. (These reports also talk about how such patients serve as a long-term coronavirus host that allows it to mutate a lot.) So, I think it is possible that some subset of long-haulers did not eradicate the virus from their bodies and that is why jump-starting the immune response to COVID-19 might finally get rid of the virus and offer relief. At least, that’s what I’m hoping.
One tangent on the notion of long-haulers, inspired the LLMDs on the GLA webinar, is that some may get rid of COVID-19, but activate underlying infections. As someone who became disabled by Lyme 6 years after contracting it, and in the immediate aftermath of an acute food-poisoning episode, I can see that the stress of any infection can be the way a person discovers they have a tick-borne infection. All the weird symptoms, all the mystery problems that come and go, suddenly don’t go away anymore and the body shuts down. The COVID-19 long-hauler symptom list has a big overlap with chronic Lyme Disease. Maybe some portion of these folks were already infected with Lyme and didn’t know it yet. With any luck, they’ll find their way to the LLMDs who also treat Chronic Fatigue Syndrome, Fibromyalgia, and all the strange syndromes that have no obvious cause, and will get tested for tick-borne illnesses so they can get treated.
I Can’t Promise
I can’t promise that I’ll manage to blog between the first and second shots of Moderna. But I will try my best to keep the blog updated as to how the vaccine affects me and whether I have a Lyme flare. Wish me luck.
Categories: healing process