This post is aimed at other people with complex chronic conditions who might be asking questions similar to mine. Is taking a vaccine going to cause a flare of my symptoms? Set my illness back? Create new problems?
Disclaimer: I’m not a doctor, just a patient with chronic illness sharing my experience. This post is not a substitute for professional medical advice. Also, if you’re here for a general pro/anti- vaccine debate, this is not the post for you.
I’m writing this on Day 8 after receiving the first dose of the Moderna COVID-19 Vaccine as a chronically ill person. My social feeds have been filled with healthy acquaintances touting, “Hardly any side effects! Go get yours!” That hasn’t been my experience at all. Getting a vaccine is not a trivial matter for someone in fragile health. I spent the last week dealing with intense and debilitating side effects from the vaccine that are finally starting to lessen. I understand the urge to convince the vaccine-hesitant that the shot is going to go great — and it will for most people — but the thing that helped me most was preparing for the multiple ways it wouldn’t. (Hope for the best, prepare for the worst.) The last week hasn’t been easy but I’m glad I got the shot nonetheless. I’m planning on getting the second shot on schedule unless more complications arise.
I don’t have the luxury of a single word that encompasses my entire chronic illness diagnosis, but some of the problems I’m currently untangling with my doctors are dysautonomia, chronic Epstein-Barr Virus, chronic fatigue, beriberi caused by metronidazole toxicity, undermethylation, and histamine issues. This post is aimed at other people with complex chronic conditions who might be asking questions similar to mine. Is taking a vaccine going to cause a flare of my symptoms? Set my illness back? Create new problems? The vaccine is so new, everyone’s health problems are so varied, and there aren’t any concrete answers. There’s no way I can account for all the myriad conditions that people may have, but I’d like to share how I addressed my particular concerns, in case it provides guidelines for how someone else might address their own.
I want to preface this by saying I feel very lucky that vaccines are available where I live (equitable vaccine distribution is a global issue, though beyond the scope of this post). I’ve been concerned that I would be a high risk coronavirus patient due to asthma, multiple chronic conditions, and some sort of immunodeficiency (which I’m currently in the process of sorting out with my doctors), and I’ve been wary about the possibility of becoming a coronavirus long hauler with my tendency toward lingering symptoms, especially after experiencing a year of post-viral syndrome after contracting Chikungunya on a trip to Mexico. Less personal stress about contracting COVID-19 is a vaccination benefit I’ve looked forward to, as well as relieving the stress my loved ones feel about the possibility of me getting sick(er). It’s also important for me to safely see friends and family in person after a long period of illness and isolation, and participate in the greater goal of community immunity. Yet I acknowledge that there are risks to vaccines (though as a general rule, the disease being vaccinated against poses a greater risk by orders of magnitude). I was vaccine-injured in college and am still working through the aftermath of that experience; in fact, it may be the root of the chronic conditions I’m dealing with. Even with that experience in mind, it’s clear the benefits of getting a COVID-19 vaccine outweigh the risks. However, getting the point where I felt personally ready to take the first dose of the vaccine wasn’t easy.
I made a list of the potential health problems that could crop up, and came up with solutions to manage each. I was concerned about allergic and histamine reactions, whether my immune system was functioning well enough to handle the shot, intense headaches, increased dysautonomia, and worsening chronic fatigue. By laying out these issues one by one, I discovered I actually have many effective tools to work with, thanks to the knowledge I’ve gained managing illnesses over the years. I also detail what happened after the first dose and what helped with the effects. Clearly my particular issues and experiences won’t apply to everyone, but perhaps my approach can be a template for someone else.
Histamine Issues
Why I was concerned: I have a history of anaphylaxis, cholinergic urticaria, allergic asthma, food/chemical sensitivities, environmental allergies, and histamine intolerance. There have been reports of anaphylactic and allergic reactions to both the Moderna and Pfizer vaccines. I was concerned with the possibility of a severe allergic reaction or a bad histamine flare.
Solutions: While my histamine issues haven’t been diagnosed as a mast cell disease, The Mast Cell Disease Society has helpful suggestions regarding coronavirus vaccines. Because of my anaphylaxis concerns, I got the shot in a clinic where I could get medical care. The clinic I went to also required recipients to wait 15 minutes for adverse reactions. I took antihistamines for several days leading up to my vaccine appointment so I wasn’t in a histamine flare. I have an issue called undermethylation that causes histamine to build up in the body, so I made sure to take my supplements that address it. The day of, I took an antihistamine an hour before the appointment, and I had EpiPens and an inhaler with me while getting the shot.
What happened: I’m really happy I did the preparation because I didn’t have any histamine issues when I got the vaccine.
Immune System Strength
Why I was concerned: I wasn’t sure if my immune system was going to underreact or overreact to the vaccine. I’ve been struggling with reactivated Epstein-Barr Virus for the last fifteen months, which is unusual, because my body can’t keep the virus dormant like it’s supposed to. Knowing that, I wasn’t sure how my body would respond to the vaccine.
Solutions: I had nutrient tests done recently so I knew my levels of C and D were low. I focused on general immune support in the week leading up to the shot. I took vitamin C, D3 (in combination with K2), zinc (alternating with a zinc supplement containing copper because zinc alone can cause copper deficiency), magnesium, elderberry syrup and liposomal colostrum (which supports the gut and contains immune boosting factors). I read that selenium helps with immune response, particularly in the case of vaccines, but didn’t make it to the store to grab a bag of Brazil nuts (I might try some before the second shot though). I focused on nutrition in the week leading up to the shot, eating a lot of fruit, vegetables, and some organ meat (which has higher nutrient content than muscle meat), because I wanted to make sure my body had resources to handle the increased demand of the vaccine.
What happened: I was able to time the shot so it wasn’t in the middle of a Epstein-Barr flare, which I believe helped greatly. I was extremely thankful I focused on nutrition and immune support before the shot, because after the vaccine I was intensely nauseous and barely able to nibble down toast. Besides being more miserable and prolonged than other people’s, my immune response to the vaccine seemed normal.
Severe Headaches
Why I was concerned: I have a history of extreme, stroke-like migraines, and got two pretty bad concussions in 2019, which were difficult to recover from. I heard about intense headaches and stroke-like symptoms after the vaccine.
What happened: The day after I got the vaccine, I got a headache that felt like a combination of a concussion and a crushing migraine. It was debilitating and did not let up for a week. It was accompanied by cognitive difficulties (words didn’t make sense and would jump around the page), sensitivity to lights and screens, and nausea that felt as if I was freshly concussed. I couldn’t shake this mental image that someone was splitting the two hemispheres of my brain with a meat cleaver. I’ve had a lot of severe headaches in my life and I’ll tell you, this was one for the ages. Happily, words make sense again, evidenced by the fact I was able to write this.
Solutions: I usually reach for caffeine first when I feel a migraine coming on, but I was too fragile and nauseous to drink coffee or tea. I finally had the idea of baking some green tea cookies with barely any sugar, because the only things I could keep down were plain and starchy. I had a friend help me make them because I was so sick. Honestly, over all the supplements and pills, the green tea cookies full of caffeine and polyphenols may have been the most helpful. In addition to Tylenol, I took food and supplements that help with both concussions and migraines. These were B2, flax oil, NAC, CoQ10, and blueberry smoothies (more polyphenols). I’m still continuing with this regimen and my headache is gradually starting to feel better.
Increased Dysautonomia
Why I was concerned: I have a history of fainting episodes (hence the concussions), heart palpitations, and an arrhythmia that worsens whenever other chronic issues flare up. I also have interstitial cystitis and irritable bowel syndrome, which are associated with autonomic dysfunction. I thought the vaccine would trigger a flare of dysautonomia or that COVID-like cardiovascular problems would crop up.
What happened: In the days after the shot, I had multiple fainting episodes and landed hard on my face and elbows. I’ve been struggling with extreme palpitations when I stand up; I become winded and pale like I ran a mile. It became clear after the shot that I needed to be entirely on bedrest and arrange for help. I am still bedridden, but the dysautonomia seems to be lessening slightly. I will definitely arrange help for several weeks of bedrest when I get the second dose.
Solutions: I haven’t pinpointed the exact trigger for fainting flares, but they seem to coincide with histamine flares (which I thankfully had under control), digestive issues (which flared up after the vaccine), and low blood pressure. I also have beriberi (thiamine deficiency) which is associated with dysautonomia, so I’ve been keeping up with thiamine supplementation. I tried to increase the dosage after the vaccine but wasn’t able to due to side effects. The colostrum I’ve been taking for immune support has the added benefit of lessening IBS and interstitial cystitis. I’ve also been taking Quinton seawater; the trace minerals and electrolytes seem to mellow out the heart problems and dysautonomia, and the salt has the added benefit of keeping my blood pressure up, hopefully out of fainting range. The vaccine definitely triggered a flare but I think I can manage it with time and rest.
Worsening Chronic Fatigue
Why I was concerned: I thought the stress of an intense vaccine would worsen my chronic fatigue. I’ve have several bouts of chronic fatigue in my life. This current one began after I got a concussion and mono in November 2019.
What happened: I had a lot of the expected side effects from the vaccine — sore arm, swollen lymph nodes in shot arm, malaise, joint pains, and yup, worsened fatigue. I’ve been tracking my fatigue levels and so far I haven’t gotten back to my pre-vaccine fatigue level. The fatigue is improving ever so slightly each day, which gives me hope I’ll get back to the pre-vaccine level in a week or two.
Solutions: I’m continuing nutritional support! Thiamine deficiency disrupts the Krebs cycle, which is how cells make energy, so I’m continuing supplementation (and hope to eventually up the dose). The green tea and blueberries that help my headache have polyphenols that are thiamine antagonists so I had to take thiamine at a different time of day. B vitamins in general support energy production. I just recovered from B12 anemia and am also addressing B2 and B6 deficiencies. Supportive teas such as lemon balm, tulsi and nettle have helped to ease fatigue and malaise. I have faith that in supplementing for nutrient deficiencies and keeping a nutrient rich diet, I’ll eventually lift myself out of chronic fatigue, even with a few weeks of vaccine-triggered setbacks.
