My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

Ever since the beginning of the pandemic and the first mention of vaccine development, there has never once been a doubt in my mind about whether or not I would take it when available to me––of course I would get the shot to protect myself and those around me.

That decision may not seem noteworthy to most, but for me, as someone with a neuroimmune condition that can be triggered by vaccines, many people would say I had every reason not to get vaccinated. But considering only the theoretical risk of a vaccine without considering the benefits is short-sighted and irrational.

Having Myalgic Encephalomyelitis, PANS, and autoimmune POTS puts me at high risk of developing long-term and autoimmune complications of COVID, according to my doctors. I also have an immune deficiency, asthma, and no B cells thanks to my immune-suppressant. If I got COVID, all of those factors mean I’d almost certainly end up in the hospital. So suffice it to say that chancing a vaccine-triggered flare up in exchange for protection was very worth it.

Something I don’t see discussed enough is the fact that, if you can flare from getting a vaccine, you can absolutely flare from the virus that the vaccine prevents. I’ll never say that vaccines don’t trigger PANS or ME, but I think more people need to acknowledge that the viruses they prevent can have an even worse effect on a person.

After consulting multiple doctors and examining the data on the risk of both getting and not getting vaccinated against COVID, the evidence was clear: getting the COVID vaccine was the safest course of action for me.

Disclaimer: Nothing in this post constitutes medical advice. This post is only meant to share my personal experiences and the reasons I chose to get vaccinated.

Vaccine Complications vs. COVID-19 Complications

Serious adverse effects only happen in 0.005% of COVID vaccines. That’s one in 750,000 doses.

On the other hand, COVID’s death rate has been 1.7% in America. And at least 30% of COVID survivors experience organ damage or long-term symptoms. Many of those with Long-COVID are young, formerly healthy people, including kids and teens. There are risks with every medical intervention, including vaccines. But you cannot rationally conclude based on the numbers that the vaccines are more risky than getting the virus. Over 135 million people in America alone have been safely vaccinated.

When it comes to COVID and my own health, it isn’t the death rate that concerns me the most––it’s those long-term complications. My neuroimmune conditions all started with mild or asymptomatic viruses. And every couple of years, I get an infection without realizing it until it causes life-altering inflammation in my brain and nervous system.

Those of you screaming about a “99% survival rate” or “trusting your immune system” have never had your life ripped apart by a minor case of mono and then spent seven years battling the resulting autoimmune disease. You’ve never ended up in a wheelchair and having to quit school after asymptomatic HHV-6. You’ve never lost your mind to a case of Strep whose only symptom was brain inflammation. Truthfully, I envy that you’ve never had to experience surviving an infection but losing your life as you’d once known it.

Had there been a vaccine to prevent mono, HHV-6, or Strep, years of suffering in my life could have been prevented. And right now, all of you have that option to prevent COVID and its complications by taking a vaccine.

My Vaccine Experience

I’m a month out from my second dose of the Moderna vaccine and doing fine!

After the first shot, I got a headache within fifteen minutes. I felt like I had a bad virus for the first day, and I was extra tired for a week. My glands were tender, too. I felt like my POTS symptoms were worse for a couple of weeks––I had some episodes of random sweating and tachycardia, but they were brief.

After a couple of weeks, I actually felt I had more energy than before the vaccine.

The second dose was a little different. Within about twelve hours, the chills set in. Next thing I knew, I was under five blankets with an 100º fever.

For me, whenever I get a fever, because of my ME and POTS, it results in tachycardia. So, because of the 100º fever, my heart rate was stuck in the 120s and 130s for hours. I won’t lie––I was very uncomfortable. That first night, I was so weak I had a hard time sitting up for more than a few minutes.

Fortunately, once the fever broke, I was much better. All told, it was only about 18 hours of feeling really bad. It was a small tradeoff compared to the days or weeks I would have spent miserable had I caught COVID instead, not to even mention the long-term complications of COVID.

Keep in mind that not everyone has such severe side-effects, though. I believe having a systemic disease (Myalgic E.) means I have a harder time with vaccines and take longer than most to recover from things.

Post-Vaccine Flare?

Given the potent immune response these vaccines can produce (which is a great thing in terms of making them very effective), I was bracing myself for a severe PANS flare after the vaccine. I was afraid it would send my ME into a relapse as well. But neither of those has happened.

Ever since the second vaccine, I have had more tics than I’ve had in a long time. They are not super disruptive. I’m still able to do everything I need to do without them interfering. Pre-vaccine, I’d become accustomed to having no tics, or only having them mildly a few times a week. Now, I have a few brief episodes per day. But they’re so mild that I seem to be the only one who has noticed. They’re a bit annoying, but not serious.

I may have had slightly worse anxiety in the last month, too. However, I’m not convinced it’s the vaccine because I’m also under a lot of stress with work lately.

My Biggest Concern about the Vaccine

I had my Rituxan infusions six months ago. Rituxan kills certain kinds of B cells that make antibodies. This means that vaccines can be less effective or even completely ineffective depending on the vaccine and the person. So I’m going to have to get some tests to see if I mounted an antibody response or not.

Fortunately, you still have T cells even post-Rituxan, but tests for T cell responses to the COVID vaccines aren’t commercially available yet. So if it comes out that I don’t have COVID antibodies, I and my family will behave as if I’m not vaccinated, just to be extra safe. My strong reaction to the second dose suggests my immune system did mount some form of response, though. We shall see…

Was It Worth It?

You may never know if a vaccine helped you, because if your body mounts a response, you won’t get sick when exposed (or you’ll have a much, much milder version of the virus). But it’s important to note that getting vaccinated isn’t just about protecting yourself––it’s about protecting others around you and doing your part for the greater good. The more of us get vaccinated, the less COVID will circulate and threaten us all, including those people who truly cannot get the vaccine.

I hope sharing my positive experience will be helpful and encouraging!

3 thoughts on “My Experience with the Moderna COVID Vaccine as a Neuroimmune Patient

  1. Thank you for sharing your vaccine experience. I hope it will change minds of anti-vaxers who gloss over the severity of COVID19 (and its variants) when perpetuating myths about the vaccine’s side effects.

  2. Thank you for your update and sharing your experience!! As always, so knowledgeable!!!

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