Wednesday, May 19, 2021

Prep for ME/CFS Patients Getting a COVID Vaccine

This is my third post about the COVID vaccines and ME/CFS. The first, ME/CFS and the COVID-19 Vaccines, explained about the specific kind of immune dysfunction in ME/CFS, how these vaccines work, and sources for patient experience. My latest post last week, COVID Vaccine Experience of ME/CFS Patients goes back to some of those resources for patient experience, three months later, to discuss what has been reported by thousands of patients. This third post will cover preparations that the ME/CFS experts recommend you take before getting your vaccine. Note that this third post, about vaccine preparation, will probably be helpful for people with a wider range of chronic illnesses than just ME/CFS.

There are three main concerns about getting the vaccine in ME/CFS and other chronic illnesses, with different things you can do for each to improve your chances of a good outcome. First, I will cover the basics: things you can do to help improve your ME/CFS in ways that will help you to better tolerate the vaccine (and feel a whole lot better, too!). Then, I will sum up with a list from the experts that pulls all of this together.


Improve Detox

It's well-known that many patients with ME/CFS over-react to even tiny doses of medications or supplements, so the concern with the vaccines is that we'll react to something in them and have trouble clearing it out of our systems. This ability to detox effectively and process toxins in our bodies is directly related to the methylation process. Methylation happens within each of our cells, and is a complex series of processes. Methylation not only controls detox processes but also the manufacture of adrenal hormones (which control all bodily functions), neurological processes, and even the manufacture of DNA and RNA. If you have poor methylation (as most with ME/CFS do), you are likely to have more trouble with the vaccines.

Fortunately, there are lots of simple steps we can take to help improve methylation, which will in turn help to improve many aspects of our disease. This post, The Methylation Cycle: Central to ME/CFS, explains more about what methylation is, what it does and how it works, and toward the bottom, steps you can take to improve methylation.

Reduce the Possibility of an Allergic Reaction

Since ME/CFS is, at its heart, an immune disorder that makes most of us over-react to allergens, allergic reactions are a bigger concern for us than for the general public. Many of us react to all kinds of things, from medications to foods to things in our environment. This tendency of our immune system to over-react to allergens puts us at greater risk of a serious allergic reaction to the vaccines.

Many of us with ME/CFS also have Mast Cell Activation Syndrome (MCAS), where our mast cells (part of the allergic system) are in an almost-constant state of activation. This can result in typical sort of allergy symptoms, like runny nose, sinus problems, watery or itchy eyes, hives, and even anaphylaxis (swelling/closing up of the throat and mouth). But, for us, MCAS can sometimes just add to our "normal" ME/CFS symptoms, like fatigue, lack of energy, pain, immune symptoms, and brain fog.

My son and I began treating MCAS a couple of years ago; his food allergies were ramping up and he'd had an unexplained anaphylactic episode and my "usual" allergies (mostly dust and mold) were just bothering me all year-round. Treatments for MCAS are mostly simple and easy to find, available over-the-counter without a prescription. We've both seen improvements with this approach, and I know other patients who've seen even more significant improvements from treating MCAS. You can read all about MCAS, how to treat it, and what is working for us at my post about Mast Cell Activation Syndrome (MCAS) and ME/CFS. It's more than just antihistamines, so take a look.

Again, as with improving methylation, treating MCAS or using MCAS-type treatments will not only reduce your chances of a bad reaction to a COVID vaccine but may also improve your overall condition.

Improve Your Immune Function

Since immune dysfunction is at the heart of ME/CFS, improving or normalizing your immune function will help to improve ALL of your symptoms ... and will also help to ensure you respond to your vaccine as "normally" as possible. Improving immune function ahead of time can help to improve the odds that you will not relapse badly after the vaccine and that your body will do what it's supposed to and make the COVID antibodies. And, again, it will improve your overall ME/CFS condition.

Much of what I have written about here on the blog and in articles for the past 14 years has been about the immune dysfunction of ME/CFS and how to treat it. My son and I have had great success with this, and much of our improvement over the years (we now both function fairly well and live pretty active lives) is due to improving immune function. Immune System Abnormalities in ME/CFS provides an overview of how the immune system in ME/CFS is dysfunctional. And Immune Dysfunction in ME/CFS summarizes the three simple, inexpensive treatments that have helped us the most over the years, as well as a discussion of the importance of treating underlying infections. That post links to more information on inosine, low-dose naltrexone, glutathione, and more.

Finally, back in February, I wrote about my bad relapse that began in March 2020 (and lasted until two weeks ago!) and the immune issues my doctor found and some treatments recommended. I ended up getting the most benefit from a product called Transfer Factor Multi-Immune from Researched Nutritionals (we buy it directly from our practitioner, but I see a few places where you can find it online). It--like the three treatments I mentioned above--is also supposed to help normalize immune function, increasing Natural Killer Cell function and balancing Th1-Th2 (explained in the immune anbormalities post above), both very much needed in ME/CFS. It has worked well for me, and I think has been a factor in my long relapse finally ending. I started at 1 pill a day and gradually increased to 3 pills twice a day.

Experts' Recommendations

You can read advice from several top ME/CFS experts down toward the bottom of this Health Rising article. Many of them advise taking antihistamines like Benadryl or Zyrtec--that's to prevent an allergic reaction, as discussed up above and in the MCAS article I linked to.

Dr. Nancy Klimas, one of the top ME/CFS experts in the world, has recommended the following supplements, added every day, at least two weeks before your first shot:

N-Acetyl Cysteine (NAC) 600mg
Alpha Lipoic Acid (ALA) 300mg
Carnitine 1000mg (we take 1 L-Carnitine and 1 Acetyl-L-Carnitine - more info here)
Zyrtec (we get generic liquid gels (no lactose) or Benadryl start day before and continue for 3 days after

Everything listed here is aimed at one of the three areas I outlined above (detox, allergic reactions, and immune function), and as I said, any of these should help your ME/CFS!

There are lots of ways to increase glutathione (glutathione in pill form is not very effective). It's all explained in my post on Increasing Glutathione in ME/CFS. This will help with detox, improve immune function, and give you more energy.

My son and I were already taking all of these daily (for many years), except for vitamin C, so I added 1 g of liposomal Vitamin C daily for both of us (liposomal is better absorbed and less likely to cause stomach upset or diarrhea). I also normally only take Zyrtec at night, so I took it twice a day for a few days before my vaccine (see MCAS post).

And, my Lyme specialist also recommended increasing selenium for two weeks before my vaccine, so I doubled my normal dose. Again, I've been feeling really good, so I will probably continue the vitamin C and higher dose of selenium (after talking it over with my doctors).

And, after all that ... I got my first dose of the Moderna vaccine today! It was about 7 hours ago, and so far, I have no reaction or side effects. I am willing to put up with even 2-3 weeks of a bad crash; I just don't want to go into another long-term relapse, so I am hoping I have improved my chances of a good outcome. I feel like I have done all that I could that is within my control.

Remember, there are polls and groups where you can document and discuss your own vaccine experiences, so check those out.

Have you had your vaccine yet? If not--or if you still need your second dose--then I hope this information will help you.

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.



Unknown said...

thank you, Sue for this comprehensive post!! I was a little nervous to get my vaccine but happy to be recovering well so far, and I think it's in large part to doing a lot of these recommendations. I have had good success with Allegra and quercetin for managing allergy symptoms- I'm grateful to have not had any allergy-like reactions to the vaccine

Sue Jackson said...

So glad you found it helpful!! And thrilled to hear you did well with the vaccine. I'm almost 24 hours post-vaccine now and still no reaction at all, other than a slightly sore arm!

Oh, and we have found Quecertin very helpful for allergies, too!


Terry | said...

Excellent post, Sue! 💚🦋💚

Terry | said...

Excellent post, Sue! Thank you for sharing.
—Terry xx

Anonymous said...

Thanks for this series on Covid19 and the vaccines. It really helps to have it all laid out straightforwardly. I hope you have had your second vaccine and are doing great.

Sue Jackson said...

Thanks, Alisa -

Glad you found it helpful!

I am now fully vaccinated, 2+ weeks out from my 2nd shot. Pretty much back to baseline :) I felt fine for 24 hours, then really awful with pain and exhaustion for 24 hours, then about a week of just feeling low-energy, run-down. And now, pretty much back to my own "normal." My son just got his 2nd on Friday and is so far following this pattern exactly! Our ME/CFS has always been very similar to each other.