Friday, June 03, 2022

ME/CFS, Lyme & COVID: Relapses and Recoveries

I'll admit I've been procrastinating on writing this post because a) the cycle of relapses and recoveries kept extending, and b) well, it's complicated!

So, here I will simplify it as much as I can: what I've been through the past 2+ years and what I think helped me get back to my "normal" baseline (which isn't too bad, comparatively!).



March 2020 - I suddenly and inexplicably got worse. I'm still not sure exactly what triggered the relapse (I tested for COVID over and over since the timing was suspicious but had no sign of infection or even exposure back then). My best guess is that my Lyme got worse because I wasn't treating it effectively and caused a cascade of worsenings/relapse.

That relapse continued for over a year, though things very gradually improved, as I added new/revised treatments (see below).

May 2021 - I was finally feeling good again, after many treatments and a gradual improvement over many months--pretty much back to my "normal" baseline.

May & June 2021 - I got my two COVID vaccines. I chose Moderna because data showed it caused the fewest long-term relapses among those with ME/CFS. They definitely worsened my overall condition & symptoms again.

Late November 2021 - Once again, I had gradually improved (plus some treatments helped) and was back to my "normal" baseline again, able to be active and enjoy the holidays.

January 5, 2022 - I caught COVID at my father-in-law's nursing home, where they had a big outbreak (he and my son also caught it). I was severely ill--mostly bedridden--for about 3 weeks and then began showing small improvements, very gradually.

I continued to feel worse than usual for the next four months, though there was some very gradual improvement. I could tell my immune system was stuck in an over-active state because of heavy fatigue and constant flu-like achiness.

End of April 2022 - With my doctor's help, I tried a somewhat risky treatment, but it worked, and I returned to my "normal" baseline with ME/CFS and have remained there since, in spite of a very busy & active May.


Treatments That Helped:

So, what helped me get over these relapses and back to my normal (with ME/CFS) level of functioning? It's complicated. I am very analytical and greatly annoyed by unexplained worsenings of my condition! I am also relentless when it comes to trying treatments and finding solutions, so I tried a lot of things. Because I'm analytical, I keep a lot of data, so I have a pretty good idea of what helped the most.

As best as I can tell, these are the treatments that helped me get back to my normal baseline (which is quite good for someone with ME/CFS).

New and More Effective Treatments for my Chronic Lyme Disease:

Even before that relapse that began in March 2020, I saw signs that my Lyme disease was not well-controlled. My right hip was starting to hurt, which is a subtle sign I often don't recognize right away that the Lyme bacteria is shifting into other joints (usually, it affects my knees). So, when I suddenly got a lot worse in March 2020, my first step was to begin seeing my son's Lyme specialist. I hadn't seen a Lyme doctor myself in several years because I thought my Lyme disease was "under control." Ha! Now I know better.

The Lyme specialist immediately began adding new treatments and ramping up older treatments that I hadn't kept up. I brought her new research from Johns Hopkins on which herbals are most effective against Lyme disease (more effective that the prescription antibiotics usually used). She was already familiar with most of that, so between the two of us, we began adding lots of new treatments, including:

  • Restart A-L Complex (Byron White protocol, purchased from my Lyme specialist), which I had used off and on for years. She also advised me to increase the dose, up to 30 drops twice a day.
  • Add Stephania (used cautiously and at lower doses, as it can add to the effects of beta blockers, which I also take). I only took it for a few months.
  • Add Samento (Cat's Claw).
  • Add Biofilm Defense.
  • Add Japanese Knotweed (later, in early 2021)--one of the herbs determined to be most effective in that Johns Hopkins study.
  • Add Crypto-Plus (purchased from my Lyme specialist)

All of these treatments together--especially the increased dose of A-L Complex and addition of Knotweed--led to eliminating my Lyme symptoms and improving my overall condition, gradually.


Treating Reactivated Viruses:

It's an old story in ME/CFS--our immune dysfunction causes old, dormant infections to reactivate, especially herpes-family viruses, like Epstein-Barr Virus, HHV-6, CMV, HPV1, and others. 

In my case, testing showed that EBV and HHV-6 were--once again--very positive and reactivated, probably from the Lyme infection going untreated and triggering a domino effect of immune dysfunction. 

I also tested positive for adenovirus, which was curious because it's a common virus that normally causes a mild cold in healthy people but not something that typically pops up for me. This could also have been a contributing factor in triggering my long relapse--exposure to a simple cold virus. It has stayed in my bloodstream since then, so I avoided the J&J vaccine, which was based on an adenovirus.

For these ramped-up viruses, we added/increased:

  • Restart Famvir (famciclovir) and then replaced it with Valtrex (valaciclovir) a few months later--I take these prescription antivirals that work against herpes-family viruses every few years when mine get too active again. I'm still on Valtrex.
  • Add L-lysine, a potent herbal antiviral.
  • Increase doses of olive leaf extract and emulsified oil of oregano, two herbals that are effective antivirals, antibacterials (so help with the Lyme, too), and antifungals.


Diagnosed and Treated Hypothyroidism:

In early 2021, my Lyme specialist ran a full thyroid panel, and much to my surprise (because I get my thyroid tested pretty often), this time it showed low T3. She began treating me with a very low dose of Cytomel (liothyronine). Later, after repeat testing showed it was still slightly low, she increased the dose a bit.

I didn't necessarily see an immediate improvement in symptoms, but having a messed-up thyroid couldn't have been helping me. And I did immediately lose seven normally very hard-to-lose pounds!


Supported Immune System

In preparation for the COVID vaccines, I took the advice of ME/CFS experts and added some vitamins and minerals to further support healthy immune function. I was already taking most of the supplements they recommended, but I added/increased a few:


Increased Inosine

Finally, though this also falls under the category of supporting my immune system, I am listing it all by itself because it's really important.

ME/CFS is, at its heart, an immune disorder and most of our symptoms stem from that dysfunctional immune system. We have found three treatments that help to normalize the immune system (in addition to treating underlying infections) that have greatly helped to improve our conditions over the years:

Find more details on all of these immune system treatments, which are all inexpensive and readily available, in my blog post on Treating Immune Dysfunction in ME/CFS.

So, I was already taking all of these, but purely by mistake, I increased my dose of inosine in November 2021--I just miscounted the pills in my weekly reminder boxes one week! I simply went up from 5 a day to 6 a day for my "high dose" weeks (you alternate weeks with high dose and low dose), and like magic, after months of struggling, I finally returned to my "normal" ME/CFS pre-vaccine baseline.


Post-COVID Desperation and Steroids: 

So, I was already doing all of that above when I got COVID in January and went into another relapse afterward. For four months, I struggled with severely worsened fatigue, constant flu-like aches, never feeling good, and about 2-3 days a week, completely crashing so badly that I was couchbound or bedridden. I was also severely limited in what I could do.

Since this relapse was definitely triggered by my COVID infection, my ME/CFS specialist tried--and tried and tried--to get me COVID antivirals, but between limited supply and restricted use, I was unable to get them.

If you have lingering symptoms post-COVID (worsened ME/CFS and/or "long-COVID"), this should be the first thing you try: antivirals specific to COVID. There are two currently on the market, and they should continue to become easier to access: Paxlovid and Molnupiravir.

I did finally get molnupiravir but never had a chance to try it because by then, we had tried something else.

My constant flu-like achiness (like recurring sore throats or swollen glands or feeling feverish) told my doctor and I that my immune system was still in overdrive, over-reacting even though the acute viral stage was over. Given this, I asked if I could try a very short course of steroids, and she agreed. 

Steroids suppress the immune system, so they are usually not a good idea for those with ME/CFS (and definitely not long-term). Although parts of our immune systems are overactive, other parts are underactive, so suppressing the entire immune system is normally not effective for us and can do some harm.

The idea in this case was to try a very short course of steroids--just five days of low-dose prednisone--to temporarily calm down my immune system, with the hopes that when I went off it, my immune system would come back up in a more normal state. And it worked! Since then, I have felt pretty good (for me), back to my "normal" ME/CFS baseline and able to be more active again. And no more aches!

Steroids are not without risk, even when used short-term. They suppress your immune system, making you more susceptible to infection, so for that week, I was even more careful than usual, avoiding people and crowded places and wearing my mask even more diligently than usual. 

In addition, I had a very uncomfortable side effect: my normally high heart rate rose even higher. The first day I took prednisone, I woke from my nap (lying in bed), with my heart feeling like it was going to leap right out of my chest. That afternoon and evening, my heart rate--which is normally well-controlled with low-dose beta blockers--was 130 bpm lying down with my feet up! I contacted my doctor, and she quickly called in some extra beta blocker (just a small additional dose of what I already take) for me to take in the afternoons while on prednisone. That helped a lot.

Lessons Learned

So, all of this may seem very specific to me and my situation--and it is--but all of it is applicable to anyone with ME/CFS or long-COVID because these were all common problems underlying our disease. Some things that everyone with ME/CFS or long-COVID can try:

  • Diagnose and treat underlying infections--because of our immune dysfunction, we almost always have infections behind the scenes making things worse: undiagnosed tick infections (very common in ME/CFS), old reactivated viruses, yeast overgrowth, fungal infections (including mold exposure), and of course, in the case of long-COVID, COVID itself. All of these can be diagnosed and treated.
  • Check Endocrine Function--the immune dysfunction of ME/CFS messes up our endocrine systems, which are responsible for the hormones that regulate everything in our bodies. So, get a full thyroid panel (not just a screening test), check 24-hour cortisol levels (with a saliva test), and ask your doctor to check other hormone levels. 
  • Treat Immune Dysfunction--as I said, this is at the heart of ME/CFS and causes many, if not most, of our symptoms. Normalizing immune function will help to improve everything. More details on simple, inexpensive immune modulators (and also treating underlying infections) in my blog post on Treating Immune Dysfunction in ME/CFS.
  • If you are suffering from long-COVID or a lingering relapse of your ME/CFS due to COVID--ask for COVID antivirals, in addition to the other things listed here.
  • Effective ME/CFS Treatments--for a full overview of the treatments that have helped my son and I the most over the past 20 years (and the reason why these relapses didn't completely make me bedridden), see my Effective Treatments for ME/CFS post, for our experiences. 

As for me, I am happy to be back to my own "normal," still needing lots of sleep at night and a daily nap but with crashes rare now and able to take walks and do other active things again! I'm slowly regaining my stamina.

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Anonymous said...

Thank you Sue for your always helpful and informative posts!

Sue Jackson said...

You're welcome! Glad you found it helpful.

Grace Buchanan said...

Lightbulb moment: none of my doctors have been able to explain to me why my blood cortisol level stayed elevated off the chart when it was supposed to recover to (or near) my normal baseline level after my challenge test. Of course! You offered a reasonable possibility: "the immune dysfunction of ME/CFS messes up our endocrine systems." Thank you.

Sue Jackson said...

Grace -

That's actually quite interesting because ME/CFS is usually characterized by extremely low cortisol levels all the time (normal cortisol is high in the morning and then slowly decreases during the day to a low point at night when melatonin increases - the two hormones works together). So, yours was high after your exercise challenge? That's very interesting.