Virus caused ME/CFS

ME/CFS has many causes, a very common cause are virus (in the case of Long COVID, the COVID virus).

Back Story

A quick summary of my story: I got ME/CFS after two viruses about a month apart in late 2016, when I was 27 – one upper gastrointestinal and one upper respiratory. After struggling to work for a couple of months after my body eventually gave up and I had to be signed off sick, and then eventually let go. I haven’t returned to any work since. I would say I am at the moderate end of the spectrum – able to socialise outside of the house on occasion as long as transport isn’t too strenuous, but not well enough to do things on a consistent basis, with obviously lots of rest all the time. Since then I’ve been on a journey seeing various doctors mostly to no avail, although not for a few years now. 

My main symptoms now: 

  • Fatigue
  • Muscle weakness 
  • POTS
  • Unrefreshing sleep 
  • Various mild / moderate pain
  • Very prone to overheating / sweating

I take 40mg Duloxetine once a day, ostensibly for nerve pain although it has helped significantly with my overall energy levels and wellbeing, moving me from severe to moderate from when I started taking it a few years ago. 

It’s worth pointing out that over the course of my illness I have tried several probiotics and things suggested with the gut. These are as follows (if I remember correctly): 

  • Optibac
  • BioKult 
  • Generic acidophilus probiotic 
  • GI Synergy antimicrobials
  • Yakult (more on that in a minute) 

Every single one of these has caused these symptoms of varying severity: 

  • Increased blood pooling 
  • Sore throat 
  • Flushing
  • Fatigue
  • Disorientation 
  • General malaise 

So in general I have stayed away from things to do with the gut because of these bad experiences. Yakult is actually something I stopped only recently – I read your blog post about d-lactate and given it’s so cheap and easy to get hold of decided to give it a go. I would say that while the other probiotics caused those symptoms almost on the first or second dose, with Yakult it took a lot longer to set in. I took it for 3 weeks before I finally realised that I was at the same place symptom-wise as the others, it just took me much longer to get there. A shame as it i was a low-cost and easy thing to try. They’re obviously all doing something! Just not what I’d like, haha. 

Review of Back Story vs Microbiome Sample

Filtering by reported symptoms yield just two bacteria, both low: Lactobacillales and Natronincola. Suggestions were Barley, Oats, whole grain diet, {Reishi Mushroom},Slow digestible carbohydrates. {Low Glycemic}.

I did the simple suggestions option since the number of symptom matches to symptoms prediction was low. We found 43 bacteria out of range. None of the following probiotics were on the recommended list: Optibac, BioKult, Generic acidophilus probiotic, GI Synergy antimicrobials, Yakult

Going over to KEGG Computed Probiotics Report, we have these being the top one

Working down the list we have:

  • Lacticaseibacillus rhamnosus
  • Lactiplantibacillus plantarum
  • Limosilactobacillus reuteri – On main suggestion list

Since economics is cited, I would suggest ordering one bottle of each from Maple Life Science. They are direct from factory to retail customers; ships world wide; no shipping costs. Cost per bottle is around $9

  • Limosilactobacillus reuteri
  • Lactiplantibacillus plantarum
  • Lacticaseibacillus rhamnosus
  • Bacillus Subtilis

For the other ones, see how you react to these first. My usual suggestion is one capsule for ONE of these on the first day, increase according to your reaction. If adverse reaction, move on to the next one. Once the bottle is empty, go to the next one.

Personally, my own ME/CFS experience favors Mutaflor — but it created a massive herx for 2 weeks; so I tend to suggest moving it to the very end.

Other issues

I have no information on Duloxetine impact on the microbiome. Other suggestions have many familiar in treating ME/CFS over the last 30 years. The include:

Unusually, B-vitamins are not high on the list. If you take them, keep to Vitamin B1,B2 and B12.

Going over to the Food Site we have these nutrients at the top

The first one, Resveratrol, is found in fresh grapes in the supplement form is not desired. The second one is mainly in raw Chicory . The third one is found in Black elderberry (and a small amount in Pomegranate). The fourth item, (-)-Epigallocatechin, is found in Green/Oolong Tea and Broad Beans. The next one, Cyanidin 3-O-xyloside, is mainly in Black chokeberry (and a small amount in Blackberries). Hesperetin is found in Lime and Oranges (not orange juice). Resistant starch is in Broad Beans, Lentils and Peas. Syringaresinol is found in Rye (i.e. whole 100% rye bread) and the Swedish Cloudberry (likely out of season now). Diosmin is found in Hyssop (I tend to buy it as a supplement).

As a FYI, my regular “ME/CFS preventative” diet is usually heavy in grapes or Resveratrol (depending on season and price); 100% Rye Bread; Broad Beans and Lentils; Hesperetin and Diosmin.

Questions And Answers

  • Q: The herx / die off stuff do you have any guidance on that? What I meant was: given my adverse reactions to any probiotic I have tried – whether that’s on the same day after initially taking, or eventually building up after several doses – how can I tell the difference between a reaction that’s bad and should cease taking it, or supposed “die off” symptoms, if you see what I’m saying. Basically how to tell the difference between stopping needing to stop taking a probiotic due to the symptoms its producing, or pushing on, and seeing if it tails off. Does that make sense? 
    • Your question makes a lot of sense. I have done a few posts on that:
    • A short version for probiotics is this:
      • If the adverse effect is ongoing 18 hours later, it is likely an adverse reaction or feeding bad bacteria. Many studies find that some probiotics are not detectable after 24 hours (not true for all of them).
      • The duration of the reaction should be decreasing each day. You should feel a little better after the effect ebbed each day. Often, there can be a quick ending of the reaction. If it increased or do not change, it is likely an adverse reaction or feeding bad bacteria.
  • I have improved the Lookup Modifier Page to flag what a probiotic is impacting. You need to break a mixture apart and examine it parts. Most of his probiotics were mixtures containing L. Acidophilus. Note that Sutterella is in common with both

Postscript – and Reminder

I am not a licensed medical professional and there are strict laws where I live about “appearing to practice medicine”.  I am safe when it is “academic models” and I keep to the language of science, especially statistics. I am not safe when the explanations have possible overtones of advising a patient instead of presenting data to be evaluated by a medical professional before implementing.

I cannot tell people what they should take or not take. I can inform people items that have better odds of improving their microbiome as a results on numeric calculations. I am a trained experienced statistician with appropriate degrees and professional memberships. All suggestions should be reviewed by your medical professional before starting.

The answers above describe my logic and thinking and is not intended to give advice to this person or any one. Always review with your knowledgeable medical professional.