Treating myalgic encephalomyelitis with little information

Myalgic encephalomyelitis is a complex disease, likely the most complex known by several magnitudes. The symptom list is massive. Looking for clustering at the patient level finds a vast array of sensitivities that makes one plan for everyone impossible, but even a dozen plans are improbable to be sufficient. Typically, A helps one, A hurts another and A does nothing (except reduce the pocket book) for a third person.
A reader wrote with a concern for the person she is caring for.
“she’s doing so badly, she’s so weak, I must change something. I think I’ll keep her on triphala (she’s still herxing) but slowly bring back some of her natural antibiotics which I’d taken her off completely – berberine, turmeric rosehip tea, neem, star anise etc and judge what’s right by if she’s still herxing. Would you do that? “​
I want to answer it by describing major subsets of issues that ME patients may have – and possible strategies for each:
  • Histamine Issues
  • Salicylates issues
  • Thick blood issues
  • D-Lactic acid issues
  • Gluten issues – which can occur with supplement fillers
The Gotchas – doing the wrong thing…
I’ve been involved with the ME community for about 20 years and seen a lot of fads, trends and a few successes. Too often the same concept gets tried, retried and retried again in the community with the same result — no result.
The following are from interactions that I have had with various people over these years
Histamines
Many probiotics are histamine producers. Taking an random probiotic may make things worst. For more reading:
Real example: a reader asked why with my flare that I was taking Enterogermina instead of MegaSporeBiotic which contains the same species and several more. The reason was simple: my ubiome results showed an 50% increase of histamine producing bacteria, so I wanted to avoid adding any more histamine producers.
Histamine issue may be due to over population of:
  • Proteus mirabilis, [ref]
  • Streptococcus pneumoniae [ref]
  • Klebsiella pneumoniae (also produces lactic acid) [ref]
This of course suggests reducing them — with anise and other herbs (see ref above for each)
Salicylates issues
See Salicylate sensitivity for some background. This can mean that something like aspirin that could assist with thick blood, may make things person. This also applies to many herbs and spices that are effective against some bacteria or blood thinning.
This deselects a lot of items and tend to increase the importance of probiotics, minerals and non-herbal supplements.
Thick Blood Issues
First, thick blood issues can be tricky because there can be many different coagulation mechanism involved. Doing too much of the wrong thing can result in easy bleeding and bruising (I have gone there). Coagulation: Thick Blood Supplements for CFS. Possible actions can be split into three types:
  • Prescription: Heparin (sublingual — under the tongue, seems to work as well as injection for ME)
  • Salicylate free supplements (not plant based):
  • Salicylate risk
    • Aspirin
    • Grape Seed Extract
    • Turmeric
    • Cucumin
    • Boswelia Gum
    • Bromelain
D-Lactic acid issues
This is usually impacted by probiotics as well as dairy consumption. Lactic acid is not produced only by lactobacillus, but also
Leuconostoc mesenteroides and Pediococcus. See:
Overgrowth of Lactobacillus, Leuconostoc, Pediococcus, Lactococcus and Streptococcus, Carnobacterium, Enterococcus, Oenococcus, Tetragenococcus, Vagococcus, and Weisella. [src] can contribute.
What to do?
The key factor is not to create fog on what is happening by ingesting the kitchen’ supplement cabinet. I would start by assuming histamine issues, lactic acid issues and salicylates issues. This leads to two sets of things to test for response (ideally one at a time for 2 weeks):
What to try next? Hopefully, you have uBiome results by the time you are done above and can then use the microbiome prescription site to see suggestions. I would divide the items suggested into similar groups and do things from one group at a time. You may not be aware of some of the issues until you isolate yourself from the triggers for a week or two (i.e. eliminate all salicylates for two week – do you feel better).
Remember, every person’s path to remission and relief is likely unique.

Comments

Lassesen, thanks for writing up this post. :)

In case you don't have this reference,

The FailSafe diet helps with lowering the amines, salicylates, glutamates, and other naturally occurring food chemicals (also avoids preservatives, additives, etc.) I also avoid oxalates, FODMAPS, and nightshades.

Here is Emma Davies' blog write-up on the FailSafe diet, aka RPAH (Royal Prince Alfred Elimination Diet):

http://www.failsafediet.com

and here is Sue Dengate's website about Food Intolerance:

https://www.fedup.com.au

Hope this helps someone. :)
 
likely the most complex known by several magnitudes. The symptom list is massive. Looking for clustering at the patient level finds a vast array of sensitivities that makes one plan for everyone impossible, but even a dozen plans are improbable to be sufficient. Typically, A helps one, A hurts another and A does nothing (except reduce the pocket book) for a third person.
I agree completely. I always clinch my teeth when someone starts out a statement with, "You just need to try..."
 
"E. Coli is a histamine produce"

Does this mean E Coli probiotics like Symbioflor 2 increase histamine?
 

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