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Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/CFS

Discussion in 'Latest ME/CFS Research' started by deleder2k, Dec 22, 2016.

  1. Eastman

    Eastman Senior Member

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    Joseph Cohen put it this way:

     
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  2. lansbergen

    lansbergen Senior Member

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    With the infection I suspect autofagy is beneficial but to much autofagy worsens it.
     
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  3. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    I have high-normal Tregs and react horribly to probiotics... So I am more than curious: what symptoms do you get? In me: From a single small dose of whatever probiotics or live sauercraut I get chills or some flue-like issues that can last for days or even weeks. I did some tests but never found out what it is. No mast cell degranulation (tryptase normal) and no CRP or ESR elevation.
     
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  4. Sidereal

    Sidereal Senior Member

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    Flu-like reactions and mast cell degranulation issues. Also a decrease in gastric motility, full blown gastroparesis at times.
     
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  5. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    thanks. Similar here, except for mastcell-degranulation (though, symptoms would fit that too, but tryptase normal). But I am really curious how you relate your symptoms to Tregs and IL-10: Have you tested probiotics to raise these? What could be the mechanism? Thanks!!

     
  6. Sidereal

    Sidereal Senior Member

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    There is a literature out there on Clostridium butyricum (for instance) that it pushes IL-10. This supplement was great for me initially but triggered really serious problems long-term. I don't want to go too far off-topic on this thread.
     
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  7. JaimeS

    JaimeS Senior Member

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    Maybe we should split the thread. I've also had very similar reactions to probiotics. tried half a dozen before finally finding Dr Ohirra's, which seems to help GI symptoms without inducing immune symptoms. Not sure why... it's not a matter of the symptom improving. If I try the other ones again, same result.
     
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  8. eljefe19

    eljefe19

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    I found a number of Probiotics that boost IL-12, TNF-a and lessen IL-10. Just gotta look in the research and you'll find them.
     
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  9. antherder

    antherder Senior Member

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    From what I've read, tryptase is often normal in MCAS, but elevated in mastocytosis, so you could still have mast cell issues. (Someone please correct me if this wrong.)
     
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  10. enduin

    enduin

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    Have you guys who reacted poorly to probiotics ever tried Mutaflor? When I was at my worst with IBS and was reacting badly to probiotics (including Colostridium Butyricum), Mutaflor was the one I tolerated well and it greatly improved my IBS.
     
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  11. Solstice

    Solstice Senior Member

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    Mutaflor was decent for me for a while, then became hell. Tired but wired all night, without sleeping. Vivomixx seems to be allright for me now.
     
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  12. enduin

    enduin

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    Sorry to hear that. Are you sure it was the Mutaflor? The tired-but-wired thing is something I've been occasionally getting for a while, way before I started Mutaflor and it's a pretty common CFS symptom. Mutaflor does stuff that the other lactobacilli and bifido probiotics don't do, so it's a shame you can't take it, but if you don't tolerate it, well there's no way around it...
     
  13. Solstice

    Solstice Senior Member

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    100% sure yeah. The symptoms died down quickly after I stopped taking it. My bifido went up from 0,01% to 8,51% without me taking any probiotica btw, just antibiotics at that time. Now i'm in vivomixx, which is good for now if i not overdo it. 1 satchel a day.
     
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Does anyone else think that most things are best avoided in excess/long-term due to the risk of overdoing them? I seemed to have such a good result from my mix for a year or so (can't be sure for how long at present as having a lot of trouble sussing things out), then it all went horribly wrong.
     
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  15. AdamS

    AdamS Senior Member

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    Are there any other ways to reduce PDH enzyme inhibition? Would PDK1-PDK4 and SIRT4 inhibitors of some description work (by unblocking/reducing PDH dysregulation to an extent)? Apologies i'm not the most technical but it just sprung to mind :)
     
  16. mango

    mango Senior Member

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  17. kangaSue

    kangaSue Senior Member

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    @Lolinda Tryptase levels are often only elevated with Mastocytosis. I was looking to fit MCAS into my own situation of GI dysfunction only to realize recently that the GI tract produces a lot of your mast cells and with any sort of dysmotility or inflammation, the gut is a source of mast cell activation
    https://www.ncbi.nlm.nih.gov/pubmed/21497195
     
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  18. Lolinda

    Lolinda POTS + after meals, I need to lay in bed for hours

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    Hey guys, thank you so much for all your replies!

    Reading your suggestions about MCAS, I went through the symptom list. Damn, this is the mysterious disease that resolved in me!! (almost). So I reply to you with
    1. symptoms
    2. what I did to get rid of them
    3. what still gets worse

    1. symptoms I had (based on wikipedia MCAS):
    • Dermatological
      • pale complexion
      • itchiness
    • Cardiovascular
      • none of the listed ones... (but I still have POTS - could it be related to MCAS?)
    • Gastrointestinal
      • diarrhea, cramping, intestinal discomfort
      • Swallowing, throat tightness
    • Psychological & Neurological
      • brain fog, short term memory dysfunction, difficulty with recalling words (still an issue, but improved)
      • headaches
    • Respiratory
      • congestion, coughing, wheezing
    • Vision/Eyes
      • ocular discomfort, conjunctivitis
    • Constitutional
      • general fatigue and malaise
      • food, drug, and chemical intolerances (especially fragrances)
      • sense of being cold all the time (this one I still have, though, better)
    • Musculoskeletal
      • osteoporosis and osteopenia (still there)
    Chemical intolerance was so so bad in me that a single scented candle in the other end of the room, not burning (!) was enough to 'kill me'.

    Very interesting!! @Sidereal and @antherder taught me the name of the illness, you @kangaSue taught me that poor motility is a cause. Thanks❣❣❣

    2. Now what did I do to get rid of these symptoms?
    - Very low carb diet. Going low carb was not enough. Going keto improved things, going very low carb beyond that, really zero starch (but lots of veggies) helped.
    - Dozens of things to improve motility. I refused drugs. I did: meditation, belly fondling, voluntary belly muscle moving, running, deep relaxation, manual pyloric release, ileocaecal valve massage, improving posture, yoga stretching exercises, increasing introspective sensitivity, self-acupressure, increasing motility by breathing techniques, chewing bitter herbs raw ...

    3. What still gets worse

    In spite of resolution of nearly all MCAS symptoms, extreme flu-like issues after probiotics got worse and my methylhistamine too: 6.6 (< 6.5) µg/nmol creatinine in 2011, 7.5 in 2016.
    My suspicion is that the MCAS pathology remained and worsens still....? :( :( There is this not-so-friendly sentence on wikipedia: "...many can experience a general worsening trend over time." How about you guys? Trends?

    Same here.

    @JaimeS and @Sidereal and anyone else worrying (very rightfully!) about driving this thread off-topic: I already asked for moderator's help to split this thread. It was refused saying that they are so overloaded that they cant even do the most essential things for PR. ... :( :( :( That's sad news... Anywise, I am more than impressed how they can handle workload as a mod, being sick themselves! Looking at ourselves here on the thread, however, there is no point in pointing to any single person or post in some search of culprits why a thread runs off-topic ... it would be just as ridiculous as pointing to a water molecule "why did you cause a wave??". It simply needs mod's help. Kill me for saying this if you want, but if help in splitting threads isn't available, I feel its better to run off-topic than to lose precious posts. Hey guys, you diagnosed me! You outperformed 6 immunologists I consulted, 2 of them professors!!

    @JaimeS your comment made me recall that yes, there is a probio, Lactoferment, which I do tolerate. Maybe this is because Lactoferment contains only dead (lysed) bacilli?
     
    Last edited: Apr 17, 2017
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  19. Eastman

    Eastman Senior Member

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    @Lolinda

    You could perhaps start a new thread and quote/link to the relevant posts here to continue the discussion.
     
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  20. kangaSue

    kangaSue Senior Member

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