Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

debored13

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Learner1

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Yeah, big doses of bcaas are one of the few things that’s helped me at all. Although nothings really helped lately since I’ve gotten more severe and I’m more in a treating the symptoms mode , while I wait for my consult w neurosurgeon
Sorry, I haven't kept up. Did you get on IVIG and antivirals?
 

debored13

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Sorry, I haven't kept up. Did you get on IVIG and antivirals?
No , Susan Levine went back and forth on ivig for about a whole year. First saying she was willing to try t, then changing her mind, then saying oh we could try it. So no ivig. I should’ve given up on that earlier , tried to get a new doctor. She is very nice and good researcher but doesn’t have the follow up w long distance patients that I needed. I am very ill and can’t manage my care. Trying to switch to Mountain View clinic but need to get better enough to travel first. Oh and valtrex did nothing for me
 

ljimbo423

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Yeah it’s a good theory but their drug trial based on that theory failed. I’m not saying PDH is central but tt May be downstream of a different cause than they imagine.
I think the immune system is profoundly complicated and one drug is unlikely to work on inhibiting the immune dysfunction found in ME/CFS. There is still way more that researchers need to learn about the complexity of the immune dysfunction found in ME/CFS.

As they learn more about the immune dysfunction, I feel confident they will continue to zero in on the cause of it and treatments with that.
 

Learner1

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But in May I’m scheduled to see a pots-literate neuro who seems to have experience w/Eds, tests for cci, knows about exertion intolerance, and also is a fan of ivig, does thorough work ups for neuropathy and autoimmune stuff that may support the need
That sounds promising but far off. Any way you can get in sooner?

While poorly functioning mitochondria can definitely cause the immune system to go downhill, once that happens, it's hard to dig your way out. I tried a lot of excellent interventions, but went nowhere until my infections were addressed and I was on IVIG. I had a lot more positive response to Valcyte than Valtrex.

With immunodeficiency, infections can worsen and become tenacious and they can damage mitochondria, creating a vicious cycle. Then, if you push the gas pedal down in the mitochondria, you're just pushing a broken system faster, which is not a recipe for success.

Though I wish there were an easier way, supporting the immune system, ramping down any lingering infections, reducing oxidative and nitrosative stress, and then cleaning up the damage and repairing what's broken (including autoimmune problems that have proliferated , gut issues, etc.), will allow one to gain traction.

Until then, singular interventions, no matter how good they look on paper, are likely to be less than successful.

You might want to check your insurance requirements for IVIG...if you qualify under any of the categories (as I remember, you well might) any doctor can order it. (Of course, you'd want it ordered with proper support meds, which might include steroids, NSAIDS, and benadryl, to reduce side effects.) You could start on an immunodeficient dose, then as you get to the doctor who understands autoimmunity, he/she could up your dose.

It is tough managing all of this, when finding a helpful doctor is the first hurdle. But, one thing I've learned through all of this is to be solving the most impactful problems first, or else we waste prexious time and money on stuff that doesn't make a dent in the big scheme of things and prolong our misery...

Best wishes...
 

sb4

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I have had 1 gram Pyrucet (500mg ethyl pyruvate, 500mg ethyl aceatoacetate) with my last 3 breakfasts, not sure if it's effective as of yet, could be causing less palps and more hunger although the MCTs have been helping a lot with palps caused by carbs and I take MCT with breakfast only.

Just ate a bar of chocolate after tea now and took another gram, have mild palps now but not so bad, will monitor if they increase over next hr or so.

What I am wandering though is about taking big doses of ethyl acetoacetate, say 15 grams with food. That would be something like 3grams ethanol (???) and 12g acetoacetate. This would be close to supplying the same amount of acetyl CoA as 1tbsp (14g) of MCT oil, assuming the ethyl acetoacetate gets broken down into acetoacetate.

My problem with this line of thinking is, if it was this easy to supply exogenous ketones in the form of ethyl acetoacetate then why are supplement companies going to great lengths to create foul tasting exogenous ketone products in the form of ketone salts?

Also would the ethyl acetoacetate cause problems in this high of a dose?

Any ideas?
 

ljimbo423

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@Hip @debored13 @ljimbo423

I haven’t read much yet on ethyl pyruvate though I have some concerns regarding its depletion of GSH. Ray Peat and followers believe GSH levels can also be pathogenic, not sure what to say about that.
I don't really know much about ethyl pyruvate or it depleting GSH. I have never heard of pathogenic GSH levels.o_O
 

ebethc

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Your translocator protein studies test looks very interesting, @themjay: the fact your test results say they found stuck on to your translocator protein a "Large protein complex on membranes; Probably an immune complex".

So it appears as if your mitochondrial translocator protein is being attacked by autoantibodies.

Although I believe by definition, an "immune complex" is where an antibody binds to a soluble antigen (soluble antigen = a free-floating antigen, as opposed to an antigen that is fixed in position at some location). This then creates a free-floating complex of antibody bounded to antigen. Free floating immune complexes can get deposited in organs, as occurs in rheumatoid arthritis in the joints; though I don't know much about this.
are soluble antigens (free-floating complexes of antibodies bounded to antegens) undesirable? Or is the problem how our bodies react to them?

one of the most helpful supplements I've take is Wobenzym (and a competitor, Vascuzyme), which describes it's action as "breaking down immune complexes" ... I've never understood if a) this is why wobie helps me, and 2) why I have these immune complexes .... this article helps explain what might be going on...

this post is old, and I"m wondering if ppl have tracked results of this study over time and found this test to be an accurate reflection of the ebb and flow of their CFS symptoms..

thanks, Hip
 

Hip

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are soluble antigens (free-floating complexes of antibodies bounded to antegens) undesirable? Or is the problem how our bodies react to them?
I don't know much about immune complexes, but I believe they have pro-inflammatory properties, which is an issue.
 

Learner1

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are soluble antigens (free-floating complexes of antibodies bounded to antegens) undesirable? Or is the problem how our bodies react to them?

one of the most helpful supplements I've take is Wobenzym (and a competitor, Vascuzyme), which describes it's action as "breaking down immune complexes" ... I've never understood if a) this is why wobie helps me, and 2) why I have these immune complexes .... this article helps explain what might be going on...

this post is old, and I"m wondering if ppl have tracked results of this study over time and found this test to be an accurate reflection of the ebb and flow of their CFS symptoms..

thanks, Hip
I had a different Acunen test run in the coast, but have found the MitoSwab, paired with the Genova Diagnostics NutrEval FMV with Amino acids, can guide you to a robust treatment plan that works.
 

Hip

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It appears to block IDO. Was thinking about the metabolic trap theory someone wrote about previously.
Hmm..
IDO is the enzyme that helps create the neurotoxins quinolinic acid and 3-hydroxykynurenine:

Interferon gamma induces IDO ➤ IDO degrades tryptophan to kynurenine ➤ kynurenine is further metabolized to:
  • kynurenic acid
  • 3-hydroxykynurenine (neurotoxic)
  • quinolinic acid (neurotoxic)
 

debored13

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Got the ethyl pyruvate 'Pyrucet' today, but now I am scared to use it after reading this: https://www.ncbi.nlm.nih.gov/pubmed/20160032

It appears to block IDO. Was thinking about the metabolic trap theory someone wrote about previously.
Hmm..
But since it shows beneficial effects from this, perhaps Phairs theory is wrong? I don’t know. It doesn’t seem like anybody has had especially bad experiences with it. I am about to try it now
 

debored13

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I got a feeling of increased energy sorta similar to small t3 dose from pyrucet. At times it was almost a little uncomfortably stimulating but it does something. When something that is supposed to increase metabolism feels uncomfortable my instinct is to check my nutritional status. Also it burns the fuck out of my tongue
 

tiredowl

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But since it shows beneficial effects from this, perhaps Phairs theory is wrong? I don’t know. It doesn’t seem like anybody has had especially bad experiences with it. I am about to try it now
Maybe.. it is really confusing. But I'm guessing most of the people who have tried this on the Raypeat forum don't have ME. And If this metabolic switch theory is correct, tampering with it sounds kind of scary. Ron Davis did urge caution about experimenting with this pathway.

Hope it works, I'll post my experiences if I try it. I guess applying it topically should work as well
 
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