Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Summary of My Thoughts for What Might Work for Different Subsets

Discussion in 'General ME/CFS Discussion' started by boohealth, Jun 5, 2016.

  1. boohealth

    boohealth Senior Member

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    I was able to read some of the live tweeting from the conference, and have seen other news on facebook. Here are my thoughts on possible treatments for subsets of ME/CFS (I found it interesting that there is an ongoing trial, apparently, with IVIG and plasmapharesis, which I think could offer a functional cure to some cases, and I use IVIG myself in low doses--it can be surprisingly helpful, not necessarily in the doses required for other refractory auotimmune diseases).

    1) For autoantibodies directed against/affecting CNS: IVIG and plasmapharesis. See Sarah Mancuso's The Two Kinds of Decay for her recovery from a severe variant of Guillain-Barre where those two treatments plus steroids put her in remission for the last seven years or maye longer, she has a kid now. I've said for a while I think some cases can be framed as similar to Guillain-Barre, but CNS not peripheral nervous system. I don't know the results of the trial, but I was pleased to see there is one. I personally would take this approach over any immunosuppressant therapy, even though more trouble to the patient, it doesn't suppress arms of the immune system.

    2) What about glutamate toxicity? If you know the story of Howard Bloom, he was bedridden with severe CFS for years--with the typical stress response (he joked he could relapse from an episode of Golden Girls--too much stress even in the comedy). Couldn't tolerate the sound of a newspaper rustling in the next room. Etcetera. I won't go into the deets of his protocol but it was all (medically and lifestyle) to completely calm the burned out CNS--to drench them in soothing chemicals--think of a burned forest. He's totally well today. Can travel, fly, exercise, work, think. Think of small fiber neuropathy, where people are in screaming pain but it's due to sub-par function of the nerves. They are not firing properly. So they 'scream'. That might be the case in some nervous systems. So, what about ketamine in such cases? It has worked in refractory depression, where the neurons themselves need to grow out again. They've essentially (in lay terms) shrivelled from too much stress/toxicity. Has anybody with severe ME considered IV ketamine? You can find a few good articles online about how it works in severe, "suicidal", treatment resistant refractory depression.

    3) Biotin/thiamine. In both MS and basal-ganglia disease, there is current ongoing research that hypoxia or virtual hypoxia in the neurons/mitcohondria is the initiating/perptuating cause. High dose biotin has had remarkable results in progressive MS, and also in genetic, basal-ganglia disease. By improving energetics in the cell. By elminating the virtual hypoxia. Other B vitamins might be considered (per the long threads on this board, topical B2, and of course, folate and B12)--but specifically, I found it interesting that Whitney Dafoe doesn't make enough biotin or has a marker for deficiency/weakness. Some ME/CFS will actually suffer inborn errors of metabolism that manifested later in life as many IEM do, neurologically and psychiatrically, due to pressure on the already weak system. These can be classified as various types, and then fairly benign treatments tried. This includees a serious re-look at Marty Pall's work, as when there is hypoxia (functional, of any kind) NO builds up. But also it necessitates considering some ME from a neurologist's perspective, as due to IEM (see Saudabray, the pioneer in this specialty of neurology)

    4) Pursuant to the above, normobaric oxygen in animal studies where MS like lesions were induced, was preventive of the disease. Normobaric oxygen might help. Hyperbaric oxygen is a HORRENDOUSLY OVERLOOKED treatment--whether mild home chambers or clinic chambers--in all neuroimmune diseases. It's expensive, so people overlook it.

    5) Jarred Younger--sensitized microglia/leptin. Dietary changes to get all dietary sources of leptin out, and then, what do you do when sensitized microglia activate with small triggers? Here we get into something most people overlook, which is that our environments are toxic. Indoor environments are generally toxic. So if an ME victim can't handle light, sound, a shower, what makes you think they can handle the ordinary molds, bacterial vocs, offgassing toxins of 90% of homes? What about EMF, and then light at night, noise, pollution. I know many are too sick to get out into nature, but it is tremendously helplful to those who can get to fresh air and away from all these toxins. People really don't get how that lifts load. (That includes the crap in food--our food is just in terrible shape). This alone can improve someone by 25-40%, but most people don't want to believe it because it is so disruptive and it's not easy to get to a clean nontoxic home in a relatively cleaner environment.

    Thoughts?
     
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  2. Justin30

    Justin30 Senior Member

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    Just like Zika and Ebola these are triggering Autoimmune attacks on the CNS.....Untreated in many cases i feel is part of the long term sequalae of a damaged brain or brainstem.

    Bloom - used oxytocin and gabapentin to recover
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    @boohealth Very interesting and I am certain I am in the plasmapheresis and IVIG subgroup. Have tried everything I could think of to get the opportunity to try PP but it just is not done in the US and was a dead-end.

    So am now working on getting IVIG (autoimmune dosing) which I do believe will be approved, it's just a matter of time. And maybe after six months of IVIG, I want to try RTX. But will not be trying other immuno-suppressants which I feel are too dangerous.

    Main thing now is staying the course and believing that I will get the opportunity to try these things if I do not give up hope and have faith/patience.

    When I was injured by levaquin in 2010, there were docs who felt my injuries were similar to Guillain Barre and I only wonder if I'd done IVIG six years ago how I might be now. Am hoping it is not too late and I've now met two docs where I am the first person they've ever seen with my particular auto-antibody. It seems to be affecting my phrenic nerve and breathing and my arm muscles. I don't fit into any classic medical box which is frustrating.

    If I can knock the auto-antibodies down, maybe it could help my illness which is similar to ME/CFS but still different IMO. I'd love to be a test case and am not afraid. Am certain your ideas on different subgroups are on target b/c we are all so different.
     
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  4. Justin30

    Justin30 Senior Member

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    Where is this taking place? Is it in Germany?
     
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  5. Justin30

    Justin30 Senior Member

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    I think many at onset should be given IVIG to lower and counteract the high levels of ESR and CRP if there is brain or nervous system syptomology...
     
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  6. Gingergrrl

    Gingergrrl Senior Member

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    Yes, it's Professor Scheibenbogen's study at the Charite in Germany. There is nothing else like this anywhere in the world that I am aware of.
     
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  7. Justin30

    Justin30 Senior Member

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    I am highly bothered that these treatmwnts are mostly overlooked at onset when you tell a Dr my brain feels weird ot I have severe headache and numbness in different parts of my body.....etc.

    Now all it took was money into both Zika and Ebola and they found GBS, ADEM, PES and other neurological manifestations after an infection why the heck are they overlooking this when it is happening to people all over the US, Canada, Britain, Etc.....
     
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  8. Justin30

    Justin30 Senior Member

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    Results are mixed from what I understand?
     
  9. Justin30

    Justin30 Senior Member

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    I thought they did do this in the US? University of Phili where Paraneoplastic syndromes were discovered and the autoantibodies?
     
  10. boohealth

    boohealth Senior Member

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    And Valium. My point was ketamine might work similarly. If you look at the research and how and why it works. For a subset like Howard Bloom, where there is in essence a small fiber neuropathy of the CNS/brain, where the neurons cannot replenish, recover, or function normally but are suffering ongoing damage from small daily inputs or stresses, ketamine might be a very useful therapy.,
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I honestly have no idea about the results and thought it was still an ongoing study?

    They definitely do it for cancer treatments and have no doubt it is done at the place you mentioned above and others. But I have asked all of my doctors about it and none have ever done it and all said it is very rare and IVIG is the better option.

    The one doc I asked who has done it said it would be very temporary treatment as the autoantibodies would quickly come back and felt IVIG and RTX were better. So in my experience of N=1, PP is much more common outside of the US and not a common treatment here.

    I believe with enough patience and persistence, I will eventually get IVIG and RTX but not PP. maybe others have had different experiences?
     
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  12. boohealth

    boohealth Senior Member

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    But they would be mixed because this would work in a subset suffering from toxic auto antibodies. But not in everybody. That's the biggest issue. If you look at Saudubray's work on inborn errors of metabolism, even those need to first be classed (some are due to autointoxication due to buildup of a toxic intermediate, other due to deficiency of a co enzyme etc). So the big issue if you don't want a trial and error approach is classification so you know which subset you are in.
     
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  13. boohealth

    boohealth Senior Member

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    That's a shame. The auto antibodies eventually cease when you use PP and ivig in Guillain barre. In some cases its a mistaken information loop. The virus was a hit and run and the body keeps making the auto antibodies. But with enough treatment it finally self corrects.
     
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  14. boohealth

    boohealth Senior Member

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    Because these were clear outbreaks that were at first confined to geographical areas that were clear and because the symptoms were clear and horrifying. With ME it has been diffuse, worldwide, appears subjective, and has a diffuse history of onset, symptoms and progression. Much harder to get one's head wrapped around.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    Couldn't the autoantibodies cease from IVIG and RTX, too? I know PP gets them out very quickly but all my docs said that they then return very quickly, too, and that the procedure as offered in the US (plasma exchange) is pretty high risk. They all felt IVIG was much safer.

    It may be different in Guillain Barre where someone is dying and you need the autoantibodies out ASAP (which is not the case for me.)

    ETA: I would still actually try PP if I found a doctor who offered it to me but this is not the case. It really seems to be quite rare in the US.
     
  16. Justin30

    Justin30 Senior Member

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    What is never rally discussed in scientific literature is what happena when GB, ADEM, Encephalopathy that isnt that bad are missed and not treated.......this is what really bugs me...
     
  17. Justin30

    Justin30 Senior Member

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    @Gingergrrl IVIG and Rtiximab followed by a stem cell treatment and you will be like new!

    I just wish things would speed up a bit.
     
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  18. boohealth

    boohealth Senior Member

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    @Gingergrrl probably. I don't like immunosuppressants. I've seen what they do long term (usually rtx has to be given periodically). Have an online friend who lost her autoimmune symptoms (CFS, mcs etc- pretty severe) but while on these drugs has blimped up to obesity, lost all her teeth to infection, and had refractory c. Difficile episodes etc.
     
  19. boohealth

    boohealth Senior Member

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    Btw I was hoping to generate more concrete discussion here. I think the subsets above would cover a fairly substantial # of ME patients. I do agree ivig and rtx together is better than ivig alone and safer than rtx alone. But I was hoping people would be more intrigued by the MS work, and by Saudabray's work on IEM. I do think some ME will turn out to have been inevitable due to IEM and that some of those are fixable. About 15% of severe neurological cases that are due to unknown genetic IEM can be successfully treated.
     
  20. Justin30

    Justin30 Senior Member

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    Really....this was severe house/bedbound CFS patient?
     

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