Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Endotherapia (GEMSP) as a customized treatment for ME/CFS?

Discussion in 'General Treatment' started by Jesse2233, Jun 4, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    I discovered this while researching novel autoimmune treatments. It's another one I haven't seen discussed on PR, though it's mentioned alongside Rituximab in this paper from Molecular Neurobiology as a potential treatment for ME/CFS. Early trials have shown good results in MS (1), ALS (2), and RA (3) without toxicity. Followup showed continued benefit in MS patients (4)

    Endotherapia is a subligual tablet with a blend of fatty acids, antioxidants, aminco acids, and radical scavengers customized to one's immunological blood work, brain imaging, and symptoms. It's delivered via poly-L-lysine (which allows for better cell permeability). The end result is a reduction in oxidative stress and inflammation, and an improvement in neuroprotection.

    I can see this treatment fitting in well with the "refill the tank" step of Dr Naviaux's proposed 3 step protocol.

    Endotherapia was developed by professor Michel Geffardat at the IDRPHT in France.

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    Here is a breakdown of the ingredients used in Endotherapia by disease. The first article suggests using the MS preparation (GEMSP) for ME/CFS. I imagine it would be further customized based on the individual.

    upload_2017-6-4_18-29-36.png

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    More on Endotherapia

    From "The Emerging Role of Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/cfs)"
    And "Endotherapia: A New Frontier in the Treatment of Multiple Sclerosis and Other Chronic Diseases"
    -------------------
    An ALS patient who traveled from Australia to France for the treatment reports good results:
     
    Last edited: Jun 5, 2017
  2. Murph

    Murph :)

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    I am positive about this idea to the extent that it looks low risk, has some data in support, and it is in its infancy.

    The data cited in that paper look decent:

    In an open clinical MS trial (phase IIa), 22 sec-ondary progressive-phase patients were treated with a
    sublingual formulation over six months; in that trial, 55% of the patients became stabilized or their EDSS(Expanded Disability Status Score) was decreased (18%), instead of the normal progression of the disease,
    and only 27% of the patients followed a normal disease progression (i.e., increase in the EDSS) (Mangas et al.,
    2010)


    But when I go looking for reasons to be skeptical, I find a couple quite quickly.

    E.g., the Australian woman you cite has had to stop posting online due to the progression of her disease. Before that, she wrote this:

    I’ve been on the medication from France now for virtually 9 months and at first I was expecting that if it was to work, it would work across all fronts – slowing or even stopping ALL deterioration and at best even leading to some repair and improvement.

    After 9 months I can see that there are (so far) “mixed results”. Some things have improved; some things have stayed much the same and realistically, some things have sadly continued to deteriorate, though it seems at a much slower rate.

    There’s no doubt that the overall rate of deterioration though has slowed, and I have less muscle pain/spasms which help with better sleep. It’s definitely been beneficial. I’m pleased and relieved. Still very hopeful of an eventual cure.

    It is of course unclear if the disease would have progressed even faster without treatment. It is also unclear if the treatment might work for MS but not MND.

    The other thing that raises questions is that most of the research comes from one researcher. One to keep an eye on though!
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Good points @Murph

    It's too bad she worsened, though with ALS that's not unexpected.

    Doesn't seem like endotherapia is likely to be a cure, but it can perhaps be a supportive bridge that works in conjunction with other treatments. And like you said, it's nice that it's low risk.

    To contexualize it in a treatment protocol:

    1. Remove the trigger: Rituximab or Rega Compound 17

    2. Refill the tank: Endotherapia and various metabolites determined by metabolomics

    3. Flip the switch: Suramin or another anti-purinergic therapy
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    Jesse, am confused what endotherapia actually is? Is it a custom made sublingual tablet or some other mechanism? Also where would someone get it from? A naturopath (ND) or mainstream doctor? Am trying to understand what it is?!
     
  5. Jesse2233

    Jesse2233 Senior Member

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    It took me a while to figure it out too, the studies don't make it very clear. It's a customized sublingual with various nutrients based on your blood work, brain imaging, and symptoms. It has a special delivery mechanism that gets the nutrients directly into the cell.

    Right now the only person who's providing it seems to be the French professor who developed it. I have reached out to him to see if it's available for purchase.
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Interesting and keep me posted if you learn anything more!
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    Will do!
     
  8. boombachi

    boombachi Senior Member

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    Hampshire, UK
    It makes a lot of sense to me but my understanding of science is non existent so that doesn't mean a lot. @Jesse2233 please tag me if you hear anything from the french professor.
     
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  9. Jesse2233

    Jesse2233 Senior Member

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    You got it!
     
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  10. Jesse2233

    Jesse2233 Senior Member

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    @boombachi @Gingergrrl

    heard back from the professor today

    he's requesting a sample of my blood to see if I have the autoantibodies against neo-epitopes he's identified and offering to let me try the sublinguals

    I'm intrigued but cautious, does anything see a possibility for adverse effects from what I've posted?
     
  11. perrier

    perrier Senior Member

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    Please keep us posted, and if you have the prof's website, address, please post. Merci.
     
  12. Jesse2233

    Jesse2233 Senior Member

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  13. Gingergrrl

    Gingergrrl Senior Member

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    @Jesse2233 Thanks for tagging me and I want to re-read this whole thread later from home before I give an opinion!
     
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  14. Philipp

    Philipp

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    Is cholesterol-pll-oleic a potential lxr-agonist or do they just have similar names? Sorry if I am mixing something up, bit foggy right now, but I believe there was something about sterol-derived stuff being a ligand in your lxr thread...
     
  15. Jesse2233

    Jesse2233 Senior Member

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    Good question, not sure but I'll look into it
     
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  16. Jesse2233

    Jesse2233 Senior Member

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    @Philipp i can't find anything specific about LXR and chlorestorol-pull-oleic but since sterols are broadly agonist of LXR there's a possibility it would be
     
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  17. Jesse2233

    Jesse2233 Senior Member

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    @Jonathan Edwards in your opinion does this treatment have a basis to address autoimmunity?
     
  18. Gingergrrl

    Gingergrrl Senior Member

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    I've read through it again to refresh my memory but am afraid I just don't know enough about this to give you an opinion. I have no idea if it could help or have adverse affects! But keep me posted if you learn more.
     
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