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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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Apr 6, 2017.

  1. Jesse2233

    Jesse2233 Senior Member

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    Rapamune is an immune suppressing drug used in preventing the rejection of kidney transplants. It inhibits activation of T cells and B cells by reducing the production of IL-2 by suppressing the mTor pathway.

    From the comments section of a Health Rising article

    This is counterintuitive to the latest research. Perhaps Rapamune's immune suppressing effect outweighs its mTor inhibition.

    Also this is the same drug that a doctor used to cure himself of Castleman's disease.

    Has anyone ever tried Rapamumr or have any ideas on what this might mean?
     
    Last edited: Apr 6, 2017
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  2. Jesse2233

    Jesse2233 Senior Member

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  3. eljefe19

    eljefe19

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    Interesting find, and totally expected IMO as our theories' seem to get totally flipped on their heads consistently. My totally uneducated and non scientific guess is that by disabling B cell and/or T cell activation that it's interrupting a feedback loop that involves B cells and/or T cells and mTOR. There was talk in one of the mTOR threads about this B cell dependent feedback loop involving mTOR but I can't remember which thread exactly. One thing I found was that Coxsackievirus B3 can infect B cells to produce IL-10 and through this mechanism the virus is able to persist. Perhaps these patients are feeling better from either B cell autoantibodies being tampered down or their latent viral co-infections are being treated by suppressing B cell activation. Then there's the whole T cell exhaustion theory that @halcyon has been researching. I'm tagging him for discussion here as well.

    I gotta say, I'm not above trying anything for this disease, but mTOR inhibition is certainly one of the more treacherous roads to go down, based on what we think we know. 5 patients as you know is not a big sample size, but I don't like to discount anecdotal reports either. Any idea Jesse what the cost of Rapamune is?
     
    Last edited: Apr 7, 2017
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  4. Jesse2233

    Jesse2233 Senior Member

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    Yea strange isn't it? The B-cell mechanism seems to be a good hypothesis. Interesting finding on the CBV3 IL-10 mechansin

    About $28 a pill
     
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  5. eljefe19

    eljefe19

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    By the way guys, this is the study linking CVB3, IL-10 and B-cells.

    $28 a pill sounds about right for most of the meds out there to treat CFS. I'll do some sleuthing for a cheaper source.

    @Jonathan Edwards I'd like to get your opinion Professor on the above study. CVB3 is thought by some, Dr. Chia mainly, to be a causal factor in CFS. Assuming this a subset of patients, could this tie a potential causal factor of CFS together with B-cells, and explain some patient's success with Rituximab?
     
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  6. wastwater

    wastwater Senior Member

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    I like this,I always felt I could understand my condition as the side effects of IL-2 my only concern was do I need that much IL-2 is it doing something that's needed or is it a fault and ok to tamp it down
     
  7. drob31

    drob31 Senior Member

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  8. eljefe19

    eljefe19

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    So Rapamune is just straight up Rapamycin, the quintessential mTOR inhibitor. @Jesse2233 any thoughts of trying it? I sourced it on alldaychemist, $600 or so for 3 months. Do you have any sources related to it's action on B cells?
     
  9. Jesse2233

    Jesse2233 Senior Member

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    Hmm my thought is that perhaps all mTor inhibitors and activators are not created equal, and maybe benefits and risks are more nuanced
     
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  10. eljefe19

    eljefe19

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    Indeed. mTOR controls a ton of shit, and pathogens can and do hijack it. I'm wondering now what it is about Rapamycin and B cells that could have possibly caused these patients to feel better. I'll try to find some papers.
     
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  11. wastwater

    wastwater Senior Member

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    Think I saw on wiki it comes from a bacterium found on Easter island
    Quite a few articles out there on this
     
    Last edited: Apr 10, 2017
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  12. Matthew Jones

    Matthew Jones Senior Member

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    This sounds interesting I hope we can find more info on other people who have tried this!
     
  13. eljefe19

    eljefe19

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    @Jesse2233

    Found the following quote after skimming this lengthy paper;

     
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  14. Jesse2233

    Jesse2233 Senior Member

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    Nice find, would be interesting to know how its B cell treatment parallels Rituximab.
     
  15. eljefe19

    eljefe19

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  16. ljimbo423

    ljimbo423 Senior Member

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    United States, New Hampshire
    This is purely anecdotal, but I have been taking berberine for about a week now, and Berberine is a mtor inhibitor. link I have worked my way up to 300mg a day and feel a big improvement in my health.

    I am taking it for SIBO and I think that's where most of my benefits are coming from. If it is as they say, a mtor inhibitor, it hasn't done me any harm whatsoever, in fact it's been a great help. I have read the metabolomics study saying that mtor is already inhibited in cfs. So it don't really make a lot of sense to me, but it is really helping me a lot!
     
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  17. Jesse2233

    Jesse2233 Senior Member

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  18. XenForo

    XenForo

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    It's just been 1 day, so I'm not sure if it's related, but I just started Rapamune (Sirolimus) and I feel much much much better. Finally spent most of the day out of bed. I'll try to update how I'm doing over time. If I don't, it's because Rapamune is working and I'm busy getting stuff done. haha.
     
    Last edited: Apr 19, 2017
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  19. Jesse2233

    Jesse2233 Senior Member

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    That's great @XenForo !

    any other details you can share?
     
  20. XenForo

    XenForo

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    I don't want to get too excited, because I just started Famvir (replacing Valtrex) recently and I also felt great right away with the change to Famvir, but it didn't last more than a day and a half. That was dissappointing, and I'm not sure if Rapamune will be similar, although I feel better on the Rapamune than I did on the first day of Famvir. We'll see how it goes on Rapamune in the next few days.

    EDIT: Day 2 now and it still seems to be working.
     
    Last edited: Apr 20, 2017
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