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Rapamune / Rapamycin/ mTOR

Discussion in 'Drug and supplement treatments' started by ScottTriGuy, Aug 27, 2018.

  1. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Discovered on Easter Island, rapamycin has a unique history and impacts the mTOR pathways in our bodies.

    mTOR is like a general contractor in sensing nutrients and regulating homeostasis in all cells.

    The chat touches on ME-related things like how mTOR senses ATP, keto diets, methionine, diabetes, longevity.

    Fwiw, I've been taking Rapamune, an mTOR inhibitor, since November. Its doubled my capacity: I can now walk up 2 flights of stair in a row.

    After hearing the Sabatini interview, I have reduced my daily 1mg to every other day.

    STEM Talk podcast: https://itunes.apple.com/ca/podcast/stem-talk/id1091402153?mt=2

    From the podcast:

    ...describes David Sabatini’s discovery of mTOR ...gives us a first-hand account of how his research into rapamycin in 1994 as a graduate student led him to the discovery of mTOR, which we now know is a critical regulator of cellular growth.

    Our interview with David delves into his continuing research into mTOR, which has led to promising opportunities for the development of new treatments for debilitating diseases such as cancer, diabetes and neurological disorders. He also discusses mTOR’s role in healthspan and lifespan.

    David is a molecular cell biologist who, according to Reuters News Service, is on the short list for a Nobel Prize. David is on the faculty at MIT and heads up the Sabatini Lab at the Whitehead Institute.

    In today’s episode, we discuss:
    Rapamycin, a macrolide antibiotic discovered in the soil of Easter Island David’s discovery of mTOR while a grad student at Johns Hopkins mTOR’s role as one of the major growth pathways in the body mTOR’s role as a nutrient sensor How mTOR inhibiton has become one of the hottest topics in longevity research mTOR’s role in diseases, especially its connection to cancer The role of RAG GTPases as key mTOR mediators Protein intake and downstream mTOR activation Research into ketogenic diets effect on longevity and healthspan Whether David would take rapamycin as a means to enhance his longevity And much, much more
    hinterland, LisaG, MEMarge and 5 others like this.
  2. LisaG

    LisaG Established Member (Voting Rights)

    My experience with Rapamycin. I started a few weeks back and would just like to share progress.

    Background: I've been housebound with ME/CFS for the past 13 years (diagnosed 2002). My main symptoms: fatigue, brain fog and sore lymph nodes (groin, under arms, and occassionally spleen).
    I am aiming to maintain the dose used for antiaging (5-6 mg taken weekly).

    Week 1 on Rapamycin: Possible lessening of lymph node pain? No significant change in ME.

    Week 2 : More definite lessening of lymph node pain. Pain returned as I came toward the day for my next dose. Possibly a little better generally.

    Week 3. Very little lymph node pain. My capacity beginning to improve.

    Week 4 and 5. No lymph node pain. And capacity increased. Still housebound but able to function longer. Also, it is usual for me to do 'mental/physical activity' before my usual morning routine because by the time I have had breakfast, dressed etc., I am exhausted again. Now I can do my morning routine and then sit down to some task. Haven't been able to do that for over a decade!!

    Week 6. Busy week at home and lymph node pain and fatigue returned. No words for disappointment! You'll know. I will increase the dose by 1mg and see what happens. Can't go any higher than that, though I would love to.

    Side effects: second day after I've taken the weekly dose, I get agitated. It passes but is a noticeable pattern.
    Possible concerns: Before starting treatment my lymphocyte count was below the normal range, so will need to keep an eye on that.
  3. LisaG

    LisaG Established Member (Voting Rights)

    Latest update on rapamycin/rapamune/sirolimus:

    I increased the dose but the lymph node pain and fatigue flared up badly afterwards.
    So, I am back to cold baths and using ice packs to calm down my immune system.
    Very sadly, I think my experiment with rapamycin is at an end.

    Possible reasons it worked initially and then stopped: a) it does exacerbate some autoimmune conditions and has some proinflammatory effects so perhaps it was triggering something in this way b) even anti-inflammatory effects make me feel ill* so perhaps this was the cause c) who knows???

    *Any med or supplement that is proinflammatory makes me feel terrible straightaway, but anti-inflammatories also make me ill, it just takes longer to manifest and the effect is less pronounced than with proinflammatories. I had hoped as rapamycin is immune suppressant that I could bypass all of this, but from my browsing of the literature it seems rapamycin's effect on the body is more complicated than I hoped
  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

  5. Creekside

    Creekside Senior Member (Voting Rights)

    The comments mentioned another thread about someone who benefited from it, but also a comment from someone who almost died from taking it.

    I remember coming across a list of treatments PWME have tried, and how they rated them. The results didn't seem all that useful, at least for trying to figure out which ones were really worth trying.
    alktipping, Louie41 and Ali like this.
  6. John Mac

    John Mac Senior Member (Voting Rights)

    There is the ME Association survey from 2010


    alktipping, LarsSG, Louie41 and 2 others like this.
  7. Hutan

    Hutan Moderator Staff Member

    Aotearoa New Zealand
    Trish likes this.
  8. Creekside

    Creekside Senior Member (Voting Rights)

    Yup, not very useful, especially since it's anecdotal evidence. My guess is that if they'd asked people to try magic crystals or random treatments meant for disease unrelated to ME, they'd come up with fairly similar numbers.
    Hutan and Art Vandelay like this.

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