The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

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

  1. eljefe19

    eljefe19

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    @XenForo i can relate to your last paragraph more than you know. I will be joining you on Rapamune as soon as (hopefully) today. Pray for me.
     
    Jill, Diwi9 and Jesse2233 like this.
  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Its a strong immunosupressor, I don think its allowed to sell online?
     
  3. eljefe19

    eljefe19

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    I have a source shipped from India if anyone is interested.
     
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  4. dreampop

    dreampop Senior Member

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    Checked. Did you have a sudden/gradual onset and constant or relapse/remitting symptoms?
     
  5. XenForo

    XenForo

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    Sudden onset. Relapse remitting, though it's never really "disappeared" for more than a month at one time.
     
    Last edited: May 2, 2017
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  6. XenForo

    XenForo

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    Argh. I was in bed all day yesterday afternoon and early evening. That day was a total washout. Today my armpit lymph nodes are sore, but I'm back to my new self again. That is a typical "bad" day experience for me (pre Rapamune.) Boo. Hiss. But good news that I rebounded so fast after just one day, and not a week or two months like last time.
     
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  7. Jesse2233

    Jesse2233 Senior Member

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    That's a good sign! Seems like Rapamune helped you recover more quickly
     
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  8. Jill

    Jill Senior Member

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    Does anyone know what metronidazole is - is it in anyway a macrolide. I do will on it and wonder how it fits in here
     
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  9. adreno

    adreno PR activist

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    One more example of a compound (cordyceps) which seemingly activates both AMPK and Akt/mTOR:
    They do write:
    https://www.hindawi.com/journals/ecam/2015/174616/

    Would this fit the bill?
     
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  10. adreno

    adreno PR activist

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    Also of interest is that cordyceps enhances AMPA receptor activity, which in turn activates BDNF and mTOR, an effect similar to that of ketamine:

    https://www.neuronootropic.com/cordyceps/
     
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  11. Tunguska

    Tunguska Senior Member

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    They didn't distinguish between mTorC1 and mTorC2, they don't even describe the measurement they used for mTor, so presumably it's one or the other. Some of their statements are strange. If simultaneous I'd think it'd have to be mostly AMPK/mTorC2, which I think might be an under-reported case more than anything. Not impressed by this study.

    That one is great information, thanks.

    (I haven't tried it and avoided mushroom extracts due to some being 5-AR enzyme inhibitors of varying strength... I don't know if this is; if not, I might try it eventually)
     
  12. AdamS

    AdamS Senior Member

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    Okay so i'm super confused. I thought mTOR was believed to be under-activated in ME/CFS patients and from memory Davis said in his video NOT to inhibit it...but according to this, inhibiting mTOR does the following:

    I realise that the context is different (Leukemic cells), but isn't this what we want and perhaps why Rapamune/Sirolimus helps?

    Oxidation of glucose under aerobic conditions results in 32 mol of ATP per mol of glucose but under anaerobic conditions, only 2 mol of ATP can be produced...the difference is huge.

    Maybe this is why alcohol (another mTOR inhibitor) helps me feel like a normal human again within around an hour.
     
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  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Toronto, Canada

    Yes, please.
     
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  14. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I would be interested in the info as well..
     
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  15. cigana

    cigana Senior Member

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    I also had spectacular rapid improvement on high dose azithromycin. Could never figure it out at the time but now I wonder about the mTOR angle.
     
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  16. adreno

    adreno PR activist

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    I think that info is wrong. Inhibiting mTOR should inhibit glycolysis.
     
  17. XenForo

    XenForo

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    Argh. I saw my GP and they advise against taking an immunosuppressant. I'm going to go off the Rapamune, and try a few less risky treatments recommended by my GP. No fun, but sounds like it might be the best course for me for now :( I'm not looking forward to the soon-to-come crash. Boo. Hiss.
     
  18. Jesse2233

    Jesse2233 Senior Member

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    Ah bummer. Why did they advise against it? Were you still having improvements?
     
  19. XenForo

    XenForo

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    Risk of cancer. It does make sense to me to exhaust other, less risky, options first. I don't have other obvious autoimmune issues going on, that we know of.

    I was improving greatly. Except for one crash for most of 1 day, I just kept getting better and better.
     
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  20. nandixon

    nandixon Senior Member

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    In these cancer cells, aerobic glycolysis is considered to be the process of (1) glycolysis followed by (2) the reduction of pyruvate to lactate.

    In order to obtain the 30+ moles of ATP you're thinking about, there must be (1) glycolysis followed by (2) mitochondrial respiration (an aerobic process), which means that the pyruvate from glycolysis is converted to acetyl-CoA which enters the Krebs/Citric Acid Cycle and drives the electron transport chain (i.e., the process of oxidative phosphorylation).

    In the study you quoted, rapamycin appears to do the opposite of what would be desirable in ME/CFS:

    So you can see that, assuming rapamycin performs the same way in normal cells as it does in the leukemic cells, then the use of rapamycin in ME/CFS would seem to be a complete disaster based on the Fluge & Mella study, which showed that not enough pyruvate was entering into the Krebs Cycle in the mitochondria due to impairment of the PDH complex.

    So either rapamycin must be doing something else that beneficially offsets that seeming disaster, or diversion of pyruvate away from the mitochondria is actually beneficial in ME/CFS.

    Other possibilities for why rapamycin might be beneficial include that perhaps a subset of people with ME/CFS are needing increased glycolysis (i.e., production of pyruvate) rather than increased mitochondrial respiration. Or perhaps a subset actually have an undiagnosed autoimmune disease for which rapamycin might be effective.

    One thing I'll be interested to see is if the subset of people with ME/CFS who find LDN (low dose naltrexone) helpful is the same subset that responds to rapamycin. (There also may be the possibility of a favorable synergy between rapamycin and LDN.)
     
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