The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second 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

    Messages:
    483
    Likes:
    630
    How long did relief from Rapamune take?
    I'm waiting for some to arrive and will start soon.
     
  2. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    It was right away for me. Like maybe a half hour? Maybe an hour? I had gotten out of bed and and then took care of some really important stuff that I was unable to do for 2 months. Boom.

    That Rapamune is an expensive drug.

    EDITED
     
    Last edited: Apr 28, 2017
    Sancar, Marky90, Aroa and 2 others like this.
  3. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    I'm going to talk to my GP really soon about possibly going down to Dallas to see the Doc down there, unless this doc up here thinks he can wrap his head around it enough to provide guidence, bloodtests and a script, etc. (I think It's a really bad idea to take prescription meds without a doctor's oversight. I just did it because I was desperate. And it's so hard to find a good CFS doc who's not thousands of miles away.)
     
    Last edited: Apr 28, 2017
    Sancar, Marky90 and Jesse2233 like this.
  4. eljefe19

    eljefe19

    Messages:
    483
    Likes:
    630
    That's amazing. I need relief and need something to hope in. Thanks.
     
    Jill, Marky90, Aroa and 1 other person like this.
  5. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    I forgot to mention that either the Rapamune or the Diamox helps with my otherwise intractable IBS-D. That's the trouble with taking two meds at once - I can't tell which is doing what. But I'm not willing to give up one of them just yet.
     
    Jill, Tunguska and Jesse2233 like this.
  6. Tunguska

    Tunguska Senior Member

    Messages:
    479
    Likes:
    439
    Thanks from me for clearing up the SIRT4 again. I'd misremember and the threads were huge, best I don't try to fill your shoes.

    I wonder further that perhaps Akt provides the skeletal symptom + more immediate relief, and it has impacts on immune response, but mTorC1 (I know I write it wrong, it's prettier this way) should provide exclusive immune modulation effects one way or the other. Proliferation is predominantly from mTorC1 and nothing will match its contribution. Similarly, I was under the impression B cell treatment wouldn't give relief very fast - but I'm not best informed on this.

    Then there's the distinction between getting relief specifically for the PEM vs other symptoms. Maybe this matters for the Akt vs mTorC1 question, maybe not. But I could imagine distinct role for mTorC1 in muscle PEM.

    My own preoccupation with having sufficient mTorC1 over course of days/weeks/months, has much more to do with repair processes and longer-term de-/re-generation, than relief.

    lol that wasn't necessary. Traditionally I'm poor at this. It's that the Akt/mTorC1/mTorC2/FoxO1-3/AMPK axis is more intuitive than other pathways, because it frequently mirrors at the cell level what the organism is doing, quite well, and it ties in to some dietary concepts. Unlike methylation where you can't tell left from right. I just happened to read about this in the past, and it conveniently became relevant again.

    That was fast. I usually had to take higher doses (600mg+) of ALA than that. But I have no idea how it interacts with rapamycin. There's a study on rapamycin + AiCAR and it had unexpected effect on the pathways.

    I forgot to point out in case people don't know, the mg amounts I mentioned to adreno were for Na-R-ALA which is for all intents and purposes (probably not exactly) twice as effective. But come to think of it, I need to check better the difference w.r.t. AMPK and Akt.

    Sorry to hear that, I thought you were doing alright. I can't say I feel that way because I have too many things I could try, just not enough room to work with. (with the exception of one symptom)

    I have bad IBS-D too. If you figure it out I would love to know.
     
    Aroa likes this.
  7. Steve4Andrea

    Steve4Andrea

    Messages:
    32
    Likes:
    82
    What is the conventional or even the un-conventional opinion on the use of immune suppressants like Rapamune in conjunction with anti-viral drugs. Does the suppressant action also suppress the anti viral action of the drug?
     
    halcyon likes this.
  8. halcyon

    halcyon Senior Member

    Messages:
    2,254
    Likes:
    5,279
    An interesting question and I was looking at this the other day. Rapamycin causes cell cycle arrest at G1. Activity of viruses such as enteroviruses are heavily dependent on cell cycle, and I thought I was on to something, but enteroviruses replicate very well in cells arrested at G1.
     
  9. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    I would guess it's the Diamox (acetazolamide), just with the timing of when I started taking it and when the diarrhea started to clear up. And also Diamox is a diuretic, so I think? that helps with diarrhea? But like I say, I'm not sure.
     
  10. wastwater

    wastwater Senior Member

    Messages:
    868
    Likes:
    505
    uk
    If rapamycin is bacteria could it be cultured at home cheaply
     
    XenForo likes this.
  11. knackers323

    knackers323 Senior Member

    Messages:
    1,248
    Likes:
    346
    hi XenForo

    have you ever taken any other macrolides, did they have an effect?

    i had very good improvement on clarithromycin and azithromycin within a day. and back to hell within a day of stopping. so its unlikely it was due to them killing anything.

    its known that macrolides have immunomodulatory effects but do you know if they effect mTOR?
     
    cigana and Mel9 like this.
  12. adreno

    adreno PR activist

    Messages:
    4,740
    Likes:
    9,908
    They do inhibit mTOR.
     
    cigana and nandixon like this.
  13. knackers323

    knackers323 Senior Member

    Messages:
    1,248
    Likes:
    346
    @adreno
    thanks mate. anyone know where to buy this online. sounds like a weeks worth should give a good indication
     
  14. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,201
    Likes:
    2,767
    @eljefe19 may know
     
  15. knackers323

    knackers323 Senior Member

    Messages:
    1,248
    Likes:
    346
    your a legend. thanks again
     
    Jesse2233 likes this.
  16. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    I don't remember having any macrolides, unless rifaximin is one ("worked" amazing! for one day.)
     
    Last edited: May 2, 2017
  17. dreampop

    dreampop Senior Member

    Messages:
    151
    Likes:
    362
    If anyone knows this Dallas immunologists doctors name, can you PM it to me?
     
  18. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    I cannot believe how well I've been doing. After lots of activity, I just need just a 15, 20 minute nap, then I'm good to go. That's new for me. Used to be once I got tired, I was done for the day, even if it was 9:00 am, and I'd have to go lie down for the rest of the day (very often.) I really hope this new trend continues; I'm going to be so so bummed if it ends.
     
    Mary, ScottTriGuy, Jill and 6 others like this.
  19. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,201
    Likes:
    2,767
    Great news! Hope it continues :)

    Has it helped other symptoms besides energy? Do you have autoimmune blood markers? Was your onset viral?
     
  20. XenForo

    XenForo

    Messages:
    48
    Likes:
    144
    Decision making is much much easier, mental fog has lifted quite a bit. I still have Raynaud's. Neuro mediated hypotension seems better, but not totally gone - I'm still wearing the compression stockings.

    I haven't had AI tests yet, but plan to ask the docs about it next visits. I printed out the Encephalopathy Autoimmune Eval from Mayo, just to get the conversation started and see what they say.

    The PA at Stanford Medical Clinic suspects it was viral onset from 1973 ish. Not confirmed.

    Oh, and my wife says I'm loads easier to be around. So that's nice. Oh and also, I'm more social, and not as reserved.
     
    Jill, Marky90 and Jesse2233 like this.

See more popular forum discussions.

Share This Page