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.
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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. Mary

    Mary Moderator

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    Citrulline and arginine can lower cortisol, leading to fatigue. This happened to me when I tried taking arginine in the morning a couple of years ago and within 2 or 3 days was quite tired - I had been expecting (hoping rather) for an energy boost. I had to stop the arginine and increase my adrenal glandular to get back to "normal".

    However, I'm currently trying citrulline at night before bed in an attempt to lower possible high nighttime cortisol (which can cause insomnia) and this is not leading - so far - to increased fatigue. So maybe time of day it's taken is important. But I've only taken the citrulline for a couple of days and am watching out for increased fatigue which might still happen. And I've read that citrulline malate especially is supposed to help with workout recovery but have not tried it yet
     
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  2. XenForo

    XenForo

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    I take 600mg NAC every morning, and 120mg magnesium glycinate at night. (I just take them because my Stanford doc tells me to.)
     
    Last edited: Nov 12, 2017
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  3. XenForo

    XenForo

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    I'm still not experiencing symptoms - day 9 of enjoying having a life.
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    That’s great @XenForo

    Thanks for the report @Hip, sorry it had an adverse effect, feel better
     
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  5. Hip

    Hip Senior Member

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    @XenForo, are you able to quantify the improvements you experience from rapamycin in terms of the ME/CFS scale of mild, moderate and severe? Where are you on this scale normally (without taking rapamycin), and how much movement up the scale do you achieve on rapamycin?
     
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  6. XenForo

    XenForo

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    I'd say I'm usually moderate. Recently I'd say I'm mild, but I haven't tried working full time yet, although I've been active at least 8 hours a day for the past week plus, so maybe I'm in the category of healthy for the past week plus.
     
  7. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    My functional medicine doc phoned me this morning to say my HIV doc sent him a note giving thumbs up for me to try Sirolimus off-label, so will start in a couple of weeks and post my experience.

    Excited, but tempered with the reality that not all of us seem to respond.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    @ScottTriGuy any updates on your rapamycin trial?

    Scoreboard of our other trail blazers

    XenForo - major response
    made_lman / Dallas patient #1 - major response
    Ken Lassesen blog reader - major response

    Dallas patient #2 - positive response of unknown degree
    Dallas patient #3 - positive response of unknown degree
    Dallas patient #4 - positive response of unknown degree
    Dallas patient #5 - positive response of unknown degree

    perovyscus - discontinued

    @nandixon - pending (any updates?)

    eljefe19 - major response stopped responding
    Hip - no response
    steve4andrea - no response
    Montoya Reddit patient - no response
    BadPack - no response

    so far 7 out of 13 report response
     
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  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Only 4 days so far, but yesterday I walked for about 25 minutes (way more than my 10 minute ceiling) but about an hour later my blood seemed to be pooling in my abdomen (as it does from walking, pretty sure its an orthostatic intolerance thing) for a couple of hours - spent 30 minutes of that being horizontal on my office floor to help recovery.

    So I'd say no response yet.
     
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  10. nandixon

    nandixon Senior Member

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    I can report a somewhat similar experience to @eljefe19, I think.

    I started at 1 mg per day and I initially had about a 30% improvement in energy (within 24 hours of starting it), but this gradually disappeared (beginning after about a week or so) and I was never able to recapture it even with a number of different dosing strategies over several weeks. And when I re-tried it after a break of 2 or 3 weeks it made me feel worse.

    It's important to note that, from what Marcia (@made_lman) said on the other forum in her original posts, that the implication is that the other Dallas patients have other comorbid diseases (autoimmune or cancer) as their primary diagnosis, so I would discount those.

    I would therefore think in terms of a possible success rate for rapamycin in ME/CFS at more like 3 out of 10, at best, so far. And both Marcia and @XenForo may have unusual relapsing-remitting forms of this disease.
     
  11. XenForo

    XenForo

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    I'm still doing really well, although I still lose a day here and there, spending that "lost" day in bed.
     
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  12. nandixon

    nandixon Senior Member

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    Were you able to get the Buy-Pharma product to work as well as the Goldpharma?
     
  13. XenForo

    XenForo

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    It's subtle, but I'd still say it doesn't work as well. It's hard to tell, since I've been doing so well. I think I might be biased because the Buy-Pharma stuff tastes sweet like sugar, which makes me feel like it's fake (so it's hard to be objective about it.)
     
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  14. JaimeS

    JaimeS Senior Member

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  15. JaimeS

    JaimeS Senior Member

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  16. used_to_race

    used_to_race

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    Thinking of trying this myself. Was wondering about a couple things. First of all, are you still responding?

    The other thing is this: I had a few months of illness back in 2015 that I believe were an earlier manifestation of my current CFS. During that time I took several antibiotics, under the doctor's assumption that I had chronic strep (what a moron). The only one I responded to was azithromycin, which has a lot of similar properties to rapamycin. I want to compare the prospect of taking each azithromycin and rapamycin. Would one be a lot more risky than the other? Is either a particularly risky thing to try? My inclination is to say not really, but what do you all think? @Hip @nandixon
     
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  17. XenForo

    XenForo

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    Yup, still responding.
     
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  18. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I've been on Rapamune for 7 weeks and have had improvement:
    - greatly decreased seborrheic dermatitis on my face and head
    - can walk twice previous distance on flat ground (now 30 minutes)
    - can walk up 2 flights of stairs in a row (only 1 previously)
    - sleeping better
    - less night time urinating
    - better toleration of the cold

    I also previously responded to azithromycin during my second bout of ME.
     
  19. JAH

    JAH Senior Member

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    I’ve been on rapamune for 5-6 weeks, 1 mg. First week was half dose.

    I could tell that I was taking something for the first few days, but since then I’ve noticed no change- good or bad. I could be taking a sugar pill. Weird for me because I’m usually very sensitive to medication. Honestly, my assumption was that I’d feel worse. (I have the negative placebo effect working)

    My case is severe.
     
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  20. JAH

    JAH Senior Member

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    P.S. just an addendum to say that my appetite has increased, dont know if it has anything to do with rapamycin, but my stomach has been s@#t, so happy with any improvement, coincidental or not.
     
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