• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I did not pulse but I know that is an option I should try when I test it again. Was happy to hear you are improved!
  2. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Greetings. I was the first member to post about the effectiveness of Rapamune (Sirolimus), prescribed by a Dallas oncologist. Update: I had amazing improvement (not total disappearance though) of all symptoms within a month of taking Sirolimus. No negative side effects, but after abou 6-7...
  3. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    @TreePerson I am so very sorry to hear about your struggles. I did also have some days off brain fog but was always temporary and and always worsened after stimulation or exertion, mental or physical. No I have not had any testing to confirm overactive immune system. Just anecdotally I noticed...
  4. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    @nandixon I started metformin in early 2000's but was not consistent with taking it. Took half dose most of the time because of gastro issues it caused. You mentioned age related decline in mito function. Total possibility, as we patients tend to get worse over time or develop other...
  5. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I still rate my body fatigue as the primary symptom. And the sirolimus def helped with that as well. I think the severe cognitive trouble does not kick in until we (or at least me) are generally in the "severe" category, which I was for quite some time this relapse. Perhaps only the severely ill...
  6. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Well technically yes, but I have no evidence of correlation. The rheumatologist (who really knew nothing and did not want to know anything about me/cfs) said his tests were more sensitive and sophisticated and he thought the previous positives were negative...
  7. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    HI @Jesse2233. Last appointment his PA promised me more information on the other patients - or at least to give them MY information so they could reach out if wanted - but even after 2 phone follow ups reminding her - nada. I will see Dr. in the next month and will really pin him down. This...
  8. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I believe it was my post on Health Rising as well as corresponding with a couple of members here that initiated this thread about the use of Sirolimus (Rapamune.) @Jesse2233 asked for an update so here goes. I am continuing to improve after 8 months use (2mg per day) with no noticeable side...