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    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

    Nandixon Can you pleaee give some idea of level od cfs you endure, onset, timeframe etc? Are you planning to slowly increase dosage? Thanks
  2. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Good luck. Keep us all informed please.
  3. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Pero I do not understand what you are trying to say. Are you saying rapamycin cannot and will not work? It is my understsnding that science is only at the tip if tge iceberg in understanding the effects of this drug.
  4. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I have had this condition severe since I was 14 after contracting chicken-pox and glandular almost simultaneosly. Requiring a long spell in hospital. I certainly couldnt judge rapamycin in a fortnight after having a condition for 36 years.
  5. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Very interseting Hip. I may try along wuth the metformin. I've spent the last couple of days trying to locate a reliable, cost-effective supplier of rapamycin. Have you chosen a supplier Hip? Are they India based?
  6. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Hi Is it possible for some kind soul to contact Marcia Adelman for s update in her progress or lack of it with Rapamune? She seemed to be doing remarkably well, but that was 6 months ago. Marcia Adelman
  7. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Yes, I have taken azithrompycin using the pulsing method at one 500 mg dose per day, for 3 consecutive days. It was too much for me to tolerate and after a while I had to reduce to 250. I would feel rough on the three pulsing days and immeadeately feel better the following 4 days. I feel that in...
  8. M

    Crashing after alcohol?

    Do as little as possible for as long as possible.
  9. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    What is more after years of researching ME/CFS and Gulf War Syndrome, in my opinion doxycycline is the only treatment to consistently show rapid improvement in symptoms in a subset of patients. It is not a cure snd it will not get you out of s wheelchair, but it has been shown to reduce...
  10. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    This is the reason I am going to try rapamycin first. Having suffered severe ME for 36 years, I have probably tried about 60 or 70 medications and about the same in supplements. The only thing to remotely ease my symptoms id doxycycline. Period. Doxycycline is known modulate the expression of...
  11. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Hip Like you, I will be cycling rapamycin, do will not be taking every day. With regular blood sugar testing we should have early warning signs. Is type 1 or type 2 more prevelant amongst rapamycin users?
  12. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    @rodgergrummidge I've been hunting for weeks to no avail.
  13. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Rodger I doubt there is a single person on planet earth that knows 100% the mechanism of true ME. So it is impossible to say, whether it will make the serious subset worse or not. But as someone has has spent most if his life life in the Whitney Dafoe category, I think it is worth a shot. As...
  14. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Yes metformin seems a sensible precutionary measure. I'm thankful for any info. Good luck. Without people such as yourself, I think I would now be devoid of hope.
  15. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Dont get me wrong, I would rather do without added long term health problems from heavy medication. Those of us who are severe have a very serious, soul destroying illness. No amount of vitamins or natural remedies will move the needle for us. This I know for sure. It is pointless me trying...
  16. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Hip I would appreciate it if you could update us on the costs of your rapamycin treatment protocol once you are in the swing of things.
  17. M

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Hip After suffering from severe CFS for 36 years, attempting a miriad of treatments and mutiple long stay hospital and care home admissions, I have concluded that I now have no alternative but to trial rapamycin, cyclosporine, cyclophodpmide and rituximab, probably in this order. I have come...