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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. Rachel Riggs

    Simmaron research start new rapamycin trial

    I got my Rapamycin through Healthspan.com. The bottle lists Dr. Reddy's (India) as the manufacturer and GoGoMeds as the US pharmacy who filled the Rx. I'm going to see if I can purchase direct as Healthspan charges $145 per month.
  2. Rachel Riggs

    Simmaron research start new rapamycin trial

    I plan to start at 1mg once weekly and titrate up, adding an additional 1 mg each week until I get to 6mg, or determine where the sweet spot lies.
  3. Rachel Riggs

    Simmaron research start new rapamycin trial

    I'm starting rapamycin tomorrow, along with an ME friend. We got the dosing schedule from someone who's in the study and I ordered it online. Fingers crossed.
  4. Rachel Riggs

    it seems ron davis may have a new potential treatment

    No, it must be studied via mass spectrometry. Naviaux has three mass spectrometers which each cost half a million dollars and 70k per year to service. Beyond that, the data it produces needs to be interpreted,
  5. Rachel Riggs

    it seems ron davis may have a new potential treatment

    @Aidan Walsh My response to Copaxone is one of the reasons I knew I DIDN'T have MS. Copaxone does not improve MS symptoms - its aim is to slow progression and number of new lesions. I always had a weak diagnosis, I had a couple lesions which disappeared over time. That can happen in people who...
  6. Rachel Riggs

    it seems ron davis may have a new potential treatment

  7. Rachel Riggs

    Could Copaxone Help Us?

    I'm sorry, I didn't get any lab work because this occurred before I even knew I had ME/CFS - I was still under the impression I had MS - and it was purely an accidental discovery.
  8. Rachel Riggs

    Could Copaxone Help Us?

    Also, it shouldn't matter, but for the record I only took Copaxone brand and never the generic version.
  9. Rachel Riggs

    Could Copaxone Help Us?

    That is not long enough - I did not have immediate results. I started noticing subtle changes about 6-8 weeks into it and NEVER missed a dose. The gains continued to build and eventually I was back at the gym two hours per day.
  10. Rachel Riggs

    Could Copaxone Help Us?

    Hmm, do you know how long they took Copaxone? Did they inject daily for at least 2 months?
  11. Rachel Riggs

    My ME is in remission

    Thank you, @toyfoof !!
  12. Rachel Riggs

    My ME is in remission

    @toyfoof I'm relieved to hear that a more conservative approach like yours may sometimes be enough. How would I pursue PT, heat and myofacial therapy when it's critical to find the right practitioner or there can be more harm than good? My neck issues all began thanks to PT on a frozen...
  13. Rachel Riggs

    My ME is in remission

    I have pretty severe stenosis at c-4-c7 too - I always assumed those levels were too far down to cause any problems other than the numbness I feel in my index finger. May I ask, what symptoms do you and your doc attribute to your stenosis? I am scared of having the surgery too :)
  14. Rachel Riggs

    My ME is in remission

    Thank you!!!
  15. Rachel Riggs

    My ME is in remission

    Thanks!! Would you happen to have a LINK to that thread?
  16. Rachel Riggs

    My ME is in remission

    @jeff_w What do we know know about stem cell options? Isn't there some place in CO doing stem cells for CCI?
  17. Rachel Riggs

    My ME is in remission

    @JenB When you had issues post thyroid surgery, I realized that my neck issues started immediately after 6 months of PT for frozen shoulder which involved some painful neck exercises. Since then I have not been able to lie on my back - I get an excruciating occipital headache with pain behind...
  18. Rachel Riggs

    Could Copaxone Help Us?

    Well, you'd be talking about a brand new drug then which does not have FDA approval and that would take many years to develop...
  19. Rachel Riggs

    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    Ultimately it was not the FDA or the CDC that prevented Naviaux from getting the drug, it was Bayer. They said no after a year of stringing him along. It's a good thing that he is no longer beholden to them. He's awaiting drug form a new manufacturer and it will never be a problem in the future.
  20. Rachel Riggs

    Could Copaxone Help Us?

    No, this is not specific to ME/CFS, but related - nothing to do with NIH.
  21. Rachel Riggs

    Could Copaxone Help Us?

    He was unable to get the drug from Bayer so began working with an investment group and a new manufacturer to produce their own Suramin. Soon, it will be readily available!
  22. Rachel Riggs

    Could Copaxone Help Us?

    We had hoped...
  23. Rachel Riggs

    Could Copaxone Help Us?

    Naviaux is visiting the NEW Suramin manufacturing plant next week. It's just a waiting game now, likely early-mid 2020 for the Suramin trials to take place. Once things happen they will move quickly, free of the previous barriers, and if all goes well could have FDA approval in 2 years. Per...
  24. Rachel Riggs

    Could Copaxone Help Us?

    I'm sorry, I don't have any more details on that, but I bet if more people pressed them to have a conversation about copaxone, they would tell us more!
  25. Rachel Riggs

    Could Copaxone Help Us?

    I think that would be AMAZING but I'm not sure how they would obtain a prescription for an MS drug...
  26. Rachel Riggs

    Could Copaxone Help Us?

    I did the standard daily 20mg subcutaneous injection with an autoject which makes it a breeze. It took 3-6 weeks to realize my stamina had improved. Copaxone is done as a self administered injection.
  27. Rachel Riggs

    Could Copaxone Help Us?

    I'm sorry, I do not remember all the speicifics but I was told I'm sorry, I don't remember all the specifics, but Naviaux told me himself that this was not done correctly.
  28. Rachel Riggs

    Could Copaxone Help Us?

    My understanding is that they did not try the right drug, dose etc.
  29. Rachel Riggs

    Could Copaxone Help Us?

    Suramin is potentially a cure, with periodic touch-ups needed, while Copaxone would require daily injections indefinitely. With the Suramin trials happening next summer, I am hopeful. But there is information to be gleaned from this copaxone connection, I just don't know who's willing to look...
  30. Rachel Riggs

    Could Copaxone Help Us?

    1) I did not have cognitive issues in my first years of CFS so I am not sure now that my brain is complete mush, if it would help in that way :) 2) I contacted Teva but I never heard back, I am sure they just assumed I'm a wackadoodle. Yes, you are correct, there are many reasons why they should...