• 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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Search results

  1. XenForo

    Anyone had luck with center for complex diseases?

    I started seeing one of the founders at CCD in 2018 to 2019 or 20. Insanely expensive, as we know. But worth it. They were able to mostly solve my lifelong brain fog issue. And I can't tell you how much that helped me out. Like jnat, I found them to be able to give me actionable plans, and to...
  2. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Dude, don't you mean Grapefruit juice? Or are you taking it with Grape Juice? I think it's grapefruit juice that increases its effect.
  3. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Rapamycin in the news: https://www.lifespan.io/news/pearl-is-funded-rapamycin-longevity-clinical-trials-begin/
  4. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I wonder if is rapamune responders would also respond to rituximab. They both help with rheumatoid arthritis. And doesn't rapamune attack b cells too?
  5. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Have you ever tried the on again off again dissing that seems to work Fort many of us, (including me?) It's weird, it seemed to "stop working" if dosed consistently, rather than pulsed or whatever it's called.
  6. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I did a quick google search, but didn't see a connection between rapamune and Leigh Syndrome. Are you thinking of something specific, or speculating? (nothing wrong with speculation, of course ;)
  7. XenForo

    How can we "stimulate" mTOR?

    Oh man that was a terrible idea. Won't be doing that for a while ;)
  8. XenForo

    How can we "stimulate" mTOR?

    Day one dropping the methylcobalamin, methylfolate and phosphatidylcholine lipids and I'm doing much much better. Wish everyday was like this. I wonder how many days it will last. I'll just have to see.
  9. XenForo

    How can we "stimulate" mTOR?

    Ahhhhh, it's been seeming like one or so meds are not working for me. I had a feeling methylcobalamin or phospholipids was it - mtor inhibitors seem to help me and maybe mtor stimulators ( like methylcobalamin or phospholipids) are working against me. I'll have to try omitting one mtor inhibitor...
  10. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Any rapamune responders try NAC, with or without Rapamune? It sounds like NAC is also a mtor inhibitor: https://www.ncbi.nlm.nih.gov/pubmed/22549432. (N-acetylcysteine reduces disease activity by blocking mammalian target of rapamycin in T cells from systemic lupus erythematosus patients: a...
  11. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    That's interesting; Low Dose Naltrexone helps me; I've never tried High Dose Naltrexone.
  12. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I am even better able to manage my MCAS via anti histamines, avoiding high histamine foods, and mindful ness exercises (which help immesurably). I have stopped the rapamune on the advice of my mountain view doc. (She is well and truly great, btw) She also referred me to anok gupta's amygdala...
  13. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Once been off rapamune for quite a while. Been managing symptoms by handling stress less stressfully. Working 6 hours a day, down from 8 or more on rapamune. Seems that for me, stress is the big driver of symptoms. I wonder if rapamune helps to lessen some stress response.
  14. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Ugh, I'm doing crappy again, and Rapamune isn't helping me. I've switched my other meds quite a bit. I wonder if one of the added ones is causing a change. Does anyone know if magnesium affects rapamune's affect?
  15. XenForo

    Stanford: Scientist identify the underlying cause of rheumatoid arthritis

    I'm a rapamune responder and I have to say that when I tried BCAAs (that was mostly leucine,) I just felt sick and quit it after the first try. Good luck with your exertion goal. Let us know how you do.
  16. XenForo

    Seeking information on long-term outcomes with Dr. Kaufman

    I don't have any experience with Dr. K, but Dr. C has been able to help me orders of magnitude more than any other doc I've seen in 30 plus years. She is competent and also she is professional and efficient. This is just my experience of course, and, like i say, i can't compare the two docs...
  17. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Just a super quick update: I'm working well over 10 hours a day, at a very very stressful place that I hope to get away from in the next year. I'm also going through a divorce and also unrelated litigation. Stress is usually one of the triggers that brings me down very very fast. I do have down...
  18. XenForo

    Experiences with DMARDS/corticosteroids?

    No. I've never taken it. However, I had an acth stim test and it seemed to give me a mini stroke like thing; i forget the name.
  19. XenForo

    Experiences with DMARDS/corticosteroids?

    I'm pretty sure sulphasalazine has been helping me for a few years. It just seems to lessen the symptoms. I had to increase the dosage to 1 gram 2x per day before it started helping me. That was a couple years ago.
  20. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    If no one else in this thread has MCAS maybe the MCAS stuff should be split into it's own thread? Any other Rapamune responders have an opinion about a possible relationship between MCAS and Sirolimus or other mTOR inhibitors?
  21. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I'll mention a couple things that I'm guessing are big clues to MCAS: I had allergy testing in the past (before going to Mountain View CCD) and I reacted to everything (or almost everything, I can't remember) except the control. I had lots and lots of vomiting between the ages of 1 and 2 or...
  22. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    It is so nice to have a skilled doctor I trust to help direct my care. It is so much better than desperately ordering drugs online without a doctor's direction. Anyway, here's what my doc is prescribing for my MCAS: Zantac 1 tab 2x day Zyrtec 1 tab pm Claritan 1 tab in am Hydroxizyne tabs...
  23. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    Wow, I'm doing MUCH, MUCH better on lots of meds for MCAS. I do wonder if Rapamune helps with MCAS symptoms. Any other Rapamune responders find out you have MCAS?
  24. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    The Center for Complex Diseases in Mountain View, CA diagnosed me with MCAS (Mast Cell Activation Syndrome) and my doc there thinks the Rapamune might have been helping to alleviate my MCAS. I've been doing much better on the MCAS drugs and have gone off Rapamune for now.
  25. XenForo

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Just checked my security settings and they are set to only allow conversations from "people I follow," which is weird. I don't remember changing it. I changed it back to allow conversations from all "members," so hopefully that's solved.
  26. XenForo

    My Experience With Dr. Kaufman at the Open Medicine Institute

    Not at all. I think this is a public forum, so I'll try to return my doc's professionalism by trying to be professional toward her and keeping info about her off the public net (unless she okays it.) So, yes DM is the way to go for questions about specific doctors, for me at least.
  27. XenForo

    My Experience With Dr. Kaufman at the Open Medicine Institute

    I don't have experience with Dr. Kaufman, but I go to the Center for Complex Diseases. So far, I have had great success with my doc at CCD. She has been able to help me tremendously, and presents as nothing short of super competent and professional. I am optimistic about my future because of...
  28. XenForo

    mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

    I was just thinking today that it seems like I'm more tolerant of the cold; I was diagnosed with Raynaud's. I'm curious if I'd also respond to the macrolide azthromycin; I wonder if other macrolides also help some of us - the ones who respond to sirolimus / rapamycin.
  29. XenForo

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    I recently got back from seeing the Center for Complex Diseases in Mountainview CA and the doc there is having me do a bunch of mass cell tests.
  30. XenForo

    Current Stanford / Dr Montoya / Dr Bonilla ME/CFS Treatment Protocol (November 2017)

    Wait, "nope" as in Montoya is no longer using Rapamune, or just no word on the status of Stanford's use of Sirolimus yet?