• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. E

    Thoughts on Antivirals and M

    “The therapeutic regimen tested in this study was designed to suppress tissue-resident herpes viruses. The famciclovir + celecoxib combination (IMC-1) was intended to provide aggressive antiviral activity against herpes simplex virus 1 (HSV-1), interrupting the cyclical process of virus...
  2. E

    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    Hi there, @Hip, so glad to see that you are, as always, a few steps ahead of me! Hope you are as well as possible these days. Did you ever try dipyridamole? Do you remember what dose you considered? It's next on my list. I found this article that got me curious, but I can't remember your...
  3. E

    Acute Corticotropin-Releasing Factor Receptor Type 2 Agonism Results in Sustained Symptom Improvement in Myalgic Encephalomyelitis

    I wouldn’t read too much into that. They are notoriously pessimistic. Nothing is ever promising In their eyes. This is just a tiny, preliminary study. Bateman wouldn’t waste her time if she saw no promise IMO.
  4. E

    Chronic Microglial Activation in ME/CFS, And Its Possible Treatment Using Microglial Inhibitors

    Yes, this was a great read! I did a review of it, https://9gurus.com/how-microglia-brain-cells-contribute-to-chronic-illness/
  5. E

    Clinical Trial: IV Albumin for Severe POTS

    I let this potential treatment go for lack of information back in 2018, but am considering it again, as some recent reports have indicated that it is helpful for a wider variety of immune conditions. I wonder if anyone else has tried IV albumin in the meanwhile? From what I can tell, it is...
  6. E

    Blood Flow & ME/CFS

    I am thinking of trying albumin IVs and came here looking for patient experiences...I know there is a clinical trial running using albumin for POTS, plus all the recent research showing benefit by using albumin to dilute the plasma in neurodegenerative diseases etc. I'd love to chat with anyone...
  7. E

    Methleyene blue

    I have it on my list to try after listening to this episode of STEM talk recently with Dr. Francisco Gonzalez-Lima, Dr. Francisco Gonzalez-Lima.
  8. E

    Neural Reset Therapy eliminated fibromyalgia pain

    It's not neural therapy (which I have also had) but neural reset therapy. No needles involved!
  9. E

    Dr Robert Rowen on ozone therapy and coronavirus

    https://9gurus.com/does-coronavirus-have-a-soft-underbelly-leaving-it-vulnerable-to-simple-treatments/
  10. E

    Book about metabolism

    https://smile.amazon.com/Navigating-Metabolism-Navdeep-Chandel/dp/1621821293/ref=sr_1_1?keywords=navigating+metabolism&qid=1582552590&sr=8-1
  11. E

    Could Copaxone Help Us?

    I will post any future updates to my experience with glatiramer on this thread at Health Rising, for anyone who is interested.
  12. E

    Keto debunked.

    Ketosis is a normal metabolic state. How much any one person wants to rely on it for fuel is a personal choice. Given that it makes me feel as close to normal as I've felt in a decade, so I'm happy to be in ketosis most of the time. I follow a plan based on the Wahls diet that has me eating up...
  13. E

    Could Copaxone Help Us?

    First shot today, no problems to report. I'll be cured tomorrow, here's hoping! It sounds like glatiramer may also be inhibit microglial cell activation as well. That would be interesting too. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3478150/
  14. E

    Could Copaxone Help Us?

    I did, and do! Will do. :)
  15. E

    Neural Reset Therapy eliminated fibromyalgia pain

    Yes and no. I had my first episode of illness at 18, precipitated by mono and was sick for a little more than a year before I "recovered" enough to live a fairly normal life, although with a far greater amount of fatigue than my peers. I marched on pretty happily for about a decade before...
  16. E

    Neural Reset Therapy eliminated fibromyalgia pain

    Here is the response:
  17. E

    Bad experience with keto

    Experts in the field suggest it can take up to 6 months for someone with metabolic problems to fully adapt. This was my experience as well. The 3-5 days business is for healthy people who still have some degree of metabolic flexibility. I don't understand how metabolic flexibility could ever...
  18. E

    Neural Reset Therapy eliminated fibromyalgia pain

    Yes, that's basically it. He will have me resist against him while he moves what he is working on. Sometimes there is tapping with the little hammer or a massage vibrator. He works on hundreds of different muscles, depending on the person, and each one has a different release procedure. Yes...
  19. E

    Neural Reset Therapy eliminated fibromyalgia pain

    No, I don't They have held at 80-85% since the first treatment. I could have never gone again after the first treatment or two and still been pleased, these months later, with the results.
  20. E

    Neural Reset Therapy eliminated fibromyalgia pain

    The pain in my lower back, the pain in my psoas, the pain that kept me from sitting cross legged in my knee, and the coathanger pain in my neck and upper traps, specifically. I washed my dog the other day, bent over her in the tub and realized that I had no pain in my lower back for the first...
  21. E

    Neural Reset Therapy eliminated fibromyalgia pain

    I can't believe I forgot to mention this part, but the treatment has also completely changed how my lower left leg feels as well. I got hit by a motorcycle when I was crossing the street in 2001 and broke my tibia and fibula. Since that time, my lower leg was mostly numb, especially where the...
  22. E

    Neural Reset Therapy eliminated fibromyalgia pain

    I've had just about every kind of bodywork/massage therapy imaginable, so I went to my first Neural Reset Therapy appointment with Lawrence Woods heavily skeptical about anything changing with regards to the chronic pain that I have experienced for so many years. Over the years, I have...
  23. E

    Bad experience with keto

    People seem to have this idea that higher levels of thyroid hormone are always better and that lower levels (or increased levels of RT3) are always worse. The problem is that the body is not that simple and there are other factors to consider. We don't really know what optimal thyroid...
  24. E

    Could Copaxone Help Us?

    So the glatiramer arrived over the weekend...but they didn't include the starter kit with the autoinjector. Grrr! CVS specialty is the worst .
  25. E

    Studies find HHV-7 active in ME, yet ME Drs often don't test for it & Valcyte doesn't work for HHV-7

    Almost! I can't remember the timeline exactly anymore but I did about 20 IVs, each two weeks apart. So that would be about 40 weeks or 9 months.
  26. E

    Could Copaxone Help Us?

    I am not sure that this is true. If you can have a doctor willing to prescribe off label, and have insurance that covers it without asking for a PA (they are rare but do exist!), it should work pretty easily. Your typical GP on the corner doc in a box is not likely to be helpful, but...
  27. E

    Earth Pulse experiences?

    It worked out well for Cricket! She has avoided surgery and no limp, knock wood. I am better overall in general but I would have a really hard time attributing some percentage of that to EarthPulse (though it is certainly possible it contributed). I still sleep with it on every night and I...
  28. E

    Chronic Microglial Activation in ME/CFS, And Its Possible Treatment Using Microglial Inhibitors

    Looks like ouabain, which I widely (perhaps erroneously?) credit with resolving my POTS symptoms also works on this NaV1.8 channel. I did not notice an effect on pain with it though. Hmmm.
  29. E

    LED red intranasal light therapy

    I’m sorry, I don’t. I sold it. :(