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

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  1. Peggy

    Panel and Q&A after Unrest at Hampshire College, Feb, 2019

    Dr. Lynch terminated me as a severe ME/CFS patient with complicating Lyme (secondary to severe ME/CFS) because I am such a severe patient and he felt that was too complicated for him to deal with as one of the 25 percent patients, and as he said in his very abrupt termination letters (the first...
  2. Peggy

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Joey, Shark liver oil seems to help keep my WBCs up (they are frequently low) -- I read about it as a treatment for low WBC in a book about HIV/AIDS. Peggy
  3. Peggy

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Thanks Sushi for that additional info. Okay well I'm going to stop freaking out about the Lyme and coinfection recurrences unless I get a lot worse. Right now it's really tolerable, I'm mainly mentioning it because the infections were nearly lethal for me, so I can't afford to have a...
  4. Peggy

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    Hey Ann, I am on meds for bartonella, which has been my worst infection (taking Rifampin -- have been for over 3 yrs), but stopped the antibiotics for Lyme and switched to herbs a couple of months ago (after 3.5 yrs on antibiotics). I was staying stable on the herbs. So if it's just a herx...
  5. Peggy

    GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?

    I have done two GcMAF shots so far, and I'm having Lyme, babesia, and bartonella symptoms -- but I'm a little nervous because I also was outside on my deck and near my deck on a couple of warm days (in a very Lyme-intensive area), and I'm worried I might have gotten another tick bite and that...
  6. Peggy

    does anyone feel better when they dont eat?

    I'm intrigued by the fact that so many others share this symptom. Same for me -- I feel better when not eating. However, I definitely have a strong appetite. But when I don't eat and get to a good tummy growl, I tend to have more energy and more cognitive acuity -- it's just about the only...
  7. Peggy

    Article: NK Cells/African Sleeping Sickness,Tyrosine and ME/CFS: A Professor and his Wife

    I have taken tyrosine quite a lot for significant periods of time and did not find that it alleviated my ME/CFS symptoms, but rather elevated my mood and that was about it. However, I do have a question for you: I think parasitic infections may play a role in some of the hypersensitivity...
  8. Peggy

    Antiretroviral Trial

    AZT and mitos/heart I hope I'm not repeating myself, but I wanted to ask if you had done any mitochondrial testing (Dr. Myhill's Acumen tests, or the metabolic analysis profile test) or heart testing (i.e. impedence cardiography, 24-hour Holter monitoring to see if you have Lerner's...
  9. Peggy

    Severity of ARV side-effects vs severity of CFS

    In the early 90s, when I first got sick with CFIDS but was still staggering through strung-together part-time jobs as I couldn't get a diagnosis and thus couldn't get on disability (I was way too sick to work) I had some jobs that thrust me into the world of AIDS. I was in San Francisco...
  10. Peggy

    Teitelbaum now offering his eminent wisdom--we're saved!

    The title of this thread is worth its weight in licorice extract! Speaking of which, is Tietlebaum really going to try and push *more* licorice extract on us after all these years? Thymus and Vitamin C IVs sound reasonable, and the IM gamma globulin seems like a good idea, except for the fact...
  11. Peggy

    Severity of ARV side-effects vs severity of CFS

    I think it is definitely a risks/benefits analysis. But I also think anyone who watched AIDS patients dying in droves, then some patients rescued in the eleventh hour by the new cocktail drugs, wouldn't have the illusion that these drugs aren't powerful. I met a teenager with AIDS right before...
  12. Peggy

    Low blood flow to brain in CFS patients? Possible surgical treatment..

    I immediately thought of ME/CFS when I read about Dr. Zamboni's MS research too, but I didn't realize this surgery was now being performed in the US and many other countries. I wonder if any ME/CFS patients have gone through the testing process to see if we have this condition too? It...
  13. Peggy

    Dr. Holtorf Queries ME/CFS Community: How are Antiretroviral Treatments Working?

    On a quick Google search I found "Kent Holtorf, M.D. was the founding Medical Director for the Fibromyalgia and Fatigue Centers. . . " But now he seems to run the Holtorf Medical Group in CA: www.holtorfmed.com Peggy
  14. Peggy

    Metronidazole - breathing difficulties or something else

    It caused me horrific peripheral neuropathy that didn't go away for months (and with lots of acupuncture treatment) -- water on my hands felt like fire, could barely even pick up a piece of paper as my hands burned all the time and felt like needles were being stuck in my fingertips: torture...
  15. Peggy

    Starting Raltegravir

    Hi All, I am just getting on to this thread. Does anyone know about Ral and mitochondrial damage? I am really concerned in general about the effects of these drugs on the mitos since I have two abnormal mito tests. Also, I know an ME/CFS doc in the Boston area used to use a product...
  16. Peggy

    Stem Cells

    Placebo On the placebo issue: Remember the Dr. Cheney's original interest in stem cells (as expressed in his DVDs on cardiac issues and ME/CFS) had to do with research on stem cells in heart failure being done in Germany and elsewhere. At the time, Dr. Cheney was just starting to see ME/CFS...
  17. Peggy

    Stem Cells

    Rrr, you might want to do a Google search for "green hotels Panama" "green tourism Panama," "eco-tourism Panama," etc. At least you may be able to find a hotel that is not as conventionally toxic as the usual options.
  18. Peggy

    Stem Cells

    Janis, I was speaking mainly about Dr. Cheney's experience with using fat-derived mesechnymal cells on his patients (which apparently was not as effective as the umbilical cord stem cells) and also the comments on this thread about Moraga. In terms of other conditions, however, autologous...
  19. Peggy

    Stem Cells

    I know autologous stem cells are not seeming as effective as umbilical cord stem cells, but this menstrual blood stem cell banking place: http://www.celle.com/about.aspx is much cheaper than (name removed at behest of the company) ? I chatted with the rep online and she said that each...
  20. Peggy

    Jamie Deckoff-Jones MD Report On Meds

    Reservoirs In terms of getting at the reservoirs, you might want to look up the novel AIDS drug (still not approved) KP-1461 -- it essentially causes HIV to mutate itself out of existence, or that's the idea at least, which theoretically would result in a cure. It seems like this would be...
  21. Peggy

    Stem Cells

    Hi Janis, Based on your previous post and this last one, so the 5 treatments for $12,000 would include about 1/2 million stem cells each? Am I understanding that right? In other words, $12,000 would equal about 2,500,000 stem cells? Or are more injections done in each treatments? That's a...
  22. Peggy

    Stem Cells

    I have not watched the 60 Minutes thing, but progressive neuromuscular diseases are NOT thought to respond well to stem cell treatment except in the early stages. Stem cells are not a cure-all, but they do seem to work really well on other conditions (i.e. heart failure). MS seems to be most...
  23. Peggy

    Stem Cells

    Cheney's next group I thought Dr. Cheney had also suspended getting more patients treated until more news about XMRV, but apparently he's sending another group down there in March (according to someone who just posted here), so that's interesting -- I wonder if his two recent conversations with...
  24. Peggy

    NT in Austin

    Coffee enemas WILL rev you up if you don't do them properly. Look online for how to do them right: you need to lie on your right side to have the proper effect on the liver.
  25. Peggy

    NT in Austin

    The thing about coffee enemas (vs. regular enemas) is that they are specifically for detox -- they cause the liver to do a rapid detox (read the Gerson therapy website for more info.) but they don't go as deep into the intestines as colonics. Probably combining the two would be good -- I wonder...
  26. Peggy

    NT in Austin

    Wow this thread is really where the action is, from pubic bones to poo! What about coffee enemas vs. colonics? Any thoughts on that? How strong did you have to get before attempting a colonic, Mike? I am curious as I've always heard they are counterindicated for people who are super weak. I...
  27. Peggy

    m0joey - My experience with neural therapy and homeopathics

    That's interesting about the KPU -- I haven't had the patience to read more about it so this is helpful. So basically, we're all kind of screwed with the KPU situation. Does the doc do any kind of genetic testing? My friend had interesting results with the DetoxiGenomic panel from Genova...
  28. Peggy

    Stem Cells

    40 I am confused by this over 40/under 40 thing with Dr. Cheney. On his video about stem cells, he states that stem cells are necessary for those OVER 40, because the other treatments will not be enough as there are too many genetic mutations by 40, but it seems like people are saying here...
  29. Peggy

    m0joey - My experience with neural therapy and homeopathics

    Hi Joey, Actually if you have a lung-heart pattern in TCM terms that's probably better than what happens in ME later on, which is a Kidney-Heart pattern. Once the kidneys are extremely deficient the illness has become more rooted, so that's probably indicative of the fact that you started...
  30. Peggy

    m0joey - My experience with neural therapy and homeopathics

    Hi Joey, Thanks for another interesting update. I'm really curious about the haptans/retrovirus thing. That is intriguing. Do you know which haptans he is using? Also, that pressing on the brainstem is pretty sadistic! But I wish I knew exactly where my brainstem was so I could press on...