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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. GoWest

    Done reading PLAGUE by Dr. Judy Mikovits

    Lou, off topic, but how much do you think toxic mold played a role in the Incline Village outbreak? Do you live in a home free from mold at this time? Second comment, I read "Plague" and found it very difficult to sort out in terms of the science. But I think there is clearly some retrovirus...
  2. GoWest

    New Blog: Hope for Andrew

    Hi Lisa, Does Jacqueline read this forum? My one point for which I am expert is the reality that a child able to focus for several hours - for the first time in his life - on a video game is showing vast improvement. Something Dr. D-J did helped. I can only add that we have all spent tons of...
  3. GoWest

    New Blog: Hope for Andrew

    Hi Lisa, I just read your interview with Jacqueline. You did an amazing job! I hope the family will get to take Andrew to Dr. Myhill for further treatment. I think her approach may be similar to Dr. Deckoff-Jones, especially in terms of using Deplin or a similar folate supplement. I want to...
  4. GoWest

    New to Mold - What To Do??

    Hey Lisa, I am still waiting for a reply on this hot springs thing. I'm pretty good at telling if a place is contaminated. I used to get sick in the airport here in Vegas. It was found to be full of stachybotrus and had to be cleaned. I got high blood pressure at an eye clinic. Guess what? The...
  5. GoWest

    New to Mold - What To Do??

    Lisa, are you seriously going to a hot springs to retreat from mold? Hot springs are by definition full of mold. You might want to go to Death Valley instead. Just curious, what else are you looking at in terms of recovery or treatment besides avoiding mold the rest of your life? Paula Carnes
  6. GoWest

    News Flash: All criminal charges against Mikovits have been dismissed

    I think there was a reason I couldn't sleep tonight. God wanted me to hear this good news!
  7. GoWest

    Harvey Whittemore sued

    Daffodil, your comment reminds me of a great Bible story about Joseph. His brothers plot to kill him, then sell him as a slave to Egypt. He gets put in prison, falsely charged, (unlike the Whittemores) then gets out, becomes second in the land under the Pharoah and ends up saving his entire...
  8. GoWest

    Article: Lo/Alter Retract MLV Paper on CFS

    Cort, does it bother you that Dr. Lo is the guy who did the autopsies on the 6 dead bodies who died from mycoplasma incognitus and Lo holds the patent on that germ? Here I was hoping he would be our knight in shining armor and now he goes along with withdrawing the paper on their finding of a...
  9. GoWest

    Antiretroviral Trial

    Daffodil, I have a couple of questions for you. Please excuse if you have already answered. What all infections have you tested positive for? Lyme? Other? Have you ever responded to any antibiotics? I suspect, if you did, that you have co-infections that were reduced by the antibiotics. How...
  10. GoWest

    Comment by 'GoWest' in 'a certain protocol, has anyone heard of it?'

    The stuff is cheap and may help some. I would encourage anyone to try it for awhile. I used to live in Lancaster, SC and recall a few with an fms label who claimed it helped them. I tried it for awhile. Can't recall any great improvement but it did seem to relieve aches and pains. Paula
    • GoWest
    • Blog entry comment
  11. GoWest

    Article: XMRV at the NIH State Of Knowledge Workshop (SOK): The Mikovits Coffin Debate

    Why all the negative PCRs for XMRV? Cort wrote: I think its going to send a shockwave through the PCR community. Basically I think its going to have show some flaw that they had never thought of before. If you read the Satterfield interview you know where that community of researchers is...
  12. GoWest

    Negative XMRV CFS study with Ila Singh's name on it (University of Utah)

    Still doesn't explain why Mikovits got 97% positives in cfs patients and only 4% positive in healthy blood samples. Here is a link to my blog today regarding the NIH State of the Knowledge conference and Cort's interview with Dr. Satterfield...
  13. GoWest

    Dr. Marshall on XMRV

    Why the Marshall Protocol may help some folks - because minocycline will reduce retroviral action, particularly in the brain. http://diseases-viruses.suite101.com/article.cfm/hiv-prevention-through-an-acne-drug HIV prevention through an acne drug Minocycline has a renewed purpose Share...
  14. GoWest

    Klimas cfs clinic

    Cheney is treating it with artesunate and wormwood and stem cells. Are other cfs and Lyme docs treating it? Yes, but I don't know specifics and have no right to post information. Hopefully, some doctors will begin to present information IF they see improvement in patients. AZT, as Mikowits...
  15. GoWest

    Klimas cfs clinic

    Leaves get the XMRV treated Hi Leaves, You don't know me, but I would love to see you and all get well. With a postiive for XMRV perhaps you want to pursue treatment of that retrovirus. At this point I don't think it will be too difficult to find a doctor in your area willing to treat you for...
  16. GoWest

    People Who Tested Negative to the VIPDx tests

    My doctor's nurse called this morning to tell me that my VIP culture test for XMRV was negative. My initial reaction was disappointment as this would have meant some explaination for my failure to gain 100% recovery over 15 years of illness. Does this mean I do not fit the cfs diagnosis? I...
  17. GoWest

    My VIP XMRV results

    Can VIP store the blood samples and still get a valid result? Kim, My blood was sent to VIP almost 5 weeks ago. The directions for the sending said that if the blood did not get there in 24 hours they could not test it. Therefore I am confused that they would still test your blood after it sat...
  18. GoWest

    XMRV results

    standard PCR questions Kurt, if I am understanding a standard PCR, the risk is that a small amount of contamination will lead to a false positive. Is this the concern you have for the standard PCR? Given the extreme difference in results between healthy cases and cfs cases I think contamination...