• 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.

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  1. C

    Bob Miller on hunger strike: support him by emailing FDA about Ampligen - decision imminent

    I'm also one of the Incline Village patients on Ampligen who is getting a LOT better. I also happen to be a doctor, and people, this stuff works-and it may be taken away from us. I can name at least 4 people here who will end up in a wheelchair or bedridden, perhaps permanently, if this happens...
  2. C

    anyone tried the gupta programme?

    I did. Good meditation sequences, but certainly didn't cure me. Helps with anxiety and negative thoughts.
  3. C

    clonal T cell receptor gamma rearrangement

    Labcorp does it. Mine just turned positive (sadly).
  4. C

    IMMUNOVIR: your updates? Has it helped/harmed/neither? thanks!!

    I took Immunovir for 6 months, seemed to make my tinnitus louder on the days I took it, but seemed to help my immune system slightly.
  5. C

    Best Doc to see?

    I decided on Peterson-he put CFS on the map, has the most experience with Ampligen of anyone in the world, and isn't afraid to use other treatments, including cidofovir and valcyte. He is compassionate and aggressive. Book early though, because his waiting list is huge.
  6. C

    NK cell function test

    Mine was sent to Focus Diagnostics, Cypress, CA.
  7. C

    What its like to be a MAN with ME/CFS

    Hi Snowathlete, I know that you're relatively young for low testosterone, but you may want to get it checked. I had not only low testosterone, but low LH, which is consistent with a hypothalamic or pituitary cause of low T, which is what many experts believe is at the heart of at least the...
  8. C

    Ringing in ears

    I've had tinnitus too since the start of the illness. It is ringing, bilateral, and increased with exertion, and improved somewhat with sleep.
  9. C

    The Hammer - Vistide and Dr. Peterson

    Dr. P is now a PI for the Chimerix study, you have to have a high viral load of CMV or EBV, as manifested by quantitative PCR (i.e., not just antibody but actual high numbers of virions as measured by PCR) to be eligible for the CMX001 study. I was negative, and not sure if many PWC's will be...
  10. C

    valcyte, die off or adverse reaction

    Hi heapsreal, I took Valcyte starting my birthday (December 15) in 2010 and by the second week of January 2011 started to feel worse as well. This worsening continued into February but by mid-March began to feel better and had continued improvement through May. Unfortunately I developed...
  11. C

    Has anyone who has taken Valcyte developed cancer?

    Prior to my taking Valcyte for 5 months, I did some research on Valcyte in humans and this is what I found. There is a study which specifically looked for cancer in 9-14 year olds who were given ganciclovir as neonates. The trial can be found here...
  12. C

    What is this horrible metallic taste??

    I had a metallic taste in my mouth-had many mouth ulcers until I started on Valtrex/Valcyte, and I haven't tasted it since, so I am wondering if for me it was some bleeding (iron in Hgb) from the ulcers.
  13. C

    I do better in the cold!

    I can make some of my symptoms 50% better with cold, in fact, since the first month of my illness I will do anything to cool down my head, which feels blazing by afternoon and evening. Cooling methods have included taking short walks when it's cold outside, applying ice bags to my head, and...
  14. C

    Why wrinkled fingers and toes?

    I have this as well, along with a pink to dusky red skin appearance over the distal phalanges that is especially prominent with exposure to cold. The wrinkles are oriented along the long axis of the finger. Since my hands and feet sweat a lot more, I'm thinking it is a sympathetic nervous...