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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. jane52

    The Hammer - Vistide and Dr. Peterson

    Vistide brought all 3 of my viruses levels down to normal range. I rarely had flu-like symptoms, but my immune dysfunction didn't improve much so the treatment effects didn't last more than a few months. I was still weak and fatigued. Probably due to the immune problems.
  2. jane52

    Positive valcyte experiences

    That would be Really nice! Those infusions along with the Probeniced that must be taken with it and the 3 bags of saline are just tough. After a couple of days it gets better though:)
  3. jane52

    Positive valcyte experiences

    I didn't have any co-infections. The azithro was solely for inflamation. My IL8 is very high. It improved. Sorry, forgot to mention that it did lower the CMV by quite a bit also, but the HHV6 did not budge! My NK count is practically nil and I have a clonal T Cell Rearrangement. I stopped...
  4. jane52

    Positive valcyte experiences

    I took Valcyte for a year. I had active EBV, CMV & HHV6 along with immune dysfunction. My doctor says he;s seen it work 70% of the time. I saw a man who had been bedridden and was looking healthy. I did not have a great result, but it did bring my EBV levels all the way down! I am glad I...
  5. jane52

    The Hammer - Vistide and Dr. Peterson

    I'm assuming he means for CFS patients with specific viruses?
  6. jane52

    The Hammer - Vistide and Dr. Peterson

    Yes, CMX001. I asked Dr. Dan Peterson about it and he told me it's ready for patient trials, If it makes it past the stage it's at now. I don't understand Exactly, but apparently it will get the go ahead or get trashed. I am so hoping for a go ahead!
  7. jane52

    The Hammer - Vistide and Dr. Peterson

    The oral form of Vistide is in stage 3 now. It's at a place where it will get pushed through or trashed, we don't know which. It's ready for patient trial if it makes it through.
  8. jane52

    The Hammer - Vistide and Dr. Peterson

    My next infusion appt. is Monday, Oct. 15th. It seems I keep missing you Anne! Then Tuesday, Oct. 30th.
  9. jane52

    The Hammer - Vistide and Dr. Peterson

    Rooney, Will you be back at Peterson's soon?
  10. jane52

    The Hammer - Vistide and Dr. Peterson

    Rooney, I didn't really have a great response to Valcyte. The first 2 mos. or so are the hardest. Dr. P. told me he sees people "turn the corner" and feel better in 4 to 6 mos. I started to turn that corner with my EBV & CMV levels going down, cytokine levels decreasing and feeling better...
  11. jane52

    The Hammer - Vistide and Dr. Peterson

    I'm a patient of Dr. Peterson and two months into Vistide treatment. Every 2 wks for 6 mos. He feels it's not as hard on the body as Valcyte. I took Valcyte for 1 yr. It knocked down the EBV & CMV, but not HHV6. CMV came back quickly. He says it works 70% of the time & I was in the...
  12. jane52

    Epstein–Barr virus infection induce chronic fatigue syndrome

    Oops, I'm sorry if I responded to a question not meant for me. I'm new here.
  13. jane52

    Epstein–Barr virus infection induce chronic fatigue syndrome

  14. jane52

    Anyone here a patient of Dr Peterson's?

    Regarding, seeing Dr. Peterson. Call and ask for a new CFS patient packet. Don't be put off by the info on $$ to pay up front, etc. Gather any lab reports you have, write a brief history of your illness & send it back in. He accepts medicare. I have medicare & a BS supplement. I didn't pay...
  15. jane52

    Anyone here a patient of Dr Peterson's?

    Ivana, I've been seeing Dr. Peterson for 2 yrs. He's a wonderful, caring doctor who really wants to help his patients. I think if you are realtively young and haven't been sick a really long time...like 20+ yrs. it is more likely you can get an appointment sooner rather than later. He...