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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. inozz

    Antiviral/-bacterial strategy

    Hi guys! Just want to share my thoughts about my lab results and the strategy based on it. Maybe will find somebody with the same problems. My main symptom is physical fatigue (affecting walking etc). Arminlab test CMV IgG antibodies (ELISA) 2,823 Ratio Ratio >= 1,1 = positive - more than...
  2. I

    Valcyte - is it available anywhere in UK?

    I have CMV (extremely high titers) and i've been trying my best to treat it with antiviral herbs and immune modulators for the past two years with no improvement. I know its time to try Valcyte, so I am looking for help in finding a Dr in the UK that uses it to treat CMV. Does anyone have any...
  3. D

    HSV/VCV/CMV/HHV-6 - how to combine meds

    Dear guys and gals, my friend got her HHVs tested a month ago and she was IgM positive for HSV, VCV, CMV and HHV-6. Her symptoms are mainly chronic pain, but other than that she is "healthy" (the rest of her bloodwork is OK) so these infections are probably in the low-grade/chronic territory...
  4. G

    Tips on tolerating Valcyte?

    I started taking Valcyte a few weeks ago, I first started with the dose my doctor (a CFS/ME specialist) gave me at 450mg 2x a day. It initially gives me a boost but after a day or two really makes me even more fatigued and a bit depressed. I started taking a much smaller dose, just 1/8th of a...
  5. Hip

    The reason why antivirals like Valtrex and Valcyte take such a long time to work in ME/CFS (or don't work at all), according to Dr Martin Lerner

    When treating herpesvirus-associated ME/CFS with antivirals such as Valtrex and Valcyte, Dr Lerner's studies showed it takes a long time for benefits to appear, usually 3 or 4 months for the very first signs of improvements to materialize, and a year or more for the full benefits to manifest...
  6. gbells

    Giving Infectious Disease MDs one more try (no 3). The Lupus vs SEIDs Saga

    I thought I'd throw this experience out there. Yesterday I drove one hour to a remote infectious disease MD outside of the Raleigh Durham triangle (NC). The MD accepted Medicare (my insurance) and was recommended by a lyme disease group. I had previously seen infectious disease doctors at...