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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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Search results

  1. J

    All the different test's, can we list them?

    here are basic CFIDS tests from Stanford http://www.treatmentcenterforcfs.com/FAQ/index.html#Tests we use a lighter version from Quest as published on the VLG on Valcyte Blog and if the HHV-6, EBV and CMV plus a few pathogens come back poistive, then we do all the tests. Metabolic Comp...
  2. J

    interferon inducers Amixin, Kagocel, enteroviral infections

    Since my son and I both battle enetroviruses as welln as other pathogens, we are thinking of trying Chia'snidea (listed on Stanford website) Equilibrant, an herbal preparation made in the U.S. also known as "Oxymatrine," is an immune modulator that helps to shift immune response to the Th1...
  3. J

    Comment by 'JuliaHugoRachel' in 'Restarting Valcyte Today'

    I've heard that Montoya no longer starts patients at 1800mg per day for 3 weeks, this was too much. EXCEPT for the rare cases of Chromosomally integrated HHV-6A, which is a different deal. I am not sure why someone would take more than 900mg of Valcyte per day. The conclusive studies clearly...
  4. J

    Comment by 'JuliaHugoRachel' in 'Valcyte - Day 18'

    Good Luck with Your Valcyte Journey. Valcyte saved my sons life and bettered mine. He is now on long-term anti-virals, but was on Valcyte for 3 years. I will be on it for 3 years this May and will probably be transferred to another long-term anti-viral this coming summer. I've had this for 30...
  5. J

    Chest pain

    Hi: My son had severe cardiac pain for nearly 5 years. It started when he was active in sports and worsened as his CFIDS progressed. We was bedridden for nearly 6 years, and even if he walked just a few feet, he would clutch his heart in pain. Cardiomyathapy (sp) and cardio problems go hand in...