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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. L

    First Cidofovir Infusion Done!

    I want to thank u Tristen for ur explanation of progress since on Vist/Cido. I appreciate your candid response. I completed my 5th infusion on 12/30 nd will do 6th on 1/13. I have nooo problems w the infusions, no side effects at all, but I have also not seen 1 ounce of improvement. A slight...
  2. L

    First Cidofovir Infusion Done!

  3. L

    First Cidofovir Infusion Done!

    Wow Emma, I just read this. I posted an update on my Cidofavir infusions at the end of this Thread somewhere. I do not know how to post properly or make sure they get to the correct people. If you get a chance, read it. I am amazed he put you on Valcyte too. I did Valcyte the entire year...
  4. L

    First Cidofovir Infusion Done!

    Hi Tristen & Ema, ( I don't know how to get this response to both of you) Tristen thank you for ur post abt ur experience with Dr. P & Vistide and happy to hear your doing so well for so long. What makes you feel ur at 70% vs. 90 to 100%? I do not expect 100% nor did Lerner ever say so, but...
  5. L

    First Cidofovir Infusion Done!

    Hi Ema, I did my first Cidofovir infusion and it went really well. I had no side effects at all. Scares me to say that, prob start tonight. Does it get worse as you proceed w more infusions? What I understand from the nurses at Beaumont is including myself there are now 6 patients of...
  6. L

    First Cidofovir Infusion Done!

  7. L

    First Cidofovir Infusion Done!

    Hi Ema, I have not been on site 4 long time. How are you doing, pls tell me great. Update for me, wen I went back to Lerner last month expecting him to add the valcyte to take (which I already did for a year in 2007), out of nowhere he said that he felt I shud b put on the Cidofavir since I...
  8. L

    First Cidofovir Infusion Done!

    SOC, Thank you for feedback. Did he have you on Valtrex 1mg 4xday? How did he dose the Valcyte 450mg 3xday??? How long did you stay on it all? How long were you sick before getting treated? I think that has so much to do w getting better or not having all 3 culprit virus's w no drug to...
  9. L

    First Cidofovir Infusion Done!

  10. L

    First Cidofovir Infusion Done!

    Hi Ema, I never posted here or anywhere abt this nightmare illness in a longggg time as it takes up too much of my zero-energy and mind exhaustion. First I hope ur getting better from over doing it. I know too well how you feel and concerns. I read ur post abt seeng Lerner & getting IV...