CFS: Valcyte Problems:Advice Needed!

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Apr 30, 2009.

  1. ladybugmandy

    ladybugmandy Member

    Hi all. I am having a problem and need your advice.

    I was really recovering after 17 yrs of CFS but my ALT keeps going up every 2 months on the Valcyte dose I need (450 mg daily) so Dr. Lerner reduses my dose to 450 mg every 48 hrs. About 2 weeks after reducing the dose, I become very sick again.

    Dr. Lerner says the drug has been known to cause liver cancer so he has to be very careful. However, the doctor I saw before him, Dr. Leo Galland, felt that mild ALT elevation was OK.

    Do you know anything I can take (supplements, etc.) that may prevent the ALT from rising? I already take NAC.

    Kelly...if you are reading this, you mentioned that you take that Artemisinin supplement...would you kindly tell me the name of it and where you buy it from again? I really appreciate it. Also, do you think it is helping you? I think I will take it in addition to the Valcyte....

    this SUX!!!!!

  2. outofstep

    outofstep Member

    Even though I had tons of problems with Valcyte, my liver was miraculously okay. I was taking milk thistle (funny cause someone else just posted about this) with it but don't know if that's what normalized things-I do know that my liver didn't hurt as much when I took it. It's worth a try anyway. Good luck-I hope that you can stay on the Valcyte! We really need some less toxic treatments!
  3. ladybugmandy

    ladybugmandy Member

    thanks guys. i think i will try the milk thistle....and maybe drink even more water than i am drinking....i am too poor and foggy to deal with much more lol

    i wonder where cheney is getting the artesunate!

    K. Loomis says taking 405 mg of valcyte every 48 hrs a good way to end up with a resistant strain of HHV-6...UGH

    love
    sue