CFS: another antiviral update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Aug 12, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hello. i wanted to post another update about my antiviral experience.

    as you might know, i used to see dr. lerner and, after a year of antiviral treatment, began to improve. however, my liver enzymes became a little high and dr. lerner began reducing / stopping the valcyte, after which i became deathly ill again.

    a few months ago, i stopped seeing dr. lerner and restarted 900 mg valcyte/day and continue on 4 g valtrex/day. i am also on some generic vitamins that dr. lerner recommended and some liver supplements, recommended by my current doctor.

    after months of absolute hell (die-off?), during which i posted here many times in the depths of despair and depression, i have begun to improve again....

    but the problem is, my liver enzymes are again high. my ALT is the highest it has even been, at 134. dr. lerner was very clear that i not take valcyte even if the enzymes were slightly elevated, as it is a liver cancer risk.

    still, i continue to take the drug, as the alternative is unbearable. i cannot afford antiviral IV infusions so i have no other options. i will get a liver ultrasound next month.

    since i will have to take valcyte until a new, safer drug is approved in canada (likely several years), i wouldn't be surprised if i do end up in big trouble with my liver.

    but for the moment, my life has become bearable again.


    ps...i have been having muscle twitches for a year now and wonder if i am in the early stages of MS too...

    [This Message was Edited on 08/13/2009]
  2. jasminetee

    jasminetee Member

    I'm glad to hear you're feeling improvement again. :) I hope it continues for you. I understand you feeling nervous about your liver, it's good that you're going to keep up with having it checked out.

    Prayers and Hugs,
  3. heapsreal

    heapsreal New Member

    How is the artesunate going, do you think its making a difference? As for the liver function, is it possible to cut back or stop other meds other then valcyte? Good to see you improving but a bugger to have to pick between to evils. Hope it all go's well for you.

  4. ladybugmandy

    ladybugmandy Member

    thanks, everyone. i really appreciate the posts. i dont think artesunate is making a difference but i cant be sure, of course. i just dont see how so little an amount could make a difference.

    heap...i just stopped lorazepam (ativan) but in the past, stopping things never worked. the valcyte is the problem...:-/

    i can stop cymbalta but i need it and also i dont think that really would affect the liver much...

    the valcyte is really working well all of a sudden....if only i didnt have a new worry now...


  5. gapsych

    gapsych New Member

    My ALT was high at one time.I had an ultrasound on my liver and it was fine. My doctor then gave me a test to see if it was caused by my liver or bones. My liver was fine and I had a bone scan as they suspected Paget's disease. That came out normal.

    The ALT came down and has been normal since then.

    You are between a rock and a hard place. Hope this gets straightened out.

    Thanks for your updates. I am sure they help others.


    ETA I thought ADs can make effect your enzymes.But don't go off the cymbalta without talking to your doctor. I am sure you already know this. I can not tolerate SNRI's like Cymbalta but can SSRIs. Good luck.[This Message was Edited on 08/13/2009]
  6. wrthster

    wrthster New Member

    Perhaps it is worth a try with Gamma Globulin. Discuss it with your Doctor about being a possilbe alternative to antivirals. Just my thoughts and I don't think it will hurt your liver. Best of luck.
  7. ktp812

    ktp812 New Member

    I was being treated for Lyme disease for almost 3 years. My liver enzymes went really high off and on during that time.
    The doctor had me take milk thistle and NAC to help detox the liver. It worked really well. I honestly don't remember the strength since I haven't been on them in a while.
    I know the milk thistle was 80 percent symlian(sp). You can get it in the regular drug store but I had to buy NAC online.