Discussion in 'Fibromyalgia Main Forum' started by sascha, Jun 22, 2008.

  1. sascha

    sascha Member

    just stunning after long difficult valcyte course of treatment. i stopped valcyte June 6th. i had some dire IBS going on, but felt the toxicity leaving my system. THEN i started coming back to life. the last two days i have gone out in the sun and wind, have walked a bit, fed birds, seen friends, been out for lunch, went to a movie. i hadn't been able to see a movie in months and months. had been virtually in isolation feeling the miseries valcyte brought on.

    BUT it lifted, and i am feeling GOOD. i am very very weak, but i am able to appreciate good things life brings once more. i kind of forgot they existed!

    i want to let people know that i made progress, both documented (virus counts) and now with what i'm experiencing.

    my HHV6 came down from over 10,000 to just over 1,000. i start valtrex in just over a week. Dr. montoya was enthusastic about my progress(which i couldn't credit much on the day of my appointment because i was feeling so ill and awful). but now- i am seeing the light! sure hope it continues. i am WARY. but right now SO HAPPY.

    i know it's different for everyone- i don't know what will happen- but right now i'll take this hopeful progress, and hope it encourages others. best from sascha
  2. Slayadragon

    Slayadragon New Member

    Good for you! Please keep us informed with regard to your further progress.
  3. dhamma

    dhamma New Member

    Hi, This is really great news! Please don't be concerned if you have a few bad days here and there. It seems that this happens for many of us. I've been off Valcyte for 6 months, and still have days when I feel like I'm backsliding, only to end up feeling even better when they pass. I'm sooooooo happy for another Valcyte success story, and that you're beginning to get your life back.
  4. Lichu3

    Lichu3 New Member

    hope it continues.
  5. ladybugmandy

    ladybugmandy Member

    yay!!! good news
  6. stschn

    stschn New Member

    I don't want to rain on your parade but I would causion you about overdoing. We've all heard it from Doctor Montoya but it is so easy to do to much when we have a good day. Remember to let your glue dry before you move your vase to much.
  7. sascha

    sascha Member

    it is a danger to overdo. and it takes very little activity to amount to overdoing.

    i rested most of Sunday.

    the analogy of a glass vase having been glued back together is great, stschn- vase is still fragile. glue hasn't dried. i'll think of that often..

    there are so many things i want to do, experience, now i'm out from under the valcyte, and it does seem as though the valcyte made inroads into my cfids, but i'm not sure exactly how or how much yet. time will tell.

    in the meantime, take it easy, and enjoy and appreciate new lease on life- and wish X-L-N progress to all of you!! Sascha
  8. clo1

    clo1 New Member

    dear sascha, this is my first day back on the board since my nightmarish saga with acute pancreatitis (which still hasn't completely resolved!) and i am so pleased to see that you have had some improvement post-valcyte...i relate, because i too often describe myself as feeling "weak as a kitten"...but i have also had some cognitive clearing and my brain no longer feels swollen, headaches are the progress has been very slow (i am 7 months post-valcyte) others have advised, i too would recommend that you go very slowly back into the world...i'm not ready for that yet, but at least i've got more than half a brain now!! and i totally agree with you about dr. montoya - he's a great person and has a wonderful sense of humor - thank god for his pioneering efforts with this disease or we who do not have access to dr. lerner would still be in the darkest regards and wishes for your continued improvement, clo