Seeing results from Valcyte

Discussion in 'Fibromyalgia Main Forum' started by deserella, Aug 28, 2008.

  1. deserella

    deserella Member

    I thought I'd report that I have been doing really well for the past couple of weeks. I went on a trip to glacier national park and was able to go on two hikes without crashing the next day or when I got home. My stamina has improved so much. I have not been on a substantial hike in over 2 years. I have been off valcyte for 2 and half months. I am finally seeing some results from this hellish drug!!! So there is hope.

  2. erica741

    erica741 New Member

    Deserella, I'm so happy for you! I hope your amazing improvement continues.

    Thanks for keeping us posted. Too many people drop off the board when they recover.


  3. sascha

    sascha Member

    i, too, am @two and a half months post-valcyte, and i, too, am seeing improvements. it is the best thing to experience feeling better- noticeably and undeniably better- after all this time.

    i do not feel sick the way i did much of the time. i am capable of enjoying people again, and modest activities out in the world. i did laundry for myself for the first time in over a year- and it was such a pleasure- this simple activity that before would put me into aches and pains all over my body and would send me to bed for some time. and my mental capacity has sharpened up has more staying power. feels like a miracle to me.

    i've had cfids condition for over 8 years. my HHV6 and HSV1 were very high- and have come way down. i go for latest test results today- am seeing Dr. Montoya.

    my main concerns now are my weakness and debilitation- also inability to work on fitness. i hope i can exercise at some point. also i have periods of hyper-somnia (never heard that term before). if sleeping were an olympic event, i'd be right in there.

    good to hear your news!!! very best, sascha
  4. Timaca

    Timaca New Member

    This is awesome news! Keep us posted!

    I saw significant improvements on valcyte. I didn't get well, but we also noticed at that time that my antibody titers to Chlamydia Pneumonia were quite high. So, I was put on doxycline. (Had a significant herx like reaction).

    My viral antibody titers went back up, off the valcyte, so I was recently started on acyclovir (with a significant herx like reaction).

    So, we'll see what happens from here!

    Best, Timaca
  5. SpecialK82

    SpecialK82 New Member

    Congratulations to all of you!!

    I am thrilled to hear success stories on antivirals. So do you all feel that you are continuing to get better as time goes on, off the Valcyte? In other words, do you feel better now than you did your first day off Valcyte?

    I have just started taking Valtrex for EBV and am hoping that I can see improvement like yours.

    How fun to be getting your life back, even little by little.

    Thanks for encouraging the rest of us and please keep posting!


    LISALOO New Member

    How long were you all on valcyte for? I had to stop at 1 month, horrible ic pain/.
  7. ladybugmandy

    ladybugmandy Member

    hi all. please keep in mind that valtrex is much better for EBV than valcyte - which is not what was recently thought.

    dr. ablashi told me this a few days ago. he is in regular touch with montoya.

    dr. lerner always knew this!

  8. deserella

    deserella Member

    I was on valcyte for 12 months. I had very high titers for HHV-6. The last 3 weeks I have had very good energy and this week everyday has been great. So I really hope this keeps up. I'm being careful not to over do it. I wish the best for you all and thank you for your replies and support.

  9. stschn

    stschn New Member

    I'm glad to see the good news about Valcyte on the mb. Some people seem to be posting such negative information when the finale results aren't even in yet.

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