another postvalcyte update

Discussion in 'Fibromyalgia Main Forum' started by sascha, Jul 2, 2008.

  1. sascha

    sascha Member

    i'm cycling up and down. now again i'm in my second day of feeling GOOD. so amazing to experience this. i tell people i feel like weeping for joy. then i have crashed and had to rest/stay in bed for a few days. but then, i pop back up eventually. feels absolutely unprecedented !

    i get the sense that valcyte has caused some major purging. i suffered extreme IBS symptoms for 7 weeks. UGH MAJOR UGH.

    has brought me to reading Barrowinnovations most excellent posts, and she has inspired me to take further steps to get my gut as strong and functional as possible.

    now my IBS symptoms have let up, but i'm having the neck in a vise feeling again- which i had all the way through the valcyte. it really hurts.

    another very amazing thing is i'm starting to do the tiniest bit of exercising, which i categorically could not even attempt for months and months and months etc. just a bit of Qi Gong (i have a CD of beginning moves, and i do @ 2 a day). and a bit of meditation. and a tiny bit of lifting light weights. very very small steps. i am not pushing it AT ALL. just something in me said i could try it.

    i am immensely cheered by this feeling better. i don't think it's a figment of my imagination. it's not a constant state by any means. but is promising... shows potential.

    my HHV6 started at over 10,000; is now just over 1,000, so the valcyte definitely did that for me. i didn't have EBV. i am now on valtrex and so far haven't seemed to have any negative reactions from it.

    I AM going to take immune system and mitochondral function supplements; and I AM going to strengthen my diet- get another veg. juicer, a dehydrater. really GO FOR IT!!

    well, brave words based on how i'm feeling right now. we'll see what tomorrow brings.


    ALEESLP New Member

    I am in my third month of Valcyte treatment and am counting the days until my 6 months are up and I can stop it. The side effects are crazy especially since I'm back at work after 12 weeks of medical leave. I have seen some improvement of cognition but still have overwhelming fatigue especially near the end of the week.It gives me so much hope to see someone having some success with this treatment and working so diligently at improving their health.Again, thank you and I hope you have more wonderful days ahead.Angela
  3. sascha

    sascha Member

    you're working !!?!! i'm impressed. what were your titer counts?

    GOOD LUCK- sascha
  4. ladybugmandy

    ladybugmandy Member

    congratulations!!!!!!!!!!!!!!!! everyone who gets better - even some - gives me hope to keep going.

    i am SO happy for you!!!

  5. sascha

    sascha Member

    i send strong wishes for good benefits coming your way.

    today is my third day feeling maybe better. i'm always reluctant to commit to feeling better because so often i find myself back in bed for 3 or 4 days. but so far this morning, pretty good- which of course comparatively means FANTASTIC.

    but it could be something completely different than the valcyte benefiting me--i know that. i remain cautiously optimistic.

    we all react so differently. each case has its own set of conditions, needs, and reactions going on.

    today i plan to order a dehydrater and get further on the healthy-eating train. my neck pain eased up today, too.

    GOOD LUCK, SUE- best, sascha

    ALEESLP New Member

    You asked about my titer counts.

    HHV6 1:640
    EBV early Antigen 113
    EBV VCA IGG AB 477

    These were just prior t0 my Valctye treatment.

    In the past 2 years i have reactivated mono 4 times with my IGG up to 2369 and Nuclear Antigen up to 806.

    I am single and was denied short term disability by my employer;s STD insurance so I push my way through the days now so I can pay the mortgage and live. It is very hard!

  7. sascha

    sascha Member

    you are so right about the money worries. the valtrex will cost me $80/month, and i don't know if i'm expected to stay on it indefinitely. i'm wondering if there are any alternatives.

    with costs always going up, but income not going up, it's tough to figure things out. i want to have a very good diet going, so don't want to stint on that.

    i'm really amazed you are working. must be hard with exhaustion and side-effects. more power to you. it will end! and you may get very good help out of the valcyte eventually. i hope so. i'm so happy it's over. Sascha

  8. ladybugmandy

    ladybugmandy Member june of 2009, the valtrex patent will expire. ranbaxy, a pharmaceutical co. based in india, will be entering the US market with the first generic version of the drug. after 180 days, other companies will move in. the cost of valtrex will become MUCH cheaper. one can deny you disability for CFS. companies have been sued over this many times now and the patients have won. please please please consult with an attorney. i know for a fact that people have won against bluecross just to name one.

    good luck all
  9. Timaca

    Timaca New Member

    Thanks for your update. I am holding good thoughts for you. I hope you see more and more better days!!

    I am off valcyte now (did 9 months). I saw improvements in brain fog, energy level, and feeling less ill. I was not well.

    It was noticed that I had high antibody titers to Chlamydia Pneumonia (Cpn). I recently started taking doxycyline for it. I had a significant herx reaction. So, more pathogens to kill off!

  10. sascha

    sascha Member

    sue- that's good to hear; that maybe generics/alternative valtrex sources may someday be available. there are so many people constantly on this drug, and i'm sure many of them don't have insurance. thanks-

    timaca- i'm being tested the end of August for chlamydia. on the valcyte, our mental energy improved, and for me, sometimes the physical. but i relapse and need lots of rest and sleep. this treatment really does a number on us! BUT --it seems to be helping and that is the miracle we wanted and would go through fire to get. i guess herxing on the doxycycline is a good sign. we must have so much patience...

    my intense wish is that we all get very very well. Best, Sascha