post-valcyte discouragement/question

Discussion in 'Fibromyalgia Main Forum' started by clo1, Jul 6, 2008.

  1. clo1

    clo1 New Member

    i am about 7+ months post-valcyte through the stanford clinical trial...the valcyte felt like it was so toxic for my body that i really felt i should stop taking it but didn't because i wanted to stay in the trial and reap any possible benefits... i had very low WBCs during the whole trial; i still do but they're not at a critical low...

    i was just wondering if there are any of you who have had a similar response...i have had some neurological improvements, specifically that my almost daily migraine headaches are now gone; my head feels clearer and my cognitive abilities have improved but not substantially...other than that i feel so cr*ppy: hungover, jet-lagged, sleep deprived (even though i sleep deeply for 12 hours a night), & exceedingly weak...i exist and don't really live...cannot work, cannot go to a restaurant or movie, can barely take a short walk basically homebound...

    i have held onto some hope for this last year throughout the trial, during and post-valcyte because it has always seemed that maybe the improvement was right around the proverbial that it's been this way for such a long time, i am feeling pretty hopeless and despairing...thank you in advance for any support, feedback, similarities, suggestions, or anything!! best, clo

    p.s. i am grateful for the neurological improvements but it's challenging to feel gratitude when every other part of me, from the eyeballs down, is suffering...

    [This Message was Edited on 07/06/2008]
  2. ladybugmandy

    ladybugmandy Member

    hi clo.....i am really sorry for your suffering and, as you know, i am in the same boat.

    you probably mentioned this before, but are you on any follow-up valtrex treatment (or any other antiviral)?

    i have been on valtrex for just over 2 months and have noticed a slight improvement (but i was VERY sick before).

    things may seem clearer once the biomarkers are revealed. i am sure we will be one big step closer to the solution.

    hang in there..


  3. sascha

    sascha Member

    i am thinking maybe the valcyte did its work (did titers go down?), but something ELSE is is blocking recovery/improvement, and i hope you can nail down what it is. my thought is you could follow Barrowinnovations recommendations to check what's going on in your GI tract. i believe getting guts working well is a critical foundation to our making progress. she (barrowinnovations) recommends sending in a stool analysis to a lab (she has all the inf. on her posts). you get diagnostic inf. back that can uncover any number of weaknesses, and then prescriptions for them. i plan to do it.

    the viruses are one aspect of our illnesses, but there are all sorts of other things. when i first went to an alternative medical practice, they did testing and uncovered things out of whack- adrenal system, candida yeast problem, blood sugar off, IBS and gut inflammation- once you know for sure what's wrong in the gut, then you can address it, and give yourself best fighting chance of turning the corner into healing.

    and then addressing the diet- i have no idea of course what your diet is- i'm continuously working on mine- with lapses- have been off sugar, wheat, alcohol, caffeine, any flours, for a long time. i'm not perfect on this, but am always working it. am now buying a dehydrator and am buying another veg. juicer. i BELIEVE there is so much we can do with diet, our fueling system.

    i'm a month post-valcyte. it was very toxic for me. i felt poisoned all the way through- it was very hard. but my HHV6 went way down by the end, and although i am weak and wasted, i am starting to have glimpses of feeling better and being able to function more. i had bad (7 weeks) of IBS flare-ups- most miserable- which got me back to the drawing table to find best eating plan and supplements for me. i am taking immune system supplements and digestive aids- sometimes i can't tolerate very much and cut back, then try again bit by bit to find the best regimen to help my comeback.

    sorry so wordy. i want you to do absolutely everything possible and start regaining energy, health, well-being. i don't think there's a one size fits all approach to this. we have to experiment and find what works for each one of us-

    please write about anything you discover; and don't give up! very best to you in your search- Sascha
  4. Timaca

    Timaca New Member

    Hi clo~

    As always, you have my utmost admiration. I admire your kind, caring posts in the middle of your horrible circumstances. And because of your circumstances you have my concern and prayers. Many hugs to you.

    I can only suggest to you what I have found to be happening to me. Try to get tested for other pathogens.

    It appears in me that more than one pathogen has reactivated. I improved on valcyte, but did not get well. We began testing for other pathogens, and I found that I had high antibody titers to chlamydia pneumonia (Cpn). I am on doxycyline for that now.

    Have you been tested for Cpn? Mycoplasma pnumonia? The various enteroviruses? Do you have any tissue from a previous surgery (when you were ill) that you could send off for enterovirus testing? (Enterovirus may be positive in the tissue and negative in the blood).

    Obviously, something is making you ill....keep searching...

    Other possibilities...mold? Do you feel better away from your home (If you are gone from it for several days to a week)

    My prayers are with you to find an answer.


  5. deliarose

    deliarose New Member

    If your detox pathways are screwed up and you're not getting rid of toxins and such from the body, then 6 months of a toxic drug may have added to your body burden, making you feel worse.

    I would run a panel looking at your glutathione levels at the very least. Optimally, I would run the Vitamin Diagnostics methylation panel.

    This would tie in with what Sascha said above. The drug may have improved cognition thru viral killing, and reducing neurological inflammation & such.. but there may be something else that needs addressing....

    I'm suggesting it's your detox pathways. This is pure Rich Van K /Yasko.

    Good luck