Gasolo/Gary: Are You Out There?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, May 9, 2010.

  1. Slayadragon

    Slayadragon New Member

    Hi Gary,

    I don't know how often you check in on this board, but I was hoping that you could give me an update.

    How are you doing?

    I'm at about seven months on Valcyte. I think it's been really helpful. My toxic mold reactivity went up for a few months (I think that this would have translated into really serious "die-off" if I'd been getting mold exposures), so I had to be more careful. Other than that, I didn't have much problem with it.

    Now I'm at the point where my mold reactivity has gone way down, my cognition is pre-illness a lot of the time, and all other symptoms of all kinds (CFS and others) have disappeared.

    The exception is continued painful detox, which feels like I have a hangover every single morning. Obviously there's a lot of crap stored up in my system, but it still feels like there's something wrong with my ability to detox as well. Normal people don't have this hard of a time moving bad stuff out.

    I keep thinking about your comments about that chest pressure (e.g. at ski resorts) and accompanying exercise intolerance that was/is one of your remaining symptoms of illness. In general my mold reactivity is much better, but that's precisely the most noticeable symptom that I still get. It's mostly in upscale wooded areas.....e.g. a recent visit to a Sedona campground.

    I'm convinced that it's related to a combination of fire retardants and mold growing outside, but exactly what's going on to make it so bad, I'm not sure. Erik apparently has spent a whole lot of time talking to Judy Mikovits about his observations of this stuff in Incline Village/Truckee in the hope of getting someone to analyze it with a mass spectrometer, but thus far that's not happened.

    Anyway, I'm really worried about relapsing. It's encouraging that (last time I checked) you hadn't, but it seems that since you hadn't been sick for as long you had the advantage of not having accumulated as many toxins. I got sick in 1996, so I have a lot of catching up to do on that front.

    Do you have any thoughts for me?

    Have you heard of anyone else who's done really well on this drug?

    Thanks much for your help.

    Best, Lisa

    P.S. Feel free to write to me at my ya-hoo account, same user name, if you like.
    [This Message was Edited on 05/09/2010]
  2. Slayadragon

    Slayadragon New Member

  3. victoria

    victoria New Member

    can't help but read your update...

    good luck, I'm glad the valcyte is helping.

  4. Slayadragon

    Slayadragon New Member

    Hi Victoria,

    Thanks for your note!

    Best, Lisa
  5. Slayadragon

    Slayadragon New Member

  6. spacee

    spacee Member

    So glad you are doing so well. Hoping you don't relapse either!

  7. Chootik

    Chootik New Member

    Just came across your post here. I knew you were doing a lot of stuff for the mold but how did you decide to go on Valcyte?

    What improvements have you seen? I just started Valtrex again, because I think EBV is a problem for me.

    Also I wanted to ask you, did you ever have low grade fevers with Mold? I've been having those for a few years now and so far Zithromax didn't take care of it. Neither did Accyclovir. So I'm trying Valtrex.. but wondering if the fever could be from mold??

    Anyways, so glad that your're doing well. Keep in touch.