to VALCYTE warriors i'm in my last month

Discussion in 'Fibromyalgia Main Forum' started by sascha, Jun 4, 2008.

  1. sascha

    sascha Member

    how is everyone faring??

    i'm miserable. @ 85% bed-bound right now; having severe GI distress. very weak. i have that tight vise around the neck feeling; plus bruised and swollen brain. any input is painful.

    otherwise- well, what else is there. just waiting to be done. hoping for the best out of this.

    a friend is driving me down to my Stanford appointment with Dr. Montoya this Friday. can't wait. hope he has info for me that helps. i have plenty of questions for him.

    he is presenting is Stanford research trial findings on June 19-22nd in Virginia, i think it is. that will be interesting.

    hoping for the best out of this for all of you, too. very best from Sascha
  2. jasminetee

    jasminetee Member

    Hi Sascha,

    Good to hear from you. Sorry to hear you're feeling so lousy. I am too. Too much pain and sickness.

    Thanks for letting us know about Montoya presenting the research findings. I'm very curious to see what he has to say as I'm sure we all are.

    I know it's hard to deal with not feeling better after doing your course on Valcyte. I hope you improve in the future.

  3. Timaca

    Timaca New Member

    Thanks for your update. Hang in there. Keep us posted on what Dr. Montoya has to say.

    I did see improvements on valcyte, but I'm not yet well. My antibody titers to HHV-6, EBV and VZV dropped with valcyte treatment. They are in the normal range now.

    I currently have high antibody titers to HSV1 and Cpn.

    I have started doxycyline to combat the Cpn. See for further info on this pathogen.

    Apparently my immune system went awry and allowed a host of pathogens to reactivate!!

    Sascha or Tee~ Do either of you have high antibody titers to other pathogens?

    Dr. Montoya will be presenting the results of his research later this month in Baltimore. The HHV-6 website hopes to post summaries of all the speaker's talks on their website after the conference is over.

  4. Timaca

    Timaca New Member

    I am taking probiotics (alternation various brands) due to the fact that I'm on doxy for Cpn. The probiotics constipate me. They have not relieved my GI symptoms, but in a sense have worsened them due to the constipation. However, this is better than C. difficile, which I had once before.

    I have not tried Epicore.

    For now, I hope to tolerate the doxy, maybe add in other antibiotics if necessary to kill off the Cpn (as my doctor sees fit to do so)....then address the HSV1.

  5. sascha

    sascha Member

    sorry you're feeling lousy, too. what to do....

    i thought i had the GI business under control. now i've been in trouble with it for over two weeks.

    there are a few posts on suggestions for treating GI symptoms. maybe i'll try putting a few into effect.

    anyway, good luck. let's eventually get very well and check back in!!! Sascha
  6. sascha

    sascha Member

    i am so curious to find out what my titers are now. i'll find out tomorrow,and want to get copies of all three sets of blood tests so i can compare.

    i had on my list of questions (for Dr. Montoya) to find out the significance of the titer counts- how they relate to improvement and wellness.

    it's good you have identified more pathogens- at least that means you can take action against them. maybe i have some of that going on and don't know it.

    best from Sascha
  7. sascha

    sascha Member

    thanks for very good suggestions. i appreciate them.

    i've been tested for parasites and none were found. i'm wondering if it could be part of de-toxing progress, or just a bad recurrence of IBS. i'm at a loss. i did take probiotics, and am taking digestive enzymes. (and pepto bismol) this bad GI phase has lasted now over two weeks, the longest ever.

    my wbc have been normal range.

    i plan to ask Dr. Montoya tomorrow about the trailing antibodies theory. i want to get his direct answer on correlation between titer counts and actual state of health.

    thanks so much- best from sascha