Discussion in 'Fibromyalgia Main Forum' started by Piperlilly, Sep 30, 2007.

  1. Piperlilly

    Piperlilly New Member

    I am EXCITED!!!! I am EXCITED!!!!!! For those of you who have stopped taking valcyte because it made you too sick --I would encourage you to try again. It has taken me more than 7 months to see any kind of difference. I went through symptom after symptom of unrelenting he_ _, mental he_ _, was mean and crazy as he _ _ because of the pain, and then my entire body seemed to go through a major fatigue and then... it started turning around. It is happening!!!!! I can only believe that I will continue to improve. I know I will have to go through more bad days, but after all of these years, this is the treatment helping me (and I have tried everything). Only people with these viruses know what it would mean to feel "less sick". My body is feeling less sick each week I stay on this. Don't give it up. I've had these viruses for more than 23 years, have missed life and have wanted to end it many times - you don't want to look back like I have to and see all of the years missed. I am so encouraged because of my results, that I am looking for a doctor for my daughter because she has had headaches for years and is now starting with the fatigue and rashes. I would do anything for her not to live the life I have lived. I know I am being pretty intense, but this is your life!! I believe that the valcyte will help many of you who have these viruses, so please consider this treatment.
    If anyone knows of a treating doc in Tallahassee, Florida or Arizona, please let me know. Piperlilly
  2. sascha

    sascha Member

    seven months- that's good to know. i hope to be going on valcyte in november. it means a lot to hear your good news. post back on how you're doing from time to time- i'll look for your name.

    i feel glad for you, and encouraged for the rest of us.

    best of luck! sascha
  3. ladybugmandy

    ladybugmandy Member


  4. gardendi

    gardendi New Member

    Pipperlilly-Yahoo for you. Thanks for the post.
  5. spbm

    spbm New Member

    Thank you so much for sharing your good news. Your post made me cry because I can only imagine how good it must feel for you to start improving after being sick for so many years. I have a prescription for valcyte, but have been putting off starting it because of all the side effects and the mixed results. It is so encouraging to hear that it has helped you. Your message will help me get through the expected bad days when I start the medicine.
    God Bless.
  6. stschn

    stschn New Member

    This is so good to hear thank you for letting us know how you are doing. I just got on the V team on 8/14 and the herxing is hard. I knew it would happen just really didn't know how difficult it would be. Posts like your help all of us. Thanks so much.
  7. Timaca

    Timaca New Member

    I may have some leads for a doctor in AZ who may be willing to prescribe valcyte. However, the patient would need to meet Dr. Montoya's criteria for treatment.

    Can you private message on this site? If not, I'll post my e-mail address in the next post and you can correspond that way...

  8. jasminetee

    jasminetee Member

    This is fantastic! I am so happy for you, and hopeful for us all. I'm back on it and hope I can second you.

    I hope you continue to improve. Any details you feel like adding would be appreciated too.

    Health and Happiness,
  9. clo1

    clo1 New Member

    Wow...thanks so much for that...I'm starting week 13 and I have been on and off feeling have given me and many others a desperately needed boost...keep us posted...thanks again
  10. Piperlilly

    Piperlilly New Member

    Sometimes its almost difficult to explain what its like going through all of this. From the beginning it seemed to me that this valcyte might help me because I did have such bad herx and never ending cycles of feverishness . It has been so up and down, or should I say horrendously bad and then less bad. Then it seemed to be bad all of the time and you wonder what's going on. Then, at last, several decent days together when your body feels less sick and it feels different and better. The herx still come but aren't as bad and there are good periods. I still have a ways to go I'm sure. But I know that this is really, really working for me and I hope the valcyte is strong enough to totally get "rid" of these viruses. I hope it will work for you all too.

    Its sad that my daughter once mentioned to me that she rarely saw me smile when she was growing up. You spend your day forcing yourself to do whatever it is you can do that day because you have no stamina, just loads of pain and fatigue. Its hard to be joyous if you feel so bad that you have to force yourself through life just making yourself get through the day. So you know when you start "smiling" that there is real hope for the future...and I'm starting to smile. Hang in there! Piper
  11. jasminetee

    jasminetee Member

    I hope you continue to improve. Keep us all posted!

  12. sickofcfids2

    sickofcfids2 New Member

    Hi Piperlilly,

    I am new to Valcyte and new to this site and message board, but have had CFIDS for at least 10 years, if not longer. In fact, within the last 10 years I tested positive with such high levels of antibodies to CMV, EBV, HHV-6, and other viruses that a company was interested in buying my blood plasma for research purposes!

    Before I give some history of my CFIDS on this board for others who may see themselves in it -- and at 46, I have a long history that may help those who are younger, which I want to do if I can as I never want anyone (even people who might be unkind or cruel and hateful to others) to suffer from ME/CFIDS or fibromyalgia if they don't have to; with this in mind, I should also let you know that I am donating my body to Sun Health Research Institute (in Arizona, near my home) as part of a study it is conducting with the National Institutes of Health on fibromyaglia -- if you're up to it, I would love to find ou:
    1. how you're doing and
    2. if you felt a difference right away when you began taking the Valcyte, which I desperately wish I had known about a year ago so I wouldn't have lost so much of my life, time and energy. I can never get those years back. They are gone forever.

    In any case, I also want to tell you about a wonderful doctor in Arizona, who is actually in Peoria, Arizona. His name is Ruben Aguilera, M.D. and he is the greatest. He is open to working with patients, prescribing new meds and doing whatever it takes to help patients feel better. He is an awesome doctor and a wonderful human being who has had health issues of his own, which I think is part of what makes him super compassionate. I have had some outstanding doctors in the past, but he is the best.

    Let me know if you want his contact information.

    Thanks again. I will write more later when I feel more "up to it".
  13. sickofcfids2

    sickofcfids2 New Member

    I have a doctor who, had we known about Valcyte, would have prescribed it for me over a year ago. Let me know if you want more information on Ruben Aguilera, M.D., who is in Peoria, AZ, and immediately prescribed Valycte for me at 900 mg a day the moment I read about the HHV-6 link and Dr. Montoya's research. He is an excellent physician, full of compassion and caring. I highly recommend him, although he has had health issues himself and because of this I would hate to overburden him.
  14. sascha

    sascha Member

    this post was started last year when Piperlilly was very excited about getting positive results from valcyte, though being on it was h---ish. i was hoping to go on it at that time.

    i since have had a 5+ month course on the valcyte. it indeed was h***. BUT- i, too, got good results. i started with a very high HHV6 count, and it went way way down (from over 10,000 to most recently just over 300)

    i lost sick symptoms that i constantly was recycling through- now i am working on next phase; getting strength, stamina, energy back.

    after valcyte, i went to valtrex; then as that was still too expensive even though i was just doing the co-pay, i was put on acyclovir. no side-effects anymore- perhaps tiredness.

    Piperlilly- i wish you would see this string of posts again and report in! best, sascha
  15. ladybugmandy

    ladybugmandy Member

    i think people might have improvement sooner if they add valtrex to the regimen like dr. lerner does...