Has ANYONE gotten better on Valcyte?

Discussion in 'Fibromyalgia Main Forum' started by mcflury, Feb 6, 2008.

  1. mcflury

    mcflury New Member

    I have read all of the initial reports and know the success that several different doctors have had. I have also been trying to keep up with some of the Valcyte user posts on here. Has anyone on this site experienced any long term substantial improvement with their symptoms?
  2. sscape

    sscape New Member

    Hi Ive improved on Valcyte. I have been able to go all day without lying down for long periods. I've also been gong thru one of the most difficult times of my life with my father being terminally ill and sleeping in hospital chairs. I did end up catching a nasty bug, but Im on antibiotics and still functioning better than pre-valcyte. I believe that they are not sure how to evaluate who to give it to and who not to give it to.

    Sorry- I wish I had more information or clear information. CFIDS is a set of symptoms so it could be caused by several different sorts of things. Perhaps very different types of things.

    I'm on my 7th month and I've improved even with an enforced schedule that would stop a healthy person. I've not had antibiotics until recently, and this is the first time in 15 + years I've gone all winter without antibiotics.

    Right now Im considering Low Dose Naltrexone. I saw how unperceived pain caused my father extreme fatigue and I think this might help some of my symptoms. There were many times that my dad felt unwell and tired, but when he was given pain medication he perked up and had more energy, even with the medications sedating effects. He did not percieve that he was in pain. Go figure! Low Dose Naltrexone encourages the body to make more endorphins and this seems to help people feel better and regulate the immune system help the body recognize self from non self. I may be missing somthing- look it up to be sure. They are using it for lots of things, so it may just be a fad. Pooh...

    I'm greedy. I want to be well.

    Im crashed for the next week minimum.... Good luck! I really hope you find your magic bullet
    [This Message was Edited on 04/24/2008]
  3. mcflury

    mcflury New Member

    Thank you sooo much for your reply. I am sorry to hear about what you have been going through in your personal life and know if you could be surviving with all of that then the Valcyte did make a big difference! Do/did you have HHV-6, EBV, or CMV and/or which were you tested for. Please keep us up to date on your recovery and the Naltrex. if you try it.
  4. mcflury

    mcflury New Member

    I never got a chance to thank you for your information. I believe you are with a great doctor and researcher, so I hope you too get your results. I started the Valcyte yesterday and can only pray now that it works. As far as I know I only have HHV-6. I am wondering if the combination with EBV is when the results on Valcyte are not as good. Dr. Lerner was using Valtrex for EBV and that doesn't work for HHV-6, so I am wondering if the same is true for the oposite and EBV is not responding to Valcyte or causing a greater reaction in people. Take care and keep the info coming!
  5. erica741

    erica741 New Member

    I did 6 months of Valctye under Montoya and did not recover.

    But please keep in mind that those who recovered on Valctye are back to normal, active lives and no longer post here. They will ususally pop in to report their recovery, and then move on with their life.

    I hope you have more success on Valcyte. Remember to rest and take care of yourself.


  6. mcflury

    mcflury New Member

    Thanks for the kind thoughts and input. I was wondering if any direction to eatting before you took your dose was given (like how much or how soon) also do you know if all of the study group had both HHV-6 and EBV? Have you ever taken Valtrex or any other antiviral before this?
  7. deserella

    deserella Member

    I've been on 9 months and plan to do 3 more months. This past month has been the greatest improvement for me. I feel like my over all stamina and energy increases each week. I can tell that by body is healing and wants to do more. Kind of like when you have the stomach flu and are out of it sick and then suddenly you feel better. That's how I'm starting to feel. Yesterday I drove to Salt Lake which is about a 35-40 minute drive. It's the first time I've driven a far distance in over a year. SO I hope to continue to report postive progress! There is someone named along the lines of Hubcap (not quite sure exactly the name is) but he has had significant improvement.

    I think for some people you have to be on the drug longer. At six months there is no way I was near better. I threw in the towel because I was so frustrated with the way I felt. But I'm hoping this will all be worth it. My leg pains are still bothering me. But my doctor is testing me for some possible causes. I just googled valcyte and leg pain and had some medical pages show up and swelling of the legs and muscle and joint pain were common according to the site. In the information I get when I order my valcyte there wasn't anything along those lines in the side effect section. I don't know if we are allowed to post sites but I'll go ahead. http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a605021.html

    God bless you all and hang in there. You are all in my prayers.

  8. mcflury

    mcflury New Member

    Thanks for the reply. I am so glad that rdhb started this up again. It seems like fate to me as I started valcyte treatment 2 days ago. Is it as expensive for you there as it is here?? I have to pay over $500 with my insurance for 60 tabs. I guess it beats not having insurance though. I'm excited that you mentioned the time thing. I think some of the problem may be that people are not using it long enough to recover. I think in Dr. Lerner's video he said he was on AV treatment for a year and a half to recover. Good luck with your continued recovery. Couple of questions if you have the time: Did you test positive for EBV or HHV-6. How often are you having blood tests done. Did you ever have your blood tested for levels of gancycl. in it? Do you take in AM and how much do you eat when taking? Thanks a ton!!
  9. sscape

    sscape New Member

    I have EBV (as far as I know I still do,) Mono was my big illness that started this. My MD just writes a script. I've not been tested for HHV6 or CMV because he does not claim to know what I have and doesn't see the point. I;ve had other MD's do the test and yet say-
    "It doesn't mean anything" so I'm just going with this now. I'm doing much better on the Valcyte and

    have just started the LDN with the wildest dreams imaginable. I had to half the dose from 3 to 1.5 in order to sleep and stop my racing heart and head. I hope to gradually up the dosage in my greedy and perhaps dangerous quest for health.

    I feel like I'm playing a crazy kind of Russian Roulette. Maybe this bullet cures, BUT these bullets make you sicker, these bullets keep you out of the hospital (antibiotics and steroids but have bad side effects), and many of them cost too too much, and one may kill you on a bad day. I do not take this stuff lightly, although it sounds like I do.

    I'm not posting or online here much. My largish family kind of eats up all my healty time, although I've been taking a few nibbles for myself of late. It's hard to post when you have no real information or cures other than your own personal anecdotes- which should not be taken as medical fact for another individual or for the population. Perhaps it wasn't the Valcyte that made me better (although I'm pretty near 100% sure it was) The studies must be done properly. I'm obviously not 100% well or I would not be risking the LDN. Im aiming for health enough to work part of full time without lying in bed for the rest of the time. Until now I lay in bed unless I was driving kids to and fro- and sometimes not even that. Im not too far from being in bed all summer letting my kiddies run wild for three months.

    Good luck. I know how hard it is to make hope out of darn near nothing at all.

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