Montoya and Lerner at CFS Conference?

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jan 15, 2007.

  1. Slayadragon

    Slayadragon New Member

    I know that those of you who attended the conference are planning to share information soon, but I seem to be a bit on the impatient side about this one. :)

    Did anyone hear Dr. Montoya or Dr. Lerner talks on Valcyte?

    If so, did they say anything interesting?

    Thanks!!!!
  2. foxglove9922

    foxglove9922 New Member

    Lisa,

    I'm with ya! So impatient in particular what these 2 docs had to share......so I'm giving this the BUMP

    My CFS doc was there as well and I will have a phone consult later this week. She is also working with Montoya and is interested in Valcyte.

    Foxglove
  3. Slayadragon

    Slayadragon New Member

    THe thread "Valcyte Observations from the CFS Conference" seems to address this issue.

    Based on it, Montoya and Lerner didn't seem to say much except to announce they were using the drug.

    I'm pretty annoyed that they didn't give more anecdotal observations.

    I am supposed to start the drug in another couple of months (I currently am using Famvir).

    My doctor has used the drug on more patients than Montoya has at this point, and so hopefully he can give me some helpful pointers before I start.

    If so, I will share them with the board.
  4. foxglove9922

    foxglove9922 New Member

    Lisa, please do keep us posted on your progress with Valcyte when you give it a shot.

    I'm currently doing Doxy and Valtrex......same ole, same ole......herx and then a tiny lift only to plateau again. Hoping it gets me through this semester of school anyway.

    Best wishes,

    Foxglove
  5. Slayadragon

    Slayadragon New Member

    How long have you been on the Valtrex?

    Here is a post I put on another thread. It's at least slightly possible the Valtrex is doing more than you think.

    **

    My friend's mom got exremely serious CFS in about 1995.

    She said that for a while, she couldn't get up for more than 30 seconds. Gradually she tried different things and got a lot better, but still wasn't anywhere near normal.

    She went on Famvir four years ago and stayed on it for 18 months. She said that she got somewhat better during this time, but that she was also doing other things and wasn't sure if the Famvir was responsible for her improvement. She didn't have any herxing symptoms.

    However, soon after that (6 months to a year) she got _wholly_ well. She is 67 and now is at a 10+. (The healthiest and most glowing 67-year-old I know, actually. This is complete change from how she was even five years ago).

    Her only complaint is that she still has to take thyroid and adrenal supplements to feel her best. She thinks that if she were _truly_ well, she wouldn't need anything. But how many people who are almost 70 are in totally perfect health (meaning easily able to do 12 hours of busy activities every day) and with no drugs at all?

    She does not give Famvir the credit for making her well, and I agree that it is extremely unlikely that it would have helped that much if she hadn't done all kinds of other stuff to address her health problems.

    I also do not believe she would have gotten _wholly_ better without the Famvir, though. Very very few people with CFS (especially those who start out really sick) get well, much less vibrantly well.
  6. foxglove9922

    foxglove9922 New Member

    Lisa,

    I was on Doxy for 18 months which eliminated the IBS and 2 mycoplasma infections. I herxed in the beginning and then pulsed another 6 months until the herx stopped.

    I was on Famvir for 6 months.....same thing herxed like the devil in the beginning and then pulsed until the herx stopped.

    I've had 17 bouts of shingles in the 6 years I've had CFS. YUP, you read it right,,,,,local doc just can't believe anyone can get shingles that many times (had then swabbed, scrapped and lanced), yup shingles.

    My CFS doc has me now on a maintaince dose of Valtrex to keep them a bay and I herxed for 4 days to the point I thought I couldn't make it.

    I'm going to really push to take a shot at the Valcyte as long as the doc can monitor my bone marrow closely and hopefully my insurance will cover it,,,,just thought of that.

    Foxglove
  7. Slayadragon

    Slayadragon New Member

    My insurance company told me that they cover Valcyte. Hopefully they still will do so by the time I'm ready to go on it.

    My drug coverage covers most things but is not perfect.

    They wanted my doctor to fill out a form in order to give coverage for Provigil (which turned out not to be an appropriate drug for me anyway).

    My big disappointment thus far is that they don't cover any sort of Nexavir. My doctor said it would be a good adjunct if I could get coverage. The next time I see him, I will ask if he thinks it would be worth the $500 a month for a short period of time.

  8. foxglove9922

    foxglove9922 New Member

    Hey Lisa, sorry first of all that we got off topic here but I think Dav2000 has a similiar post up on Dr. Montoya's work.

    Anyway, my insurance did cover the Nex???? whoops lost the ability to spell again but I think you know what I mean. I'm currently utilizing the bovine version of Kutapressin but my insurance company flat out denies coverage for Provigil which was a disaster for me anyways.

    Wishing you the best

    Foxglove