Lisapetrison re Valcyte/Famvir

Discussion in 'Fibromyalgia Main Forum' started by Gretchen12, Feb 6, 2007.

  1. Gretchen12

    Gretchen12 New Member

    I have been reading with much interest your reports on
    Dr. Guyer and your experience taking AV. I am so very impressed with your spirit and determination to get
    "truly" well, as I believe that most PWC don't ever become
    "truly" well again. I am digressing from what I really
    wanted to ask you, which is this:

    Has Dr. Guyer actually cured anyone yet with his protocol?

    Is this all just an experiment?

    Please see my recent post to Fungirl2100 re Prednisone.

    You will see that both my daughter & SIL are highly trained physicians from the best medical schools and neither of them know anyone in the medical field who really has THE definitive answer to CFS/FM.

    I notice that Dr. Guyer takes a holistic approach to medicine, which I sincerely believe is the way to go with this illness. The only thing I am skeptical about is using AV for a prolonged period of time.

    Thanks,

    Gretchen



























    thanks for your reply
    [This Message was Edited on 02/06/2007]
  2. Slayadragon

    Slayadragon New Member

    When I went to Indianapolis a month ago, I saw my doctor and also attended the wedding who has been a good friend since high school. I've known the rest of my friend's family since high school as well.

    The mother of my friend is the person who recommended Dr. Guyer to me nine years ago. I hadn't seen her in about five years. My friend had told me that she was doing well, but I had no idea _how_ well until we talked at the wedding and then had coffee a couple of days later.

    My friend's mom got exremely serious CFS in about 1995. It followed a major car crash in which she sustained a back injury, and then a "killer flu" of the kind we all know about.

    She was in her mid-50's and had to quit her job as an accountant. She said that for a while, she couldn't get up for more than 30 seconds.

    She met Dr. Guyer soon after she got ill, when he was just starting his practice. She has seen him every two months ever since, she said.

    The symptoms she had were classic CFS. Yeast and parasites. Food allergies. Endocrine problems. Muscle pain. Reluctance to do very much because of fear of crashing. Debilitating fatigue. These were all things we discussed in-depth at the time.

    I didn't discuss cognitive problems at the time. She talked relatively slowly and seemed to have trouble expressing her thoughts, though.

    She was not a recovery/relapse patient. Her illness was constant, except insofar as she used various treatments (of the sort listed in Teitelbaum's book) to get permanent improvement.

    Over time, she tried different things and got a lot better, but still wasn't wholly well. The last time I saw her was about five years ago. She was at home most of the time. She went out (to church, to go shopping) and occasionally would drive to see my friend (who was living in Virginia at the time). Like me, she spent a lot of time resting to make up for this. Based on her description, I'd say she was maybe 50-60%. She didn't have a normal life, but she had made a lot of improvement.

    I didn't know until I saw her at the wedding that she had tried Famvir. She went on it four years ago and stayed on it for around 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. The more I talked with her, the more I couldn't believe she had changed.

    She is unhappy 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?

    Dr. Guyer said he believes the adrenal/thyroid problems are viral, and just prescribed garlic for her. I believe that other than that and the adrenal/thyroid medicines, she just takes regular vitamins and minerals.

    She says she also suffers some residual shoulder pain, but says she believes it's from the car accident. Other than that, she says she has no health problems 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. She is grateful for having recovered, but she doesn't seem to me to appreciate just how remarkable her recovery is. She wasn't bragging to me about her life; she was just telling what happened.

    **

    This is consistent with everything that Dr. Guyer told me the day before the wedding about the patients of his who had gotten fully well. (He has no idea that I know this particular woman.)

    He told me that a lot of his patients have gotten totally well using a _combination_ of antiviral drugs and other treatments. He stressed the following points:

    * The AV's by themselves do not work to get people totally well. You have to build up the whole system first and then use the AV's. That way, the immune system can start functioning on its own soon after the AV's have killed off many of the viruses.

    * People do not get to full functioning while they're still on the AV. It takes a while after that for their own immune systems to take care of all the stuff that's causing problems.

    * Thus far, he has had good results using Famvir. He thinks of it as "Valcyte Lite." It does the same things that Valcyte does, but in a gentler and slower way. People need to be on it for longer periods of time.

    * He's only been using Valcyte since fall, and so the people who have used it have not had time to get fully well yet. Their results thus far seem consistent with the ones he's seen with Famvir. Especially for patients with really major viral problems, it gives quicker results.

    * He tries to minimize the use of Valcyte though. He doesn't want to use anything too toxic (including high doses of drugs like Famvir), since that weakens the body overall and makes it less likely that the natural immune system will have the strength to start working on its own.

    * A lot of patients get fully well after time on the AV's and then more time recovering. They feel well. Their test measures (NK Cell activity, interferon alpha, Rnase-L, apoptosis) go back to normal.

    **

    I have developed a good deal of trust in my doctor over the years. He expressed enthusiasm for certain treatments from time to time, but he never told me before that substantial numbers of patients like me were getting truly well, and never stated that he thought it would happen to me. This time he seemed quite convinced.

    (I have worked my way up to 60-70% over the years with a great variety of treatments, which makes me think that my core strength is pretty high. Being functional at all with the number of viruses I seem to have--based on my test results and Famvir herxing--is upon reflection quite an achievement.)

    I still would be pretty dubious (although still plugging along) that I was going to get really well, if I hadn't had the first-hand experience of seeing and talking with my friend's mother.

    I knew her before she got sick, after she got sick, and now after she's obviously gotten well. She seems in better health now than I've ever seen her, even though she was fully functional before the car accident and "flu."

    Obviously, this is just one patient. However, the fact that it's consistent with the experience that Dr. Guyer said he has seen in many patients makes me hopeful that I will get that kind of recovery as well.

    Which doesn't mean on certain days that I don't feel like giving up, of course. At least for some of us, they can be a hard road.

    Anyway, I will keep reporting back, and so you can see what happens to me.

    Best, Lisa


    [This Message was Edited on 02/06/2007]
  3. Gretchen12

    Gretchen12 New Member

  4. Slayadragon

    Slayadragon New Member

    I'd rather not take an AV for a prolonged period of time either.

    I avoid drugs in general, and the AV's in particular suck.

    Best, Lisa