slayadragon
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I've been on Valcyte for almost seven months and am going to be talking to Dr. Guyer about it this week. I thus wanted to see if I could get a sense of the "buzz" on this drug.
(Cort, do you know?)
According to Dr. Cheney's web site, the people in Dr. Montoya's initial group who did well on the drug hadn't been sick for very long. In the second study, which included mostly people who had been sick for a long time, not many improved by a whole lot.
I've only personally interacted with a couple of people who feel that they've gotten close to full wellness on the drug.
The one I "know" (in internet land) best is gasolo/Gary from ProHealth, who (last time I heard from him) said he was pretty much well. His cognition is pre-illness, but he has occasional exercise intolerance and can't push it too hard, he said. He had been sick with CFS for less than two years when he started. His illness was "moderate" (meaning that he was still working part-time as a surgeon). He followed Montoya's protocol--1800 mg for the first two weeks, 900 mg for six months. He said that he was very sick the whole time he was on the drug, and that it took him another year before he got anywhere close to pre-illness.
Another person on ProHealth, Dhamma, said at one point that she and her daughter had recovered fully on the drug. I actually may have her e-mail address, so perhaps I'll try to get in touch with her.
I wonder how the people who recovered from Montoya's initial group are doing.
Dr. Lerner apparently says he has people get back to full functioning on the drug, but I've not heard from them. I've heard from some people who have improved a little bit, and some who say that Dr. Lerner tells them that they must not be taking the drug (even though they say that they are) because they've not improved.
My own history is that I couldn't take antivirals at all when I was getting toxic mold exposure. About 18 months after starting this absurd mold avoidance, I experimented with Famvir and tolerated it fine. My mold reactivity (the extent to which it bothers me) went down right away.
Valcyte increased my mold reactivity, so I had to go farther out into the wilderness at first. Oddly, I had a whole lot of painful detox when first on that drug. I didn't get the die-off that non mold avoiders always report though. I've been on 900 mg (plus 1000 mg of Famvir) the whole time.
I think it's helped me a lot. My mold reactivity is a whole lot lower than it used to be, to the point that I'm getting pretty close to being able to move back to a normal life. (I'm being really cautious.) I'm still getting a whole lot of detox, and big mold exposures are noticeable. My brain is pre-illness a lot of the time, though the detox interferes with that. Other than that, I'm 100% well with no CFS symptoms.
I wonder how long detoxing all the remaining crap in my system would take. It still feels like there's something wrong with the detox capability, since non-CFSers don't seem to excrete toxins with nearly this much pain no matter how much exposure they've gotten. I wouldn't be surprised if inability to detox were the CORE dysfunction associated with XMRV or whatever pathogen's got hold of ius.
Anyway, I'd like advice on how to proceed with the Valcyte.
Should I continue to take it?
I really worry that it's going to stop working.
Thanks for your help.
Best, Lisa
(Cort, do you know?)
According to Dr. Cheney's web site, the people in Dr. Montoya's initial group who did well on the drug hadn't been sick for very long. In the second study, which included mostly people who had been sick for a long time, not many improved by a whole lot.
I've only personally interacted with a couple of people who feel that they've gotten close to full wellness on the drug.
The one I "know" (in internet land) best is gasolo/Gary from ProHealth, who (last time I heard from him) said he was pretty much well. His cognition is pre-illness, but he has occasional exercise intolerance and can't push it too hard, he said. He had been sick with CFS for less than two years when he started. His illness was "moderate" (meaning that he was still working part-time as a surgeon). He followed Montoya's protocol--1800 mg for the first two weeks, 900 mg for six months. He said that he was very sick the whole time he was on the drug, and that it took him another year before he got anywhere close to pre-illness.
Another person on ProHealth, Dhamma, said at one point that she and her daughter had recovered fully on the drug. I actually may have her e-mail address, so perhaps I'll try to get in touch with her.
I wonder how the people who recovered from Montoya's initial group are doing.
Dr. Lerner apparently says he has people get back to full functioning on the drug, but I've not heard from them. I've heard from some people who have improved a little bit, and some who say that Dr. Lerner tells them that they must not be taking the drug (even though they say that they are) because they've not improved.
My own history is that I couldn't take antivirals at all when I was getting toxic mold exposure. About 18 months after starting this absurd mold avoidance, I experimented with Famvir and tolerated it fine. My mold reactivity (the extent to which it bothers me) went down right away.
Valcyte increased my mold reactivity, so I had to go farther out into the wilderness at first. Oddly, I had a whole lot of painful detox when first on that drug. I didn't get the die-off that non mold avoiders always report though. I've been on 900 mg (plus 1000 mg of Famvir) the whole time.
I think it's helped me a lot. My mold reactivity is a whole lot lower than it used to be, to the point that I'm getting pretty close to being able to move back to a normal life. (I'm being really cautious.) I'm still getting a whole lot of detox, and big mold exposures are noticeable. My brain is pre-illness a lot of the time, though the detox interferes with that. Other than that, I'm 100% well with no CFS symptoms.
I wonder how long detoxing all the remaining crap in my system would take. It still feels like there's something wrong with the detox capability, since non-CFSers don't seem to excrete toxins with nearly this much pain no matter how much exposure they've gotten. I wouldn't be surprised if inability to detox were the CORE dysfunction associated with XMRV or whatever pathogen's got hold of ius.
Anyway, I'd like advice on how to proceed with the Valcyte.
Should I continue to take it?
I really worry that it's going to stop working.
Thanks for your help.
Best, Lisa
