Discussion in 'Fibromyalgia Main Forum' started by gettingwell, May 30, 2008.
You score about a 6 or 7 on Lerner's scale?
if dr. lerner recommended it, i would. the disease only gets worse with time....there is no point in waiting in my opinion.
if you take it when you are less sick, you will likely have to take it for a shorter amount of time.
With out a question I would. I believe the side effects are less and the chance for more recover is greater.
Basically, I wouldn't take Valcyte unless I was mostly bedridden which I was. It hasn't helped me though and may have set me back.
I'd wait for Montoya's report on it to come out since it should be out soon no matter how I was functioning now though.
the Montoya study should be out soon and since Lerner announced some of his findings, he may write it up in a journal at some point as well. You may get a better idea of who gets well and what side effects there are - risk vs. benefits.
Especially since you are relatively high on the Lerner scale and taking the drug may cause you to be sicker before potentially getting well, it may be a good idea to wait.
I'm having severe doubts with regard to whether the viruses that many of us have are that important in terms of our well-being.
With a few exceptions, antivirals seem to me to be providing an awfully low return on investment for those who use them. (I mean in terms of time and effort, never mind the expense.)
Not everyone will agree with me, of course.
I agree with you. Montoya's initial results with the 9 out of 15 responding or 9 out of 12 depending on which article you read, really had me thinking this could be the answer for many of us. I'm not feeling very optimistic about that now from what I've been reading over the past year.
I did choose to take valcyte because I had high antibody titers to HHV-6 and EBV. Those titers have dropped to normal, and I have seen improvements.
However, I'm not well. I believe part (or all) of the reason for my continued illness is that I likely have other reactivated pathogens (HSV1 and Cpn---both of which I have high antibody titers to.)
So, I'm treating the Cpn now.
I would not take valcyte if I did not have high antibody titers to HHV-6.
However, we need to keep in mind that it is likely that we have more than one reactivated pathogen in us (those of us who are dealing with reactivated pathogens, as compared to those who are dealing with mold or environmental issues).
So, we must deal with everything that is making us ill.
And hopefully, at some point in time, our immune system will kick in and help keep the pathogens in the latent stage.
We need to remember that Valcyte was used by Lerner for CMV long before Montoya came up with the HHV6 Valcyte trial and it has been used for CMV with organ transplants as well for many years. So it isn't just HHV6 titers that need to be looked at.
Thanks for your reply. I tested negative for CMV.
how high are your HHV6 titres?
mine were a little high....if i could go back, i think i might have liked to try valtrex first.
Separate names with a comma.