I underwent a seven-week course of IV ganciclovir (the active metabolite of Valcyte) at a dose of 900 mg/day, which is equivalent to a dose of Valcyte at 900 mg/day. At the end of this seven-week period, my condition had improved two levels, from severe to mild.
Very interesting post, zzz.
That certainly sounds like a spectacular improvement, two levels in 7 weeks of IV ganciclovir. So you were literally bedbound with severe ME/CFS, and 7 weeks later you had only mild ME/CFS (which usually means patients are fit enough to go to work)? Would you have any weblinks to stories of other ME/CFS patients that have responded that fast to ganciclovir or Valcyte?
One theory that might explain your rapid response to this antiviral is that you could have a chronic
productive viral infection that ganciclovir can address, rather than the chronic
abortive infections that Dr Lerner believed underpins herpesvirus ME/CFS.
In
Dr Martin Lerner's abortive infection theory of ME/CFS, ME/CFS patients are posited to have
abortive herpesvirus infection (where the virus infects a cell, and the infection is ongoing in the cell, but the virus is not able to replicate and not able to produce more viral particles); these contrast to
productive viral infections (where the virus is able to replicate in a cell and produce many more viral particles).
Dr Lerner believed the reason it takes up to 2 years before the full benefits of herpesvirus antivirals such as Valtrex or Valcyte manifest in ME/CFS patients is because these antivirals
do not target the abortive infection; these antivirals can only inhibit the productive viral infection.
But because in the body a productive viral infection may help replenish and maintain the abortive infection, if you target the productive infection with Valtrex or Valcyte,
eventually the abortive infection will dwindle. That's the theoretical basis of Dr Lerner's antiviral treatment of ME/CFS. And this theory offers an explanation of why it seems to take an inordinately long time for Valtrex or Valcyte to work in ME/CFS patients.
Normally antiviral just take a matter of weeks to work, so the fact they usually take up to 2 years to manifest full benefits indicates that we may not be dealing with a regular productive infection in ME/CFS.
Dr Lerner says that if antivirals were developed which could directly target the abortive herpesvirus infections he posits exist in ME/CFS, then patients would get better in a matter of weeks, rather than many months or years.
So in your case, one could speculate that your ME/CFS might not be due to an abortive infection, but rather a normal productive infection, which may be why ganciclovir worked so rapidly for you.
Another thing: if I remember correctly, did you not have issues with
varicella zoster virus? Since ganciclovir / Valcyte is active against VZV, that might explain your success with this antiviral. There are
some theories that suggest VZV might be involved in ME/CFS.
These results can be understood in light of Dr. Montoya's findings (and my own experience) that Valcyte is a powerful immune modulator, as well as Dr. Montoya's findings that Valcyte reduces microglia-induced inflammation in the brain. From my experience, and from those of many others at the time who took Valcyte and/or ganciclovir, it appears that this drug can be very helpful to PWME regardless of their history with herpes viruses.
The immunomodulatory and microglial activation-inhibiting effects of Valcyte certainly could provide another explanation of why Valcyte works for some ME/CFS patients, and Prof Montoya has pointed out these possibilities in his published studies.
It would be interesting to know how many ME/CFS patients who do not have any active infection with any of the herpesvirus infections that Valcyte targets (namely EBV, HHV-6, CMV, VZV, HSV-1 and HSV-2) get improvements in their symptoms from Valcyte. In such patients, you might speculate that the benefits were due to the immunomodulatory and microglial activation-inhibiting effects of Valcyte.
For this reason,
@Hip, I do not think that a time minimum of six months should be necessary for Valcyte treatment in this poll, as there were many other people who responded as I did. Typically, people began responding after about two weeks with IV ganciclovir, as I did.
The reason I stipulated a minimum of six months treatment (not only for Valcyte but also for other treatments in this poll) is that I did not want people who had only half-heartedly tried these treatments and got negative results to vote.
For example, if someone tried Valcyte for say only six weeks, and then got no improvement, I would not want them voting in this poll, because they have not given Valcyte a chance to work. Their negative results are thus not valid, and would skew the results of the poll if they were included — in a way that would make Valcyte seem less effective than it actually is.
So the six months stipulation is just a safeguard against that (in fact it should really be a bit longer than 6 months, because
Lerner's clinical trials showed that the full benefits of Valcyte and Valtrex only appear after 2 years).
This is also the reason I stipulated that ME/CFS patients should have high titers to herpesvirus infections: to ensure that Valcyte was appropriately used (the antiviral effects of Valcyte would be of no use in patients with purely enterovirus infections).
But I do think your results with ganciclovir / Valcyte are very interesting, and perhaps we need to have another poll just on people who took ganciclovir / Valcyte, a poll focusing on the timescale of their improvements. As you suggest, perhaps there could be two subtypes of patients who respond to Valcyte: one subset has a rapid response appearing in less than 2 months; but for the another subset it may take up to 2 years for the full benefits to manifest.
