Long-term, high-dose valcyte

I have not been able to find much research or documentation for taking high-dose valcyte long-term, so I thought I would start a blog to help others who may find themselves in the same situation I am in right now.

Some background: For the past few years I had suffered from increasing CFS symptoms, after starting a high-stress work situation. I believe now that my symptoms began years before (I may write about this later), but it was at this time that they steadily increased in severity. It started with neurologic symptoms -- anxiety, depression, insomnia -- but later included extreme fatigue and joint and muscle pain.

I had an IgG antibody test for HHV-6 which came back 1:1280 (1:160 or above is considered high). I decided then to try the Montoya valcyte protocol of 3 weeks of 1800mg of valcyte per day, then 900mg a day after that. (Note: Montoya's criteria for this protocol include elevated Epstein Barr Virus levels, as well as HHV-6. However, I had been taking acyclovir for a few months previous, which would have affected my EBV levels.) After 6 months, I was retested for HHV-6 and it had come down to 1:320. While this was a significant drop, it is still high enough that, had it been my original result, it would still have met the criteria for treatment with valcyte.

During the 6 months that I was taking the medication, I did not enjoy what I would consider a significant improvement. After an initial Herx-type reaction (I will not call it an actual Herx or die-off, because I have been reminded that the medication does not actually kill the virus per se, but rather prevents it from replicating) I had a short time where I seemed to be feeling a bit better (this coincided with taking a vacation), but I soon returned to my baseline and remained there.

In consultation with my physician and my health adviser, I have decided to return to the higher dose of valcyte (900mg twice a day). The plan is to recheck in 2 months to see where my viral levels are before deciding exactly how long to continue on the higher dose. My reasoning is that, when I initially took the higher dose, it knocked out the virus enough for me to start to feel better, however the lower dose was not enough to keep the virus in check, for whatever reason (complicated infection, crappy immune system,etc.), so I will need to stay on the higher dose until I have really kicked its ass. I have also added 1000 mg of inosine to hopefully boost my immune system (I started at 250 and gradually increased to 1000).

I had another herx-type reaction when I went to the higher dose, but it was shorter and less severe than the first time. A week in, I feel about back to by baseline again. I've had a few bad days and one fairly good day (let's call it an 7 out of 10 -- a 10 would be feeling like I did on an average day before I got sick). I will try to post updates every week or so.

Comments

I think there is some of us that dont have an immune system that bounces back after vaclyte lowers our viral load. I think we need to somehow increase our nk function to maintain these gains once we stop valcyte, stay on other antivirals like valtrex or famvir and maybe immunovir/inosine. For myself it seems to have lowered my neutrophil count, so i have started lithium orotate which has been showin to increase neutrophil counts. We somehow need to improve this immune function but nothing in black and white.

good luck, look forward to seeing your updates,
cheers!!
 
The long term (6 month minimum) is kind of the rule of thumb. Maybe, titerating down over a longer period while trying to get the immune system jump started will be a good course of action or possibly switching to Valtrex, Vistide or Famvir and still keeping in mind about the jumpstart on the immune system.
 

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