snowathlete- I agree that the titers do not seem to be accurate indicators in many cases of whether we have an active infection, since we seem to re-active viruses even when our IgM isn't positive. I think that is why we are in a tough position convincing doctors to trial antivirals- since diagnosing an active infection in a CFS patient requires clinical judgment, then only a doctor who has experience with CFS patients understands how to interpret all of the test results and the symptoms to determine whether antivirals are warranted. Since not many doctors spend the effort to learn more about CFS, then we are stuck seeing one of probably only 10-20 doctors in the US who have experience. And we have a delayed response to antivirals, so the trial has to go on for months before we know if it is having a positive impact.
Does anyone know if Montoya et. all published any of their data on the double-blind study? There is good info in the paper I posted, but it's only data for 12 patients and it would be great to have more examples of activity levels of patients who take a course valcyte correlated with pathogen test results.
Also, does anyone see Montoya and know what test results he looks for now to determine treatment course?
Hip- I think the 4x rule is just to make sure the IgG titers are significantly higher than that in an average healthy control. I will see if I can find some more quotes from the viral experts. But the more I look, the more that "clinical judgment" is playing a significant part in diagnosing active infection, which makes it difficult to create a simple flowchart. I suspect the lead clinicians are following a relatively objective algorithm for diagnosis, but I am not sure if any of them have articulated it outside this paper.
I think I mentioned this before, but I see Dr K and he prescribed valcyte to me and my IgG levels (other than parvo) appear to be like the healthy controls. So I am starting to think his algorithm may be:
nk cell function<=10 (or similar) + cognitive and autonomic dysfunction indicative of CFS => prescribe valcyte
nk cell function<=10 (or similar) + cognitive and autonomic dysfunction indicative of CFS + bed-bound => consider rituximab