Very useful info on using antivirals, also cyclical vomiting and hypotonia

[Guest guest]

Forwarded with permission

Yes - the antivirals we've used were Valtrex and Famvir.

Rarely do people in our groups see these 'aha' moments when they first start antivirals (after maybe a mild increase) - the best work they do starts showing up after like a year, according to our doctor, and he said we should always commit to 2 years on these meds to first gain a hold on the viruses and keep them suppressed, which happens during that first year, and the second year is when the immune system starts normalizing some (more for some than others - my boys benefited very well) and that's when you see the development start picking up in the missing places. Shortly after that first year, several people start seeing that change to the eyes - a kind of brightening and an different improved eye contact - where for the first time the eyes lead the head ... it's hard to describe but the first time I saw it I cried - first time I think I ever cried from joy.

There seems to be a 9 month window, too, from when you stop antivirals to when you would see regressions from stopping them begin. That was definitely our experience too w/my CFS son (he's 8 now). That 'something isn't quite right' started 9 months after stopping the antivirals, then a low grade temp of 100.0 for 11 months (it would go down when he got up and moved around so I couldn't get it documented at the doctor's office). Then one night he looked so great, and was so " with it " that I sat down to pat him, and felt the heat rolling off .... he had a 106.9 fever, and was bright eyed and happy, if just lying down. We didn't take him to the ER - you don't have long w/a temp like that so you just have to get it down quick, so we sponged him down, and he was just so great that I didn't take him to the ER. I regret that now - no documentation again. Once again, he was relatively well for almost right at 9 months again before he started falling back again.

With the immune dysfunction and possible infection as the paradigm, then antivirals for the long term are highly indicated (and I believe antifungals have been even more helpful for my boys and would probably choose them if I had to pick only one). I think they're one of the most important tools although unlikely to show huge gains all at once. Some AIDS doctors will keep their patients on suppressive meds long-term regardless of whether they see gains - I believe that is Dr Klimas's belief and her input on the treatment plan that she helped my sons' doctor design.

The exception on big gains is that many people see major decreases in seizures and many are often off seizure meds at the end of a year or on much lower doses (according to our doctor saying once). I have a listmate who's son had cyclical vomiting syndrome and horrible migrains, and they resolved within weeks of starting antivirals. I've seen kids with significant to severe hypotonia see drastic improvements in weeks to a couple of months....

As far as ASD, I think of them as working 'under cover'.

HTH,

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My sons' doc (he's closely associated as far as I understand w/ Dr Klimas, and was also connected w/Dr Galpin, a world renowned infectious disease specialist) lectured strenuously about how important it was not to interupt antiviral therapy, especially those w/HHV6, saying the risk of rebound but particularly the risk of HHV6 and others developing resistance to one of the few antivirals available was high. He didn't approve of stopping antivirals until labs w/the subtle viral markers were within a more normal range and until natural killer cells were over at least 8%, preferably 15%. Interstingly enough antivirals bring up NKs in many many kids over that two year period. We saw that happen, and one of my kids' NKs tanked a year after stopping antivirals (for financial reasons - he clearly wasn't ready).