That is my uncle. :Retro smile: He's completely recovered, at least in terms of being 100% functional (or maybe 110%, the way he's going, lol). I doubt he's had an XMRV test or any immune function tests, but he is extremely active, and feels great. He's the one who pushed me to see Dr Lerner.
My daughter and I are taking 1350mg daily. We started lower and worked up. My daughter has had no side effects. I had a rough patch for 8-12 weeks starting about the 4th month. I was more fatigued, more severely swollen lymph nodes, rashes, HSV titre increased -- all stuff that was uncomfortable and annoying, but for an "experienced" PWC, nothing approaching intolerable. Since that cleared (about 3 months ago) I've been getting better rapidly -- on an ME/CFS scale.
I suspect that the rough period many of us experience with Valcyte is not really a die-off (like a Herxheimer rxn) because antivirals don't kill off the virus, they just keep it from replicating. I'm thinking (with no medical education) that it's more like the IRIS rxn HIV patients get when they start HAART. As I understand it, the rxn is caused by the immune system starting to function again after having been exhausted by fighting the infection. Or something like that.
I take 1 targetted transfer factor pill (Transfer Factor 200, ProHealth) daily, also. I'd also done at least a year on Dr Pall's protocol, which I think helped me a lot with inflammation, so Lisa's idea of reducing inflammation may be an important factor for making the Valcyte treatment easier, too.
How sick was your uncle before he started Valcyte? Do you think he might be willing to talk to me about his experiences?
I'm looking for people with moderate or severe ME/CFS (Canadian Criteria) who have recovered to mostly or total full wellness. The case studies I've gathered so far are making a really interesting compilation, with some differences and some similarities. The goal is for the doctor I'm working with (Keith Berndtson of Park Ridge) and I to make some observations about what we can learn about the disease, and about treating it, in order to help people to understand those things better.
This is what happens with herpes family antivirals (Valcyte, Valtrex, Famvir, Acyclovir). In order for viruses to replicate, they need to go into living cells and hook onto them. They take energy from the cell and use that to reproduce. With most viruses, B cells or T cells can find them because the cell produces a protein when attacked called MHC, which serves as a signal to "Come and help out." Herpes viruses keep the cells from creating MHC. Fortunately for most people, NKC's can find cells under attack even when they're not producing MHC. Unfortunately for us, our NKC's are broken. Thus, herpes viruses multiply out of control.
Antivirals prevent the viruses from hooking onto the cells. However, this means that they're more likely to be "swimming" around outside the cells, continually looking for a place to land. What's supposed to happen then is that other immune cells find and kill them. Unfortunately, other parts of our immune system are broken too, so this is rough going. (With all these things broken, you wonder how we can stay alive.)
The inflammatory flare, I think, is due to the fact that these viruses are more damaging when they're outside the cells than when they're hiding inside them. Why it is that the lack of mold exposures made so much of a difference for me in this, I'm not sure. It could just be additive, but it feels more multiplicative.
Did Dr. Pall's protocol give you any noticeable results before you started the drug? What specifically are you on?
Dr. Guyer's theory is that people should address whatever pathogens they can and whatever toxins they can, without worrying too much about which ones they are. This will relieve the overall system burden and allow it to do a better job taking care of whatever's left on its own. This is inconsistent with the recent trend to use antiretrovirals specifically, but so far the latter doesn't seem like a magic bullet. Based on my own experiences, Dr. Guyer is right in this.
Despite the fact that he admits that he's never seen a patient go from being as sick as I was ("The sickest of the sick") to being as well as I am, he still is not focusing on the mold. This makes me annoyed. Maybe he needs more written explanations and more case studies. He doesn't have to send people into the wilderness, but at least he should be suggesting that living in moldy houses is not a good idea. I mean, that's hardly a controversial idea that people should do that, though pulling it off can be a challenge.
So the fact that the Lauridicin gives me such a strong die-off suggests to me that maybe it will be a good thing for me to try. Ditto a product called Rizols Gamma, which is supposed to address Lyme and co-infection parasites, and that gave me a big reaction (it felt like it was killing something horrible in my jaw) when I took it for a while. My goal at present is to do some more detox (it feels like I'm getting fairly close to stabilizing on that, though I may never get to the "end") and then try those things. That will keep me busy for quite a while, I think!
Best, Lisa
