i wonder if some of us fit into lerners ebv/cmv/hhv6 group and other have all that and xmrv or just xmrv. I dont know if im xmrv, but positive to ebv and cmv and responding to antivirals. I wonder if the herpes infections is a co-infection from an underlying immunodefiency, which could be xmrv. I almost have my lymphocytes down to normal but still have some energy problems and sleep problems, so i wonder if it just takes time to heal or there is damage done from these viruses.
cheers!!!
My uncle appears fully well after a LONG time on antiherpetic AVs. He seems to be the exception, though, and I'm hearing some things that make me wonder if I'm seeing very small issues that may indicate he's not quite 100%. It seems to me that the vast majority of people who improve on AVs get substantially better -- feel like they have their lives back -- but they're not 100% back to pre-illness condition.
My suspicion is that the herpes virus infections, and there's a whole host of them, are secondary to whatever is causing our immune dysfunction. By that logic, patients will feel a lot better when those infections are treated, but not 100% because we're still not treating the cause of the immune dysfunction.
My daughter now has a superficially normal life after a year on Valcyte, but she's actually only 70% or so. I'm a lot better after a year on Valcyte, but still largely housebound and need daily naps. I'm thrilled with how much better I am with Valcyte, but I won't be surprised if I don't get back to 100%
There may be a few of us who have only active herpesvirus infections, but I bet they're in the minority. Just my guess, though.
