I am rarely on here so it will be hard for me to respond to this thread as soon as I should. With that said, I think it is important that I post my experience...
My HHV6 has been at 65 times greater than a positive for many years. Ive been sick for around 28 years. I dont have the lab values in front of me but that is how my doctor explains the 65 number. He said that is one of the highest levels he has seen. We tried to start me on Valcyte about two years ago but I would get deathly sick every time I took just one pill. He thought it was a good sign and that it was die off. After about 15 pills and backing off and trying again, I gave up. I then got very sick after a move and was non functional for about a year.
Recently I moved again and within weeks began feeling better. I talked my doctor into lettiing me try Famvir although he really wanted me on Valcyte. After 3 months on Famvir, my HHV6 dropped from 65X greater than positive to 3X greater. We were both shocked. He is keeping me on a lower does of Famvir now while we go after Cpn with antibiotics. I cant say that the drop in viral load has helped me to feel better. It does make me happy though that the load is down and the HHV6 is not wreaking so much havoc on my body.
I had no die off with Famvir. My viral load just dropped. This makes me doubt that Valcytes horrible side efects are die off. If it was die off, I should have felt the same on Famvir.
I hope this helps some one trying to figure out how to deal with HHV6.
Good health!
Michelle
My HHV6 has been at 65 times greater than a positive for many years. Ive been sick for around 28 years. I dont have the lab values in front of me but that is how my doctor explains the 65 number. He said that is one of the highest levels he has seen. We tried to start me on Valcyte about two years ago but I would get deathly sick every time I took just one pill. He thought it was a good sign and that it was die off. After about 15 pills and backing off and trying again, I gave up. I then got very sick after a move and was non functional for about a year.
Recently I moved again and within weeks began feeling better. I talked my doctor into lettiing me try Famvir although he really wanted me on Valcyte. After 3 months on Famvir, my HHV6 dropped from 65X greater than positive to 3X greater. We were both shocked. He is keeping me on a lower does of Famvir now while we go after Cpn with antibiotics. I cant say that the drop in viral load has helped me to feel better. It does make me happy though that the load is down and the HHV6 is not wreaking so much havoc on my body.
I had no die off with Famvir. My viral load just dropped. This makes me doubt that Valcytes horrible side efects are die off. If it was die off, I should have felt the same on Famvir.
I hope this helps some one trying to figure out how to deal with HHV6.
Good health!
Michelle