Drug Valcyte: Third time lucky

[TracyD]

I've written a longish blog post on my varied experience taking Valcyte three different times using different regimens. The upshot is that a half dose has helped me significantly: "Valcyte by itself hasn’t come close to making me fully healthy ... But I’ve gone from maybe 25 percent capacity to 50, from being warehoused to working a little, and that makes an enormous difference to me."

The full post is at: https://tracyduvall.com/2018/10/01/valcyte-and-me

 

[Tammy7]

Thanks for sharing Tracy..........and keep us posted.

 

[Tammy7]

Does Insurance cover? Does your Dr prescribe based on symptoms or do you have to test positive for virus?

 

[TracyD]

Does Insurance cover? Does your Dr prescribe based on symptoms or do you have to test positive for virus?

Both doctors who prescribed it were ME/CFS specialists who tested for antibodies to various herpes viruses, including cytomegalovirus, Epstein-Barr virus, and HHV-6 (among others). I doubt that either doctor (or any reputable doctor) would have prescribed such a powerful drug without seeing very high levels (aka titers) in some of these tests.

I've been under two different insurance plans, and both covered the generic version, valganciclovir, without any problems. Because I'm allergic to one of the generics, I've been able to get insurance approval for the name-brand Valcyte, although I've chosen to take a different generic instead.

 

[Tammy7]

I doubt that either doctor (or any reputable doctor) would have prescribed such a powerful drug without seeing very high levels (aka titers) in some of these tests.

I get that but I think it's unfortunate. Example: Labs for EBV can show up as a "past" infection and therefore Dr's don't believe that the virus is causing present symptoms while I very much think it still is. I think the virus can hide in organs, glands and CNS and not be show up on labs as an active infection.

 

[TracyD]

I get that but I think it's unfortunate. Example: Labs for EBV can show up as a "past" infection and therefore Dr's don't believe that the virus is causing present symptoms while I very much think it still is. I think the virus can hide in organs, glands and CNS and not be show up on labs as an active infection.

I'm pretty sure that none of my regular doctors over the years (the ones who aren't specialists in ME/CFS) would have prescribed Valcyte for me. Seeing a specialist is unfortunately difficult and expensive, but it's how I've gotten treated.

My blood tests don't show evidence of new herpes infections. But it's universally accepted that old herpes infections stay in our cells and reactivate from time to time, and (I think) that's what Valcyte fights. Ron Davis reports that there's no sign that ME/CFS patients have more herpes viruses than other people do -- and his associates have searched for them very carefully. So I believe that the immune systems of many people with ME/CFS overreact to even small reactivations of herpes infections.

By the way, I also believe that our immune systems overreact to many other kinds of infection, to physical stress from exercise, and to emotional stress -- the more we eliminate these things, the healthier we feel.

 

[Tammy7]

I'm pretty sure that none of my regular doctors over the years (the ones who aren't specialists in ME/CFS) would have prescribed Valcyte for me. Seeing a specialist is unfortunately difficult and expensive, but it's how I've gotten treated.

Yes................many people who would like to at least try Rx anti-virals will unfortunately not be able to because of the reasons you listed. It's a shame.

So glad you are able to do this and I hope you keep us updated!