Doctors Prescribing Valcyte?

[elgizowiv]

(Sorry for re-post - in the first I accidentally said "Valtrex" in the title instead of "Valcyte" and I thought people might not read it for that reason ... I edited the title, but it still shows up in the form as Valtrex)


Hi,

I'm wondering if anyone knows of a list of doctors who prescribe Valcyte for CFS, and HHV6 persistent infection specifically.

Dr. Martin Lerner in Michigan has diagnosed me with these and recommends treatment with Valcyte. I'm eager to try it, but unfortunately live in Arkansas and it's not realistic in the longterm to make trips to Michigan for follow-ups once a month as Dr. Lerner requires. (Each trip costs about $500.)

So, I'm hoping to find a doctor taking a similar approach, or willing to prescribe a similar protocol, who is within driving distance of Arkansas. This would include anywhere in Tennessee, Missouri, Kentucky, Alabama, Mississippi, southern Illinois or Indiana, maybe even the Atlanta or Dallas areas, or southern Ohio (my geography isn't great; I'd have to look at a map for some of these.)

Perhaps someone has compiled a list of doctors taking the antiviral approach? If not, does anyone have experience with or know a doctor in any of those states that I could try to see? I'm also taking the approach of trying to educate my local doctor on the treatment, but I'm not hopeful that will work and it would clearly to be better to see a doctor who knows more than I do.

Thanks very much for any help or info you might be able to provide!

Steve

 

[elgizowiv]

bumping above mistaken post ...

 

[heapsreal]

Sorry i cant help you out as i on the other end of the world. But you could try PMing people who have threads on valcyte, many though have used dr lerner or montoya but sure there are other docs who do. Consider looking into famvir as it can help and more docs likely to prescribe it then valcyte too.

good luck,
cheers!!!

 

[elgizowiv]

Thank, that's a good suggestion. I'll be pestering some people with messages.

I'll have to read more on famvir; my local doctor was almost willing to prescribe Valcyte, but then backed out due to potential toxicity. Perhaps he'd go for famvir.

 

[ukxmrv]

Hi Steve,

I'm seeing Dr Enlander when he makes visits to London, Engalnd (once or twice a year) so cannot recemmond a doctor within your radius. He's in New York normally so no help to you. Sadly, Valctye is too expensive for me to buy. There are generic versions on the internet from Cipla which can be purchased without a script but still expensive and risky to use without a physican to monitor. Valtrex is a lot cheaper of course and I've been taking that for a couple of years with some good results (but no where near a cure).

 

[KGG]

(Sorry for re-post - in the first I accidentally said "Valtrex" in the title instead of "Valcyte" and I thought people might not read it for that reason ... I edited the title, but it still shows up in the form as Valtrex)


Hi,

I'm wondering if anyone knows of a list of doctors who prescribe Valcyte for CFS, and HHV6 persistent infection specifically.

Dr. Martin Lerner in Michigan has diagnosed me with these and recommends treatment with Valcyte. I'm eager to try it, but unfortunately live in Arkansas and it's not realistic in the longterm to make trips to Michigan for follow-ups once a month as Dr. Lerner requires. (Each trip costs about $500.)

So, I'm hoping to find a doctor taking a similar approach, or willing to prescribe a similar protocol, who is within driving distance of Arkansas. This would include anywhere in Tennessee, Missouri, Kentucky, Alabama, Mississippi, southern Illinois or Indiana, maybe even the Atlanta or Dallas areas, or southern Ohio (my geography isn't great; I'd have to look at a map for some of these.)

Perhaps someone has compiled a list of doctors taking the antiviral approach? If not, does anyone have experience with or know a doctor in any of those states that I could try to see? I'm also taking the approach of trying to educate my local doctor on the treatment, but I'm not hopeful that will work and it would clearly to be better to see a doctor who knows more than I do.

Thanks very much for any help or info you might be able to provide!

Steve

Curious if you've found anyone. We are in a similar situation!

 

[SOC]

US Midwest is pretty much a barren wasteland with regard to ME/CFS specialists of any ilk.

My family resorted to the craziness of seeing Dr Lerner every 6 weeks for 2 years. It was, indeed, painfully expensive. On the positive side, my daughter is in remission, and I'm very, very much better, so on the whole I don't regret what we did to get Valcyte.

Have you considered traveling a couple times a year to see one of the farther away docs? They don't all require you to see them as often as Dr Lerner does. I'd look at Drs Montoya, Kogelnik, and Enlander. I've heard Dr Rey is having luck with HHV-6 using less toxic antivirals as part of a multi-pronged approach. That might be worth looking into.

 

[searcher]

If you are up for one flight Dr Kogelnik in Mountain View doesn't require any in-person follow ups for Valcyte. You will just need to go into a local lab for weekly blood tests and can do a skype call with him if you run into any problems.

 

[scarlet56]

Do you know of any doctors that provide valctye that are closer to virginia beach virginia area???? I was going to dr lerner until my mom got sick. Mom has passed and now dr lerner has too???

 

[heapsreal]

Do you know of any doctors that provide valctye that are closer to virginia beach virginia area???? I was going to dr lerner until my mom got sick. Mom has passed and now dr lerner has too???

Sorry to hear about your mum and for your unfortunate misfortune with the passing of dr lerner.

Just bump this thread as im sure theres others that can help you out. Maybe a close dr you wont have to travel as often as dr lerner??

Good luck.

 

[minkeygirl]

What about Lapp? I don't know if he does Valcyte though

 

[Vineyard1]

Dr. Laura Black at Hunter Hopkins Center in Charlotte, North Carolina prescribes Valcyte...

 

[scarlet56]

Thank you so much for info