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Has anyone tested XMRV + after taking Valcyte or Vistide?

Messages
14
Location
Michigan
I am curious if anyone has tested XMRV + after taking Valcyte (or Vistide)? I have been on Valcyte for 2 years (Dr Lerner) and have gained most of my improvement in the last two months. I want to get tested for XMRV, but am waiting for the new serology test (and some money) but am concerned since I have shown improvement on Valcyte that maybe it will affect XMRV test results. For anyone wondering: I am still physically limited and tire easily, but I am no longer CONSTANTLY fatigued (thank God!). I can take little walks (10 minutes) but still need a lot of rest. This is improvement for me since I was constantly on the couch laying down with fatigue and headaches.
:victory:
 
C

Cloud

Guest
I am curious if anyone has tested XMRV + after taking Valcyte (or Vistide)? I have been on Valcyte for 2 years (Dr Lerner) and have gained most of my improvement in the last two months. I want to get tested for XMRV, but am waiting for the new serology test (and some money) but am concerned since I have shown improvement on Valcyte that maybe it will affect XMRV test results. For anyone wondering: I am still physically limited and tire easily, but I am no longer CONSTANTLY fatigued (thank God!). I can take little walks (10 minutes) but still need a lot of rest. This is improvement for me since I was constantly on the couch laying down with fatigue and headaches.
:victory:

Yes, I had already been on Vistide for 10 months when I tested xmrv+. In fact, I had my xmrv lab drawn the same day as a Vistide Tx. I have never taken Valcyte, but I'm very happy to hear of your progress on that med.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I am curious if anyone has tested XMRV + after taking Valcyte (or Vistide)? I have been on Valcyte for 2 years (Dr Lerner) and have gained most of my improvement in the last two months. I want to get tested for XMRV, but am waiting for the new serology test (and some money) but am concerned since I have shown improvement on Valcyte that maybe it will affect XMRV test results. For anyone wondering: I am still physically limited and tire easily, but I am no longer CONSTANTLY fatigued (thank God!). I can take little walks (10 minutes) but still need a lot of rest. This is improvement for me since I was constantly on the couch laying down with fatigue and headaches.
:victory:

I was on Valcyte for 7 or 8 months last year. I tested positive for XMRV.
 
Messages
14
Location
Michigan
I didn't notice much improvement with fatigue until I added B12 shots (which I previously had used but the fatigue came back after 3 months). So I am waiting to see if the fatigue returns.....Or if the Valcyte alone made all the difference, since B12 alone wasn't "it".
I think the Valcyte helped a little with "brain fog" and lessened my low grade temperatures. It didn't do anything for my fatigue levels or anything else. It didn't make me more functional.
 
Messages
3
Location
Massachusetts
I took Valcyte from about January 6 through about June 7 and then stopped. About July 15th I was tested for XMRV. I just got the result today and it was positive.

Lois in Boston area where there are no CFS doctors!$#@
 

KC22

Senior Member
Messages
161
Location
Ohio
I've been on valcyte for 2 1/2 years. I am now taking it every other day.. I have noticed some improvement; mostly cognitive, but my fatigue is not as bad. I still can't do a lot and get sick and tired very easily.

Long story, but I spoke with Dr. Whittemore and asked her about valcyte and XMRV testing. She told me that it can be found in patients, but sometime harder to find. I am with you, I am waiting until the XMRV test is solid; I don't want to waste my money.
 

Daffodil

Senior Member
Messages
5,875
lois.. i think there is someone in boston..perhaps you can make a new thread..i could have sworn i knew someone who was being treated in boston. you might also want to ask at prohealth.com
 

SOC

Senior Member
Messages
7,849
I am curious if anyone has tested XMRV + after taking Valcyte (or Vistide)? I have been on Valcyte for 2 years (Dr Lerner) and have gained most of my improvement in the last two months. I want to get tested for XMRV, but am waiting for the new serology test (and some money) but am concerned since I have shown improvement on Valcyte that maybe it will affect XMRV test results. For anyone wondering: I am still physically limited and tire easily, but I am no longer CONSTANTLY fatigued (thank God!). I can take little walks (10 minutes) but still need a lot of rest. This is improvement for me since I was constantly on the couch laying down with fatigue and headaches.
:victory:

I'm in roughly the same place, and am wondering the same thing. I don't want to waste $$$ on XMRV tests for two of us if the Valcyte is likely to affect the test results.

Still improving on the Valcyte, BTW.
 

*GG*

senior member
Messages
6,390
Location
Concord, NH
I took Valcyte from about January 6 through about June 7 and then stopped. About July 15th I was tested for XMRV. I just got the result today and it was positive.

Lois in Boston area where there are no CFS doctors!$#@

Welcome to the Forum Loispix! How are you handling the news?

So you had a month and a half after stopping Valcyte before your blood was drawn. Hmm, interesting.