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Is it a good time to get tested?

kat0465

kat0465

Senior Member
Messages
230
Location
Texas
Just wondering if a lot of people are still waiting to be tested for XMRV, I haven't got tested yet, but wan't to wait till they have a more reliable test.
Has that happened yet:confused:
Kat
 
R

Robin

Guest
kat0465 said:
Just wondering if a lot of people are still waiting to be tested for XMRV, I haven't got tested yet, but wan't to wait till they have a more reliable test.
Has that happened yet:confused:
Kat
Click to expand...

Right now the only commercially available test is the culture test from VIPdx. Their antibody test is not available yet, nor are there any FDA approved (insurance covered) tests on the market.
 
Otis

Otis

Señor Mumbler
Messages
1,117
Location
USA
Waiting here too. I'm not ready to jump onto an anti-viral (assuming I can get it prescribed) right now so I'm not going to rush. If you're thinking about it you can always contact VIPDx and get on their waiting list. Chances are you'll have at least 2 months before they'll contact you and ask if you want a test kit.
 
C

CBS

Senior Member
Messages
1,522
Way back when (December, 2009?), Dr. Klimas (and later Dr. Mikovitz) recommended not getting tested unless you were participating in research on XMRV and CFS. I know this is much easier said than done but it can happen (full disclosure - I'm waiting for my results from a large study being conducted by Drs. Bateman, Light, Light and Singh).

Until there is a standardized test, I probably wouldn't pay to get tested. Right now a positive is probably a positive but without a standardized test, who knows what to make of a negative. And even with a positive test, could you get your physician to treat you with anti-retrovirals (some might be able to but I doubt that mine would or that I'd be willing to do so outside of a study that was closely supervised by someone who knows CFS)?

FWIW
 
dannybex

dannybex

Senior Member
Messages
3,564
Location
Seattle
CBS said:
Until there is a standardized test, I probably wouldn't pay to get tested. Right now a positive is probably a positive but without a standardized test, who knows what to make of a negative. And even with a positive test, could you get your physician to treat you with anti-retrovirals (some might be able to but I doubt that mine would or that I'd be willing to do so outside of a study that was closely supervised by someone who knows CFS)?
Click to expand...

I agree CBS. That suggests waiting probably a year or so, maybe longer (until a definite causal relationship is shown?). In the meantime, there are other tests, treatments out there recommended by Myhil, Klimas, etc...
 
kat0465

kat0465

Senior Member
Messages
230
Location
Texas
ladybugmandy said:
a new, more reliable serology test is coming soon, probably this summer.
Click to expand...

Lord, i hope something breaks by the summer, a year or two seems like another lifetime. although i don't have much choice if Ins wont pay right now.
the only good thing is i have a great cfs doc, and if i asked for antivirals she would probably put me on something.I'm just really scared to take them,

still on the ldn, oral interferon, and a few supps and pain meds when i cant stand the pain anymore. the LDN hasent been what i had hoped for :( so still waiting like everyone else.
thanks everyone for the Info!
 
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