Any preparation for XMRV blood test?

[fairlight]

So many of us are on antibiotics, antivirals, immuneosuppressants and/or immune-modulators. Does anyone know if we need to stop these, and if so how long before testing? Thanks!

 

[gracenote]

No prep needed?

I was part of a small study of ME/CFS patients last year (not by WPI) and was asked if I would come back in in September to have blood drawn without being told what for or why. No conditions were placed on it whatsoever. I found out last week that I was being tested for XMRV. The results are not back yet.

So from my experience, I don't think there's anything you need to do to prepare for the test.

 

[fairlight]

Hi gracenote-thank you for your

reply! I hope you will post your results when you get them!

I asked because a woman at VIP Labs told me that antibiotics and antivirals would skew the xmrv test results. She said we should be off of them for two weeks before taking the test. I think that is the wrong information for a PCR test, which I think is the type for test for xmrv. I just left a message for my doctor with this question. Thanks again!

 

[gracenote]

will post

I'll be happy to post my results when they come.

 

[fairlight]

Hi Grace-are you

hoping your results will be positive for XMRV? It's a strange situation we're in. I would never beleive that I would be hoping to be positive for a retrovirus! So many twists and turns in our lives.

I look forwrd to seeing your results. Thank you.

 

[PoetInSF]

Why would you want to get tested for xmrv? It'll be be a total waste of time/money till the study is replicated, the causality is established and the treatment become available. And I think it's absolutely irresponsible of WPI to make this test available to patients before the causality is established.

 

[Kati]

It sounds like WPI is preparing a second study, I presume larger group of CFS patients. You can phone in at WPI and talk to Debbie, she will take your information and will contact you when it's time. She didn't talk about testing availability- MKaybe one could find out through the incoming study- for free?

 

[Jerry S]

Hi tee!

Welcome!

Best wishes!

 

[Martlet]

Kati, where did you hear about this second study?

 

[cfs since 1998]

Why would you want to get tested for xmrv? It'll be be a total waste of time/money till the study is replicated, the causality is established and the treatment become available.

Because some of us want to? If you do not want to get tested and think it is a waste of time and money then you do not have to get one, but don't criticize those of us who do want to. Some us obviously feel it is not a waste.

I also requested a test kit myself. Why? Partly just to satisfy my own curiosity. It is a personal decision and it can't hurt. If it comes back positive then yes I might undergo an experimental treatment for it even before the causality is established, because I don't mind being on the cutting edge. If it comes back negative well then that helps too in narrowing down what other treatment possibilities I should pursue. I am sick of "waiting" as I have waited long enough.

 

[starryeyes]

XMRV Testing

Hi cfs since 1998, it's me, teeJkay. LoL

Apparently you guys got 2 new members today with almost the same name. I am really sorry to hear you've been sick for so long. I'm interested in hearing about everyone's test results when you get them.

tee

 

[cfs since 1998]

Apparently you guys got 2 new members today with almost the same name. I am really sorry to hear you've been sick for so long. I'm interesting in hearing about your results when you get them.

Very interesting, thanks for the heads up. Welcome to the forum. I like this one much better than "that other one" lol.

 

[starryeyes]

Hi cfs since

Thank you for the welcome. I'm happy to be here and Gracenote that's awesome that you were tested for XMRV. You're the first person I've seen personally that has been tested. These are exciting times for us.

tee

 

[fairlight]

cfs since-I agree with you, and thank you for your answer. If I'm positive I'll start whatever treatment my I.D. doctor prescribes. I think the tests will be available next week? I don't know how long it takes to get the results. Do you know? gracenote is waiting for her results.

 

[cfs since 1998]

cfs since-I agree with you, and thank you for your answer. If I'm positive I'll start whatever treatment my I.D. doctor prescribes. I think the tests will be available next week? I don't know how long it takes to get the results. Do you know? gracenote is waiting for her results.

When I contacted them they said I should receive a test kit in 2 to 3 weeks and to call if I haven't heard from them by then. I heard someone on one of the forums say that they are only sending out a certain number at a time because they can't do too many at once.

 

[starryeyes]

By the way,

I'm not the same person whose name is "teekay" who posted earlier in this thread. I just want to make that clear. I'm all for PWC getting tested for XMRV.

tee

 

[kolowesi]

preparation for PCR test

It sounds like from m0joey's test that this is the PCR for viral components rather than an antibody test. However, there is such a thing as a PCR for antibodies to mycoplasma, so I'm not sure.

I've had bad experiences with HHV-6 not showing up in even the nested PCR, but then, it can be in the CNS rather than the blood. At a research lab, my antibodies to HHV-6 were "off the chart."

I also had 3 mycoplasma PCR tests before finally testing positive. I had high antibodies to general mycoplasma (not species specific) back in 2001. I wasn't allowed more than a trial of doxy until the PCR was positive.

So, I'm a little nervous about having XMRV and not showing it in a test. I think I will go off everything except basic supplements, for a month if I can handle it, unless we get more information before I am able to take the test.

In my fantasy world, I would also get my son and ex-husband tested. If neither of them has it, I would be relieved and also have evidence that it was acquired. I think even an endogenous retrovirus could be acquired, if it weren't in a person's DNA from birth.

I think I'm a good candidate as I had very low B and T cell counts the first couple of years I was sick. And I seem to keep getting new opportunistic infections, especially when I try to exercise (But maybe they were there already and just flare up with exercise.)

Another variable, with the mycoplasma PCR, it helped to be very near the lab doing the testing. Dr. Garth Nicolson recommended that at one time. When WPI opens, I might try to go there for testing.

Good luck to all, and I'm looking forward to hearing results.

Kelly

 

[fairlight]

I just got a call from my

I.D. doctor's office and they said no need to stop antibiotics or antivirals.

I want to get tested so I know what I need to treat. I hope VIP will be sending out the tests next week.

 

[dmarie4301]

Went with Cooperative Labs

Well, I may have jumped the gun, but I ordered the test from Cooperative. I see on the other posts that many are going with VIPdx as they cover active and inactive HMRV. I got so excited, I went for it, cuz Im so proactive and been sick so long....anyway, if it turns out postive (and I will get results much faster than VIP), then I will be so happy! How retarded is that?

Why??? Because I wont have to figure out anymore what is wrong with me. Ive known for so long that something is really screwy wrong with me, I cant even take thyroid to help my low thyroid cuz something is blocking it. KNOWING this is really a virus, as I have always explained to people I feel like I have had the flu for 20 years, will be SUCH a relief to me.

So, yeah, go testing!!! I'll deal with where to go from there.

As for antivirals, I doubt that Acyclivir (for genital herpes) would even touch a retrovirus. Evenso, I stopped taking it last night.

Good to find you all here.. I will let other groups know about this board.

Does anyone know what a NKCP or LYEA test is? Dr. Cheney recommends getting those and I cant find any info on them.

Thanks

Donna

 

[cfs since 1998]

As for antivirals, I doubt that Acyclivir (for genital herpes) would even touch a retrovirus. Evenso, I stopped taking it last night.

I saw several articles on pubmed that said people with both HIV and herpes simplex had their HIV viral load drop something like 40% just from acyclovir alone.