Should I Get The $250 VIP Serology Test or Wait For The Standardized Test

[Lynn]

According to VIPdx, VIP should be offering the XMRV serology test within the next 10 days. The test will be around $250.

Dr. Le Grice and his team have also developed a cell line, dubbed the Derse cell line, which can detect XMRV in as little as 3 days.

He said that the XMRV assay that his lab has developed has been transferred to labs in Sweden, Australia, Vietnam, and South Africa to prove its utility. "Developing an assay is one thing, but transferring it to a laboratory where it can be reproduced is clearly important when we are talking about single copy assay. Contamination is a huge problem, and the ability to transfer these reagents is very important," he noted.

Dr. Le Grice added that the aim of the NCI is to make sure that the assays they have developed are as valid as possible. "Our goal is to develop a series of assays that we feel confident in and to test those head to head with other assays. I think that is really important at the moment. We should start with 6 assays in house, and if we have a problem, I think it is important to sit amongst ourselves and try to understand where those problems are before we disagree with anybody else's assay."

Based on Dr. Le Grice's statement, I wonder if a standardized test might be just around the corner? I really want to know if I am XMRV positive, but would hate to plunk down $250 on an unproven test and it come up negative. Then I would wonder if I received a false negative.

What does everyone else think?

Lynn

 

[Esther12]

Unless losing $250 isn't a big deal for you, I'd wait.

At this point there's not much we can do with the test results, Mikovits has said they can't use these rresults for research purposes...

If I had money to burn I'd go for it. Otherwise, I'd invest in a really lovely pillow to help make the wait more comfortable.

(That sounds sarcastic... but I really have just bought a big new pillow. I'm looking foreward to it!)

 

[muffin]

My husband and I are waiting for the more "accurate" test. For what that's worth.

 

[SOC]

My husband and I are waiting for the more "accurate" test. For what that's worth.

My VIPdx test stuff came today, but I think I'm back to waiting for the more "accurate" test, too. The only reason I considered testing at this point was concern that VIPdx might be swamped after the Alter paper published. I've come to think, though, that a more widely available test might be sooner than I thought, so I'm waiting. I don't have $500 (2 of us) to spare.

 

[Otis]

I too have the VIPDx test kit and I've been mulling over the same question. Personally, I'm not betting on a government test being available this year and in many cases the insurance battles may not be easy either. Don't know what the out of pocket expense for this test will be if insurance doesn't pay. Just taking a test that has many more numbers of people tested behind it has its advantages.

But, when I'm honest with myself it's about validation (or vindication?) and can I wait.

So, I'm probably going to wait too, but once it's available from VIPDx the temptation will reapear...

A big pillow sounds nice though.

 

[SOC]

But, when I'm honest with myself it's about validation (or vindication?) and can I wait.

So, I'm probably going to wait too, but once it's available from VIPDx the temptation will reapear...

Validation may end up being an issue for me..... I've got a kid with ME/CFS trying to get through engineering school in a tough program. So far she's managed because she went in with a years' worth of credit and so has been able to take a minimal load. We may have to get validation of "real illness" if she runs into problems. **sigh** I wish they'd hurry. The Valcyte is helping, but not enough, yet, I'm afraid.

[off to have a brief mom-anxiety moment while the kiddo is crashed asleep on the sofa]

 

[Stone]

How long did it take to get your VIP test kit materials? I've ordered mine and I'm wondering how long it takes. I don't have money to burn but I'm going to get the serology test. I really need to see an infectious disease doctor and it would help if I had a positive xmrv test, assuming I am actually xmrv positive, that is.

 

[SOC]

How long did it take to get your VIP test kit materials? I've ordered mine and I'm wondering how long it takes. I don't have money to burn but I'm going to get the serology test. I really need to see an infectious disease doctor and it would help if I had a positive xmrv test, assuming I am actually xmrv positive, that is.

Mine came in less than a week.

 

[usedtobeperkytina]

Flipping back and forth.

My policy was to wait, thinking even VIP serology might not be perfectly accurate. And, no treatment even if I am positive.

But the CDC thing this last week made me think I need to change my diagnosis. But that really has no practical value, just psychological one.

I think it will depend on how my doctor talks. Hadn't been there in many months. (I don't like going to doctors so I only go because I can't get prescription refill without it.) If I see a shift in her view, I may insist on tests for to find other diagnosis. If she still keeps her own independent view, then I may just wait.

But, Lynn, I find it funny that after we talked you started leaning toward waiting and I started leaning toward having the test after our conversation. You led me one way and I led you the other.

How funny.

Tina

 

[Sean]

I won't be getting any tests until there is an official gold standard one. No real practical benefit for me at the moment. Apart from anything else, I do not have much money.

However, if I was in a medico-legal fight I would seriously consider it.

 

[George]

I just want to "KNOW", for a fact, one way or another. I'm waiting till October then I'm ordering which ever test is available.

Hopefully the Knowing will help me settle and help me find a doctor that will listen.

Really good thread/question btw.

 

[serenity]

i'm still on the wait list - meaning i'm still waiting. i want to know for sure it's gonna mean something before doing the test. i can afford it, money isn't the issue for me. i just want to know that if i get a positive i know that to do with that information.

 

[Stone]

I'm also considering testing my 15 month old grandson. Both his parents as well as his aunt, his grandmother (me) and both of his great-aunts have CFS. I'm scared to death when he has to be vaccinated because we still don't know the connection, if any, between XMRV, vaccines and autism. Not only that, but if he happens to be XMRV positive, there's a real chance that we may actually be able to prevent him from developing disease if he's treated. That's assuming xmrv causes disease (like maybe it doesn't?) and assuming a real treatment suitable for him is established. It's not a fun position to be in, but it's better than just waiting for a bomb to go off in his life some day with not a thing I can do about it.

 

[George]

I'm also considering testing my 15 month old grandson. Both his parents as well as his aunt, his grandmother (me) and both of his great-aunts have CFS. I'm scared to death when he has to be vaccinated because we still don't know the connection, if any, between XMRV, vaccines and autism. Not only that, but if he happens to be XMRV positive, there's a real chance that we may actually be able to prevent him from developing disease if he's treated. That's assuming xmrv causes disease (like maybe it doesn't?) and assuming a real treatment suitable for him is established. It's not a fun position to be in, but it's better than just waiting for a bomb to go off in his life some day with not a thing I can do about it.

What I love about your post Stone, is that it shows just what a delima we are in.

 

[Stone]

How's this for a little more dilemma? I wrote the lab and asked them how old a child has to be for XMRV to be detectable in his blood if he acquired it vertically (in the womb or through breast milk). The answer? They don't readily know offhand. I was told last week that the scientists will have a meeting this week and discuss it and get back to me. I haven't heard anything yet. New territory folks. It's absolutely tragically sickening and incredibly fascinating and fantastically wonderful and indescribably frightening and infuriatingly slow and dizzyingly fast all at the same time. Just out of curiosity, would any of you proceed with the standard childhood vaccination protocol if your child was in the same situation as my grandbaby, or would you hold off on the vaccines for now until more is known?

 

[*GG*]

According to VIPdx, VIP should be offering the XMRV serology test within the next 10 days. The test will be around $250.



Based on Dr. Le Grice's statement, I wonder if a standardized test might be just around the corner? I really want to know if I am XMRV positive, but would hate to plunk down $250 on an unproven test and it come up negative. Then I would wonder if I received a false negative.

What does everyone else think?

Lynn

Lynn, you are at over 130 posts, you can now access the Library.

FYI

 

[usedtobeperkytina]

Stone, not if he has XMRV. No way.

Tina

 

[Stone]

No, I mean in his current situation of not knowing if he or anyone has XMRV but everybody (just about) having CFS.

 

[George]

How's this for a little more dilemma? I wrote the lab and asked them how old a child has to be for XMRV to be detectable in his blood if he acquired it vertically (in the womb or through breast milk). The answer? They don't readily know offhand. I was told last week that the scientists will have a meeting this week and discuss it and get back to me. I haven't heard anything yet. New territory folks. It's absolutely tragically sickening and incredibly fascinating and fantastically wonderful and indescribably frightening and infuriatingly slow and dizzyingly fast all at the same time. Just out of curiosity, would any of you proceed with the standard childhood vaccination protocol if your child was in the same situation as my grandbaby, or would you hold off on the vaccines for now until more is known?

Yep that pretty much sums it up nicely. (grins) And no, they could bite me, I'd home school or what ever I had to do untill they come up with a diffrent vaccination schedual for XMRV positive kids. Of course (sigh) that assumes that all this stuff acutaly turns out to be true or doesn't get buried somewhere. Whole new set of problems for the medical world to deal with huh!

 

[SOC]

Just out of curiosity, would any of you proceed with the standard childhood vaccination protocol if your child was in the same situation as my grandbaby, or would you hold off on the vaccines for now until more is known?

Since the news of XMRV came out we have wondered if our daughter acquired XMRV vertically. She and I had a sudden onset of ME/CFS at the same time, so it could have been a triggering virus.... I had signs long before she was born that may turn out to be early signs of XMRV infection.

That said, she had no problems with the usual vaccines until she had a chicken pox booster (live herpes virus) after she was showing clear signs of ME/CFS -- increasing flares, etc -- at nearly 18yo. She went into a flare within days of the vaccination, never went back into remission again, and was found to have an active HHV-6 infection a year later.

If it was my grandbaby, knowing what I know now, I would avoid live virus vaccines, if possible, but I wouldn't avoid all vaccinations -- the risks are too high, especially if the baby's immune system may not be up to snuff. I would also turn down the lots-at-once vaccinations they do now in favor of one at a time over an extended period, even if it had to go to the doc a lot more and pay a lot more.

For me, it's all about not over-challenging the immune system. If the baby has XMRV and if XMRV replicates in immune cells, then strongly upregulating the immune system seems like a bad idea. That is, it might speed up XMRV replication and spread it around the body more. Small challenges to the immune system (killed virus vaccines spread far apart, colds, etc) are probably fine, but overwhelming the immune system might be riskier for us than for others.

I would also avoid highly infectious environments (daycare and preschool) in favor of smaller group playdates.

Just my opinion....