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

[SOC]

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!

Oh yeah, we homeschooled, too. Not because of concerns about vaccinations or infections -- just for superior education -- but it did have the advantage of not exposing her to highly infectious environments in elementary school.

Dr Lapp also thought that the flexibility of scheduling may have allowed us to avoid aggravating her ME/CFS because we didn't create situations that might have challenged her health. For example, we didn't go on field trips if she was feeling a little off -- we'd put it off a few days. Minor stuff like that, but it may have helped her avoid the final descent into ME/CFS until she was older.

 

[Stone]

Yes, thanks for the advice. Right now, I'm waiting for my answer from the lab before making any decisions or getting any more vaccines, live or attenuated, single or multiple. I feel this is the best decision FOR US, because he is not in daycare, not in preschool, and not even in the church nursery, since we are all pretty much homebound with CFS anyway. Odd how things work sometimes isn't it? Also, we routinely have a nearly obsessive air filtration regime going in the house at all times. HEPA, charcoal, ionic, UV and the best filtrete filter you can buy. We also avoid jangling around our immune systems with chemical challenges as well and only use natural and fragrance free products in the home. We use peppermint soap for antibacterial purposes, which does not breed microbial resistance. We don't live in a sterile environment by any stretch of the imagination, but we try to keep it as free of chemical toxins as possible and everyone we know is well aware that they are NOT permitted to come over if they have any signs of a cold. A cold for me is an event that lasts months, not days or weeks.

 

[Lynn]

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

FYI

ggngues,
Thanks for noticing. I am excited to get into the library one of these days. But everyone on this list does such a great job at research, I haven't had a need to explore the library yet. It just feels good to be a part of the community.

Lynn

 

[katieann]

I had to know. It was a personal thing. For me, knowing is Much better than not. I did the culture test. I am so glad I did, but yes, it took me 3 months to save up for it. But, it's so close to a standardized serology test, that if I had been close to that date, I would have waited. And yes, I am XMRV +ve

 

[floydguy]

I will wait until the Alter report is out. If he reports that XMRV is the real deal (or potentially the real deal) then I'll get it from WPI. $250 does not seem to be too outrageous to confirm whether XMRV is an issue for me or not.

 

[Stone]

I had to know. It was a personal thing. For me, knowing is Much better than not. I did the culture test. I am so glad I did, but yes, it took me 3 months to save up for it. But, it's so close to a standardized serology test, that if I had been close to that date, I would have waited. And yes, I am XMRV +ve

Okay, so now that the wondering is over and you know, and you are indeed XMRV+, what has changed for you in terms of how you view your illness, how you treat your illness, how your doctor views and treats your illness, how your family views and treats you and so on? If it's not too personal, would you please share how things have or have not changed with yourself, your doctor and others with your new-found XMRV+ status? Some have said that they're not getting the test because there's nothing really that can be done with the information yet, and doctors have publicly advised CFS patients along these same lines as well. It would greatly interest me (and I'm sure others) to know, if you wish to share, what has been 'done with the information' in your case, either personally or medically or socially or otherwise.

 

[floydguy]

Okay, so now that the wondering is over and you know, and you are indeed XMRV+, what has changed for you in terms of how you view your illness, how you treat your illness, how your doctor views and treats your illness, how your family views and treats you and so on? If it's not too personal, would you please share how things have or have not changed with yourself, your doctor and others with your new-found XMRV+ status? Some have said that they're not getting the test because there's nothing really that can be done with the information yet, and doctors have publicly advised CFS patients along these same lines as well. It would greatly interest me (and I'm sure others) to know, if you wish to share, what has been 'done with the information' in your case, either personally or medically or socially or otherwise.

I obviously can't speak for katieann but can tell you that I would not broadcast that I am XMRV positive to the world. I might tell immediate family. I probably wouldn't even tell certain doctors until more is known. Personally, I think that even if XMRV is important cause of CFS there will be a large percentage of people who are negative and their health issues stem from other causes. I want to know which camp I fall into as soon as possible. If XMRV is not a factor for me then I can ignore the circus that surrounds XMRV and focus on issues that might actually help me.

 

[usedtobeperkytina]

floyd, but that will depend on if tests are accurate. I just don't know that any of them, including the upcoming WPI test is.

How will I know for sure the test is accurate? I don't know.

But I am not convinced yet.

Tina

 

[floydguy]

floyd, but that will depend on if tests are accurate. I just don't know that any of them, including the upcoming WPI test is.

How will I know for sure the test is accurate? I don't know.

But I am not convinced yet.

Tina

Yeah, I agree with your concern on the accuracy. If there is relatively high uncertainty over the test then I'll wait longer. But assuming there is reasonably high confidence in the test I will get it done.

 

[BEG]

Personally, I think that even if XMRV is important cause of CFS there will be a large percentage of people who are negative and their health issues stem from other causes. I want to know which camp I fall into as soon as possible. If XMRV is not a factor for me then I can ignore the circus that surrounds XMRV and focus on issues that might actually help me.

floydguy, A compelling reason to test. hmmmm.

 

[MargeM]

Floydguy, that's exactly how I feel. If the majority of CFS patients are positive and I'm not - I need to know that and become more aggressive in looking at other possible causes.

 

[taniaaust1]

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?

I'd wait to more is known.

My youngest daughter now with a child of her own, has actually never had a vaccine in her life. Her sister got what doctors thought to be some kind of altered measles case from a vaccine... it was scary that my daughter caught from a vaccine what it was suppose to protect her from so after that, I decided my children would never have another vaccine after I experienced that the doctors didnt have a clue what to do when a child gets something from a vaccine (they thought my daughter may of been infectious).

(I had to then get excemption lettter from doctors etc so they could go to preschool and school). Interestingly even when my then unvaccinated children ended up around the diseases they didnt get vaccinated from, they never caught them (the vaccinated children were getting them!).

It's turned out my never been vaccinated daughter has mild autism/Aspergers (i cant blame vaccine as she never had one... who knows.. maybe she'd be even worst with the Autism if she'd been vaccinated)

 

[Mya Symons]

I emailed VIPdx and they said the antibody/serology test would be ready in September. Does anyone know if this is still true. Has anybody heard anything different?

 

[Daffodil]

i would think the upcoming VIP test will be the same or almost the same as the FDA standardized test when it is ready, right?