I tested Negative

I

imready

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I just talked to my Doctor and my results came back negative. I tested with VIPDX and paid $650. I'm really surprised that I tested negative and I'm not to sure what to think. I have cfs/me and when I gave blood I was in a flair and still am.
 

Lily

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Dr. Mikovits

Someone will post her statement - I just read it yesterday and can't remember where - she states something about waiting to be tested because the testing will be improved with less chance of getting a false negative....(something close to that anyway) - so hang in - I think that getting a negative now has to be taken as a wait and see kind of thing.
 
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I just talked to my Doctor and my results came back negative. I tested with VIPDX and paid $650. I'm really surprised that I tested negative and I'm not to sure what to think. I have cfs/me and when I gave blood I was in a flair and still am.
Retest when they have the antibody test. I'm hearing the testing has issues right now, with for sure cfs pts testing neg. Klimas does not recommend testing right now. She said you will be positive but how do you deal with a false negative test. Don't let it discourage you.

From section 9 of klimas lecture:

So, there are some issues here. That blood test only identified 67% so if I ordered a blood test on you right now and it was negative, what would happen to your soul? You know, and yet it might not really be negative, in fact its got a one chance in three of being wrong. The blood test that we dont have yet that we will have very shortly, those tests are going to be improved on.

When the first HIV blood test came out it wasnt any good either. You know, it went through stages and stages and stages before we got a really good one. Dont rush to get the test. Why, because youre not going to act on that test quite yet. The knowledge of being positive is not going to give you an anti viral prescription from anyone right now because we dont know which one to give and if its safe or if its toxic. The HIV drugs are not been gentle, OK, and you guys are really tender. So, if you knew your status today it really wouldnt change anything.

If they are right 99% of you are positive. And if they are wrong then 95% of you are positive.

So when? Soon, really soon. But you wouldnt be able to bear the false negative right now so be careful OK.
 

MEKoan

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Hi I'mready,

I'm so sorry but I agree with what everyone, including Nancy Klimas, are saying: these are really early days in terms of a test available to the general public. I don't understand the ins and outs of just how what VIP is making available is different from what was used in the study but Nancy Klimas wasn't warning people away from testing without good reason.

I think you are still in a wait and see mode with the rest of us.

I hope it helps that Nancy Klimas understands how you feel.
 
R

Robin

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Dr. Bell talked about the tests at his lecture. I wasn't there, but, my Dad went. Dr. Bell claimed that there are four tests for XMRV (we had a thread about it here.)

One is the PCR which looks for viral DNA, viral infectivity, detection of viral proteins, antibody to the XMRV envelope (not sure which one is the culture test.) So, even if you are negeative on PCR and culture, you might be positive on the other ones. The HHS working group on XMRV is refining the testing technique to make it more accurate and standardized.

Dr. Bell didn't really endorse getting tested right now and it seems that Klimas doesn't either.

It's got to be disconcerting but you might want to wait until an FDA approved diagnostic comes out, and get retested. Your insurance will probably cover it!

We still don't know if XRMV has any real relation to CFS yet so keep that in mind too.
 
I

imready

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Testing

Regarding re-testing or testing later when they have an anti-body test available. Why would WPI endorse VIPDX labs to test for this virus if their testing methods are not the best out there. Especially if they are charging $650. If WPI endorses VIPDX and says this is where to be tested, then I would expect the very best. And if VIPDX thinks that later they will be coming out with a better test thats more accurate, than I don't think they should be offering a test that cost $650 if they don't feel its accurate and WPI should not be endorsing a test that might not be accurate and have to test later with a diffrent type of test.

I really trust VIPDX labs and don't think that WPI would suggest being tested at this time with VIPDX if they didn't have faith in them also.

So at this time I really beleive that my result are a fact. I don't carry the XMRV virus. And dang it I really wanted that Virus :)

Now I wonder if XMRV is the puppet master or just another virus on the end of the string.
 
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Imready,

I totally agree that VIP shouldn't be providing a test if they don't think it's valid! I do think the results are valid.

I tested negative as well and I actually did xmrv test with another company, actually a study, and I also got negative results. Same for my husband, negative on both. I can't disclose info about the study. So, I am thinking VIP results are valid.

We just have to wait for more studies to be run to see whether XMRV is a cause or just a co-infection.

Patient 2.

Regarding re-testing or testing later when they have an anti-body test available. Why would WPI endorse VIPDX labs to test for this virus if their testing methods are not the best out there. Especially if they are charging $650. If WPI endorses VIPDX and says this is where to be tested, then I would expect the very best. And if VIPDX thinks that later they will be coming out with a better test thats more accurate, than I don't think they should be offering a test that cost $650 if they don't feel its accurate and WPI should not be endorsing a test that might not be accurate and have to test later with a diffrent type of test.

I really trust VIPDX labs and don't think that WPI would suggest being tested at this time with VIPDX if they didn't have faith in them also.

So at this time I really beleive that my result are a fact. I don't carry the XMRV virus. And dang it I really wanted that Virus :)

Now I wonder if XMRV is the puppet master or just another virus on the end of the string.
 

Jim

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CFS case?

can u briefly describe your cfs type? (e.g. sudden onset? viral-type symptoms? length of illness? are u a severe case?)

thanks,

jim
 

Andrew

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Why would WPI endorse VIPDX labs to test for this virus if their testing methods are not the best out there.
I think tests are like everything else. You can get a top-quality product when it first comes out, and invariably they find ways to improve it.
 

Quilp

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Expensive

I know we are desperate, but spending so much money on a test that isn't validated by those that matter, doesn't seem to make sense.
Judy Mikovits is giving a question and answer session on the 22nd January, perhaps we'll learn more then.


Kind regards, Mark
 

spit

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It's really never as simple as "accurate" vs. "not accurate", either.

False negatives and false positives don't always happen at the same rate -- in other words, for some tests, you can pretty much trust a positive, but you can't really trust a negative, or the other way 'round.

That's why it is usually divided into two separate measures: sensitivity, the ability of a test to pick up a true positive result, and specificity, the ability of a test to NOT pick up a false positive result. So a high sensitivity test would have fewer false negatives, and a high specificity test would have fewer false positives. Some tests are both highly specific and highly sensitive. Some are sensitive but not very specific, and some are specific but not very sensitive.

I bring all this up because I think that (1) if you're getting tested now, it's not necessarily useless -- but it's hard to interpret, because the early versions of tests aren't necessarily both highly sensitive and highly specific, and (2) specifically for you, I don't think it's very safe to assume that a negative result here means you don't have XMRV. You may not have XMRV. But it may be true, instead, that false negatives are common right now, and that as the testing is refined, it will become easier to interpret negative results with some confidence. We don't have that confidence right now.

It's not as easy as "if they're saying it's a worthwhile test, it must be accurate", is all I'm saying. My impression is that you can pretty much trust a positive result, but that a negative isn't necessarily trustworthy at this time. They'll be working to increase the sensitivity over time.
 

Alice Band

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You must feel gutted after spending all that money and have a negative result. We all want to know if XMRV is a factor in our illness.

I'm regarding the current XMRV test in the same way I've regarded other early and experimental tests that I have had. I'll test and see the result. Then test again if something substantially better comes across.

People with Lyme disease and some infections are doing this. It's not ideal or fair.

We are going to have to steel ourselves for a negative and then reconsider as time goes on.

That said I can't anticipate how I will feel if a negative comes through for me (probably very disappointed and upset at the thought of having to continue the search and prolong the misery as my life is pretty bad) - and you have my sympathy.
 
M

myco

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I keep telling everyone with CFS here they have Lyme and co-infections and its TREATABLE.

Oh well, I try.
 

CBS

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Validity versus sensativity?

Imready,

I totally agree that VIP shouldn't be providing a test if they don't think it's valid! I do think the results are valid.

I tested negative as well and I actually did xmrv test with another company, actually a study, and I also got negative results. Same for my husband, negative on both. I can't disclose info about the study. So, I am thinking VIP results are valid.

We just have to wait for more studies to be run to see whether XMRV is a cause or just a co-infection.

Patient 2.
I don't think that this is question of validity. My first thought is that it is a question of sensitivity. The original 67% of the WPI CFS patients tested positive via PCR. Of the remaining 33 CFS patients that had negative PCR tests, the WPI was able to culture WXRV virus from the blood samples of 30 out of those 33.

There is a lot of work to be done on this. I recently attended a lecture by Dr. Lucinda Bateman. She gave the same advice. Wait a few months to test; the cost will drop (a lot of other labs are owrking to develop standardized testing), insurance may cover it and we'll know more about what the result from each method of testing means. A reliable mechanism to measure the presence of XMRV is step number one and as hopeful as it seems, the science isn't quite ready to move beyond that first essential step.

I can understand the disappointment but I think in both cases; Imready and Patient2 - I don't think that a negative is necessarily the final word on XMRV. As far as testing negative across two companies; if they are using the same tests (or tests with similar limitations) you would expect to test negative the second third and fourth times - that's good test-retest reliability but it doesn't change the sensitivity issues.

I do wish the best for both of you (whether that means negative or positive for XMRV - and what ever may come with that down the road) but we are very early in this and I seriously doubt that in six months the XMRV world will look anything like it does today.

Shane
 

Andrew

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I keep telling everyone with CFS here they have Lyme and co-infections and its TREATABLE.

Oh well, I try.
I saw a lyme-literate doctor and he said I don't even have so much as a hint of lyme ever touching me. Given this, I don't know what other course I would have then to pursue the breaking issues with CFS.
 

kurt

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Looks like almost everyone here is working under the assumption that:

1. XMRV is proven to be present in 98% of PWC

therefore

2. If I get a negative test result then there is something wrong with that test.

Both assumptions could be incorrect, and this will be shown when the replication studies are published. What if those XMRV- results are the correct finding? We can not assume right now that the Science article will hold up, just have to wait and see.
 

spit

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Looks like almost everyone here is working under the assumption that:

1. XMRV is proven to be present in 98% of PWC

therefore

2. If I get a negative test result then there is something wrong with that test.

Both assumptions could be incorrect, and this will be shown when the replication studies are published. What if those XMRV- results are the correct finding? We can not assume right now that the Science article will hold up, just have to wait and see.
Of course, that's also true. But if they're finding positive results for XMRV, my impression -- which may or may not be correct, to be fair -- is that that means the patient does have XMRV. We don't, of course, know that it means anything else at this point, in terms of causes to symptoms or anything else -- just that XMRV was present in the patient's sample.

Problem is, a negative result at this point can't easily be verified as being correct. It could be correct. It could not be correct. We just don't know, and that's regardless of whether XMRV itself is involved in the symptoms of CFS. That's a separate question, and I think you're absolutely right to remind people that we don't have data on anything but a correlation at this point, and one that still needs published replication studies at that.

I'd just caution people not to assume that current test results are absolutely correct on just the question of XMRV presence or absence, regardless of what we find XMRV to mean in the larger sense over time. Testing will change. Understanding of meaning of the results will change. It's very early to be making a whole lot of assumptions about any of it right now.
 

spit

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I doubt many people are operating under any assumptions at this point. More like trying to keep hope alive. I say, good on 'em. :)
Heh. Not to play the perpetual "yes, I agree!" game, but I do totally agree.

I also don't think the implications of the original study should be minimized. They're huge findings, potentially world-changing for a lot of people if everything pans out. There's a lot of reason to be hopeful right now, even though we've got a long way to go for a clearer picture.

Myself, I'm trying to balance it all out to some sort of cautious optimism. :)