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VIPDx Serology (Antibody) Test Results Yet?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Stone, Oct 18, 2010.

  1. nventor

    nventor

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    OK, I give up, but why for some reason does the medical community seem to be held to a different standard than any other business?

    They actually take the trouble to answer the phones? Answer an email, gee, thats sounds like quite the business model. It is business, nothing more, nothing less.
  2. Stone

    Stone Senior Member

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    Yes, patients actually pay for the tests, but the lab won't run the test unless the physician orders it. They report the results to the physician and the physician reports them to the patient. The lab will not give results to a patient without a signed release. Some labs won't report results to any patient at all. It used to be that legally, laboratory results were the property of the physician and he/she was under no legal obligation to share them with anybody, including the patient, unless ordered to by the court. Advances in patient rights have since given patients the right to obtain their medical records but it hasn't always been this way.

    I totally understand where you're coming from though. I myself am pretty sick of bowing to a broken system that has kicked us in the pants for years, but I don't think VIPDx is one of the bad guys, at least not yet. I think a notice on their web site would be lovely though, considering what we've been through and continue to suffer under, I must say. And I really do think their web site leaves a vast amount to be desired and putting just a little more information on it would surely reduce the number calls and emails they have to answer and free up valuable man-hours. I don't understand why they're so quiet about this, but I'm assuming that since they have customarily been pretty good sports with us PWC's, there must be a reason for it. But most assuredly I would like to know what is causing the delay or at least when we might reasonably expect them to start reporting results. Two months is a very long time for lab results, but then again, they have pretty much invented the wheel with this and medical technology this new is bound to have some bugs to work out.
  3. ukxmrv

    ukxmrv Senior Member

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    I don't think that it is "just business" for VIP dx. They were incredible to us when we needed help to try and set up a test here in the UK.

    I think that they are overloaded. A "real" business would have just rejected samples or limited them. I think they are trying to do the best for pateints. Waiting for the test result is horrible - it was for me.

    The website has never reflected what is happening and it's obvious that they cannot cope with communication to patients. Let them know this -seriously please do.

    It was obvious that if people waited for the serology then there would be an incredible response and an incredible backlog. That's what has happened.

    For serology they told me 8 weeks min. at the start and took care to point out that there would be a delay. Some people who tested negative are also sending emails asking about retests so there must be a huge number of emails being sent to them. Some people are sending weekly emails.

    If you have problem please let them know but with solutions - like the idea to put a message on their website. That's a great idea.

    The last I heard was that my regular contact was away and it's worrying that they are one person down and they are deluged with emails.
  4. Jemal

    Jemal Senior Member

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    I suspect they are overloaded as well, as I stated in one of my first comments in this thread. I think they have been flooded with blood samples :)
  5. nventor

    nventor

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    I give up, a simple posting on their very limited web site could have addressed all the concerns. Why be defensive or apologetic? The medical industry should be held to a higher standard than your local Jiffy Lube.
  6. Cloud

    Cloud Guest

    Stone, this is still true in some states in the US....."Some labs won't report results to any patient at all. It used to be that legally, laboratory results were the property of the physician".

    Well, I don't know about the "property of the physician" part.....but I do know some states do not allow a lab records release even with a signed release. They have to be obtained from the physician.

    I also find it patient friendly that VIP bills Medi-Care on certain lab work regardless of knowing it will not be covered...they then file an appeal on the denial of coverage. Because of these attempts to bill insurance, it can take up to 6 months for me to get a bill, and then they let me make payments. Most labs that do tests they know are not covered on insurance, will insist on full payment up front. VIP's willingness to bill me like this has enabled me to do lab work I would not have been able to do had they insisted on payment up front. If I had not been able to do that lab work, I would not have been able to do Tx in 2009 which brought me back from the abyss.

    I do agree they could do better with updating their website.
  7. Lynn

    Lynn Senior Member

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    Hello everybody, I wanted to let you know that I received my serology test results yesterday. It was 10 weeks plus a couple of days since I had the blood drawn. I think that we will begin seeing more of the test results come out now.

    Good luck everyone. I hope you get the results that you are looking for.

    Lynn
  8. roma

    roma

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    glad to know you got your results.
  9. Stone

    Stone Senior Member

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    Yay! So I guess this means that the reporting has finally begun. Wonderful.

    What a relief this is going to be for many people.

    Here's to hoping that everyone gets the result they want, whatever it may be.
  10. Stone

    Stone Senior Member

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    Oh boy oh boy oh boy! My results were just faxed by VIPDx to my doctor! Unfortunately, it's my regular doctor's half-day so he's out of the office and the nurse will not share my results with me without the doctor's okay. I tried to communicate how important these results are to me, so the nurse agreed to ask one of the other doctors for permission to report my results to me. Positive or negative, I just need to know. This wait has been a bear to say the least. But even if I can't get the results today, I have an appointment with the doctor tomorrow anyway and I will definitely get the news then but waiting another 25 or 26 hours seems like an eternity when it's sitting right there and they won't tell me. It feels like a big game of 'keep-away'. :)

    Update: The nurse called me back and said they're not going to tell me my results today. I have to wait until tomorrow so the doctor can tell me. Great. Now where did I put those nerve pills.....:worried:
  11. ukxmrv

    ukxmrv Senior Member

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    Hope you are OK Stone. Good luck!
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Gee Stone, this is diabolical! :eek: I had the same problem trying to get my culture results out of my doc and her nurse.

    Hoping for you, hang in there! And many thanks to you and others for reporting that, at least, results are starting to come out.

    And, has anyone received positive results for serology? I'm guessing my doc must have mine now too, though she isn't likely to call me to tell me and she is closed now. So I'll try for mine tomorrow.

    Sleep well tonight,
    Sushi
  13. Francelle

    Francelle Senior Member

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    I wonder what that means Stone? Speculating big time here! Does the doctor know how much vested interest you have in these results therefore a 'negative' may devastate you or is this likely to mean a positive and he needs to tell you in person?? I guess you've looked at every permutation of what this may mean.

    I hope you sleep well tonight!
  14. Snow Leopard

    Snow Leopard Senior Member

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    I was told up to 12 weeks on the 1st of October for my sample. I'm not fussed as I know the reason for the delays is both the overwhelming number of requests for testing and the fact that these are experimental tests, so quality control takes time.

    I have a hypothesis about the release time of results, so I'm predicting Stone will have a positive result (if my hypothesis is correct).
  15. Stone

    Stone Senior Member

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    Well, the doctor wasn't in yesterday afternoon but I would still have to say that he's clueless as to how important this is to me because when VIPDx reported my culture test some weeks back, which was negative, he didn't bother to call me and tell me.

    It just so happened that when I was in to see his PA for a follow-up from a hospitalization for septicemia, I was watching him flip through my chart for something and I caught a glimpse of a paper that had 'VIPDx" on it. I said, "Hey turn back to that! Oh my God! How long has that lab report been in there? I've been anxiously awaiting those results and have been carrying my phone around with me even to the bath room in case you called with them!"

    The date on the fax was about 10 days prior! I was furious, but it wasn't in my own best interest to go 'John Q' on them or anything but I did calmly make it quite plain how that affected me, ya know, instead of taking hostages as I was strongly inclined to do.

    I'm hopeful for a positive result today for several reasons. First, the incidence of false negatives is lower with the serology test, or so I'm told.

    Second, when I called VIPDx yesterday to ask if my results had been faxed to my doctor, the nice young lady I spoke with told me the results had just been faxed a few minutes prior and she sounded very happy, almost thrilled. Now it could be that someone had just sent her flowers or she's just a really, really happy person. I don't know, but something in her tone was encouraging to me and with a previous negative culture, I hadn't been hoping too highly for a positive serology.

    Thirdly, when I called my doctor's office to confirm they had received the report, I asked if they could please tell me if it was positive or negative. The nurse was on the fence about telling me so I explained to her that I had been waiting over 9 weeks for these results and that this test was for a retrovirus 'like HIV'. The nurse said, "This isn't an HIV test" I said, "Right, it's for XMRV, a retrovirus like HIV". The nurse again said, "No, this is not HIV!" and again I replied, "Yes, I know. It's a new retrovirus. The third human retrovirus, the other two being HTLV and HIV." She again said, "But this isn't an HIV test". I said, calmly, "I know. It's very new. Most doctors haven't heard of it yet, but it is a retrovirus and HIV is also a retrovirus and they think might cause chronic fatigue syndrome and prostate cancer, so the results are very important to me. I'm under a good deal of stress not knowing and I would really appreciate it if you could just tell me if it's positive or negative so I can relax about it and I can discuss it with the doctor tomorrow. I'm not a well person and stress doesn't help at all. Is there perhaps another doctor who is able to give you permission to give me the results?" She put me on hold for about a month and then came back on the line and said she wasn't going to ask one of the other doctors because I haven't seen any of the other doctors and they would want to know all about me, so I would just have to wait until my appointment "so the doctor can go over it" with me.

    So, and again I'm inferring an awful lot here, this doesn't sound like the behavior of a nurse in possession of a negative retrovirus report to me. I've been a physician's office nurse before and in this situation I would have told the patient it was negative if it was negative unless of course the office policy was unusually strict and I don't think it is because they were considering telling me the results in the beginning. The nurse has NO IDEA that I'm actually hoping for a positive, which to her would not make any sense at all. Therefore, if I had to guess, and I do have to guess, I would guess that it's positive. That said, it's never a good idea to draw conclusions with insufficient facts and I really don't have enough facts. I'll know my results for sure within 5 hours from now. Oy.

    If it's negative, I will simply wait for a test to be developed that has a lower incidence of false negatives. If I have that test and it's negative, then well and good. I will accept it and move on to the next thing whatever that might be. We have to continually keep in mind that now our disease has attracted the attention of some heavy-hitting scientists and XMRV or no XMRV, things are never going to be the same for us and thats a VERY good thing, isn't it?

    This is a time of great hope, the kind of hope we've never had before. This is a luxury for which millions of horribly sick people have waited for a long time, many have waited for decades.

    That's saying something. Just a year ago, we had precious little to hang on to. Now we have much more, even for those who don't happen to test positive for this particular bug (and it's associates). All that means is that there's probably some other cause that will most likely be found soon, now that we are in the scientific spotlight. Hang in there everybody. The SOS call has been picked up and ships are on the way.


    Best of the best to one and all,
    Stone
  16. ukxmrv

    ukxmrv Senior Member

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    Stone, we found in the UK that some of the doctors and medical staff could not even read the VIP dx test result. They needed help to work out if it was positive or negative. That could just be the UK as medics here are not used to private test results being sent to them.

    What you are writing sounds logical. Really hard waiting though and I sympathise.
  17. helen41

    helen41 Senior Member

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    Oh Stone, the agony!!! I hope it is the validating positive you need
  18. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Stone, we are on pins and needles wondering if we can wait until you find out! Why do some hours just craaaawwwwwwl?
  19. Stone

    Stone Senior Member

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    :worried: + :worried: + :worried: + :worried: + :worried: + :worried: + :worried: + :worried: = :headache:
  20. George

    George waitin' fer rabbits

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    Any word yet Stone?????

    (waiting on tippy claws for your positive)

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