Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 I have ordered 2 kits and they were sent out last wednesday. I spoke to the secretary last Monday and she told me that they have two tests (for the live virus and the antibodies) and if you order both, the cost is $650. It is a lot of money to spend but I really want to know if my children have this. The main problem though is that there still is no safe way of battling this virus. Are any of you going to do this test or are you going to wait until insurance will pay for this? Just curious. All the best, Jill From: Neno/Natasa <neno@...> Subject: XMRV TESTING " " < > Date: Wednesday, November 4, 2009, 3:06 PM  ------ Forwarded Message http://vipdx. com/ Dr. Lombardi, the primary investigator and first author on a paper that appeared in the 8 October 2009 issue of ³Science², is the Director of Operations for the licensing and development of the XAND test assays used by VIP Dx for the detection of XMRV. To read this landmark publication, " Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome " , please go to (www.sciencemag. org). We are pleased to announce that VIP Dx has licensed this technology allowing us to offer the most accurate and sensitive testing available for XAND (XMRV associated neuro-immune disease). TO ORDER XAND TEST KITS, CONTACT VIP Dx. <http://vipdx. com/contact_ us/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 Interesting ¡© is this a different lab than who we called to get on the waiting list? Also, what did they say about insurance ¡© will they send you a proper bill to at least submit? Laureen On 11/5/09 4:55 AM, " Jill Boyer " <sjillboyer@...> wrote: > > > > > > I have ordered 2 kits and they were sent out last wednesday. I spoke to the > secretary last Monday and she told me that they have two tests (for the live > virus and the antibodies) and if you order both, the cost is $650. It is a lot > of money to spend but I really want to know if my children have this. The main > problem though is that there still is no safe way of battling this virus. Are > any of you going to do this test or are you going to wait until insurance will > pay for this? Just curious. > > All the best, > > Jill > > > > From: Neno/Natasa <neno@... > <mailto:neno%40dalmaholidays.co.uk> > > Subject: XMRV TESTING > " <mailto:%40> " > < <mailto:%40> > > Date: Wednesday, November 4, 2009, 3:06 PM > > ? > > ------ Forwarded Message > > http://vipdx. com/ > > Dr. Lombardi, the primary investigator and first author on a paper > > that appeared in the 8 October 2009 issue of ©øScience©÷, is the Director of > > Operations for the licensing and development of the XAND test assays used by > > VIP Dx for the detection of XMRV. To read this landmark publication, > > " Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients > > with Chronic Fatigue Syndrome " , please go to (www.sciencemag. org). We are > > pleased to announce that VIP Dx has licensed this technology allowing us to > > offer the most accurate and sensitive testing available for XAND (XMRV > > associated neuro-immune disease). > > TO ORDER XAND TEST KITS, CONTACT VIP Dx. <http://vipdx. com/contact_ us/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2009 Report Share Posted November 5, 2009 I'm waiting to see what kind of antiviral gets suggested before testing. Knowing the results won't help until you know what to do with it. Cheryl ~http://www.gryffins-tail.blogspot.com ~@midian42~ On Nov 5, 2009, at 4:55 AM, Jill Boyer wrote: > I have ordered 2 kits and they were sent out last wednesday. I spoke > to the secretary last Monday and she told me that they have two > tests (for the live virus and the antibodies) and if you order both, > the cost is $650. It is a lot of money to spend but I really want to > know if my children have this. The main problem though is that there > still is no safe way of battling this virus. Are any of you going to > do this test or are you going to wait until insurance will pay for > this? Just curious. > > All the best, > > Jill > > > > From: Neno/Natasa <neno@...> > Subject: XMRV TESTING > " " < > > Date: Wednesday, November 4, 2009, 3:06 PM > > > > ------ Forwarded Message > > http://vipdx. com/ > > Dr. Lombardi, the primary investigator and first author on a > paper > > that appeared in the 8 October 2009 issue of ³Science², is the > Director of > > Operations for the licensing and development of the XAND test assays > used by > > VIP Dx for the detection of XMRV. To read this landmark publication, > > " Detection of an Infectious Retrovirus, XMRV, in Blood Cells of > Patients > > with Chronic Fatigue Syndrome " , please go to (www.sciencemag. org). > We are > > pleased to announce that VIP Dx has licensed this technology > allowing us to > > offer the most accurate and sensitive testing available for XAND (XMRV > > associated neuro-immune disease). > > TO ORDER XAND TEST KITS, CONTACT VIP Dx. <http://vipdx. com/contact_ us/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 Jill, I think I might wait on the testing. When I heard about the kits to test for the virus, I asked Dr. G what he thought. He said the amount of misdirection and misinterpretation (twisting science) is probably at an all time high right now. He also said he would never advise a patient to give out this kind of personal information or do this unless given much more information and / or study validated by an IRB approved protocol. I too wanted to know, but we may need to wait for more hard science before we jump. Also I'm not sure the testing would change what we are already doing to help our kids. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 I agree with Cheryl, there isn't yet a treatment that would address this virus specifically... on the other hand if I had money to burn this would still be worth doing imo. as for waiting for the hard science bit... hm not so sure, that is a controversial issue isn't it. there isn't very much hard science at the moment on anything going on in autism, anything that we do for our kids could be criticised for the lack of hard science etc etc. (depends really on what one understands as hard science etc etc). the quality of the xmrv study was as high as they get, the quality of the PCR and antibody tests this lab was running for the study was as high as it gets... whether they watered it down for commercial tests now we don't know... But still so much in autism we don't know for sure and we still go and do it, as no point waiting for another decade or so till hard science catches up with our kids. so many pros and cons on this one Natasa > > Jill, > > I think I might wait on the testing. When I heard about the kits to test > for the virus, I asked Dr. G what he thought. He said the amount of > misdirection and misinterpretation (twisting science) is probably at an all > time high right now. He also said he would never advise a patient to give > out this kind of personal information or do this unless given much more > information and / or study validated by an IRB approved protocol. I too > wanted to know, but we may need to wait for more hard science before we > jump. Also I'm not sure the testing would change what we are already doing > to help our kids. > > Marcia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 Jill, Like you, I¹m anxious to know whether my kids carry XMRV, but we just don¹t have the cash to spare. There have been quite a few Drs. who have suggested tests over the years ³just for information², but we¹ve generally decided against doing tests that would not lead to treatment. I¹m hoping that treatment will become available and that insurance will cover the testing (and treatment!) sometime in the future. Or maybe we can get into a study and find out that way. Regards,, Caroline G. have ordered 2 kits and they were sent out last wednesday. I spoke to the secretary last Monday and she told me that they have two tests (for the live virus and the antibodies) and if you order both, the cost is $650. It is a lot of money to spend but I really want to know if my children have this. The main problem though is that there still is no safe way of battling this virus. Are any of you going to do this test or are you going to wait until insurance will pay for this? Just curious. All the best, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 17, 2009 Report Share Posted November 17, 2009 But what good is the test if we have no treatment for XMRV yet? - > > > I think it would explain a lot. Especially, if the child have elevated inflammation markers, all kind of infections, abnormal immune panels, seizures and even other autoimmune disorder. The XMRV virus attacks the immune system which leaves the child expose to many diseases. > > JR > > > > > From: JOSKAT95@... > Date: Mon, 16 Nov 2009 17:23:46 -0500 > Subject: Re: Re: XMRV TESTING > > > > > > If you get the test and it is positive how do you interpret it? I don't > think we know that yet particularly for children. How do you treat it? We > certainly do not know that yet. I think it is prudent to wait until more > research is done. > > on > > Quote Link to comment Share on other sites More sharing options...
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