There are two possible tests; the PCR is the most important because it tests for an active infection. The virus culture test will determine if the virus is present in your cells. Essentially they attempt culture it or grow it using your cells.
Phone: (775) 351 - 1890 Email: [email protected] Posted by brf (Member # 8748) on :
I've been trying to keep my eye on all of this as I suspect it could be a very important component as to why some of us continue to do so poorly despite heroic treatment efforts.
So appreciate the update!
Posted by bettyg (Member # 6147) on :
up for others; going to page 2 .....
Posted by coltman (Member # 21272) on :
Kinda pricey. I 'll hold off on this .Especially given that anti retroviral treatments are worse than abx
Posted by Myco (Member # 9536) on :
Where's the thumbs down button. I'll wait for a treatment.
Posted by sparkle7 (Member # 10397) on :
How do we know how accurate these tests are? May be the same thing as with Lyme...
I'm trying to be positive about all of this since it does validate many of us in our illness. I just hate the profit motive on all of this medical related stuff.
Everyone is so suspect of anything new. I can't blame anyone for feeling this way. We've all been so screwed around by the medical/insurance/drug industries.
Posted by peter j (Member # 11825) on :
Anyone got a reply from them when ordering a kit?
I sent an email on Monday, but I guess it's pretty many who's requesing test kits.
Posted by n.northernlights (Member # 17934) on :
Another lab has started testing too, they do pcr testing 399 dollars I think. I forgot the link but you can find it at aboutmecfs .
Posted by SForsgren (Member # 7686) on :
Fry Labs will have a test available very soon for this as well.
Posted by sutherngrl (Member # 16270) on :
I wonder if any LLMD's will consider this? Many of them don't test for virues.
Posted by peter j (Member # 11825) on :
just heard vipdx.com was sending out test kits for those who had pre-ordered, and that a waiting time of 4-5 weeks was likely.
For those who want to get tested at vipdx I guess it's better to order now and wait 4-5 weeks, then to wait a month, and be put in the back of the line (which most likely is growing)
Posted by springshowers (Member # 19863) on :
So ok.. If we have a positive test result for this virus.
Then what? has there been any treatment ideas?
I will see Dr. F this coming up week and will ask if he is adding that test and what he thinks about it.
Posted by TX Lyme Mom (Member # 3162) on :
WARNING (not about the test itself, but about the "medical politics" of testing positive for this retrovirus)
At the CALDA conference which preceded the ILADS conference this last weekend in Wash,DC, there was concern voiced by LDA leaders that the "powers that be" might be up to something sinister again. There is a move underway to lump Lyme patients in together with CFS patients by changing the name of the game from "chronic Lyme disease" or "post treatment Lyme syndrome" to MUS ("medically unexplained illness").
Since the retroviral treatment for XMRV is still rather "iffy" -- as is the accuracy of these new labs to identify it -- I wouldn't want a positive test in my medical records which could be used against me in any way in the future, nor would I want my positive test result being used to bolster the IDSA's position that chronic Lyme shouldn't be treated by ILADS protocols.
Think about it before you rush to spend money for this new XMRV test. However, I'm not saying not to be tested if you sense that this will be important to you individually because that is a personal judgement call. All I'm saying is to weigh the pros and cons carefully first before deciding to become one of the first Lyme patients to be found positive for this newly discovered retrovirus.
Here's another thought about XMRV. The "M" in this acronym stands for murine, which means mice.
Therefore, there is a fairly good chance that ticks could be infected with this virus and that they could transmit i,t along with any other bugs (including parasites, too) that they might be co-infected with. So, it's not too unlikely that some Lyme patients who are chronic after years and years of treatment might be co-infected with this nasty retrovirus.
Nevertheless, until the use of retroviral agents in CFS patients has been shown to be beneficial without too many bad side-effects, well, I think you get the drift of where I'm going with this thought.
Frankly, I'd want to be tested for celiac (gluten intolerance) first as a reason for failure to make a complete recovery from chronic Lyme, instead of spending my money on the XMRV test, before rushing to be tested for XMRV -- but that's a topic for another day. (Do a search using my screen name plus "celiac" as your search term and look for recent posts by me to find out more about this because I don't have time right now to explain much about why the gluten intolerance (aka: celiac) diagnosis is so important for Lyme patients and why Lyme could perhaps be a "triggering" factor for the activation of a genetic predisposition (HLA DQ2 & HLA DQ8) for celiac.)
If you should decide to be screened for gluten intolerance or celiac disease, be aware that the blood tests are very inaccurate and that the best lab to use is Enterolab because their test kit uses stool samples and cheek swabs as their method of testing. Choose the $369 Comprehensive Panel which is the best value because it includes the genetic test kit also. www.enterolab.com Posted by capebite (Member # 9789) on :
I just had my XMVR testing two days ago. Will take one month for results. here is what the lab says:
Announcement: January 11, 2010
Effective immediately VIP Dx will offer XMRV testing by virus culture only. Our improved culture method eliminates the need for additional testing and provides the most accurate diagnostic available with greater sensitivity.
This new technology allows us to offer the XMRV test at a reduced price. Please contact our office for price and availability.
Marguerite Ross, Director
Marketing & Client Relations
VIP Dx / RedLabs
Posted by sutherngrl (Member # 16270) on :
Sounds like a money thing to me. Probably the IDSA has an invested interest in this.