XMRV Testing-FYI

[citybug]

Nielk,
Did Dr Enlander collect 4 vials for Dr. Kerr? I'd like to help with research, but can't do 4 vials.
Also wonder if VIP keeps any of the blood sent for the research.
Thanks,
Kathy

 

[Rrrr]

test kit on its way, and will medicare pay?

hi all,

i have been on the VIP waiting list for a test kit for about 1 wk. anyway, i just got a call from VIP labs today and they told me they were sending me a kit in the next day or so and i should have it by friday. i did not tell them my doctor's name or anything. they did not ask. so, why not: i asked for 4 extra kits to give to friends or my doctor's office. spread the wealth, i figured! i have at least 4 cfs friends who may want it.

i also asked about medicare covering this test, to both VIP's email contact and the VIP person who called me today via phone. this was their reply:

1. phone reply:
they have no idea if medicare will cover it. in fact, today is the first day they are sending to medicare a request to pay for the test for some patients. they said it can take medicare one month to several months to respond. so they'll know in one month to several months if medicare will cover these tests. and also, they said, a warning: medicare is weird in that it will sometimes pay for one patient and not another.

2. email reply to the medicare question:
They wrote me this... "We are using Medicare billable procedure codes (CPT); however, if Medicare feels that your diagnosis code (ICD code from your physician) does not warrant this type of testing, they will require a medical necessity letter from him. There are no guarantees that even with that Medicare will pay." the email was from this woman listed below

Marguerite Ross, Director
Marketing & Client Relations
VIP Dx / RedLabs
5625 Fox Ave - Rm 369
Reno, NV 89506
775-351-1890
Fax: 775-682-8517
Cell: 775-813-3319
www.vipdx.com

 

[Rrrr]

test kit info

i will post again the test kit info, just in case others want it... this is what they sent me the other day via email....

Good Afternoon

Below is some information that will be of help to you regarding the XMRV
testing.

It is with great pleasure that Viral Immune Pathology Diagnostics (VIP
Dx) announces the introduction of its family of diagnostic tests for the
Xenotropic Murine Leukemia Virus-like Virus for XMRV associated
neurological disease (XAND).

Test acceptance will commence on October 23rd, 2009. Please contact our
Client Relations staff to arrange the shipment of test kits and
acceptance of samples. Each XAND specimen must have an XAND acceptance
code on the test requisition. The XAND acceptance code is assigned by
our staff and will arrive on the test requisition in your specimen kit.
Specimens sent without the appropriate acceptance code may result in the
delay or inability to perform the diagnostic test. The diagnostic tests
available for XAND* are as follows:

XAND by PCR for XMRV active infection: Test Code XAND ($400)
XAND1 by virus culture for XMRV latent infection: Test Code XND1 ($500)
XAND2 by PCR for XMRV active infection and virus culture for latent
infection: Test Code XND2 ($650)
Coming Soon!
XAND with Western Blot (reflexive) as confirmation of XMRV active
infection
XAND by serology: Serological assay for XMRV IgG antibodies will be
available shortly. Samples requiring serological testing may be banked
for future testing if requested.

We are accepting XAND tests on Tuesdays and Fridays only due to the
incubation period required for proper analysis. Therefore, you must
have your blood drawn on Monday or Thursday and ship immediately back to
us by priority overnight FedEx for receipt by us on Tuesday or Friday.

For XAND testing you must use the coded test requisition provided with
your kit. Refer to the updated specimen guidelines in the right column
of the test requisition for proper blood draw.

No special preparation is required for specimens; ship specimens at
ambient (room) temperature. Specimens must be received within 24 hours
for proper analysis. Collection and shipping instructions are included
in each kit along with all required specimen tubes. The return clinical
envelope and overnight airbill are also included.

VIP Dx is a fee-for-service specialty clinical laboratory. Fees are
due at the time of service. VIP Dx will continue to provide patients
with a complete statement with all ICD and CPT codes so that they can
seek reimbursement from their own insurance company.

VIP Dx will bill Medicare as long as the patient provides a valid copy
of their Medicare card and any supplemental insurance and the patient
signs the ABN (Advanced Beneficiary Notice) located on the reverse side
of the test requisition. Medicare patients will be responsible for any
fees not covered by Medicare and supplemental insurance.

VIP Dx is committed to providing quality clinically relevant tests,
accurate, timely results and excellent customer service to aide the
physician in the diagnosing and managing chronic viral and immune
mediated diseases.

We are very excited about our latest technology and new XAND test menu.
To order you test kit and check on test availability, please call Client
Relations. Our Client Relations desk is open from 9:00 a.m. - 5:00 p.m.
Monday - Friday PST. You can also e-mail your request to
info@vipdx.com

You are invited to visit us at our website at www.vipdx.com.

On behalf of the VIP Dx team, we thank you for your continued support.


Marguerite Ross, Director
Marketing & Client Relations
VIP Dx / RedLabs
5625 Fox Ave - Rm 369
Reno, NV 89506
775-351-1890
Fax: 775-682-8517
Cell: 775-813-3319
www.vipdx.com

 

[Rrrr]

more on medicare covering xmrv test

FROM VIP LABS:

The CPT code (procedure code) is 87798.
The Dx (diagnostic ICD 9) code comes from your physician.

Marguerite Ross, Director
Marketing & Client Relations
VIP Dx / RedLabs
5625 Fox Ave - Rm 369
Reno, NV 89506
775-351-1890
Fax: 775-682-8517
Cell: 775-813-3319
www.vipdx.com

 

[Dan]

Personnally, I want out of this disease. I called WPI on Friday, as per recommendation from Andrea Wittmore on the CFIDS facebook page. I want to be tested, I want to put the results on my dr's nose, I want to be seen by infectious disease Dr, and be treated with anti retro virals. I don't mind being a guinea pig, and at the least, I also want to be tested for CMV, EBV and HHV-6, and I certainly will send that the my insurance company who thinks I am inventing this disease so I don't go to work-

I have been in it for just under a year, and I can't believe the suffering of people that's been at it for a decade or a few- It's unbelievable.

Just my 2 cents, I certainly respect others' opinion, it's just that I'm in a hurry. I got a life to live.

My sentiments exactly

 

[Aftermath]

What to Do With a Positive Test?

All of us can't wait for an end to this.

I just don't see what you plan to do right now if you get a positive test? Have you identified a clinical trial with anti-retrovirals that you are considering?

About.com just published an excellent article about why we should consider waiting on testing.

Personally, I am waiting until the first of the year when some things shake out.

 

[cfsme23]

All of us can't wait for an end to this.

I just don't see what you plan to do right now if you get a positive test? Have you identified a clinical trial with anti-retrovirals that you are considering?

About.com just published an excellent article about why we should consider waiting on testing.

Personally, I am waiting until the first of the year when some things shake out.

I think I am with Aftermath on this one, after years of suffering for most of us waiting a few more months is a prudent thing to do. The tests will become more and more refined and the treatment options increasingly wide and varied. It's easy to get carried away and snatch at hope but with false dawns before no matter how excited one gets (and believe me, I am about as excited as they come with regards to all this XMRV shiz) I think it pays to keep one's thinking as objective as is possible in the situation.

 

[Advocate]

1) In the event XMRV is causal for XAND and/or cancer, I would like some lead time to figure out how to tell some folks I may have infected them. And I would like them to hear it from me first.

Levi, those are all good reasons.

 

[dana]

does anyone who is taking the test know hoe long it will take to get your results? just curious thats all!

 

[cold_taste_of_tears]

If it gets there in 24hrs it's stable, so no need for ice pack. (Overnight FEDEX).

Longer than 24hrs and I guess it needs to be frozen, but that's costly and needs a lab.

 

[Andrew]

FWIW, my blood test got messed up because Nov. 30 was a Nevada holiday and my blood tests could not be delivered on time. VIPDx contacted me and said I needed to redraw and resend blood for all my tests except the XMRV tests. She told me that the blood for XMRV needs to sit for awhile anyway, so the delay did not hurt. I wondered about the temperature, but I'm assuming they know what they are doing.

 

[Sushi]

Andrew,

I have always enjoyed a big blood draw; it seems to empty my spleen or something. Maybe some blood pools there and does not circulate as much as arterial blood.

Hi Andrew,

There is a documented thing called splanchic pooling (I get it)--basically venous blood pooling in the abdomen. It is associated with OI. Maybe the blood draw helps with this? My doc always suggested that I wear an abdominal binder (i.e. girdle--ugh!) to prevent this to some degree.

Sushi

 

[cold_taste_of_tears]

People with Dysautonomia and POTS can get splanchic pooling when they eat - it's awful. (Can't feel middle of body often and feel super faint).

Any blood loss in a Dysautonomic or someone with Vaso Vagal Syncope will only make you feel ghastly.

It's a shame we all need blood, we could have endless blood tests (funds allowing) and probably be diagnosed with issues that could be addressed and lead to a better quality of life.

 

[Frank]

Question: Is it the not yet available antibody test at VIP Dx the same as the one that gave the 95% return value in the study?

 

[JMK]

Levi-I called VIP a few days ago to order the XAND2 kit. They put me on a waiting list (6 weeks). I asked them how long it would take to receive results once they receive the blood and they told me 2 weeks.

 

[Liberty]

Hi Everyone,
I am new to this website and forum so I hope I am posting correctly.
I am from Ontario, Canada and had CFS/ME for 28 years. Do you know if the XMRV test is available in Ontario yet?

Thank you, Liberty

 

[firbopt1997]

Liberty- VIP will ship a kit to any where in Canada or the United States. Just give them a call or email them and they will put you on the waiting list.

 

[firbopt1997]

More Testing Info From VIP

I spoke to VIP today regarding my XMRV results and was told that the XMRV is is a slow growing virus and is difficulty to detect in the DNA. VIP is confirming all results before they send them out as final. They are fine tuning the test to produce accurate and timely results. They are in the first round of testing and will get better within the next 30 days. So if anyone is still waiting for their results that is why. Just thought everone should know.

 

[dmarie4301]

TESTING

VIP lab in Reno, NV has several test kits for, or related to, this
virus. One is a PCR test for the XMRV virus itself. Another test kit
recommend by Dr. Paul Cheney is the NKCP & LYEA test. Your local doctor
can call the lab for information and can order the test kit(s) sent to
directly to you. You can also call for pricing, which has been embargoed
until the release of the paper. VIP Lab: 775-351-1890 answered 11am-7pm
(CST) M-F.

Is the NKCP test available mainstream medicine??? Or a specialized test only?? I was going to ask my doctor to run this test and was wondering if other labs, local labs, know how to do this test. Ive had lymphocytes, white cell counts, etc done before (I guess thats how mainstream checks our immune system) and all was okay. So, is the NKCP test outside mainstream medicine then??? (I have a lab requisition form in front of me, cuz Im going in for a thryroid panel, but I dont see anything on there for the immune system...amazingly HIV antibody is on it!)

Thanks for any help with this.

 

[dmarie4301]

I spoke to VIP today regarding my XMRV results and was told that the XMRV is is a slow growing virus and is difficulty to detect in the DNA. VIP is confirming all results before they send them out as final. They are fine tuning the test to produce accurate and timely results. They are in the first round of testing and will get better within the next 30 days. So if anyone is still waiting for their results that is why. Just thought everone should know.

In response to this quote, I dont get how they came up with high positives with the study, but cant do it with our blood from the community. Didnt they find 67% in the DNA??? Why the trouble now?? I dont understand. If they could do it in the study, why not with us??

Comments on this thot are very welcome as well as my thots on NKCP, cuz maybe I need to know if I have other markers for immune dysfunction.

Also, Mikovits said they found XMRV in people without the RNaseL broken link, so getting that test is probably not advisable, since you could have XMRV even tho that the RNaseL pathway is working fine.....another thot.