XMRV Testing-FYI

[Cort]

From CFSWarrior

http://cfswarrior.blogspot.com/

I just spoke with Megan with VIPdx labs. She has been patient and friendly each time I've called. I can't imagine the volume of calls she is getting and her kindness is much appreciated.

Anyway, they will be starting to ship out the test kits on Monday. They are shipping them in batches due to the overwhelming response. Mine will be shipped on Weds.

There are three options for testing:

1) PCR Test: $400.00 (tests for active infection)

2) Virus Culture: $500.00 (for latent infection)

3) Both Tests: $650.00

I'm going to get tested for a number of reasons but the main one is that my SSDI attorney strongly recommended I get tested. I may have to sell one my my mom's antique furniture pieces but I need to know.

 

[cfs since 1998]

I'm disappointed that they aren't offering antibody testing yet. Oh well, I'm going to try to get tested now anyway.

 

[Kati]

From CFSWarrior

I'm going to get tested for a number of reasons but the main one is that my SSDI attorney strongly recommended I get tested. I may have to sell one my my mom's antique furniture pieces but I need to know.

Cort, I wonder why your attorney said that, would it bring you more money, or a better proof or a reversing of decision?

AS I am at the begining of the investigations- haven't been tested for anything other than the initial EBV that started everything a year ago, I am wondering what to get tested for- XMRV- I'd likely get anti-virals for that, but if I get tested for CMV, HHV-6 and EBV, wouldn't I get treatement for these ones too? (I am in Canada, so all these tests would have to be done at VIP and self pay as well)

Sorry you have to sell your mum's furniture.

 

[MEKoan]

Kati,

I'm in Canada and I've been tested for HHV6 and EBV. EBV (mono) is pretty standard testing - I was tested for that, including atibiody levels in late 1979 or early '80. I was tested for HHV6 about 5 years ago. (I haven't been tested for CMV so don't know anything about that.) I have never paid anything for any test.

I'm in Ontario.

Peace out,
Koan

 

[Kati]

Koan, my family dr doesn't want to test me and I would like to have the actual viral load (PCR) which I didn't get when I got mono. For some reason I don't quite trust the canadian tests, in the same way the sensitivity and reliability of Lyme tests are questionable in Canada.

My dr dismissed me when I mentioned to her that with CFS there is a reactivation of the above viruses- and I want to prove her wrong, and I also want to be treated. She also talked to an infectious disease dr who didn't have much to say other than she was not treating CFS patients.

I don't know about Ontario, but here in BC there is quite a shortage of family dr and it might be quite tough to get another one. On the other hand, I am seeing a Rheumy on Jan 5th hopefully she will do these tests and more- but for disability purposes, I need/want to be tested.

 

[fairlight]

cfs since 1998-

I think the latent virus test is for antibodies.

Latent virus A nonactive virus which is in a dormant state within a cell. Herpes virus is latent in cells of the nervous system

(from Gale Encyclopedia of Medicine. Copyright 2008 The Gale Group, Inc.)

 

[Cort]

Actually that was CFS warrior speaking that. (My disability case is too far gone for remediation). iShowing that a retroviruses present, though, can only help one's disability case I would think.

I cthink the culture test is different from the antibody test. My understanding is that the culture test is kind of the gold standard with regards latency. They actually take your cells and put them in some sort of culture; if viruses grow out of the culture then you really did have a virus in your cell. From what I've heard it's kind of a time-consuming lab test. The WPI's ability to grow XM RV virus from cultures was apparently this very important to proving their case to the outside virologists.

Vincent Lombardi, by the way, - the head of the lab, was also the chief author of the Science paper.

 

[Kati]

Cort I am going through disability procedures at the moment- very aggravating- They have phoned me many times to say they don't have sufficient information- and not they are sending me for a functional assessment, 2 days from 8 to 4 with a physio. I wonder how much the physio knows about CFS, and very skeptical about the whole thing.How valid can it be? Like he's gonna make my go touch my toes and say I am competent to return to work? The disability company is paying the guy to produce a report- how biased can he be and can I appeal that?
Certainly having some postitive blood test (and other medical tests) would be helpful into getting a disability.

Certainly, cancer patients, and AIDS patients don't have as much trouble with that part. So, a blood test, and strong correlation with the disease would be helpful.

Kati

 

[MEKoan]

Hi again Kati,

I remember clearly getting the viral load results (in '79 or '80) because I had tested negative initially but, since my illness looked so much like Mono, I was tested for titers several weeks later and was found to be spewing them out at a totally crazy rate. It made no sense to my GP.

A friend of mine is an infectious disease doc here in Ontario. He specializes in HIV but also has a strong interest in Malaria. I asked him about viral rectivation some time ago and his response, which was disappointing to me, was that it was of little consequence because "any stress will cause reactivation of HHV. If you break your leg, herpes viruses will reactivate. It doesn't mean anything." His opinion, not mine.

I decided not to talk to friends about this particular topic any more. I hardly ever see anyone so it's not hard to accomplish.

Anyway, we share your difficulties at finding GPs. It has surprised me that ME is not treated more readily out west. We do expect a left coast effect but perhaps there is not one. There certainly does not seem to be one on the board.

My GP only sees patients once a mo. and not at all during the summer. She's changing many things in her life and I don't know how much longer she will see any patients at all. I will miss having a doctor who, while having absolutely no interest in ME, has respect for me as another woman. It is very refreshing.

Let us all hope that these dark days will soon be behind us. In our favour is the reality that not diagnosing and treating us is more expensive than doing so.

On ODSP I won't be signing up for $650 tests anytime soon - at all! But, it is in the interests of the provincial government to get me well again!

I'm babbling and I'm babbling without a brain.

Nice to see another Canuk. We have quite a few on the forum. Gee, I guess I really shouldn't be happy to see another Canuk, should I. What I mean is, if you have to be one of us, this is the place to be.

peace out,
Koan

 

[Kati]

Koan, united we stand- we are stronger because we are together-
I really feel we as a group can move people- governments and drs than by ourselves.

 

[InvertedTree]

Cort, I wonder why your attorney said that, would it bring you more money, or a better proof or a reversing of decision?

AS I am at the begining of the investigations- haven't been tested for anything other than the initial EBV that started everything a year ago, I am wondering what to get tested for- XMRV- I'd likely get anti-virals for that, but if I get tested for CMV, HHV-6 and EBV, wouldn't I get treatement for these ones too? (I am in Canada, so all these tests would have to be done at VIP and self pay as well)

Sorry you have to sell your mum's furniture.

Kati-

Since the information was taken from my blog I thought I'd respond. My attorney is wanting to build a strong case because I've been denied twice already. We are getting ready to go to Court which is the third stage of appeals process in the US.

I would recommend getting your doctor to order any tests which would show abnormalities. Quest Diagnostics is a good lab to use for HHV-6 and I think they are much cheaper than VIPdx labs.

I fiind it appalling that we who are so sick have to fight so hard to get any government assistance. Not only do we have to fight but it costs a lot of money to try to get SSDI.

I wish you luck on your functional assessment. This whole process is so aggravating.

 

[hvs]

AS I am at the begining of the investigations- haven't been tested for anything other than the initial EBV that started everything a year ago, I am wondering what to get tested for- XMRV- I'd likely get anti-virals for that, but if I get tested for CMV, HHV-6 and EBV, wouldn't I get treatement for these ones too?

Kati, I live next to and have seen an ID doc at one of the fanciest clinics in the land (in USA) and unless I'm very very wrong your experience will be like mine and your average GP and ID doc will scoff at the idea of giving you an antiviral for your herpes-family viruses. They just have a fixed idea that EBV=mono and it will right itself. They also haven't seen any literature that suggests valtrex, valcyte, and vistide work. They are unwilling to think creatively. And why would they prescribe those things if CFS isn't a serious thing (at most, they probably conceive of it as feeling tired or flue-y)?

My guess is a better route is getting the xmrv test and then asking to be treated for it. Since they are unlikely to get what CFS is perhaps you'll need to ask for treatment on the grounds that you don't want an STD.

 

[cold_taste_of_tears]

Firstly thanks to everyone who has given info on here, and to Cort for making an entire web-page about the test that I just saw. Very thoughtful of you as ever.

http://www.aboutmecfs.org/Trt/XMRVTreatment.aspx <-- Good read.

This website is like a counsellor to me, and brings real hope and positive feelings, thank you.

Now I was hoping this test can be done from the UK?

(I was thinking it could be sent within 24hrs via FEDEX maybe?).
I did this before for a NKC test all the way to Texas, so it's possible, but requires a lot of planning and lots of $$$.
Having said that, I had it 'frozen' on dry ice first and 'spun down' in a local lab. Maybe the XMRV couldn't tolerate that?

I heard a few weeks back from the WPI regarding XMRV availabilty that the laboratory spokesperson (I'm guessing not a chemist) said they cannot accept Europeans as the blood would be 'off' by the time it gets there. However Europe is a vast place, and the UK is nudging the Atlantic ocean already, unlike Italy, Germany, Romania etc. So that would save journey time.

My plan of super fast delivery method is thus!

1) Out your arm via nurse: 8.00 am local time in UK
2) Motorcyle it to Airport: Sample leaves house 8.15 am approx + 1hr journey time. = 9.15am. (Leaves 1hr 15 mins check in for FEDEX parcel).
3) Catch a plane to good ol' USA: 10.30 am approx. (9hrs flying time).
4) Land USA: 7.30 pm approx UK time (Leave 1 hr for it to get access out of the airport). Now 8.30PM UK time
4) Motorcyle it to lab. 2hrs? 10.30 pm approx UK time. (I'm guessing there's an airport within 2hrs of Nevada).

So that would be at the very earliest 14hrs 30 mins journey time for the blood sample from the UK to USA.
(8.15 am to 10.30 PM UK time). I know some samples can be spoilt within 12 hrs, and this would be 14hrs 30 approx travel time
from arm to lab.

Minus approx 8hrs for time zone change to America and it would still only be 2.30pm in the afternoon in the USA meaning the lab would still be open for the blood sample to be dropped off.

I really hope this would work. The idea of showing a positive live culture blood test result to a Retrovirus in my doctors practice would have them running for the paper shredder regarding my medical history. Literally, as they have stated CFS and POTS is caused by somatization disorder.

Luckily, I got copies of my medical records first before getting an XMRV test, incase they go 'missing'......

 

[cfsme23]

Newbie here, so please take it easy on me Whilst I am as excited as the next CFS sufferer with the XMRV link being discovered is all this talk of testing a bit premature in terms of treatments options, particularly for those of us such as myself who live in the UK and seem to be a bit behind in our research efforts in comparison to the USA and WPI. If I were to go and get tested tomorrow and found that XMRV was present, that's all well and good, and great I find out that I am part of that cohort but where do I go from there, does it really have any real bearing on my treatment options? Or am I just throwing more good money after bad in my CFS journey which seems to be unending in its ability to shrink the bank account without showing any real improvement in my condition. I really am hoping people are going to be giving me a resounding yes here, but the reality I fear is going to be somewhat different, for the timebeing at least anyway.

 

[Alice Band]

Maybe Scavo36, it will depend on how desperate people's circumstances and if they think they can use the new information to get better benefits or treatment.

I've been turned down for govt benefits as there is "nothing" wrong with me, even when I present good evidence. They claim that none of the medical reports and tests I present justify how sick I am (or in their minds how sick I say I am).

I cannot get my PCT to provide medical treatment for the infections I do have and am buying drugs from abroad. My quality of life is so low that if it was not for my loving husband I would have killed myself.

XMRV may change things for me. It may not. I have lived through many new hyped discoveries.

At present I am buying drugs from abroad. Knowing if I have XMRV gives me an avenue to investigate. It also may give me a lever with the PCT. For me, it is worth trying. I've got nothing to lose.

It will also be of help next time we launch a court case in the UK (like the Judicial Review of the NICE Guidelines failure).

We are all different and will make decisions based on our own circumstances.

 

[Martlet]

Yes, we are all very different. If and when this study is reproduced and there is a tried and tested treatment, then I will want to avail myself of it, but since I was once the star act in another study, at first showing vast improvement only to become even sicker on account of the meds the doctor was conducting his trials in, I am very, very cautious about starting anything new.

 

[jenbooks]

Does anyone know if Enlander is charging for the test? I guess I'll call and find out.

 

[Kati]

Well Levi, good luck with your testing- It makes me reflect: with normal persons, everybody hope to test negative for a test like say HIV. But I am pretty sure with all of us, we all want to be validated and recognized as being sick, and being treated. People from the outworld would find us a bit weird, but here, we understand.

Let us know of your results as well, if you don't mind!

 

[Advocate]

Have not opened it yet. Will be talking this over with my local M.D. next week. Fast service.

Hi Levi,

They told me on the phone that the kit will have two green-top tubes, one lavender tube and a serum separator tube. I think. That's four tubes? Did I miss any?

This matters because sometimes it's awfully hard to get even a few drops of blood out and into a tube.

 

[jackie]

Hi guys! Can someone explain re: "the kits" for XMRV tsting?

I'm not sure if I understand? Are these "kits" to be taken to a lab for blood draws?

Or do you somehow draw your own blood - as in Diabetic testing with a finger-stick???

Hope this isn't a silly question - but I've only been tested (and rarely) for viruses, etc. in a Lab setting.

Thanks! jackie