VIP Dx/WPI Serology (Antibody) Test Results

[Cort]

We'll try and chart whether illness level effects ones potential for testing positive; i.e. will severely ill patients be more likely to test positive than moderately ill patients? To get a grasp on that this poll will assess illness level relative to disability on three levels; severely ill, moderate to severe, mild to moderate. Disability levels aren't perfect but they're a start. (Unfortunately because the poll is restricted to 10 questions, we can't assess how people with 'mild' ME/CFS fared).

The Disability scale is from 'The Doctor's Guide to Chronic Fatigue Syndrome', by David S Bell, pages 122-123.

These polls are completely private; neither I nor anyone else can determine how anyone voted. To take the poll simply determine your scale of disability and then use it to answer the poll question.

Dr. BELL'S CFS DISABILITY SCALE

Healthy

• 
  100 = No symptoms at rest. No symptoms with exercise; normal overall
  activity level; able to work full-time without difficulty.

MILD

90 = No symptoms at rest; mild symptoms with activity; normal overall
activity level; able to work full-time without difficulty.

80 = Mild symptoms at rest, symptoms worsened by exertion; minimal
activity restriction noted for activities requiring exertion only; able
to work full-time with difficulty in jobs requiring exertion.

MILD TO MODERATE

70 = Mild symptoms at rest; some daily activity limitation clearly noted.
Overall functioning close to 90% of expected except for activities
requiring exertion. Able to work full-time with difficulty.

60 = Mild to moderate symptoms at rest; daily activity limitation clearly
noted. Overall functioning 70%-90%. Unable to work full-time in
jobs requiring physical labor, but able to work full-time in light
activities if hours flexible.

MODERATE TO SEVERE

50 = Moderate symptoms at rest; moderate to severe symptoms with
exercise or activity; overall activity level reduced to 70% of
expected. Unable to perform strenuous duties, but able to perform
light duty or desk work 4-5 hours a day, but requires rest periods.

40 = Moderate symptoms at rest. Moderate to severe symptoms with
exercise or activity; overall activity level reduced to 50%-70% of
expected. Not confined to house. Unable to perform strenuous
duties; able to perform light duty or desk work 3-4 hours a day, but
requires rest periods.

30 = Moderate to severe symptoms at rest. Severe symptoms with any
exercise; overall activity level reduced to 50% of expected. Usually
confined to house. Unable to perform any strenuous tasks. Able to
perform desk work 2-3 hours a day, but requires rest periods.

SEVERE

20 = Moderate to severe symptoms at rest. Severe symptoms with any
exercise; overall activity level reduced to 30%-50% of expected.
Unable to leave house except rarely; confined to bed most of day;
unable to concentrate for more than 1 hour a day.

10 = Severe symptoms at rest; bedridden the majority of the time.
No travel outside of the house. Marked cognitive symptoms preventing
concentration.

0 = Severe symptoms on a continuous basis; bedridden constantly;
unable to care for self.

 

[Cattrina]

I rate as (30) low in the moderate to severe on Dr. Belle's rating without slipping into the severe rating yet tested neg for XMRV through VIP Dx. Although I am somewhat relieved I suddenly feel like a flailing group of one. Where do I head next. My illness has caused such poverty I am on the verge of losing every last thing I have and now that includes a direction to head in too. I am in NW CT. Is there anyone that can help me with any advice about what to pursue and with whom? I have also tested neg for Lyme several times although I had the bulls eye in spring of 2003. In spring of 2007, when this all started, I had a severe eight week, upper respiratory illness that I believe fits the description of EBV although my doc would not test because he knows that adults don't get mono. Yes, I have changed doctors and added a few more but still have no evidence of EBV either. I have not recovered from this 2007 illness and my baseline keeps sliding downward.

 

[omerbasket]

This thread is about antibody tests - yet you said you've been tested through VIPdx, which to my knowledge does not offer right now an antibody test. Therefore, and correct me if I'm worng, I guess your were not tested for antibodies and were just tested for XMRV by culture. That should be a less reliable test than an antibody test, and therefore there is still a reasonable chance that you are infected with XMRV.

And by the way, even the antibody test that WPI is doing might not find all the people infected with XMRV (since the tests are not yet completely validated to find XMRV whenever it's there), and I know that sue ("ladybugmandy" on this forum) has tested negative for XMRV by PCR and by culture - then started treatment with antiretrovirals (AZT and afterwards add Raltegravir) - and then got her antibody test results (from WPI I think), but still, she did experinece until now a 25% improvment in her situation after starting AZT and she's in an early stage in her antiretroviral treatment, so there might be some more improvment in the coming months. You can see her notes regarding that in this thread: http://www.forums.aboutmecfs.org/showthread.php?3939-My-AZT-RAL-Trial

 

[gracenote]

I rate as low in the moderate to severe rating without slipping into the severe rating yet tested neg for XMRV through VIP Dx. Although I am somewhat relieved I suddenly feel like a flailing group of one. Where do I head next. My illness has caused such poverty I am on the verge of losing every last thing I have and now that includes a direction to head in too. I am in NW CT. Is there anyone that can help me with any advice about what to pursue and with whom?

Cattrina,

There are many on this forum who are in the same situation as you. If you'd like, you could start a thread and "Introduce Yourself" or even start a thread for XMRV negatives according to VIP. Or read through some of the really wonderfully descriptive blogs some that come to mind are by Jody, LaurelB, Michelle, The Spitfire or check out some of the lighter moments in the community lounge.

One thing for sure is you are not alone in your struggle. The other thing is that your negative test result is not the final result and there is much we still don't know.

Welcome to the forums. I'll keep checking for any new posts from you.

gracenote

 

[Cattrina]

Well thank you everyone, I really needed to connect. I have kept my spirits up so far but feeling like hopping in the pine box more and more lately. I will follow through reading and researching your suggestions. My GP kind of politely told me that if I went ahead with testing he wouldn't be a part because if I tested pos there was no verified Tx. He handed me a number supposedly to Yale research. When I tried the number I think I was talking with the janitorial staff but they had no knowledge of what I was saying nor advice. I researched a "fibro friendly" (that is as close to CFS as they get around here) rheumotologist. After a few very costly visits, realized that he was interested in making a fortune off of sick people and not listening to one thing that I or my chart said. I have no doc at this point. Oh and I should also mention that I had to drop my health bennies too due to poverty.
I was tested with culture and PCR. Dr. Lombardi spoke with me saying that culture/PCR method was the absolute bomb when it came to XMRV testing. Not so aye? I don't know what method of Lyme test they did as I didn't understand much about it back then. Simplificated Methylation Protocol results are difficult to understand. How sick were people before they got those results? Thank you again. I will try to buck up. Cattrina

 

[gracenote]

Cattrina,

You could check out this thread XMRV positive by serology by WPI. See post #35 about Dr. Mikovits' views on serology testing.

 

[Dr. Yes]

Hi Cattrina

Gracenote is right, many people on this forum can relate to what you are going through right now (myself included). Some of them are going through it as we speak. There needs to be far more focus on financial issues in ME/CFS advocacy, so I am very glad you posted - and I hope this becomes a larger part of discussion on this forum.

As others have said above, XMRV detection is in a state of scientific infancy (as is XMRV research itself); it is likely that the virus replicates more in other tissues (i.e. not always in the blood), so PCR would not pick it up in the blood; a good serum IgG antibody test should be more helpful. No one has even looked in other tissues in humans yet, though preliminary animal studies suggest that XMRV likes to hang out in lymph node and reproductive organ tissue, so who knows.

Lyme tests, as you've probably found out by now, are notoriously unreliable, esp. the standard antibody tests (done by ELISA method), and Lyme testing and treatment are highly controversial issues. Many Lyme docs recommend antibiotic treatments without a positive test (but at least one has gotten in serious trouble for prescribing them).

It sounds like you've done your homework, but just in case.. have you tried contacting local (Connecticut) CFS support groups to try to locate a decent doc? The Connecticut CFIDS & FM Association has an information number: (800) 952-2037 ; I have no idea what sort of group they are, though, apart from what it says on their website: http://www.ct-cfids-fm.org/

.. and that they ripped off their emblem:



..from the cover of one of my favorite albums:






Glad you're posting, Cattrina.

 

[omerbasket]

Anyway, Cattrina, I think that pretty much everyone around here would agree that a serology test would probably find evidence for the virus in more people than culture and PCR. Could it be that Dr. Lombardi meant that with all the current methods available for testing commercialy, culture and PCR are the best that are offered in the market (because we had before commercial labs that offered tests that were probably much much less reliable)?

 

[Snow Leopard]

It would also be useful if those who have used the culture test will reply and state their results for that test as well.

 

[redo]

I see there's six votes in this poll. I know Ladybugmandy got a serology test from WPI, but are there really five others who've also got it? If the answer is "Yes" then I'd appreciate it if they'd post something about it. As I've understood it it's hard to get the test from the WPI.

 

[awol]

I think this poll should be restarted. I am not sure everyone correctly interpreted which test was being referred to.

 

[muffin]

"The serology test is not yet available" 17 July 2010 = email to me from VIP DX

The serology test is not yet available.

Please check back in two weeks.

Thank you and I apologize for the delay. The test is still in validation.
Marguerite Ross, Director
Marketing & Client Relations
VIP Dx / RedLabs

5625 Fox Ave - Rm 369

Reno, NV 89506

775-351-1890

Fax: 775-682-8517
www.vipdx.com

 

[Snow Leopard]

I think this poll should be restarted. I am not sure everyone correctly interpreted which test was being referred to.

Agreed. It should be restarted when the new test becomes available.

 

[Cloud]

My understanding directly from VIP is that the serology test has not yet been available to anyone. It should be ready by the end of July. The VIP website said it would be ready in June, but they didn't make that goal. They have had my blood since late May waiting for this test....so, I stay in touch with them on this issue.

 

[Stone]

VIPDx HAS NOT REPORTED ANY SEROLOGY RESULTS TO DATE

Yes redo, I just got an email from VIPDx stating that they have not reported ANY serology tests at all to date so how on earth, other than through WPI, can someone know if they have a positive serology (antibody) test? What am I missing here?

 

[Snow Leopard]

I'd like a new poll also!

 

[Cloud]

Yep...obviously some people (lot of people) were confused about having actual Serology test results. We need a new poll, and some good discussion on what these results will tell us. The first Serology results should be coming in any day now.

I'm not sure when Dr Kenny's or any other Serology results will be available, I'm just going on VIP.

 

[Lynn]

I just called VIPdx. They said that the serology tests would not be ready for another couple of weeks. They are going through quality control. I thought people would want to know.

Lynn

 

[Cloud]

I just called VIPdx. They said that the serology tests would not be ready for another couple of weeks. They are going through quality control. I thought people would want to know.

Lynn

Thanks Lynn. I also like the chicken joke....sounds like a line from Family Guy

 

[ukxmrv]

Thanks Lynn, lots of nervous people waiting for their results. Sounds like they are releasing the culture test results and then "pending" on the form for the serology.

Lots of people who were negative waiting for their retest and my heart goes out to them.