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XMRV+, but my IL-8 and IL-6 are fine with Genova Labs

RivkaRivka

Senior Member
Messages
368
i have had me/cfs for 21 yrs, and recently tested positive for xmrv culture at WPI. but i just got back my results from Genova Labs for their "Pre-Diabeties" test (blood and urine test), which includes some cytokine/inflammation markers, like IL-8, IL-6 and TNFalpha, and my results are not bad. they are below. i thought WPI and others were using IL-8 and other ILs as "almost markers" for ME/CFS. if so, then why are mine so good, compared to others with CFS who are getting theirs done at VIP?

IL-6: <2 (ref range: <12 best)
IL-8: 11.0 (ref range: 29.2 best)
TNFalpha: 5.1 (ref range: under 4 best)

basically, i wonder if i'd get different results if i tested for these same things at VIP.

genova's test is covered by medicare. VIP is not.

rivka
 

Kati

Patient in training
Messages
5,497
Rivka, congrats on your XMRV positive status!

I am not positive (yet), but my Il-6 and Il-8 are nearing 0 as well. Dr NK says she sees it all the time.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
i have had me/cfs for 21 yrs, and recently tested positive for xmrv culture at WPI. but i just got back my results from Genova Labs for their "Pre-Diabeties" test (blood and urine test), which includes some cytokine/inflammation markers, like IL-8, IL-6 and TNFalpha, and my results are not bad. they are below. i thought WPI and others were using IL-8 and other ILs as "almost markers" for ME/CFS. if so, then why are mine so good, compared to others with CFS who are getting theirs done at VIP?

IL-6: <2 (ref range: <12 best)
IL-8: 11.0 (ref range: 29.2 best)
TNFalpha: 5.1 (ref range: under 4 best)

basically, i wonder if i'd get different results if i tested for these same things at VIP.

genova's test is covered by medicare. VIP is not.
rivka

I did the VIP test and my IL 8 was 40 (very high) but my IL 6 was normal. As far as the reliability of these tests from lab to lab--who knows? There is usually some variation between tests but Genova is a "good" lab.

My XMRV tests at VIP were covered by Medicare but the inflammatory cytokines were not. No idea what the reviewers at Medicare are thinking. I chose VIP cause I am going to see De Meirleir and he trusts this lab.

Sushi
 

RivkaRivka

Senior Member
Messages
368
sushi: yr xmrv was totally covered by medicare? if this is true, i'm sure a ton of folks who had been holding off will now go get this test done at VIP.

Hi kati: i've known about the xmrv for some time now, but do feel happy that i have it (strange world)! just to clarify what you are saying about dr klimas's experience: that IL-8 and IL-6 are often near 0, meaning people with cfs do not have a problem with cytokines?
 

Kati

Patient in training
Messages
5,497
No Rivka, I mean other cytokines are elevated while some are not- Why, I don't know. I will send you a copy of mine.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
sushi: yr xmrv was totally covered by medicare? if this is true, i'm sure a ton of folks who had been holding off will now go get this test done at VIP.

Yes, the XMRV tests were totally covered by Medicare, but that doesn't guarantee that they will do the same on everyone who submits it!

Sushi
 

mojoey

Senior Member
Messages
1,213
Congrats the positive SOMETHING rivka :)

Genova is a good lab-I agree. My il-8 was sky high, but who knows? Cytokines are as variable a marker as they come.
 

floydguy

Senior Member
Messages
650
Hi Rivka,

I can say that my results were quite a bit different when Nancy Klimas ran the cytokine test than when I had it done by another lab (not Genova).

At least in Klimas' case I am not sure the way she responds is any different. As far as I can tell, her patients are on a somewhat similar protocol even though they have different elevated cytokines.

It's very confusing. I can't wait to hear more from Klimas, Montoya, WPI, etc on cytokine abnormalties.

I am high on IL-6 and low on IL-8, fwiw. You might consider asking whether your doc will have the labs run through Klimas' lab. I believe they take insurance.

Andrew
 

aquariusgirl

Senior Member
Messages
1,732
rivka, why did you do the pre diabetes test,?
I have a lot of blood sugar issues, so I'm interested in anything you can tell me about this.
thanks
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
Yes, the XMRV tests were totally covered by Medicare, but that doesn't guarantee that they will do the same on everyone who submits it!

Sushi

Why would medicare not cover everyone equally? Doesn't sound right to me, but it is the Gov't afterall!
 
C

Cloud

Guest
Over the last 2.5 years, I have done a number of Cytokine panels with VIP. Other than when on anti-viral tx, my IL8 didn't seem to fluctuate all that much....The few labs I did pre-tx showed it over 7000. The IL1 beta, IL6, and RNaseL, TNF, etc, were also extremely elevated. All came down significantly with anti-viral Tx. The IL8 came from 8000 down to 700 after a year on Tx and holds pretty close to that number still now a year off Tx. The IL6 came back into normal. Both the IL6 and IL8 will spike with flares. These lab value changes correlate quite accurately with my symptom fluctuations.

Dr Peterson said that my elevated IL6, IL8, and RNaseL, are characteristic findings in this disease secondary to viral perturbation of the immune system.

MCare paid only $50.00 on my original XAND and Culture test from Oct 2009....and I haven't heard what they intend to cover on the Serology done this fall. xmrv+ on both.
 

RivkaRivka

Senior Member
Messages
368
Over the last 2.5 years, I have done a number of Cytokine panels with VIP. Other than when on anti-viral tx, my IL8 didn't seem to fluctuate all that much....The few labs I did pre-tx showed it over 7000. The IL1 beta, IL6, and RNaseL, TNF, etc, were also extremely elevated. All came down significantly with anti-viral Tx. The IL8 came from 8000 down to 700 after a year on Tx and holds pretty close to that number still now a year off Tx. The IL6 came back into normal. Both the IL6 and IL8 will spike with flares. These lab value changes correlate quite accurately with my symptom fluctuations.

Dr Peterson said that my elevated IL6, IL8, and RNaseL, are characteristic findings in this disease secondary to viral perturbation of the immune system.

MCare paid only $50.00 on my original XAND and Culture test from Oct 2009....and I haven't heard what they intend to cover on the Serology done this fall. xmrv+ on both.

hi cloud,

when your ILs went down, did your symptoms also go down?

thanks!
 
C

Cloud

Guest
hi cloud,

when your ILs went down, did your symptoms also go down?

thanks!

Hi Rivka,

Yes...they did, big time. Both IL6&8 have thus far fluctuated up and down in close correlation with my symptom severity. With the last 2 panels, I was fairly close with my predictions of how much they had risen during a flare.

I'm curious to know what Dr P and Dr K would have to say about this difference with some having very high, and some very low IL6&8.