Author Topic: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore  (Read 4713 times)

EJ

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #30 on: September 27, 2011, 02:43:23 PM »
Your values seems to be off the scale... contact the lab again.

Good luck.

Tango

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #31 on: September 27, 2011, 02:46:19 PM »
That is correct, but the name is wrong.  HGRVs have a unique signature. 
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

EJ

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #32 on: September 27, 2011, 02:59:51 PM »
Had to use XMRV to give him the ref. But HGRV for sure.

EJ

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #33 on: September 27, 2011, 03:33:01 PM »
Hi V did you see your own HGRV...see

Quote
To V and for all to see...10000=V

vvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv
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« Last Edit: September 27, 2011, 03:40:58 PM by EJ »

Tango

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #34 on: September 27, 2011, 03:56:08 PM »
If that's the sequence I'm an alien lol  :D
"I suspect there have been a number of conspiracies that never were described or leaked out. But I suspect none of the magnitude and sweep of Watergate." Woodward

"I would favor any name that does not impose (or give the appearance of imposing) taxonomic preconceptions on the nomenclature." Coffin

EJ

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #35 on: September 27, 2011, 04:02:02 PM »
Why not?...just maybe lol. Kiss... keep it simple stupid.

bakercape

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #36 on: September 27, 2011, 06:52:15 PM »

Here's my view, but do note I'm not a doctor and not saying this is advised. I'm just copying research studies in 'CFS'.

Remember the more flu like and crap you feel, usually the worse the inflammatory cytokines are.
So if you can, don't sit still all day but do more days before the test, so you feel terrible on the day the blood is drawn.
After all, this is the 'real' you.

Real people don't have to sit still all day to feel they can get through a day. So don't sit still if possible, and do get a flair up.
Naturally you have to balance a risk of a relapse, or any other unforseen events if you go exercising. So be sensible. Don't go down they gym all of a sudden, just do what you do that makes
you feel crap either the same day, or days later when you get that immune 'rush'.

Naturally the results will be abnormal anyway if you have ME, but they'll be worse if you exert yourself, as is the nature of the disease.
Your choice as adults to know what to do, but that's my non medical opinion but personal preference when doing cytokine tests that are known to be worsened by exercise.

A good compromise might be to do more activity for as much as possible, but not way more.  I do that and also don't go to sleep and predictably I soon feel much worse and know my immune system has gone crazy, which the blood test results then show.

I've always planned if I get tested for any cytokines or virus's/infections to purposefully put myself into PEM or a small relapse and then get tested in the middle of that PEM or relapse.

I would never tell anyone else to go that route but I feel like it increases the chances of any abnormality being fiund and in doing so prove to my doctor or a disablity review that I indeed am sick.
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NotAllInMyHead

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #37 on: September 27, 2011, 08:22:36 PM »
I've always planned if I get tested for any cytokines or virus's/infections to purposefully put myself into PEM or a small relapse and then get tested in the middle of that PEM or relapse.

I would never tell anyone else to go that route but I feel like it increases the chances of any abnormality being fiund and in doing so prove to my doctor or a disablity review that I indeed am sick.

Sad that we have to resort to that these things, isn't it!

NotAllInMyHead

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #38 on: September 27, 2011, 08:25:13 PM »
RNase-L might be interesting to specialists, but is very poorly understood.
It's an antiviral pathway, but would the average doctor know what it means, or even care?

This is the problem with 'specialist' tests to be honest.  Because they are not 'officially' associated to CFS (thanks to the CDC who tell physicians not to test for things like this), doctors
are either suspicious or confused as to 'why' anyone with 'CFS' would want these tests.  Well, your argument is, prove I have CFS. They cannot. So don't accept the label whenever possible as it gets you nowhere.

Having said that, RNaseL, it's thrown in on the aforementioned list alongside CD4/CD8 ratio, and NKC cells, so probably it is worth it, if the cost is less than the other more
extensive panels.

Most physicians can't spell ''cytokine'', never mind know what they actually do.
(Not taught in medical school).

If your doctor acts upon the results by writing you have these' immune abnormalities' and still sticks with CFS in your medical file it's worth it, and money well spent. Primarily as the CDC state that no known cause of CFS can be known, to have CFS. So if your immune system is either supressed or super high, then you can't have CFS as then there's a reason you are sick!

Otherwise, maybe less so and it's not worth getting tests, but at least if the results are abnormal then you know that you have an immune dysfunction, and that's at least something.

Thanks for your thoughts on that, HGRV_Dominatrix! Do you have an opinion on RNase L being THE marker to decide whether a patient is a good candidate for Ampligen (still thinking about doing Ampligen)? 

cassea

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #39 on: September 27, 2011, 08:43:05 PM »
Thanks for your thoughts on that, HGRV_Dominatrix! Do you have an opinion on RNase L being THE marker to decide whether a patient is a good candidate for Ampligen (still thinking about doing Ampligen)?

Isn't the new Hemispherix test designed to pick who will benefit from Ampligen?

Sjjohnny

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #40 on: September 27, 2011, 08:47:14 PM »
NAIMH, the Rnase-l test is passe for marker use.  You want to wait a while longer (tough I know, but Henispherx must meet with the FDA before Decemeber 15) and see if this test or a new trial becomes available. 

http://finance.yahoo.com/news/Hemispherx-Biopharma-Chronix-pz-2570189067.html?x=0&.v=1

They've got a test that not only identify ME, but a test on who are the high responders to ampligen (which the FDA should love.). 

NotAllInMyHead

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #41 on: September 27, 2011, 08:57:13 PM »
Yes, I am very excited about the Hemispherx test. Really keeping my fingers crossed for that one, especially given Hemispherx's reputation.

But in terms of what was being looked at so far to determine who might benefit from Ampligen, I thought that was RNase L, no?

Sjjohnny

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #42 on: September 27, 2011, 09:14:02 PM »
Quote
But in terms of what was being looked at so far to determine who might benefit from Ampligen, I thought that was RNase L, no?

Well, it might be one of the things they look for.  Dr. Peterson was probably best (or had the reputation of being best) at looking at a number of tests and determining who would benefit from ampligen.  He said he could hit it about 70% of the time (from remarks of about 2 years ago).  so... given the expense and inconvenience (so far at least), it would be nice to have near 100% odds.

Sjjohnny

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #43 on: September 27, 2011, 09:26:47 PM »
My memory is not quite right.  Peterson says in this blog that 70% have some improvement with ampligen.  Here, and times have changed.   

http://sfc-em-investigacion.com/viewtopic.php?t=703&p=2952

Mikovits stated at one time that 30% improve, 30% no improvement and 30% reactivate the virus and do worse (!).  Probably wise to wait until they've got it figured out.

MEkoan

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Re: XMRV Tests Now Offered by WPI Lab (UNEVX), Not VIP Dx Anymore
« Reply #44 on: September 27, 2011, 09:41:28 PM »
I've always planned if I get tested for any cytokines or virus's/infections to purposefully put myself into PEM or a small relapse and then get tested in the middle of that PEM or relapse.

I would never tell anyone else to go that route but I feel like it increases the chances of any abnormality being fiund and in doing so prove to my doctor or a disablity review that I indeed am sick.

This is a very interesting observation.  I am a single person without anyone to take me to doctor appt.s or to help around the house if I pushed myself into a crash.  So, in order to get to an appt., I have to pace very carefully leading up to it.  If I am experiencing significant PEM, I can't see a doctor.  I think this is a conundrum for many of us.
Knowledge is knowing a tomato is a fruit. Wisdom is not putting it in a fruit salad.