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XMRV positive by serology from WPI

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
I just got my results back from WPI. I tested positive by serology.

I received the following email from Gordon Medical Associates who have been working with WPI on an XMRV study.

I know you have been anxiously awaiting your XMRV results. We finally got a few initial WPI results, and your serology has come back positive. I think you know that serology does not necessarily indicate active infection. We don't yet have the other three test results for you, but they are being run. I also have not yet gotten your Panorama results back, as they are also still working on those. . . . We don't know yet what to do about it. Dr. Mikovits assures me that everyone who is positive will be given the opportunity to participate in further trials. We are taking this quite seriously, and we will be looking for what, beyond what we already do, would be most helpful.

You are free to share your results, but people should know that we got very few results in so far. Some were control samples we sent in, so we don't have many patient results. They will continue to come in over time. Dr. Mikovits has been so busy speaking that it has been hard to do the testing. The speaking is good, because it brings awareness and money, so we need to be patient for the next step, but at least you have the beginnings of an answer for yourself.

I am now, after an initial bit of overwhelm, feeling happy about testing positive. I will be off-line for awhile. I will check back later.
 

Kati

Patient in training
Messages
5,497
(((((Gracenote))))))) Take good care ok? and you know you can come and vent here anytime.
 

fds66

Senior Member
Messages
231
Will be thinking of you Gracenote. Good that you are starting to get results through.
 

rebecca1995

Apple, anyone?
Messages
380
Location
Northeastern US
I am now, after an initial bit of overwhelm, feeling happy about testing positive. I will be off-line for awhile. I will check back later.

Congratulations, gracenote! I hope this turns out to be a good thing down the road. You're our first positive by serology, huh? A pioneer! :hug:
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
Thanks for all your kind thoughts.

I just got this additional email from the Research Coordinator at GMA:

You might let people know, Dr. Mikovits is extremely worried that patients may hurt themselves, trying out unknown and untested therapies. She was shocked to hear some patients and their doctors might be using AZT, as she is very concerned about what it could do to CFS patients. She wants them to be as patient as possible. I know science seems to move very slowly, but actually this is all moving rather quickly in comparison to what is normal in the realms of scientific and medical research. They are doing everything possible to support their prior findings, as well as to push the science further.
 

Dr. Yes

Shame on You
Messages
868
Hi gracenote :Retro smile::Retro smile:

I just got this additional email from the Research Coordinator at GMA:

You might let people know, Dr. Mikovits is extremely worried that patients may hurt themselves, trying out unknown and untested therapies. She was shocked to hear some patients and their doctors might be using AZT, as she is very concerned about what it could do to CFS patients. She wants them to be as patient as possible. I know science seems to move very slowly, but actually this is all moving rather quickly in comparison to what is normal in the realms of scientific and medical research. They are doing everything possible to support their prior findings, as well as to push the science further.

Thanks for posting that. It's very important, I think, so I'm glad they sent it out and it bears repeating.
 

anne_likes_red

Senior Member
Messages
1,103
Hi gracenote :Retro smile::Retro smile:



Thanks for posting that. It's very important, I think, so I'm glad they sent it out and it bears repeating.

Absolutely.


((((Gracenote))))
Whatever you're feeling about your result, there's a virtual hug.
Thanks for sharing your result, and the other important information too.
Anne.
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
This is the first I've heard that the serology test was now available.

This test was done at WPI for a group of patients (and controls) in a study with GMA. This is not VIP. I don't know if a serology test is "available" yet.

Maybe someone can enlighten me a little.

My results are not PCR, Culture or Antibody. What exactly is Serology? I think I should know this but I don't, and there are probably others who are reading this who also don't understand the differences. (I feel like I wasn't ready for my pop quiz someone help me cheat a little, please.)

:Sign Help:​
 

Sing

Senior Member
Messages
1,782
Location
New England
Thank you for sharing your important news with us. You are walking us all through a process we need to learn about, as you go through it yourself. You are one of my stars here, on the Boards, and I hold you in my heart.

Sing
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
They've been working on a blood test that would show antibodies and it looks like they've got it. Dr. Judy was promising this in her last presentation.

From Wiki:

Serology is the scientific study of blood serum. In practice, the term usually refers to the diagnostic identification of antibodies in the serum.[1] Such antibodies are typically formed in response to an infection (against a given microorganism),[2] against other foreign proteins (in response, for example, to a mismatched blood transfusion), or to one's own proteins (in instances of autoimmune disease).

ETA So happy you're getting some answers and thanks for sharing the news. It seems like there's been so much going on it's making my head spin.

So a Serology test is an Antibody test? That makes me wonder what "the other three test results" are for PCR, Culture and what?

Yes, CJB, a LOT has been going on on this forum. My head has been spinning, too, but I'm feeling quite settled now. Now I know. From here the next step will reveal itself.
 

JustJack

put on yer dancin' shoes
Messages
53
Location
Sacramento CA
I want to reiterate...thanks for sharing the news GrACEnoTE:victory:
I have been quite blue over the XMRV controversy. When you stay sick
so long, it feels like getting more and mreo worn down and able to handle less and less.

Thanks again,
JJ:cool:
 

Hope123

Senior Member
Messages
1,266
So a Serology test is an Antibody test? That makes me wonder what "the other three test results" are for — PCR, Culture and what?

Yes, CJB, a LOT has been going on on this forum. My head has been spinning, too, but I'm feeling quite settled now. Now I know. From here the next step will reveal itself.

The last test would be protein expression by XMRV - usually the technique to do this is Western Blot.

For example, the usual first step in HIV diagnosis is antibody. Then for confirmation the Western Blot.

Thanks for posting your results.
 

Anika

Senior Member
Messages
148
Location
U.S.
Gracenote, thanks for sharing your information, and participating in the test. You're one of the reasons WPI is moving close to having the serology test it's been talking about.

I was also confused about what serology meant when I first read some of Judy M's transcripts here. I am learning more than I ever thought I would need to about different types of blood, blood tests, virus tests, etc. This forum is great for that!

I don't think I've seen a glossary here at the Forum on testing - maybe I saw something on basic Immunology issues? I'll have to look - it's hard to keep up with everything here. I was also trying to work out some of the terminology issues on another thread about XMRV earlier today or yesterday - even for "blood" tests there's plasma, serum, whole blood, etc. etc. etc. Thanks to everyone who jumps in to clarify these issues for us.

And, thank you Gracenote for sharing your feeling of being "settled" about this. I hope your tests will help lead you sooner to an effective treatment. If you ever feel unsettled, I hope we can repay some of the support you've provided here.

Anika
 
Messages
34
Hi Gracenote - good to hear that your wating time is over.

It seems like you were one of the first patients that have answers back from the serology test. It also seems like the serology test is just around the corner for all of us.

This is the answer I got from Red Laboratories in Belgium 23th of February 2010.

Dear,

We are working together with the WPI who developed the test. We want to use the same technique as they do. It will still take a few weeks before their cell culture assay is set-up in our lab; but they're developing a serology assay which could come faster. It does not depend on us so I cannot give you a precise date but as soon as some serology plates are ready we will try to get some, to perform the test in our lab. I hope that will be possible within two-three weeks.

Yours sincerely,

Marc Fremont
RED Laboratories
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
NOTE_S1222222222223366-1.gif


for Gracenote,

Thanks for sharing your results with us. :hug: It's neat that you're the first serology patient to test positive. It sounds to me like this is another name for the antibody test that the WPI has been developing.

Hugs,
tee
 
G

George

Guest
Gracenote

I don't know if this is the serology test or not but I thought I would post the information.

National Cancer Institute Center for Cancer Research

Sandra K. Ruscetti, Ph.D.


270_5518_Ruscetti.jpg


Cancer and Neuroimmune Diseases Induced by the Human Retrovirus XMRV

We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS). We were further able to develop a seroconversion assay using cells expressing the SFFV envelope protein to detect antibodies against the virus in the plasma of CFS patients. We now plan to apply our knowledge of the pathogenesis of mouse retroviruses that cause cancer and neurological disease in rodents to study the molecular basis for similar diseases associated with XMRV. We are in the process of developing rodent models for determining the biological effects of XMRV in vivo, which if successful will provide a small animal model for preclinical testing of potential anti-XMRV drugs. In addition, we are testing both in vitro and in vivo the biological effects of the envelope protein of XMRV, which like its related SFFV counterpart may be responsible for the pathogenicity of XMRV.

Collaborators:

Collaborators on this research are Dr. Frank Ruscetti, Laboratory of Experimental Immunology, CCR, NCI; Dr. Larry Keefer, Laboratory of Comparative Carcinogenesis, CCR, NCI; Dr. Judy Mikovits, Whittemore Peterson Institute; Drs. Candace Pert and Michael Ruff, RAPID Pharmaceuticals.
 

Sing

Senior Member
Messages
1,782
Location
New England
Holy Smokes, George! Thank you for posting this, about the work going on using mice and studying their responses to their version of XMRV. Maybe this is off topic for some people, but I want to acknowledge and thank mice spiritually, for their help, in speeding the information we need to be diagnosed and treated for XAND illnesses.

Sing