xmrv needs 4 tests (Nov 09)

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Gracenote highlighted the following excerpt from Dr Bell's newsletter that imready posted. http://www.davidsbell.com/PrintLynNewsV6N3.htm

I thought it was important enough to have it's own thread.

XMRV DNA was found from 68 of 101 patients (67%), and this was in the Science paper. That leaves 33 patients with CFS who were negative. But on further testing 19 of these 33 are XMRV antibody positive, 30 of these 33 had transmissible virus in the plasma, and 10 of these 33 had protein expression. Overall 99 of the 101 patients show evidence of XMRV infection.

These results have interesting implications. The most important is that there is not a simple test now that will tell you if you have XMRV or if the virus is active in your system. And we need a good control study using all three measures to accurately know control presence of the virus. This is not a fly-by-night operation. Right now, it is necessary to do several tests to know the XMRV status:

a) DNA by PCR

b) Viral infectivity

c) Detection of viral proteins

d) Antibody to the XMRV envelope

As time goes on and we learn more, this process will be simplified. What I do not want is poor science that will cast doubts on an illness that already has its fill of doubters. Lets do it right from the beginning. If by doing it right XMRV proves not to be the cause, so be it. Something is the cause.
if:)
 
K

_Kim_

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Note that the tests that Dr. Bell speaks of are (at the moment) the different ways that XMRV can be detected. So, if your tests from VIPdx (PCR and antibody) are negative, you still may test positive by one of the other tests.

From the VIPdx website:
Coming Soon!

XAND with Western Blot (reflexive) as confirmation of XMRV active infection

XAND by serology: Serological assay for XMRV IgG antibodies will be available shortly. Samples requiring serological testing may be banked for future testing if requested.
However, if your PCR and/or antibody test are positive, there's probably no need to have the others done.
 

mojoey

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Peterson

Dr. Peterson told me if I have a neg. PCR, there's no reason to get the other tests done because it's not active. The PCR is the screener.
 

kamina

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Also note that Dr.Bell says the following at the end of the newsletter about testing:

I am reluctant to suggest to anyone that they spend big bucks for a commercial test now. We do not know if a particular test is accurate, and even if it is accurate we do not know what it means, and even if we did know what it meant we would not know what to do with it. I would be patient. Answers will start flowing soon, so stay tuned.
 
A

Aftermath

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Link to Testing Thread

Here is a link to islandfinn's "4 test thread."

FYI, you guys have the ability to do links. Just highlight the globe with the paperclip icon above the posting window and paste in the URL of the thread you wish to link to.
 

citybug

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Dr. Peterson told me if I have a neg. PCR, there's no reason to get the other tests done because it's not active. The PCR is the screener.

But if you are positive then you want them for....? To measure progess?
 
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Lyme patients know that lyme losers the immune response very much, so that very sick lyme patients often ahve entirely negative tests. That is ELISA tests for lyme antibodies 8=immune syetem's response to the pathogen) and western blots (that is wetsern blots for antibodies to different protein parts of lyme bacteriae, and lyme really hidess it surface proteins, and lowers the immune system, like cd-57)

Now xmrv attacks the b cells adn lowers immunity, is there a problem like with lyme, that sick patients test negative becasue they are so sick?
Of course , PCR tests against the actual pathogen and is not antibody dependent.
Now with lyme, they usually have to take that test several times before a lab finds the needle in the heystack. That is because lyme is not so much in teh blood, but in cartilage and the cns, where body immune cells do not circulate so much, neither do antibiotics...so it is not quite the same.

But antibody testing, that is dependent on antibodies; western blot, is that to antibodies too?
 

CBS

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Controls and more thorough testing?

Does anyone know if any of the controls were subjected to the more thorough analysis? I wonder what those numbers would look like.

Lots of questions all around!

XMRV DNA was found from 68 of 101 patients (67%), and this was in the Science paper. That leaves 33 patients with CFS who were negative. But on further testing 19 of these 33 are XMRV antibody positive, 30 of these 33 had transmissible virus in the plasma, and 10 of these 33 had protein expression. Overall 99 of the 101 patients show evidence of XMRV infection.

These results have interesting implications. The most important is that there is not a simple test now that will tell you if you have XMRV or if the virus is active in your system. And we need a good control study using all three measures to accurately know control presence of the virus. This is not a fly-by-night operation. Right now, it is necessary to do several tests to know the XMRV status:

a) DNA by PCR

b) Viral infectivity

c) Detection of viral proteins

d) Antibody to the XMRV envelope

As time goes on and we learn more, this process will be simplified. What I do not want is poor science that will cast doubts on an illness that already has its fill of doubters. Lets do it right from the beginning. If by doing it right XMRV proves not to be the cause, so be it. Something is the cause.
 

parvofighter

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Negative bloodwork - a showstopper?

Hi @ Lady, you raised an excellent point about whether one can have virus in tissues, but not in blood:

what if the virus is only in the CNS and brain and is gone from the blood?...can that happen?
From what I can discern of the available research, we just don't know that yet for XMRV. BUT we sure as heck do for some of the opportunistic viruses. Dr Ablashi, Scientific Director of the HHV-6 Foundation writes an excellent precis on the dangers of assuming that bloodwork is THE answer. He cites several specific instances of where tissue investigations are required (eg. PCR, immunohistochemistry) in lieu of bloodwork, in his letter to CFSAC: http://www.hhs.gov/advcomcfs/meetings/presentations/ablashi_1009.pdf

One of his key points:
"The CDC has made several assumptions that we believe will prove to be in error:
1. The CDC has assumed that if a pathogen exists, it can be found in the serum"


Also:
"It is imperative that the CDC study biopsy samples from the gut, and brain as well as heart tissues, and
that they look at spinal fluid. Most of the studies done by the CDC have been on serum. However, many
pathogens cannot be found in the serum because they do not circulate in the peripheral blood after the
initial infection."


This diagnostic oversight is absolutely vital for us patients to understand, because we're talking about chronic, years/decades long infections. Namely, when is bloodwork adequate, and when does it yield false negative results? Despite all the vampire hype in the media, blood isn't always all it's cracked up to be. Because false negative in bloodwork = no treatment.

Here are a few tidbits from my digging through the chronic Parvovirus B19 research, another known virus associated with ME, which is known to present diagnostic challenges with bloodwork:

Over-reliance on unreliable bloodwork: The Dangers
  • From Harvard: In some low viremic states, parvovirus B19 DNA is detectable by nested PCR in plasma but not in serum. S. Kim Jacobson, Jennifer S. Daly, Grace M. Thorne, and Kenneth McIntosh. Chronic Parvovirus B19 Infection Resulting in Chronic Fatigue Syndrome: Case History and Review (From the Division of Infectious Diseases, Department of Pediatrics, Harvard Medical School). Clinical Infectious Diseases 1997; 24:104851 : http://www.journals.uchicago.edu/doi/pdf/10.1086/513627
  • The diagnosis (of PVB19) is based on serology, bone marrow examination to demonstrate pure red cell aplasia, and PCR tests to demonstrate the presence of parvovirus B19 DNA in clinical specimens. Use of serology is limited due to failure to mount immune response in some patients. Schlossberg, David. Clinical Infectious Diseases. Part XI: The Susceptible Host, pp. 620-621. Cambridge University Press, May 2008. http://books.google.ca/books?id=-wW...m=23#v=onepage&q=acyclovir parvovirus&f=false
  • immunocompetent individuals who have evidence of current or recent infection may lack detectable levels of B19 DNA in their blood when tested by PCR. Evidence to support this came from a study of 40 immunocompetent individuals, who were tested for B19 DNA by PCR. All had shown evidence of seroconversion, B19 IgM and B19 IgG positive. Of these 40, only 45%(18/40) contained B19 DNA using non-nested PCR, whereas the remaining 55% of samples were negative by PCR for B19V DNA. It is suggested that based on this data, PCR should not be used to detect B19V acute infection in immunocompetent persons. Diagnosing human Parvovirus B19 infection: Guidelines for test selection. Jordan J. Molecular Diagnosis 2001:6:307-312. See page 3 of URL: http://www.fifthdisease.org/cmsFiles/fifthdisease_human_literature_reveiw.pdf
  • It is well known that the B19 genome can be detected in tissue without concurrent viremia as well as that negative serological test results during acute B19 infection can be seen in the first months after HSCT (hematopoietic stem cell transplantation) and It has to be noted that not all assays are capable of detecting the B19 genotypes 2 and 3. F Beske, S Modrow, J Srensen, H Schmidt, S Kriener, R Allwinn, T Klingebiel, D Schwabe and T Lehrnbecher , Parvovirus B19 pneumonia in a child undergoing allogeneic hematopoietic stem cell transplantation. Bone Marrow Transplantation (2007) 40, 8991; doi:10.1038/sj.bmt.1705693; published online 30 April 2007. http://www.nature.com/bmt/journal/v40/n1/full/1705693a.html

Here's an example of how this plays out for patients with ME and chronic PVB19. The reality emerges that legions of chronic PVB19 patients are denied proper diagnosis and further investigation as a result of flawed emphasis on bloodwork which may itself be flawed! To whit: my PCR for PVB19 was negative in Canada, but my clinical presentation was exactly like that of Kerr's PVB19 chronic fatigue patients. So while it may be well known in German cardiology circles that B19 genome can be detected in tissue without concurrent viremia, this is certainly not my experience in Canada, where it took 10 years of bull-headed insistence and a trip to Germany for a biopsy to prove that I had chronic PVB19.
 

parvofighter

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Active/reactivated vs latent virus

Oops - forgot to add... the other consideration is that if you get tested for any virus, you ideally want to know:
- Do I have the virus (the <4% of controls reported by Mikovits)
- Is it active/reactivated, or latent?