1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Phoenix Rising Adds Two New Board Members
Mark Berry introduces the new President of Phoenix Rising, Dr. Gary Solomon, and welcomes Professor Jonathan Edwards to the Phoenix Rising Board of Directors.
Discuss the article on the Forums.

VDR test--results? Response to GcMAF?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Sushi, Dec 28, 2010.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Hi,

    I am starting a new thread just to discuss the VDR results. Some had the test from Yasko, some may be getting one allele tested at Genova and some are getting the Redlabs test. Also, a few have been tested by two labs.

    Our big question is how well, in clinical experience, these tests predict your response to GcMAF. It would be great for people to post their results here, their comments, and, if they have already started GcMAF, how their VDR results correspond with their response to GcMAF.

    We also wonder about the accuracy of these various tests.

    I just got my RedLabs results today and they are disappointing :(:

    FOK 1-- low responder

    BSM 1 -- moderate to low responder

    I hope to start GcMAF next month. Has anyone who has been tested at RedLabs had a "high responder" result? So far, I only recall results similar to mine--though De Meirleir reports treating some high responders.

    Thanks!
    Sushi
  2. guest

    guest Guest

    Messages:
    320
    Likes:
    5
    Hi Sushi, I feel sorry for your results but GcMAF is still worth a try. Who knows if Redlabs is really doing a good job when testing and interpretating the results. Moreover I want to know if there is any work around and if high vitamin D levels (especially during the summer when 1 hour sunshine equals 25.000 units of Vit D in your body compared to 500 to 1000 units in normal supplements) improves GcMAF treatment.
  3. serg1942

    serg1942 Senior Member

    Messages:
    344
    Likes:
    345
    Spain
    My VDR and soluble CD 14 results from REDLABS

    Hi guys,

    I have just received some of the tests I performed at Himmunitas (Prof. De Meirleir’s clinic) one month ago.

    I am glad, because my VDR status is the one who responded with “half strength” as shown in Yamamoto paper. Not sure if this will be enough to knock XMRV though…

    I feel bad reporting some degree of hypothetical response to GcMAF, when most of you show low response. But I think that if GcMAF finally turns out to work in those with good genetics, we’ll find a way to bypass these genetic weakness, so I don’t think we have to loose the hopes in this regard.

    My results are exactly the opposite than Yasko’s (who’s right or wrong here?):

    GVDR- FOK1 FOK1 Polymorphism Low responder
    GVDR-BSM1 BSM1 Polymorphism High responder

    The other tests results are very interesting, because they fit with the situation:

    Th1/Th2 ratio is at the lowest limit of the normal range, meaning that the cellular response Th1 is low compared to TH2 (This is a normal feature on CFS—recall that Th1 is the one needed to fight viral infections, while Th2 high could explain inflammation of the nervous system, etc.)

    Soluble CD14 low: Interestingly, according to this paper:

    http://www.google.es/url?sa=t&sourc..._IYvWn1nw&sig2=25thAMdh1Kl0Kpx9fxp2Qw&cad=rja

    Soluble CD14 is:

    (...)Activation of macrophages represents one of the initial events in innate immunity to intracellular infections. CD14 is expressed principally by cells of monocyte/macrophage lineage and plays a pivotal role in innate recognition of bacterial cell wall components, particularly lipopolysaccharides (...)

    So, this marker confirms low activity of macrophages and low Th1 immune response in general, what fits with the rest of the results and with what we know about CFS immunity.

    I have left to receive other tests, like Nagalase and cytokines. I’ll let you know when I get them.

    Wishing the next year is for all of us much happier than this one (health wise!):victory:,
    Sergio
  4. serg1942

    serg1942 Senior Member

    Messages:
    344
    Likes:
    345
    Spain
    I have to correct my previous post, because I just realized that my combination (bb/ff) was not studied in the Yamamoto paper, so, who knows how this combination works! It would be logical to think that it should work the same as Bb/Ff does (that is, half strength), but in this subject the only thing that accounts in the empirical evidence, and not the logic...

    We'll see!

    Sergio
  5. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    hi sergio
    what is bb/ff in yasko terms? is that +/-?
    I wish redlabs would use the normal nomenclature..
    thanks for posting.
  6. Glynis Steele

    Glynis Steele Senior Member

    Messages:
    400
    Likes:
    84
    Newcastle upon Tyne UK
    Hi Aquariusgirl,

    I tried PMing you, but your inbox appears to be full.

    Glynis
  7. guest

    guest Guest

    Messages:
    320
    Likes:
    5
    EBV blocks the Vit. D receptor.

    Cell Mol Life Sci. 2010 Dec;67(24):4249-56. Epub 2010 Jul 1.

    Epstein-Barr virus encoded EBNA-3 binds to vitamin D receptor and blocks
    activation of its target genes.
    Yenamandra SP, Hellman U, Kempkes B, Darekar SD, Petermann S, Sculley T,
    Klein G, Kashuba E.
    Department of Microbiology, Tumor, and Cell Biology (MTC), Karolinska
    Institute, 171 77, Stockholm, Sweden.
    Epstein-Barr virus (EBV) is a human gamma herpes virus that infects B
    cells and induces their transformation into immortalized lymphoblasts
    that can grow as cell lines (LCLs) in vitro. EBNA-3 is a member of the
    EBNA-3-protein family that can regulate transcription of cellular and
    viral genes. The identification of EBNA-3 cellular partners and a study
    of its influence on cellular pathways are important for understanding
    the transforming action of the virus. In this work, we have identified
    the vitamin D receptor (VDR) protein as a binding partner of EBNA-3. We
    found that EBNA3 blocks the activation of VDR-dependent genes and
    protects LCLs against vitamin-D3-induced growth arrest and/or apoptosis.
    The presented data shed some light on the anti-apoptotic EBV program and
    the role of the EBNA-3-VDR interaction in the viral strategy.
    Publication Types:
    * Research Support, Non-U.S. Gov't
    PMID: 20593215
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Very interesting Diesel,

    Thanks for posting this. I wonder if high EBV titers could screw up this test!? And possibly screw up the action of GcMAF? What do people think from reading this?

    I have extremely high EBV titers and probably many of us getting this test also do. Makes me wonder if I should take a big shot at EVB before trying GcMAF. I have successfully reduced the titers by about a third in the past with just herbal treatment (mainly oregano).

    If EBV is a factor in the efficacy of GcMAF, it could explain the slow progress that many report.

    All thoughts most welcome.

    And Sergio, your test results are also interesting in that they fit the big picture. So glad you got at least "half & half" results on your VDR. And, do you know what your EBV titers are? If EBV is a factor, it gives us something to work on.

    Sushi
  9. serg1942

    serg1942 Senior Member

    Messages:
    344
    Likes:
    345
    Spain
    Hi aquariousgirl,

    VDR Bsm1 bb = -- = non polymorphic or wild (high responder acording to Redlabs)
    VDR FOK1 FF = -- = non polymorphic or wild (high responder acording to Redlabs)
    VDR Bsm1 bB = Bb = -+ = +- = heterozygous mutation (Moderate responder acording to Redlabs)
    VDR Fok1 fF= Ff= -+ = +- =heterozygous mutation (Moderate responder acording to Redlabs)
    VDR Bsm1 BB = ++ = homozygous mutation (Low responder acording to Redlabs)
    VDR Fok1 ff= ++= homozygous mutation (Low responder acording to Redlabs)

    I would also like to know what Redlabs consider as high responder, moderate or low. I guess, by logic, that must be as I have written above, but I wonder why Yasko's tests for VDR are not matching with Redlabs, and moreover, there's not any pattern we can identify to compare their results...it's very weird actually...

    Best,
    Sergio
  10. serg1942

    serg1942 Senior Member

    Messages:
    344
    Likes:
    345
    Spain
    Hi Sushi,

    From the abstract it seems EBV can block the genetic expression of VDR, so I guess this means that it lowers the number of VDR receptors.

    Whether this can affect GcMAF efficacy I think depends on whether GcMAF action depends in turn on the VDR receptor itself, or rather, on the levels of vitamin D dependent on VDR status...

    Could any of you solve my doubt?

    Un abrazo,
    Sergio
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    Sergio,

    For interest, do you know how high your EBV titers are? It seems "fishy" that so many of us test badly on the VDR. When I did a mini statistical analysis of about 50 Yasko results, only about 7% (if I remember correctly) had "good" VDR tests. I wonder if the general "healthy" public would test the same as the ME/CFS population does. It is hard to believe that actual polymorphisms of the VDR are so common!

    Of course, we are a group that is almost "self-selected" to have a problem with EBV.

    Sushi
  12. Lou

    Lou Senior Member

    Messages:
    476
    Likes:
    300
    southeast US
    Hi guys,

    I'm sorry, but given the conflicting data from various labs, given the work and worry to obtain tests results of your VDR status that lack solid prediction of your response because of the conflicting data, not to even mention the costs involved, it's just difficult for me to understand the seemingly 'all-out' importance of this preliminary step. Maybe in this particular case because of those circumstances mentioned it's simply better if you're so inclined to just give gcmaf a try. It's still the ONLY way you'll know for sure.

    If I could just make another point: What are the chances of that couple from Texas(sorry, for now can't recall their names) both having just the right vdr status to be high responders? The wife(I think the husband is a doctor and I'm trying to be more clear about the people referred to) posted that both of them responded well to gcmaf. I could be off on this but if I recall correctly the odds of BOTH of them being in the highest response group is less than one in a hundred. My two cents--yes, nearly worthless-- is that most everyone will benefit to some degree on gcmaf as long as their vit d levels are high enough.
  13. serg1942

    serg1942 Senior Member

    Messages:
    344
    Likes:
    345
    Spain
    Sushi, the genetic test cannot be changed by epigenetics (infections, pollution, etc.). However, epigenetics can affect the way the genes are expressed.

    So, if we have infections like EBV that inhibit VDR gene expression, them we will have less VDR receptors available, and therefore this might affect GcMAG efficacy. But the test result is always the same (provided it has been done correctly).

    Oh, my IgG EBV titers have been for the last 7 years at 4 (being the normal limit 1), so this is not high enough to cause symptoms.

    Saluditos,
    Sergio
  14. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    Hmm. More questions than answers.

    Thanks for your explanation sergio.

    Lou: Cindy Willis & her husband had not been sick that long by the time they got GcMaf.. so if Vit D levels are a factor.....it could be that their Vit D levels were not in the tank.

    Apart from anything else, I am wondering if it's worth supplementing with Vit D if one's EBV levels are sky high.

    Could this stuff get any more complicated?
  15. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    947
    Likes:
    91
    Lou
    have you said who yr doctor is?
    Maybe he could tell our docs how to order and prescribe GcMaf. Save us a trip to Europe.
    Thanks.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,919
    Likes:
    5,776
    Albuquerque
    I think I'm going to try "kicking" EBV to try to optimize my chances with GcMAF.

    I was hoping that active EBV could interfere with the test and since these titers can vary according to what treatments we are doing, it could have explained the differences in VDR results for those who took both Yasko and Redlabs and got different results. Guess not though.

    Thanks,
    Sushi
  17. CindyWillis

    CindyWillis Senior Member

    Messages:
    102
    Likes:
    40
    I am the one who is taking it along with my husband and we are both doing extremely well on it. I was very allergic to vitamin D and my husband wasn't. Yet, we both are doing well on it. I couldn't agree more with Lou. I think that it is important to try it and keep your vitamin D levels in right place so it doesn't stop working and see for yourself. You have nothing to lose since the side effects are minimal and you should know within 3 doses of it if it is working or not and to what degree. I am not a doctor and so I would discount what I say but it seems that Lou's comment it is the practical way to go unless you have a better therapy in mind that you would like to try that you think would be more helpful. All you lose is some time and money to take the first several doses and see if it helps or not and the opportunity costs of what else you would be trying instead.
  18. soulfeast

    soulfeast Senior Member

    Messages:
    409
    Likes:
    44
    Virginia, US
    Sorry to be so ignorant. What are considered high EBV titers? I had a count of 4000 IGG and neg IgM. Not even sure that is a titer count.. thank you...

    Is Yasko's VDR tag the same as the Redlabs BSM1?

    Thank you..

  19. guest

    guest Guest

    Messages:
    320
    Likes:
    5
    You had an IgG of 4000 and your IgM was negative? That's funny. I thought that IgM exists a life time after the first infection. Can someone pls correct that?
  20. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi Diesel,

    No, IgG exists a lifetime, where IgM is only during the acute phase of the infection, and then declines. In this regard, doctors see when you're experiencing an acute phase of the infection or not.

    Concerning the titers, it is pretty useless to compare titers from different labs, because nearly each lab has its own reference ranges.

    Besides of wishing you all a Happy New Year, with lots of positive surprises and good health in 2011, I want to pass this small message:

    Don't let a negative VDR-test result discourage you of taking Gc-Maf. I'm a low responder, and Gc-Maf is certainly doing nice things to me, I doubt this is a placebo effect. Maybe you need more injections, who knows. I already received 34 injections, but I had a huge improvement after the third injection, already. Certainly, I was not disabled like most of you here, so I don't know whether this interferes with how well Gc-Maf can work. Based on what KDM said, it doesn't, it seems.

    Again, I think my own experience is the stongest evidence there is, stronger than the VDR-test. Another personal note though, I also take milk thistle every day, and I always have the feeling it let's Gc-Maf improve better. Taking care of your liver is in overall a good thing, since many of us have disturbed liver function.

    OS.

See more popular forum discussions.

Share This Page