XMRV- still hope

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Feb 26, 2010.

  1. ladybugmandy

    ladybugmandy Member

    gracenote posted this on phoenix rising. i hope she doesnt mind me posting it here. it gave me hope.


    "Here are some thoughts that Dr. Mikovitz communicated to a source which I have paraphrased. This is third hand information. (Obviously, this does not carry the weight of “Dr. Mikovitz said,” but I believe it to be an accurate reflection of her current thinking.) I have permission to post.

    It is becoming more apparent that the virus in not being found in large numbers in the blood.

    There have been over 300 verified positives so far.

    The virus has been isolated from over 90% of the (antibody) serology positives.

    When one person who was serology positive, but without detectable virus, was retested when symptoms were acute, the virus was then isolated.

    It may be possible for some to develop antibodies after only being exposed to viral fragments, yet remain uninfected. (This is basically how a vaccine would work.) This could explain how some of the healthy population is positive.

    Some who were expected to be positive have tested negative. Perhaps those who are the least sick and the most sick may not have free antibodies because it is bound in immune complexes.

    It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection."
  2. AllWXRider

    AllWXRider New Member

    Lyme, too, can hide inside the cells. It can be teased out of the cells using certain anti-biotics. It also comes out of cells to reproduce.

    I am part of a pilot study for HERV-18 and CFS. I don't have my results yet. It's another retrovirus.

    Viruses are never erradicated, but will go dormant (asleep). We store a copy of them in our spleen and spinal column so that our immune system "remembers" how to fight the infection next time.
  3. victoria

    victoria New Member

    so true. I don't believe that if one's been infected with Lyme or other co-infections, or other stypes of stealth pathogens, viral, retroviral or bacterial, you ever really get rid of it. You just keep it in submission.

    The one recurring theme with the 'replication' tests so far seems to be that they do NOT do exactly what the WPI did. That is a glaring flaw - I don't know how they get funding to 'replicate' when they're really not replicating the studies.

    Wait, no, I do... there are vested interests in proving there is no XMRV no matter what in those places that want CBT to be "the" treatment.

    So sad these days one has to be paranoid and always have to 'follow the money'....

    I have hope too, LadybugMandy! I think there's a good chance it's involved with a lot of chronic conditions/infections, including Lyme . . .

    all the best,

  4. AllWXRider

    AllWXRider New Member

    Just a theory, but it follows your logic:
    There is a vested financial interest in XMRV being the root cause of CFS. there is great pride in any researcher who gets their research published.

    I think that CFS/FM has many root causes and for some of us, multiple causes. It seems to always involve infections...so a strong immune system, one not pollluted by environmental toxins and toxic metals is the largest factor in getting well. It answers the dillema of how most spouses don't CFS, but obviously get exposed to the infection.

    Mine involves infections but I did have high levels of mercury and lead. These are now out, but I couldn't get 100% well. Now I found out that I have Sleep Apnea which is listed by the Mayo Clinic as causing Chronic Fatigue. I snore but my wife never heard me stop breathing. During a sleep study, I had 40 apnea events during REM sleep.

    Women and even children can have sleep apnea.
  5. victoria

    victoria New Member

    Of course it can go both ways, I seem to remember some assoc. for CFIDS giving deMerlier $ that was donated... that they claim he used for research which he then patented under his name.... not sure what the outcome of it was tho, as I didn't follow it.

    Greed and money are all too often in the forefront with many, which I find so sad... yet I know it drives the research.

    There is so much more money backing the "CBT answer" to CF/FM/ME in the UK and trying to come across the Atlantic, however... that is why especially it's important to scrutinize these so-called 'replication' studies, regardless. I am very happy the CDC has replaced Reeves too, as we all should be.

    I also agree XMRV will not prove to be 'it' for all of us, and therein lays the basis for the constant bickering that I see about what is THE 'true' CFIDS (or Fibro).

    "It' for many have turned out to be Lyme, Mycoplasma, etc.... heavy metals indeed play a role, as do food allergies/sensitivities, sleep problems, etc. Tho some are thinking that XMRV may have some play in keeping these infections chronic. There seems to be many things that culminate in the symptoms of post-exertional malaise, brain fog, etc.

    Or it could just be genetic susceptibility that makes whatever thing(s) causing our problems chronic.

    (ie, I was just reading about H. Pylori. As you likely know, many have high counts of it who do not have ulcers, and it's been documented in the human body for thousands of years. And that there are many 'pathogens' that our body keeps under control and that play important roles within our bodies. Recent studies show increasingly kids hardly have any h. pylori anymore - correlating to increased problems with asthma and other problems. My DH has 6X 'normal' amount with no ulcer, while I have less than 'normal' and have an ulcer.... My DH has always turned out to be way worse than me on most any test yet can run rings around me despite 80+ awakenings/night....)

    in other words, I'm not disagreeing, but always looking for answers for many/most of us. Doubt it will ever be 'all' of us.

    [This Message was Edited on 02/28/2010]