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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Dr. Jay Levy found no XMRV in my blood

Discussion in 'XMRV Testing, Treatment and Transmission' started by mojoey, Nov 22, 2010.

  1. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    Hey Ann,

    It is a small research study (Dr. Peterson said something like 10 people) and Peterson got me in there. It was free. His experience with retroviruses and his longstanding interest in CFS makes him a prime candidate to help us figure it all out.

    He is a very private man though, described in osler's web as working with no more than 1-2 people at one time, yet doing prolific work (I.e. Discovery of HIV) despite this. I don't think he'll respond to much (if any) direct contact from patients. I tried before getting in through Pete and got no response.
  2. anncavan

    anncavan

    Messages:
    98
    Likes:
    5
    San Francisco, CA
    Thanks mojoey!
  3. Gemini

    Gemini Senior Member

    Messages:
    384
    Likes:
    230
    I've been hoping Hillary Johnson might contact him just
    to get his thoughts on XMRV. In Osler's she indicated
    he was confident CFS could be solved if people worked
    on it.
  4. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    Is Cort saying he is xmrv + and not so sick?? just asking?? really did not understand his post at the beginning of this thread. I realize he tested positive for antibodies but is he saying he feels ok?
  5. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    I do remember he does have PEM. I think I remember him posting about Pem and how he hurts after any aerobic exercise.
  6. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Hi Cort, glad you finally got your results. I am still waiting on mine. I still am not sure what result I am hoping for. I have been waiting so long that I think at this point I just want an answer. I would also like to know how you feel about the news?
  7. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC

    I'm pleased - I'm quite pleased. I'm actually having some nice improvement with my mind/body and meditation type stuff - all directed at calming my system down - but Yeah, I was jazzed to hear I had something for which, hopefully, a simple cure or fix might be available.
  8. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Never had mono and no recollection of a flu-like trigger at all. Just alot of pain and fatigue, heart pounding, very sensitive to what I ate and drank etc..got really, really skinny at one point. It was gradual but not that gradual; it happened over the last half of one semester.....then I think I went home and got better and then tanked again at some point and that was it. I had sore throats for the first 10 years and some mild swollen lymph nodes, crimson crescents but never that horrible fevery/fluey problem (thank god) except when I got too cold.
  9. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC

    No! I've had bad PEM forever it seems....and lots of other stuff -really bad MCS, muscle pains, fatigue, etc - but nothing like many people have (thankfully).
  10. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    506
    Los Angeles, CA
    Congratulations/condolences Cort. Is this the first time you've gotten word of your own test results?
  11. hensue

    hensue Senior Member

    Messages:
    269
    Likes:
    1
    Sorry did think you had all these things. I do not question that you are sick. I apologize if I offended you.
    I hope you continue to do as well as you do. Personally I think as long as you can stay active do it.
    btw Welcome to our club!
  12. X-Man

    X-Man X(MRV) Man to the rescue

    Messages:
    10
    Likes:
    0
    Midwest, USA
    Cort, I have recently tested positive w/ XMRV too. Like you, I did not have a specific flu onset. I was very functional for a long time too. My onset was very gradual. It has been a war of attrition for me & I am now moderately severe/ borderline severe & mostly housebound. Like you, I also have developed mcs & food sensitivities.

    If my wife were to be tested for XMRV, I am positive she would be positive. She also is highly functional, being able to work full time right now. And yet she is developing me/cfs. I see the signs, and they are slowly getting worse over time just like they did for me.

    So it seems that some of us are able to fight off XMRV for a long time & still be very functional.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    Hensue - no offense taken. I think its a logical question given how much I do :cool:

    Our little polls did not indicate that testing positive was correlated with severity - so I guess a wide range of 'types' have it.

    I just found out a couple of days ago. My blood had been at the WPI for so long that I just assumed it wasn't going to happen. I was part of a research study, I guess. I really appreciate them testing it - another example of the Whittemore's generosity.....

    I tested negative as everyone did, I guess, with Cooperative Diagnostics and then got this positive test at the WPI. I just hope that it all works out and everything holds up. :thumbsup:
  14. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    question

    Cort, what makes you say a simple fix or cure might be available for a retrovirus?

    thanks,
    Mark
  15. mojoey

    mojoey Senior Member

    Messages:
    1,097
    Likes:
    59
    I think simple is very relative. As other progressive diseases have shown us, nothing is really simple, and even if potential cures exist, they will almost invariably fall behind therapies that manage the disease in the pipeline. However, having any one "thing" to target is, IMO, much simpler logistically, financially, and mentally than the multivariable paradigms that ME/CFS face today. Talk to 10 different patients, and you'll probably get 10 different core therapies with 10 different ideological considerations of the disease. Talk about isolating yourself when you're already socially isolated. Even if a retrovirus is incurable, if researchers, practitioners, and patients pool their collective resources toward it, I think it's fair to say that it will make treating the illness and dealing with the consequences of the illness simpler.

    It'll be very interesting if more high-functioning patients test positive. An ongoing battle between immunity and retrovirus could possibly explain the remitting/relapsing nature that we hear about from even the most 'recovered" patients. Also, the consistency of the pos culture/neg serology and neg culture (or "long" culture)/pos serology patterns is something to keep an eye on. If the severity of illness has anything to do with this pattern, could it really be that most of us are really that severely ill in terms of this illness that we're not producing antibodies at all??? I'm hoping that WPI just looked for the wrong antibodies (per what Cort said about "good" and "bad" antibodies.)
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    435
    Raleigh, NC
    I agree with mJoey. I think relative to every other type of cure - and I guess you really can't say cure with a retrovirus - that it really is kind of simple; it's the right blend of anti-retroviral drugs - a cocktail that the medical profession should, I would think, be able at some point to come up. What's nice and simple about XMRV is that its a clear target - perhaps I'm over optimistic but with a clear target I think they can get at it.
  17. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    Thanks. Just checking to see if there was some new info on the horizon that may help.

    Hopefully suppressing the virus turns out to reverse some of the damage and can be implemented quickly with existing drugs, so we can all get our lives back.
  18. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    I have been pondering that "simple cure" idea too........I agree its sort of a relative term. I am leery though because of my MCS, I get flared up from small brief amounts of things like artesunate, valtrex, wormwood.......when an old friend of mine told me of how her interferon treatment pained her for hep c, and she had to take it for like 9 mo.s, she said it was the worst pain of her life, burning horrible much worse than childbirth, and it rendered her useless for months and months......granted she was lucky as when she was done she is fully functional now.....but she is much heartier and chemically tolerant than I......if a "simple cure" was like that for xmrv.....god help me, us.......
  19. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    506
    Los Angeles, CA
    I don't think XMRV will necessarily be "simple" to control - HIV isn't simple to control, it's very hard to control, and the drug regimes we have available now for HIV are the result of a very long hard process of experimentation and study that is still ongoing. And it's quite possible that not all the lessons of HIV are going to be applicable to XMRV/HRVs, which seem to behave quite differently from HIV in a number of important ways.

    What XMRV gives us is a TARGET - something to actually work on attacking, instead of all the vague hand-waving we've gotten so far (pre-XMRV) about mysterious malfunctions in the body that nobody can quite demonstrate a cause for. Once we've got the pathogen, we can talk business - and quit blaming the victim for having a personality problem and stubbornly refusing to get well.
  20. Navid

    Navid Senior Member

    Messages:
    409
    Likes:
    58
    Once we've got the pathogen, we can talk business - and quit blaming the victim for having a personality problem and stubbornly refusing to get well............by UT


    HALLELUJAH!!!!!!!!!!

    :peach:

See more popular forum discussions.

Share This Page