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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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I tested Negative

Discussion in 'XMRV Testing, Treatment and Transmission' started by imready, Dec 16, 2009.

  1. KC22

    KC22 Senior Member

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    Myco..

    I have followed your posts for awhile. I have a high mycoplasma pneumonaie IGG and all the other viruses. I have been on antibiotics for 3 1/2 years including IV for 6 weeks. It was a combo of doxy and azithro. I can tolerate the doxy, but the azith., my numbers increased.

    My last appt., my numbers have come down for the first time. I am hoping for more movement on my next visit.

    My brain fog is much better, but energy and flu-like symptoms still there.

    Any ideas???
  2. dmarie4301

    dmarie4301 Guest

    From study results to real life

    I am disappointed that test results from VIP arent more in line with what they found in the "test tube". What could be the cause of this? If Klimas is saying to wait, then I will wait, but I agree with others here, that if WPI hasnt perfected the test, then they shouldnt be selling it.

    I feel like Ive had the flu for 20 years, and theyve ruled out so many other viruses....is this just another? Plus we have microbes, parasites, candida, etc. infinitum.

    So which is the culprit?? Why is the immune system broken? What caused that? HIV shows it caused immune breakdown, or so they say.

    HIV and XMRV are similar. It would make sense, but the most convincing evidence was the stats Mikovits came out with. That was really something.

    So what if other studies dont confirm?? I think they are trying to use the same blood samples as she used.

    Something is really screwy with so many people sick like this.....it cant be just stress and environmental factors causing all this......or would that be enough for us all to break down??? Are we the canaries in the coal mine, of a filthy dirty planet???

    More questions than answers at this point. I dont want to be negative, cuz then Im back to figuring out why my body is broken. Im tired of being my own guinea pig.

    Disappointment is all I feel with the results coming in. Remember, supposedly only 5% of WPI's blood tests were negative. Our stats are not supporting that. And Cooperative tests are even more questionable in my opinion. I dont think, looking back, that they had enough time to throw up a website and a test so fast. I fell for it. I dont recommend them at all. I do not trust this lab now.

    Cort, if you read this, what do you make of the poll results coming in??

    All, I can say, is Im glad I found this board....I know Im not adrift in this lifeboat alone.

    Love to all,

    Donna:confused:
  3. dmarie4301

    dmarie4301 Guest

    To Levi

    "As results here come in, its fairly certain to have the Militant Somatizer M.D.'s lurking here scrambling to lay off some of those large bets they have made."

    What do you mean by this statement above???
  4. Parismountain

    Parismountain Senior Member

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    I think

    with the link Levi provided he was talking about a blog where doctors gather and discuss this disease and finding and there are posts within that blog where they appear to be friendly betting among themselves about whether the WP Science paper will stand up.

    You can follow his link and click on the first post to read the doc blog.

    hth, happy to help or hth, hope that helps
  5. Katie

    Katie Guest


    In addition to Parismountains explanation they had also linked to Pheonix Rising in the blog and there was a huuuuge number of guests for the next twelve hours. The guy who wrote the blog hadn't actually read the Science paper so it was all a bit of a sham really, nothing to worry too much about. The bets were all macho showing off too.
  6. jackie

    jackie Senior Member

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    Hi kc22!:)...I haven't any answers for you BUT what I found fascinating was the fact that you have Viruses (me too, chronic Enteroviruses), you've been on Antibiotics for 3.5 years (I've been on Antivirals for 3.5 years) and IN PARTICULAR, your statement..."my brain fog is much better, but energy and flu-like symptoms are still there".

    As that is what I say to everyone!

    So, why just the improvement in brain fog - but NOT in the other two areas?

    Not complaining (I'm happy with ANY improvement!)....but it is interesting!:confused:

    jackie:)
  7. myco

    myco Guest

    Did you treat for Babesia? Did you treat for Bartonella? Rifampin and Zith is what cleared my head and gave me my energy back. A quinolone like pulsed factive (5 days on) is what my LLMD is using for Bart now. He is seeing no tendon problems with this new quinolone.
  8. CBS

    CBS Senior Member

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    Testing in immunocompromised patients

    Just thinking out loud here but wondering if it has crossed anyone else's mind that a number of tests are based upon an immune response (antibodies, etc.) and there is evidence pointing to immune suppression/dysfunction in a lot of us.

    When I first got sick I had lymph nodes "the size of plums" and they were full of all the markers for the parasite, toxoplasmosis. I was lucky enough to have been working at a medical center with one of the top toxoplasmosis labs in the world.

    After feeling sick for months, I was sent to the center where they drew my blood. Weeks later they called back and apologized for having mixed up my sample with another patient's (one that was serologically negative for toxo). They had never made that mistake and asked that if I could come back in to have more blood drawn, they would walk the second sample through by hand.

    Two weeks later I got a call. Please come in. No toxo antibodies what so ever and they had used every test in the lab but there on the slides from my nodes was the toxo, thumbing its nose at everyone.

    The final verdict, "we cannot reconcile the negative serology with the positive morphology that is clearly evident in the tissue from the lymph node."

    I'm still a patient of the director of that lab (Dr. Montoya) and the right now the whole toxo thing is being revisited for me but going back to the beginning, the most plausible explanation is that there was an infection but my immune response was entirely abnormal.

    Is it any wonder with our immune systems that identifying a marker has been a real challenge and that testing is often more confusing that clarifying?
  9. kurt

    kurt Senior Member

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    Myco, I am glad you benefitted from ABX. A subset of PWC does have Lyme but many PWC do not have it. I am one of the unlucky who has Lyme also. But a year on Doxy and several other ABX made me much worse. I don't think it is good to try to generalize to everyone with ME/CFS based on your experience treating Lyme. And Lyme testing is difficult and controversial, one lab, Bowen, recently lost a $30M lawsuit about their test with accusations that their test is bad and they show everyone has Lyme. I believe they are now 'Central Florida Research'. Hard to know who to believe.

    Anyway, please clarify where you think I made an 'untrue' statement about Lyme. I am a big advocate of Lyme testing and treatment. But also I read the whole research literature (as much as possible) and from Nicolson's studies it is pretty obvious that ME/CFS involves multiple co-infections, beyond just those that come with Lyme. I have mentioned one study I read some years ago that said 40% of PWC have Lyme co-infections, but that number is probably low, I realize that. Wish I could find that original study.

    However, I fully agree with your assessment of XMRV and of treatment. Just look at the survey results, they are already statistically significant (only takes seven data points, we have more now). People should look at the Berlin study, read what people here (including me) have said about the early findings of replication studies. The bias towards WPI is understandable as the CFS community really needs a 'thought leader' right now. And maybe WPI will step up to that eventually, or maybe not. I think they were totally on the right track in their May presentation. Not sure about XMRV though, waiting for the replication studies.

    I really doubt all these current test results are wrong. Maybe a few but not all, this trend we are seeing is probably reality for XMRV in CFS.

    WPI discovered XMRV in 20 lymphoma+ PWC. Then they developed biomarkers and their 'random forest' algorithm perhaps to select the 101 samples for the test from their 8,000 banked samples. I think it is VERY possible and maybe even probable that XMRV is only going to be found in PWC who match those particular biomarkers from that original subset of samples.
  10. myco

    myco Guest

    Kurt,

    I am sorry the Abx made you feel worse. I felt worse for more than a year after beginning but then made great strides in my progress. Perhaps you did not have the right LLMD? Did you take high enough doses? Bicillin works very well, as does Rifampin and Zith + Doxy. Did you treat for Babs? If you have a mycoplasma co-infection (which most of us do) a year or so of Doxy might handle it if you take 300-400mgs instead of 200mgs. Also, pulsed factive and bactrim works very well on Mycoplasma and Bartonella or BLO. I think Igenex, Stony Brook, Clongen and Fry are the only reliable labs IMHO.

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