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Lessons from ME/CFS: Finding Meaning in the Suffering
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Culture Positive but Serology Negative

Discussion in 'XMRV Testing, Treatment and Transmission' started by Ronan, Nov 11, 2010.

  1. WillBeatCFS

    WillBeatCFS

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    This is off-topic but... Cloud, could you please change your avatar to one that doesn't move? My ME-brain can't read what you wrote when it's in my field of vision. I know other ME's have the same problem. Thanks.
  2. WillBeatCFS

    WillBeatCFS

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    They got my blood 9/22 and said this week that the serology should be sent to my MD end of next week (11/19?). You've got a few weeks yet. :-(
  3. JAXintheCity

    JAXintheCity

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    Philadelphia, PA
    I sent mine in October 1st.... want to know SO BADLY!!!
  4. Cloud

    Cloud Guest

    Actually, I got 5-6 PM's in just a few hours from people loving the avatar, but I agree that the animation could be too much for people here. I'm glad to change it for that reason. I'll just use freeze frame Mutley, lol.
  5. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Southeast US
    Cloud, your avatar was cute, but way too overstimulating for me, too. Thank you for for calming Mutley down for us! I had to check back on the negative serology- that comment about the percentage of false negatives was correct. I still think a serology test that picks up some XMRVs is very useful. From Cort's post on the Norwegian study:

    "Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive. Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control."

    Serology will pick up some positives in people who are sick but may not have enough retrovirus circulating in the blood for detection by PCR/culture and in healthy people who may be at risk for getting activated infection at some point in the future. If culture alone detects GRVs in about 75 out of 100 cases, and you can find another 15 or so with serology, the two together are a pretty good pair. My infectious disease doctor told me years ago that with lyme disease, the antibody detection will fluctuate- the stronger the immune system becomes, the better you make and find the antibodies.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Hi Ronan,

    My results were the same as yours. The question of the meaning of "chronic" is of course open to interpretation. For myself, I have been sick for decades but have also had good care from "alternative" MD's and I'm sure this has kept me more functional. LDN helps me a lot with function too.

    So for me, chronic means more "long-term" rather than bed-ridden, non-functional. I can't work, but I can drive, do errands and usually take care of myself.

    As I am also going to see De Meirleir at the end of January, it will be interesting to see if he proposes similar treatment plans.

    Sushi
  7. Esther12

    Esther12 Senior Member

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    While everything's so uncertain, the tests coming out with different results sounds like a bit of a worry to me, even if there are possible explanations for it. I really wish we had news from the BWG.
  8. Cloud

    Cloud Guest

    Hi Sushi, Yes your right...."Chronic" refers to duration and persistence, not severity. I'm really glad your seeing Dr Kenny. I think he's great! I look forward to your report.

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