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Would dr have tested for CMV in suspected mono case?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Aileen, Aug 26, 2012.

  1. Aileen

    Aileen Senior Member

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    I have read a few things recently that have me wondering if I came down with a cytomegalovirus (CMV) infection back in university. At the time, in the winter of 1986, all seemed fine until one day I suddenly could not retain any of the information I had studied the night before (mid-term exams) and the next morning when I woke up I could barely lift my head off the pillow. I thought it was probably mono as did the dr at the university clinic. The tests came back negative however. I really wasn't diagnosed with anything, just told that I had caught something that the tests weren't picking up and that it just had to run its course. I think I was given something for symptomatic relief, maybe for nausea. It was a long time ago...

    What has got me thinking about this now? I've recently read that not only does Epstein Barr Virus cause mono but CMV can cause it, or something like it, as well. Also, a recent article stated that CMV infects the cells in the nose first, and they are the cells involved with smell. I have a severe hypersensitivity to smell since coming down with ME a couple years after this mono-like event.

    That leaves with a few questions.
    1. Would a family doctor back in 1986 have tested a 22 year old for CMV in addition to EBV thinking it might be mono?
    2. If I did have CMV back then, are there any reliable tests now that can tell me if I was previously infected or if it is currently active? I'm in Ontario and I don't know what the quality of our viral testing is but I'd be willing to send it somewhere to get an accurate result.
  2. snowathlete

    snowathlete

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    In the UK fifteen years ago, and probably still now, they didn't even test for EBV. They just check white blood cells are high, examine you and send you home if they think you have it.
    I expect you would have to push hard even today to test for EBV, and only if that came back negative might they test for CMV.
    That's the UK anyway.

    If you had it then you should have antibodies. I tested neg for CMV this year and positive for EBV. Both are nasty.
  3. August59

    August59 Daughters High School Graduation

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    I was tested in 2008 at a CFS Specialty Center and EBV, CMV, HHV-6 and Lymes. That was the only pathogens I was tested for and EBV was positive for re-activated, HHV-6 was high, but CMV and Lymes was negative.

    Fifteen years ago it would be questionable if they would have performed that test.
  4. SOC

    SOC Moderator and Senior Member

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    1. Highly unlikely.
    2. Yes, there's a simple test available in the US and probably Canada too. It's the CMV IgG. It's sometimes given to pregnant women or women intending to become pregnant and work in daycare settings. CMV is easily transmitted through bodily fluids, so babies are big sources what with diapers and drooling. :p Getting CMV for the first time during pregnancy is very dangerous to the growing fetus. Sadly, I have a friend who was not tested, worked in a preschool, and got CMV during her second pregnancy. Her baby was born with multiple severe disabilities, both physical and mental -- her brain developed very abnormally, as did her legs. :(

    Since you're in Ontario, you might want to consider going to Dr Lerner in the Detroit, MI US area. He is the man for herpesvirus infections. Even if you don't continue to go to him for treatment, he probably does the best diagnosis for herpesvirus infections of any of our ME/CFS specialists. He also offers aggressive antiviral treatment if you want it (and need it, of course.)
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have cmv mono which caused the start of cfs for me. I know at the time i was neg to ebv but positive to cmv which my doc at the time said it causes a mono like condition and i would get over it, yeah right!
    My current doc tested my lymphocyte subsets and my cd8 t cells were high which can indicate cmv or ebv reactivating, others get viral titres tested. antivirals have helped me, firstly famvir which helped alot but not fully, now on valcyte which has helped alot more, when i finish valcyte i will probably stay on famvir for a few years.
    https://docs.google.com/document/pub?id=1QEmWar_CwKfWaHhpzamSWgEAjd2S44CTUTiJk9QIeY0
  6. ukxmrv

    ukxmrv Senior Member

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    Aileen, when I got sick with acute onset ME in the mid-80s I wasn't automatically tested for CMV. It wasn't until I paid for private tests that this was detected.
  7. PNR2008

    PNR2008 Senior Member

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    In 1989 Jesse Stoff did a work-up at Speciality Labs. I had CMV,EBV,HHV6 high titers. This month an immuniologist ran most of the same test still high titers but she says they are cleared infections. Why does each year prove worse then the previous one? If funds were available I'd see Dr Lerner in DTW since I'm near CLE but I blew my financial wad years ago.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    many docs think that because u dont test positive to igm titres and only igg titres that its an old infection which it probably is but they dont realise that high viral igg titres indicates it is probably reactivating causing you grieve.
    Marg likes this.
  9. Marg

    Marg Senior Member

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    What ever happened to Jesse Stoff? I thought his book was great. It was the first of many that I have read.

    When I became very sick in the 90's after the flu shot and started seeing doctors no one would test for any of the herpes viruses. I am angry about that now, EVB and HHV6 were making me very sick. I was told over and over everyone had EVB..well not with titers blown off the page. They did not hesitate to test me for AIDS though. The things we have to put up with but it is getting much better.
    ukxmrv likes this.
  10. SOC

    SOC Moderator and Senior Member

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    The real problem, imo, is that they assume we have a fully functioning immune system and don't want to hear otherwise. I once asked a GP if he would have the same reaction to my high titres if I had HIV or was a transplant patient. He said, "Of course not, they'd be very sick with those titres." :rolleyes: Good thing he wasn't the one treating me. ;)
    Marg and heapsreal like this.
  11. Aileen

    Aileen Senior Member

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    Thanks for the info everyone. Now I just have to figure out what tests to ask my doctor for. Obviously I want EBV and CMV tested for. The confusing part is what tests for those viruses will show them if they are there?

    This is Ontario, so I'll be going with the gov't funded tests first. Should I ask for IgM and IgG since it seems likely they've never been done, or just IgG? Is there another test that might be more likely to show up one of these infections if it is active/reactivated? If nothing shows there, I wonder if I should ask my doctor about nested PCR test done by Wisconsin Viral Research Group lab. They have a nested PCR test for both EBV and CMV.

    Also, I have had chickenpox so I want a VZV test done. Just an IgG for that I would think.
    Has anyone who has had the mumps had that virus reactivate? My glands are really sore lately and I am wondering about this possibility.
  12. Marg

    Marg Senior Member

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    I think the first test would be for the natural killer cells. Get all the testing you can, especially herpes viruses. I had the viral testing all at once, a lot of testing. I have read more than one CFS doc say we are all low in the natural killer cells. I never had a doctor do that until I went to Dr. Klimas. The killer cells were only working at 5%. I was put on immune modulators and they were brought up to high normal range, it took time but each test was better, now the high end of normal. There was still some activation of EVB so Acyclovir was added in May. I think that may have done the trick, feeling so much better. Now the herbals to kill the parasites, one known and one not. I feel nauseated sometimes but not bad. I wonder what came first, what took down the killer cells in the first place. That is a $64,000 question. Good luck!

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