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    Old 01-18-2009, 05:44 AM   #1
    snowich52
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    chronic mono where to find doctor

    My daughter has chronic mono symptoms. Has tested positive several times duing flareups. Have ruled out celiac, immune deficiency, chronic fatigue, lymphoma. We've been to infect disease doc, what should we do next? CHeck for auto-immune? Where should we go? Live in Boston area. Thanks
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    Old 01-18-2009, 08:51 PM   #2
    harka
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    Re: chronic mono where to find doctor

    Chronic mono is not really a condition, and I'm wondering what the doctors were measuring when your daughter was having flareups. Her flareup symptoms must be distressing so it's important to not close your mind to possibilities of something other than the effects of mono. How old is your daughter and what are the symptoms she's having? Has she been seen in an immunodeficiency clinic to see if there is part of her immune system which is not functioning properly? Do you know which "mono test" is positive when she's having her flares?

     
    Old 03-28-2011, 03:23 PM   #3
    katyhilton
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    Re: chronic mono where to find doctor

    I have chronic ebv / cfids. I am seeing an immunologist. EBV tests negative because my immune system has failed. It no longer trying to fight it. The way they normally test for Current active EBV is by testing for new antibodies you have produced. New doc ran a test rarely done - it checks for protiens that EBV makes. I have very high levels. My body stopped making any antibodies for anything. She gave me immunizations for a few things (like tetanus) and then checked to see if my immune system responed. Nope, sure didn't. EBV is (unfortunately) causing chronic inflammitory issues that effect me neurologically... It usually attacks lymphatic system. But, it really can do whatever it wants. It chose my brain. They thought I had encephalitis first. Then Myasthenia Gravis, then neurological presentation of celiac... 16 months to find this RIGHT doctor. She is giving me glutathione ATP injections. Good luck.

     
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