HiRiskRn or nurse or opinion?

Discussion in 'Fibromyalgia Main Forum' started by moewee, Oct 18, 2002.

  1. moewee

    moewee New Member

    Wanted to know your opinion since my HMO keeps slumping me from doc to doc:

    I have had high titers to CMV cytomegalovirus for over 1 year.

    Yes the IGG and the IGM are both high and keep going up and down but never to the <0.91 that they are supposed to be.
    WHICH WOULD MAKE THEM NEGATIVE.

    I have had blood and urine work ups twice with infectious disease for cultures and to see if "viral shedding" has occured. These tests come back negative.

    Why are my titers still high?(after actually a year and a half IT HAS BEEN GOING ON.)
    The ID team (joke) said it was a "cross reactivation" with something else and that "happens all the time".
    Funny how no one knew what I was cross reacting too?
    I was offered a $2000.00 round of Valganciclovir. Didnt do it yet?!
    ID infectious disease was so rude to me and said that
    I could either take it or leave it.
    I did/do have floaters and had to change all of my glasses and contacts prescriptions. Retinitis?
    I have done so much research but still dont get it. Brainfog? But am still puzzled as no one can answer my questions.

    WHY ARE MY TITERS STILL ELEVATED?
    IF NO VIRAL SHEDDING, NO VIRUS, BUT STILL IGM AND IGG HIGH WHY?
    I AM STUMPED SHOULD I ASK FOR A SECOND OPINION?
    SHOULD I TAKE THE Valganciclovir? KIDNEY DAMAGE AND BONE MARROW DAMAGE?
    THIS HAS GONE ON LONG ENOUGH AND HAVE BEEN HOUSEBOUND FOR 8 MONTHS!
    I TOOK INH FOR A +PPD AND THEN ALL THIS STARTED!

    THANKS TO ALL I NEED HELP ON THIS ONE! HELP!

    MOEWEE
  2. moewee

    moewee New Member

    Wanted to know your opinion since my HMO keeps slumping me from doc to doc:

    I have had high titers to CMV cytomegalovirus for over 1 year.

    Yes the IGG and the IGM are both high and keep going up and down but never to the <0.91 that they are supposed to be.
    WHICH WOULD MAKE THEM NEGATIVE.

    I have had blood and urine work ups twice with infectious disease for cultures and to see if "viral shedding" has occured. These tests come back negative.

    Why are my titers still high?(after actually a year and a half IT HAS BEEN GOING ON.)
    The ID team (joke) said it was a "cross reactivation" with something else and that "happens all the time".
    Funny how no one knew what I was cross reacting too?
    I was offered a $2000.00 round of Valganciclovir. Didnt do it yet?!
    ID infectious disease was so rude to me and said that
    I could either take it or leave it.
    I did/do have floaters and had to change all of my glasses and contacts prescriptions. Retinitis?
    I have done so much research but still dont get it. Brainfog? But am still puzzled as no one can answer my questions.

    WHY ARE MY TITERS STILL ELEVATED?
    IF NO VIRAL SHEDDING, NO VIRUS, BUT STILL IGM AND IGG HIGH WHY?
    I AM STUMPED SHOULD I ASK FOR A SECOND OPINION?
    SHOULD I TAKE THE Valganciclovir? KIDNEY DAMAGE AND BONE MARROW DAMAGE?
    THIS HAS GONE ON LONG ENOUGH AND HAVE BEEN HOUSEBOUND FOR 8 MONTHS!
    I TOOK INH FOR A +PPD AND THEN ALL THIS STARTED!

    THANKS TO ALL I NEED HELP ON THIS ONE! HELP!

    MOEWEE
  3. dojomo

    dojomo New Member

    But I was curious myself and did some quick checking ....I think a chronic infection can do that. I found this.:
    CMV antibody tests

    Normal Values
    People who have never been infected with CMV have no detectable antibodies to CMV.


    What Abnormal Results Mean
    A specimen with positive antibodies to CMV indicates a current or prior infection with CMV. If the titer of antibodies rises over an interval of a few weeks, this may signify the presence of an acute infection.

    Chronic CMV infection (where the antibody titer stays about the same over time) can become reactivated in a person with a suppressed immune system............



    If you are concerned about AIDS you should have it checked...but hopefully "the IDs" did that already.........Peace DJ
  4. moewee

    moewee New Member

    I have had many HIV tests and all are negative,
    I do not have active TB was only exposed and think the INH really wreaked havoc on my immune system.
    Sandy please, really would like your input as a nurse.
    I understand too that it is just your opinion and that this does not constitute for a MD or medical advice.

    What to do now?
    Seriously, I believe if I could get the CMV under control I would be ok and my CFIDS would be PVS Post Viral Syndrome.

    Please suggestions
    Do you know about the viral shedding?
    If no shedding or leucocytes in the blood showing infection then what is this? Chronic CMV ?
    And how to get rid of this?

    Thank you
    What a blessing to have this board.





  5. moewee

    moewee New Member

    Sandy,
    I said the same thing about the + ppd.
    My girlfriend also tested + but was given no treatment
    I really truly believe that the INH was what messed my
    immune system, this in turn allowed my viruses to come out and I slowly went down hill.

    Should I go for a second opinion?
    Do not think I want kidney damage or bone marrow damage from
    Valganciclovir? And from my research it doesnt always stop or decrease the CMV anyways. Just don't know what to do.
    I will wait patiently. Thank you Sandy.
    Also want to know about the viral shedding??
    And what to do to get my immune system back.
    Would growth hormone shots help?
    Am so puzzled!

    Thank you so much Sandy!

    MOWEE