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Re: [GIWorld-Hepatitis] Hep C Negative? - Viral Load advice needed

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  • claudine intexas
    Hi Sara, I m sorry to hear about your mother. I know that must be very rough. However, your viral load result is very good news. If you have been undetectable
    Message 1 of 8 , Feb 12, 2003
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      Hi Sara,
      I'm sorry to hear about your mother. I know that must be very
      rough. However, your viral load result is very good news. If you have
      been undetectable (and the TMA is probably about the best, most
      sensitive test there is now) for this long then you are probably
      cured. I know, those who have been dealing with this for years find
      the word "cured" hard to believe, but there have been enough
      long-term responders to these very sensitive tests for more and more
      doctors to really believe that a cure is now possible. This virus has
      a tendency to come back FAST when there are even tiny amounts of
      virus left after treatment so the fact that you have remained
      undetectable this long is a very good sign. Celebrate!
      Claudine
      --- srw1954@... wrote:
      > Hi everyone,
      > I haven't written in anything in a while, but I keep reading your
      > posts to
      > stay "in the know". I feel for each and every one of you who are
      > having
      > problems with symptoms and side effects.
      > I'm behind in reading the posts because, very sadly to say, my
      > mother passed
      > away on Jan. 29th and I was back east with her and my family when
      > she died at
      > home and then stayed for the funeral. That's not why I'm writing
      > though.
      > I just got the results back from some blood work and need your help
      > with what
      > this all means. First, I went through combo treatment 3 years ago
      > and came
      > out with a non-detectable viral load...last tested one year ago. I
      > just
      > started with new health insurance with Kaiser HMO, and went to have
      > my viral
      > load checked again, and got a call from the doctor with the results
      > today.
      > She said I was "cured" because the very sensitive TMA test they
      > used read
      > "negative"...."you no longer have the hepatitis C virus". I told
      > her I had
      > previously used the heptimax PCR viral load test which tests viral
      > load
      > levels down to 5, and that said I was "non-detectable", because it
      > couldn't
      > read below 5 so I might still have a viral load of 0, 1, 2, 3, or
      > 4. She
      > said this test was different and it didn't show any virus.
      > Can any one explain the difference in tests? Am I really "cured"?
      > I thought
      > that was not actually possible to know? Doc, do you have any
      > advice or
      > knowledge you could share?
      > Thanks everyone,
      > Take care,
      > Sara
      >
      >
      > [Non-text portions of this message have been removed]
      >
      >


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    • srw1954@aol.com
      Alley, I appreciate your thinking of me while you re on your vacation in Holland. I hope you re having a great time. I got the printed test results in the
      Message 2 of 8 , Feb 13, 2003
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        Alley,
        I appreciate your thinking of me while you're on your vacation in Holland. I
        hope you're having a great time.
        I got the printed test results in the mail today. This is what it says word
        for word:
        ..... Hepatitis C RNA .....
        HCV Qual Post NEGATIVE [NEGATIVE]
        HCV Post Interp The test is done by TMA assay. The sensitivity of this assay
        is 5 IU/mL. "This test was developed and its performance characteristics
        determined by the Regional Laboratory. It has not been cleared or approved
        by the FDA."

        So, I get it....that since this is qualitative it doesn't count the actual
        viral load like the other PCR tests I've had done in the past, and since it's
        only shows either "positive" = above 5, or "negative" = below 5, then it
        means that I'm below 5, but it still doesn't necessarily mean I'm cured like
        the doctor said to me....I could still have a very small amount of virus, 1,
        2, 3 or 4, (and be what I call still "in remission", and so it could flare up
        again, although extremely unlikely that it will), or it could be zero (and
        it's gone completely). There still is no test out there that shows the virus
        has been totally eliminated and that the only way someone could have it again
        is by being re-exposed, not just by it flaring up.
        Did I understand and explain all that clearly and correctly?
        Doc....any thoughts on this subject?
        thanks,
        Sara

        Date: Tue, 11 Feb 2003 18:40:30 -0000
           From: "Alley <patriciajean@...>" <patriciajean@...>
        Subject: Re: Hep C Negative? - Viral Load advice needed

        Sara,

        I'm sorry to hear about your Mom.

        As for your viral load, find out what test she used and the limits
        exactly, qualitative? quantitative? etc.

        As for in general, it sounds like GREAT news!!!! Let us know what you
        find out.

        Take care

        Alley
        in Holland



        [Non-text portions of this message have been removed]
      • Doc
        Hi Sara, You are now HCV-RNA -ve , so need to read between the lines, you do not have any significant virus now, it will never give you a zero reading anyway.
        Message 3 of 8 , Feb 13, 2003
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          Hi Sara,
          You are now HCV-RNA -ve , so need to read between the lines, you do not have any significant virus now, it will never give you a zero reading anyway.
          Lets hope you stay that way for next six months , that is the most important issue.

          Best Wishes,

          Dr Sharat Misra MD,DM,FACG

          ----- Original Message -----
          From: srw1954@...


          Alley,
          I appreciate your thinking of me while you're on your vacation in Holland. I
          hope you're having a great time.
          I got the printed test results in the mail today. This is what it says word
          for word:
          ..... Hepatitis C RNA .....
          HCV Qual Post NEGATIVE [NEGATIVE]
          HCV Post Interp The test is done by TMA assay. The sensitivity of this assay
          is 5 IU/mL. "This test was developed and its performance characteristics
          determined by the Regional Laboratory. It has not been cleared or approved
          by the FDA."

          So, I get it....that since this is qualitative it doesn't count the actual
          viral load like the other PCR tests I've had done in the past, and since it's
          only shows either "positive" = above 5, or "negative" = below 5, then it
          means that I'm below 5, but it still doesn't necessarily mean I'm cured like
          the doctor said to me....I could still have a very small amount of virus, 1,
          2, 3 or 4, (and be what I call still "in remission", and so it could flare up
          again, although extremely unlikely that it will), or it could be zero (and
          it's gone completely). There still is no test out there that shows the virus
          has been totally eliminated and that the only way someone could have it again
          is by being re-exposed, not just by it flaring up.
          Did I understand and explain all that clearly and correctly?
          Doc....any thoughts on this subject?
          thanks,
          Sara

          Date: Tue, 11 Feb 2003 18:40:30 -0000
          From: "Alley <patriciajean@...>" <patriciajean@...>
          Subject: Re: Hep C Negative? - Viral Load advice needed

          Sara,

          I'm sorry to hear about your Mom.

          As for your viral load, find out what test she used and the limits
          exactly, qualitative? quantitative? etc.

          As for in general, it sounds like GREAT news!!!! Let us know what you
          find out.

          Take care

          Alley
          in Holland



          [Non-text portions of this message have been removed]


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          [Non-text portions of this message have been removed]
        • srw1954@aol.com
          Claudine....thanks much for your response and well wishes. Doc, thank you for your response too. You have confirmed what I already thought this all meant. I
          Message 4 of 8 , Feb 13, 2003
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            Claudine....thanks much for your response and well wishes.
            Doc, thank you for your response too. You have confirmed what I already
            thought this all meant. I call it and tell friends that ask about my hep
            c...."it's in remission", because they can understand that terminology. The
            don't understand "the virus is non-detectable".
            Like cancer (that I've also had), they think they got it all, and/or
            repressed the amount down to a very very small level, and hopefully it will
            not come back, but there is still the chance that some day it might.
            I went through combo tx from 10/1999 - 4/2000, and the virus went
            "non-detectable" after three months in 1/2000, and it has remained
            non-detectable ever since....three years now.
            I agree that this is very good news and cause to celebrate! I don't agree,
            however, with this new doctor at Kaiser that said I was cured and don't need
            to check it again unless I want to worry. I will have it checked every year,
            at least for the next couple years...when I hit the 5 year mark perhaps I'll
            stop or check it less often.
            I truly wish the same good news for all of you someday...hopefully sooner
            than later. You are all beautiful, caring people...and I appreciate you so
            much.
            I will continue to lurk and enjoy your fun and happy stories and feel for you
            when you have sad or painful stories, and I'll contribute when it feels
            right.
            take good care,
            Sara

            Date: Thu, 13 Feb 2003 15:47:08 +0530
               From: "Doc" <gidoc@...>
            Subject: Re: Hep C Negative? - Viral Load advice needed

            Hi Sara,
            You are now HCV-RNA -ve , so need to read between the lines, you do not have
            any significant virus now, it will never give you a zero reading anyway.
            Lets hope you stay that way for next six months , that is the most important
            issue.

            Best Wishes,

            Dr Sharat Misra MD,DM,FACG

              ----- Original Message -----
              From: srw1954@...
              Alley,
              I appreciate your thinking of me while you're on your vacation in Holland. 
            I
              hope you're having a great time.
              I got the printed test results in the mail today.  This is what it says
            word
              for word:
              ..... Hepatitis C RNA .....
              HCV Qual Post  NEGATIVE  [NEGATIVE]
              HCV Post Interp The test is done by TMA assay.  The sensitivity of this
            assay
              is 5 IU/mL.  "This test was developed and its performance characteristics
              determined by the Regional Laboratory.  It has not been cleared or approved

              by the FDA."
              So, I get it....that since this is qualitative it doesn't count the actual
              viral load like the other PCR tests I've had done in the past, and since
            it's
              only shows either "positive" = above 5, or "negative" = below 5, then it
              means that I'm below 5, but it still doesn't necessarily mean I'm cured
            like
              the doctor said to me....I could still have a very small amount of virus,
            1,
              2, 3 or 4, (and be what I call still "in remission", and so it could flare
            up
              again, although extremely unlikely that it will), or it could be zero (and
              it's gone completely).  There still is no test out there that shows the
            virus
              has been totally eliminated and that the only way someone could have it
            again
              is by being re-exposed, not just by it flaring up.
              Did I understand and explain all that clearly and correctly?
              Doc....any thoughts on this subject?
              thanks,
              Sara


            [Non-text portions of this message have been removed]
          • Suzy Balone
            Congrats Sara woo hooo for you best wishes for the rest of us also that someday they will find a cure hope everyone is doing all right, Suzy
            Message 5 of 8 , Feb 13, 2003
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              Congrats Sara
              woo hooo for you
              best wishes for the rest of us also that someday they will find a cure
              hope everyone is doing all right,
              Suzy








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            • Suzy Balone
              Sara, So sorry to hear about your mother will say some prayers for you and your family, I hope that she didn t suffer but know that she is free from all pain
              Message 6 of 8 , Feb 13, 2003
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                Sara,

                So sorry to hear about your mother will say some prayers for you and your
                family, I hope that she didn't suffer but know that she is free from all
                pain now
                Suzy


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