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Re: [GIWorld-Hepatitis] (unknown)

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  • claudine intexas
    Dear Harriett, That is really a bummer. I m really sorry to hear about this. I am a non-responder, but I felt better too for quite a while after I stopped
    Message 1 of 26 , Dec 18, 2000
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      Dear Harriett,
      That is really a bummer. I'm really sorry to hear
      about this. I am a non-responder, but I felt better
      too for quite a while after I stopped treatment (I was
      on for 53 weeks.) In almost all cases of relapses the
      problem is in the sensitivity of the test to detect
      the virus. There is no test that will detect down to
      0. The very best test available now, which is not
      usually used, is a qualitative test that detects down
      to <5. In most tests you are considered negative or
      undetectable if it is <100, or <200, or <1000. Or
      <2000! The sensitivity of the test used to determine
      response is really important, but to save money the
      best tests are often not used. And if this particular
      virus isn't eliminated completely then as soon as
      treatment is stopped it will almost always immediately
      begin to reproduce rapidly. Another reason given is
      that while a person may test negative in blood serum,
      there may be residual amounts left in the liver, or
      even some other location, that are not detectable in
      serum. In other words, you never were completely free
      of the virus, you just had levels too low to be
      detected by whatever test your doctor ordered. There
      have been studies that went back and retested blood
      samples of responders, non-responders, and relapsers,
      with extremely sensitive tests and the results showed
      that in all the cases of responders there was no
      detectable virus, but in relapsers who had previously
      been said to be undetectable the new, more sensitive
      test showed that there was still virus there. I just
      read a study on this within the past couple of days.
      If I can refind it I'll post it.
      I will be very interested to know how your biopsy
      comes out. Let us know. Have you even had time yet to
      think about 'what next'? I was leaning towards giving
      the Roche brand of peg a try, with ribavirin, but
      after seeing results of Infergen I am considering
      that. It seems to have very good results with
      relapsers and non-responders.
      Good luck,
      Claudine



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    • Alley/Pat
      good luck Harriett! alley
      Message 2 of 26 , Dec 18, 2000
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        good luck Harriett!

        alley
      • Doc
        Hi Suzy, Read with the * ... From: Suzy Balone ... have this disease you are ... question about my biopsy It ... piece meal necrosis, mild ... Showed
        Message 3 of 26 , Mar 11 12:19 AM
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          Hi Suzy,

          Read with the *

          ----- Original Message -----
          From: "Suzy Balone"
          > Dr. Misra:
          >
          > Thank You for all your help with those of us who
          have this disease you are
          > a truly wonderful human being I have a
          question about my biopsy It
          > showed moderate chronic portal inflammation,
          piece meal necrosis, mild
          > portl fibrosis My viral count was 1323 X1000 ml.
          Showed lymphoid aggregates
          > and rare scattered councilman bodies ( which
          I have no idea what that
          > means)

          * Councilman bodies indicate that active hepatic
          necrosis has been going on.These are the dead
          liver cells being extruded from the liver.


          These I understand are reason enough to staart
          tx I do not know my
          > genotype but plan on asking the doc again to
          get that test I was dx.'ed
          > last May and those are the only results I have
          had, what is your opinion
          > Am really struggling with decision
          > Hugs
          > Suzy

          * Yes, treatment should be definitely begun, esp
          if it is for the first time.We must also know your
          AST/ALT levels and genotype.

          regards,

          Dr Sharat C Misra MD, DM
          Consultant Gastroenterologist & Hepatologist
        • jcmmo@webtv.net
          Please add Judy Moore, Sauk Rapids, MN http://community.webtv.net/jcmmo/Affirmation
          Message 4 of 26 , May 18, 2001
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            Please add
            Judy Moore, Sauk Rapids, MN


            http://community.webtv.net/jcmmo/Affirmation
          • Suzy Balone
            thanks Claudine, i do think I ate enough protein, but who knows, will get the tests back tomorrow hopefully, he did check kidneys too, glad to hear someone
            Message 5 of 26 , Dec 18, 2001
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              thanks Claudine,
              i do think I ate enough protein, but who knows, will get the tests back
              tomorrow hopefully, he did check kidneys too, glad to hear someone else has
              gotten it, I did some walking on vacation but I did not work out and so was
              out of my routine, maybe I sat around more than I thought. It is already
              going down some thank goodness, was getting rather uncomfortable. The funny
              thing is, he wrote a prescription for a diuretic and I really don't think
              I'm peeing that much more , did cut down on my water also though today,
              will keep in touch
              Thank you again
              Suzy




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            • Patricia Jean
              send me a private email with your addy and phone number and I ll package up what I ve got and send it to you. I ve got interferon also if you want it
              Message 6 of 26 , Apr 11, 2002
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                send me a private email with your addy and phone number and I'll package up
                what I've got and send it to you. I've got interferon also if you want it
              • Tatezi
                Someone does....there was a post about it in the last couple days. I don t remember who it was though so hopefully they will respond to this message. ...
                Message 7 of 26 , Apr 11, 2002
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                  Someone does....there was a post about it in the last couple days. I
                  don't remember who it was though so hopefully they will respond to this
                  message.

                  Chelle2266@... wrote:

                  > Everyone/Anyone: I am currently on treatment and have been since
                  > January. My co pay is $575 per month for the Rebetrol due to my
                  > horrible pharmacy benefit on Aetna. I was just wondering if anyone
                  > has any left over Rebetrol (I have the pills)? Thanks so much.
                  >
                  > Chelle2266@...
                  >
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                  --
                  If you talk to the animals they will talk with you and you will know
                  each other. If you do not talk to them, you will not know them, And what
                  you do not know you will fear. What one fears one destroys. ~Chief Dan
                  George~



                  [Non-text portions of this message have been removed]
                • Constance Dickson
                  I have some of both. I need to know if it the pills (Ribavarin) or the injection, (Interferon), is what you need or both. I have several, 3 mill iu s ampules
                  Message 8 of 26 , Apr 12, 2002
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                    I have some of both. I need to know if it the pills
                    (Ribavarin) or the injection, (Interferon), is what
                    you need or both. I have several, 3 mill iu's ampules
                    of the Interferon. I am not on the Peg or whatever it
                    is called.
                    Connie

                    --- Patricia Jean <patriciajean@...> wrote:
                    > send me a private email with your addy and phone
                    > number and I'll package up
                    > what I've got and send it to you. I've got
                    > interferon also if you want it
                    >
                    >


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                  • willem landstra
                    HI.Contact chelle2266@aol.com. is on the group.She might need it.I.hve already send her a month supply.William ... From: Suzy Balone To:
                    Message 9 of 26 , May 24, 2002
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                      HI.Contact chelle2266@.... is on the group.She might need it.I.hve already send her a month supply.William
                      ----- Original Message -----
                      From: Suzy Balone
                      To: GIWorld-Hepatitis@yahoogroups.com
                      Sent: Saturday, May 25, 2002 2:46 AM
                      Subject: [GIWorld-Hepatitis] (unknown)



                      Dos anyone need any ribaviran? I have 2 bottles and would gladly send them
                      to someone? I remember hearing of somewhere where you can send them , think
                      it may be on another site. If anyone knows let me know. The only thing is
                      they expire this month so would like to get them sent fast.
                      Thanks Suzy


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                      [Non-text portions of this message have been removed]
                    • Tatezi
                      Suzy... Anxiety is pretty natural in tx and I believe it is also part of the virust too. There are homeopathic anti-anxiety or calming blends and homepathy is
                      Message 10 of 26 , Jan 23, 2003
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                        Suzy...

                        Anxiety is pretty natural in tx and I believe it is also part of the virust too. There are homeopathic anti-anxiety or calming blends and homepathy is pretty safe and some things work amazingly. I go the Merz Apothecary in Chicago where there are several homepaths who own the place...they have a web site you might want to check into. This is the link to the homeopathic section of their site: http://www.smallflower.com/category.html?web_area=2&category_id=2666

                        I think, but am not sure that zanax is used pretty regularly with folks with hep c if you go the prescription route. But Claundine or someone will know better than me.

                        My choice would be acupuncture...but I believe in acupuncture for most everything so am pretty darn biased. <g>

                        Tatezi
                        ----- Original Message -----
                        From: Suzy Balone
                        To: GIWorld-Hepatitis@yahoogroups.com
                        Sent: Thursday, January 23, 2003 6:10 PM
                        Subject: [GIWorld-Hepatitis] (unknown)




                        I have been experiencing a lot of anxiety and tightness in all muscle groups
                        and clenching of my jaws, does anyone else have thiese kind of problems? do
                        not really want to take any antianxiety drugs but if it ddoesn't clear up
                        may have to. any suggestions?
                        Thanks
                        Suzy



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                        [Non-text portions of this message have been removed]
                      • Mscue40@aol.com
                        HI , I would suggest you begin the anti-anxiety right away. I used to clench my jaws and take little sighs all during the day. those are signs of stress. Your
                        Message 11 of 26 , Jan 23, 2003
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                          HI , I would suggest you begin the anti-anxiety right away.
                          I used to clench my jaws and take little sighs all during the day.
                          those are signs of stress.
                          Your fellow hepper,
                          Donna


                          [Non-text portions of this message have been removed]
                        • Tatezi
                          If you aren t going to sustain your response (you were 1b, right?), you will know when they do the one month post treatment test. If you don t sustain your
                          Message 12 of 26 , Nov 30, 2004
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                            If you aren't going to sustain your response (you were 1b, right?), you will know when they do the one month post treatment test. If you don't sustain your response, the virus replicates very fast. Hope you can sustain your response.


                            ----- Original Message -----
                            From: tammster62
                            To: GIWorld-Hepatitis@yahoogroups.com
                            Sent: Tuesday, November 30, 2004 6:23 PM
                            Subject: [GIWorld-Hepatitis] (unknown)



                            As I posted, I got the 6 month test results back showing no virus.
                            How often does the virus come back by the end of the next 6 months
                            and treatments? Six months after that?
                            <><Tammie><>





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                          • tammster62
                            Yes, I am a 1b. So, am I reading your response right? I should be virus free through treatment, but afterwards is the real test? ... you will know
                            Message 13 of 26 , Nov 30, 2004
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                              Yes, I am a 1b. So, am I reading your response right? I should be
                              virus free through treatment, but afterwards is the real test?
                              <><Tammie><>


                              --- In GIWorld-Hepatitis@yahoogroups.com, "Tatezi" <tatezi@s...>
                              wrote:
                              > If you aren't going to sustain your response (you were 1b, right?),
                              you will know when they do the one month post treatment test. If you
                              don't sustain your response, the virus replicates very fast. Hope you
                              can sustain your response.
                            • Shshonee (Alley)
                              You got your mid treatment / first 6 mo pcr right? to see if you should continue treatment the next 6 mo. You will probably get a pcr at the end of treatment
                              Message 14 of 26 , Nov 30, 2004
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                                You got your mid treatment / first 6 mo pcr right? to see if you should continue treatment the next 6 mo.

                                You will probably get a pcr at the end of treatment or close to it, then if you are clear, another pcr 6 mo or so after finishing treatment. If you are clear at the 6 mo post treatment pcr, you should stay clear quite a while.

                                I'll be keeping my fingers crossed!

                                Alley

                                [Non-text portions of this message have been removed]
                              • w.m.landstra
                                HI.In my case they took a pcr after 6 months stopping treatment,after that one more 6 months after.If that one is clear too,negative,then you.re called a
                                Message 15 of 26 , Dec 1, 2004
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                                  HI.In my case they took a pcr after 6 months stopping treatment,after that one more 6 months after.If that one is clear too,negative,then you.re called a sustained responder.


                                  [Non-text portions of this message have been removed]
                                • Tatezi
                                  Yep, afterwards is the biggie. I was undetectable at 2 months during treatment and stayed undetectable all the way through treatment. My first post lab at one
                                  Message 16 of 26 , Dec 1, 2004
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                                    Yep, afterwards is the biggie. I was undetectable at 2 months during treatment and stayed undetectable all the way through treatment. My first post lab at one month got lost so we did another one and my viral load was already up to 4milion. At 4 months post treatment, my viral load was 8million. It is so hard to eradicate the virus when you are a 1b.

                                    Keep Willem as your role model. After 3 rounds of treatment he finally has sustained his response...and it's been probably a year+.

                                    Tatezi

                                    ----- Original Message -----
                                    From: tammster62
                                    To: GIWorld-Hepatitis@yahoogroups.com
                                    Sent: Tuesday, November 30, 2004 11:24 PM
                                    Subject: [GIWorld-Hepatitis] Re: (unknown)



                                    Yes, I am a 1b. So, am I reading your response right? I should be
                                    virus free through treatment, but afterwards is the real test?
                                    <><Tammie><>



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