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Re: [GIWorld-Hepatitis] Another question

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  • Carol
    Thanks Connie....I was just getting so disgusted with Canada and the fact that they haven t even done a biopsy on a friend who s had HCV for 30 years. I was
    Message 1 of 22 , Sep 1, 2001
      Thanks Connie....I was just getting so disgusted with Canada and the fact that
      they haven't even done a biopsy on a friend who's had HCV for 30 years. I was
      being sarcastic me thinks lol. I know about the class action suit for anyone
      infected through blood banks. What I didn't know, was that Canada bought blood
      from USA. Since blood donations here are not for monetary reward but strictly
      from compassion I guess a lot of people fell under the false impression that
      the blood was safer. Of course it isn't if it's not screened.

      Carol

      Constance Dickson wrote:

      > They have heard of it Carol, they have had a class
      > action suit against Blood Banks there......13 Million?
      >
      > Come on guys if I am stating the wrong thing, TC...C
      >
      > -- Carol <csean@...> wrote:
      > > Hi Alley....I hope this becomes available in Canada
      > > soon
      >
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    • AVansi7465@aol.com
      Dear Carol, Please be advised that when Bill Clinton was governor of the state of Arkansas, he sold blood to Canada. This blood came from prisoners in the
      Message 2 of 22 , Sep 1, 2001
        Dear Carol,
        Please be advised that when Bill Clinton was governor of the state of
        Arkansas, he sold blood to Canada. This blood came from prisoners in the
        state prison. No tessts for HCV or HIV were preformed beforehand. There has
        been a book written about this. I don't have all the literature, but it was
        my understanding that Cananda had sued him and the state of Arkansas. You
        might want to check into this. When I finish up with my own mess, I will
        help you. Right now, I can't.
        LOL,
        Anne


        [Non-text portions of this message have been removed]
      • Carol
        Thanks Anne....but I wasn t infected through a blood transfusion so I m not in the litigation process, thank God....I don t think I could handle that right
        Message 3 of 22 , Sep 1, 2001
          Thanks Anne....but I wasn't infected through a blood transfusion so I'm not in
          the litigation process, thank God....I don't think I could handle that right
          now. I was simply interested in the fact that it happened. I was quite
          shocked. I think if there was more publicity over this a lot of Canadians would
          be up in arms, so to speak.

          Thanks anyway Anne
          Happy moving
          Carol

          AVansi7465@... wrote:

          > Dear Carol,
          > Please be advised that when Bill Clinton was governor of the state of
          > Arkansas, he sold blood to Canada. This blood came from prisoners in the
          > state prison. No tessts for HCV or HIV were preformed beforehand. There has
          > been a book written about this. I don't have all the literature, but it was
          > my understanding that Cananda had sued him and the state of Arkansas. You
          > might want to check into this. When I finish up with my own mess, I will
          > help you. Right now, I can't.
          > LOL,
          > Anne
          >
          > [Non-text portions of this message have been removed]
          >
          >
          > Welcome to GIHepWorld
          >
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        • runabout_104
          If your enzymes are coming down is there a good chance that your viral load is too? Or is that a whole different ball game? Also, someone asked me the other dy
          Message 4 of 22 , Feb 21, 2002
            If your enzymes are coming down is there a good chance that your
            viral load is too? Or is that a whole different ball game? Also,
            someone asked me the other dy if interferon is given to people with
            cirochiss. No virus just cirochiss. I didn't think it ws given for
            that but I don't want to be giving out any wrong information. If a
            person that has severe cirochiss and stops the offending behavior
            (alcohol) will the liver start to heal or is it too late. Someone I
            know stopped drinking 3 months ago and then built up very badly with
            fluid--since she hs stopped the offending behaviour will the liver
            start to rejuvinate itself at all??
            cher
          • Patricia Jean
            liver enzymes and liver damage don t always match up, and especially with viral load. My liver enyzmes are normal, my viral load is 850,000 IU, and I have
            Message 5 of 22 , Feb 21, 2002
              liver enzymes and liver damage don't "always" match up, and especially with
              viral load.

              My liver enyzmes are normal, my viral load is >850,000 IU, and I have mild
              liver damage. So altho they can be indicators of a problem happening, if the
              enzymes aren't up, doesn't mean nothing is happening. Hope that makes sense.

              Good questions about the cirrhosis. But I don't know I'll let someone else
              answer that one :)

              alley
            • Edie
              Cher, Before I started treatment, my liver enzymes bounced around like crazy. They went up and down like a roller coaster. Then, as treatment went on and on,
              Message 6 of 22 , Feb 21, 2002
                Cher,

                Before I started treatment, my liver enzymes bounced around like crazy.
                They went up and down like a roller coaster. Then, as treatment went on and
                on, my doctor noticed that my enzymes pretty much started to stay level. He
                remarked this to me at about week 18.

                He told me it was a good sign.

                Then, at week 24, I found out my viral load was undetectable!

                I don't know if there is a correlation here. This is just my experience. I
                had very minimal liver damage to start with. I am a 1a that started with
                3.2 million copies. Also, in week 48, my enzymes are still staying in the
                20-30 range.

                Edie
                Week 48 of Combo

                ----- Original Message -----
                From: "runabout_104" <runabout104@...>
                To: <GIWorld-Hepatitis@yahoogroups.com>
                Sent: Thursday, February 21, 2002 8:19 AM
                Subject: [GIWorld-Hepatitis] Another question


                > If your enzymes are coming down is there a good chance that your
                > viral load is too? Or is that a whole different ball game? Also,
                > someone asked me the other dy if interferon is given to people with
                > cirochiss. No virus just cirochiss. I didn't think it ws given for
                > that but I don't want to be giving out any wrong information. If a
                > person that has severe cirochiss and stops the offending behavior
                > (alcohol) will the liver start to heal or is it too late. Someone I
                > know stopped drinking 3 months ago and then built up very badly with
                > fluid--since she hs stopped the offending behaviour will the liver
                > start to rejuvinate itself at all??
                > cher
                >
                >
                >
                > Welcome to GIHepWorld
                >
                > Post message: GIWorld-Hepatitis@yahoogroups.com
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                > URL to this page: http://groups.yahoo.com/group/GIWorld-Hepatitis
                >
                >
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                >
                >
              • runabout_104
                Like I posted before, I am almost done with recommended treatment of 6 month course for genotype 2b w/cirochiss. I ws just wondering if u r still experiencing
                Message 7 of 22 , Apr 6, 2002
                  Like I posted before, I am almost done with recommended treatment of
                  6 month course for genotype 2b w/cirochiss. I ws just wondering if u
                  r still experiencing symptons of hep, I guess that means the viral
                  load and virus is still there and the chance of reaching undetectable
                  would not be good. Symptons i am talking about are still dark urine.
                  However, if i drink a glass of water, it goes normal. Also, I hv had
                  the red palms (which is also a symton of hep) for years and years and
                  that is still there. My eyes are not yellow nor my skin, but eyes
                  look cloudy. So, i see symptons of hep still lurking around so this
                  can't be good if i am physically seeing this, right??? Also, i
                  thought there ws suppose to be a viral load done @ 12 weeks and here
                  I am almost finished and I hvn't had one done and only hv had 2 liver
                  tests that tells about the enzymes alt and ast and both of them were
                  normal. The first one ws done @ 7 weeks into treatment and they were
                  normal and the second one the enzymes were even lower, but I guess
                  one doesn't hv anything to do with the other. Just because u hv
                  normal enzymes doesn't necessarily mean the viral load is coming
                  down, right. I know I sound and I am getting really anxious right now
                  and a little scared because if the dr won't extend the course of
                  treatment for me, this is it for me and I am coming down to the wire
                  now. So if anyone hs any responses for me and and all r appreciated.
                  This group hs been so helpful to me and u hv always been there for me
                  and I very much appreciate this.
                  cher
                • Doc
                  It is important to know your HCV viral load after end of treatment. That holds the key to further outcome. Dr Sharat Misra MD,DM,FACG Like I posted before, I
                  Message 8 of 22 , Apr 6, 2002
                    It is important to know your HCV viral load after end of treatment. That holds the key to further outcome.

                    Dr Sharat Misra MD,DM,FACG





                    Like I posted before, I am almost done with recommended treatment of
                    6 month course for genotype 2b w/cirochiss. I ws just wondering if u
                    r still experiencing symptons of hep, I guess that means the viral
                    load and virus is still there and the chance of reaching undetectable
                    would not be good. Symptons i am talking about are still dark urine.
                    However, if i drink a glass of water, it goes normal. Also, I hv had
                    the red palms (which is also a symton of hep) for years and years and
                    that is still there. My eyes are not yellow nor my skin, but eyes
                    look cloudy. So, i see symptons of hep still lurking around so this
                    can't be good if i am physically seeing this, right??? Also, i
                    thought there ws suppose to be a viral load done @ 12 weeks and here
                    I am almost finished and I hvn't had one done and only hv had 2 liver
                    tests that tells about the enzymes alt and ast and both of them were
                    normal. The first one ws done @ 7 weeks into treatment and they were
                    normal and the second one the enzymes were even lower, but I guess
                    one doesn't hv anything to do with the other. Just because u hv
                    normal enzymes doesn't necessarily mean the viral load is coming
                    down, right. I know I sound and I am getting really anxious right now
                    and a little scared because if the dr won't extend the course of
                    treatment for me, this is it for me and I am coming down to the wire
                    now. So if anyone hs any responses for me and and all r appreciated.
                    This group hs been so helpful to me and u hv always been there for me
                    and I very much appreciate this.
                    cher





                    [Non-text portions of this message have been removed]
                  • Mzgee1@aol.com
                    Cher, I am a 2b too. I didn t go undectable until my 9th month of treatment! I had stage II fibrosis, normal enzymes. My starting viral load was greater than
                    Message 9 of 22 , Apr 7, 2002
                      Cher, I am a 2b too. I didn't go undectable until my 9th month of treatment!
                      I had stage II fibrosis, normal enzymes. My starting viral load was greater
                      than 5 million copies. I was kept on treatment for 13 months and as of Feb.
                      I have remained undectable. I too developed hemolytic anemia and had weekly
                      labs for all 13 months. Couldn't take full dose of the Riba. Anyway, ur doc
                      should keep u on longer if u haven't gone undectable yet. It just may take u
                      a little longer like it did me. Best of luck, hang in there. This too shall
                      pass! lvoe, mzgee


                      [Non-text portions of this message have been removed]
                    • runabout_104
                      Also, I hv heard a lot of people talk abut the coQ10 for energy. Does it work and is it also liver friendly. I know it is also a little on the expensive side
                      Message 10 of 22 , Jun 6, 2002
                        Also, I hv heard a lot of people talk abut the coQ10 for energy. Does
                        it work and is it also liver friendly. I know it is also a little on
                        the expensive side but if it works it wd be worth it. Also, I need to
                        find a GOOD multi-vitimin and a GOOD calcium vitamin and i get so
                        confused when i go to the vitamin section and look as i don't want to
                        get anything that will "hurt" me. Also, is it good for us to drink
                        those ensure drinks if we feel we r not getting enough of whatever in
                        our diets. My diet hs been the most hardest to change and i just
                        can't seem to do. Old habits die hard. I don't even know how to cook
                        anymore with this stuff, although my GI did say for right now, eat
                        whatever I want, but i kind of doubt this. Same as the nurse at the
                        begining when i asked when i ws first put on treatment if there
                        should be some special diet to follow or certain things to eat and
                        not eat and ws told "NO, u either make it or u don't". Dr's
                        especially in these rural areas (and prob other places too, but more
                        so in the rural areas) had better get a grip on this and do it fast.
                        One girl ws turned down @ my dr.'s office when they asked what kind
                        of medication she ws on and she ws honest and told them everything
                        including methadone and ws tld it ws his policy not to treat anyone
                        on methadone. I am being treated so isn't that on the discrimination
                        side. I ws prob the first he had seen though and it hs never been an
                        issue and it hs never come up except the one time he asked in his
                        office what meds i ws on. Now, he is hving his receptionist ask when
                        people call for appts. What's up with that??? I hv read a few studies
                        on methadone treated patients vs patients receiving treatment without
                        methadone and as far as out come of result there weren't any unless
                        the person continued to use drugs while on treatment, but looks to me
                        that would be easy enough to find out thru tox screens or whatever. I
                        hv given my gastro permission to talk to the clinic i go to and vice
                        versa so it wd be easy enough to check out and my friend wuld also hv
                        signed the releases. Does anyone know if Shering and Plough can do
                        sonething about this or do they care?? Just a thought???? Now my
                        friend doesn't know what to do and she is discourged and afraid of
                        being honest the next time for fear of not being seen or even
                        treated. I also don't feel it is right that a receptionist hs the
                        right to ask these medical questions over the phone. Wdn't that also
                        be a confidential issue. Lots to think of..Any info appreciated.
                      • Patricia Jean
                        From what I ve read, most people on methadone and with HCV do not get to do treatment while on meth. Treatment could cause them to return to the drugs they
                        Message 11 of 22 , Jun 6, 2002
                          From what I've read, most people on methadone and with HCV do not get to do treatment while on meth. Treatment could cause them to return to the drugs they are trying to get off of. I had mild sides while on combo, but still I kept my Vicodin and other pain meds handy and did need them from time to time.

                          I'm sure the doc is more concerned with causing more problems than anything for people who are on methadone. If he allowed them to do treatment while on meth and something happened, like they returned to their illegal drug use or killed themselves from depression, etc., then the doctor could be held liable. I don't know the details but that is my impression.

                          I have talked to a few alcoholics who were sober several years and the treatment screwed up their brain and they went back to drinking. It's not that the treatment is so bad in itself, but it can screw with the body and mind enough to make someone who is already battling past problems like addiction return to their old lifestyle. It kind of unbalances ya when what the person might need is a sort of balance and control.

                          If you are on methadone and doing treatment, then I have to assume that your doc feels comfortable with that and knows what's going on. Or, do you think he made a mistake putting you on methadone and now is making sure he doesn't do it again? It's really uncommon for someone on meth to do treatment. I sure as hell wouldn't want to do that.

                          I don't know why a receptionist would ask if they were on methadone on the phone. I think that may constitute an ethical issue and maybe needs to be addressed with the doctor. It could just be a misunderstanding.

                          When I have gone to ER for migraines I've had a couple of nurses ask me how I got hcv and I say 2 c sections and rho gam shots, take yer pick. But they definitely look at me like I'm a druggie. I try to remind myself they are just working people and have the wrong information and I feel it's my duty to share the info on hep c when I can.

                          So maybe you should discuss that with your doctor. See why he is doing something a particular way. He may have some reasons we can't see.

                          alley

                          [Non-text portions of this message have been removed]
                        • claudine intexas
                          Ask a 100 people about the right diet and you will get a 100 different answers. So - here s mine! I don t think there is any magic diet, or one that is the
                          Message 12 of 22 , Jun 6, 2002
                            Ask a 100 people about the 'right' diet and you will get a 100
                            different answers. So - here's mine!

                            I don't think there is any 'magic' diet, or one that is the 'right'
                            one for everyone. Everybody is different. I think the most important
                            thing is to eat a low fat, well balanced diet, and don't eat any
                            iron-fortified foods. (That is mostly processed breakfast cereals).
                            Try to eat a variety of foods. Remember those 'food groups' you
                            learned about in school? I think that is still the most important
                            guide line. Lean meats, chicken, eggs, or other protein sources;
                            whole grain breads and cereals, vegetables, low-fat or skim milk,
                            cheese, yogurt, lots of veggies and fruits - the fresher the better.
                            And start with what you like! If you try to make a bunch of drastic
                            changes you probably won't stick with it. Those nutritional
                            supplement drinks are ok, just read the labels before buying. Some
                            have a higher iron count than others, and go with low-fat. Also,
                            drink lots of water.
                            C



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                          • runabout_104
                            I hv a question regarding a person I hv not met yet, but hs hep C and I was asked to talk to him in regards to hepatitis since I had been on treatment, he hd
                            Message 13 of 22 , Aug 24, 2002
                              I hv a question regarding a person I hv not met yet, but hs hep C and
                              I was asked to talk to him in regards to hepatitis since I had been
                              on treatment, he hd no where to turn or no one to ask questions of.
                              Anyway, the only info I hv @ the moment is that the dr. he is seeing
                              right now won't treat him because he hs cirochiss. I too, hv
                              cirrochis. Can someone give me some info regarding y he won't be
                              treated or direct me to some sites for info. Could it be he hs found
                              a dr that is from the "old school" and thinks cirochiss is "the
                              end".The dr that ws treating me made the remark that he recommended
                              treatment, at least I wd be doing something towards it. What kind of
                              statement is that anyway??? I just don't get it. Anyay, any info that
                              u can give me to help this guy or sites u can direct me to that I can
                              get some info that this guy can take to his dr, I wd appreciate it,
                              if anyone hs time. Thanks
                              cher
                            • claudine intexas
                              Treating a person with cirrhosis is considered to be strictly up to the doctor and each person should be individually evaluated. Some doctors just won t
                              Message 14 of 22 , Aug 24, 2002
                                Treating a person with cirrhosis is considered to be strictly up to
                                the doctor and each person should be individually evaluated. Some
                                doctors just won't consider it however. It could be he has a doctor
                                who just doesn't want to treat him, or feels like his cirrhosis is so
                                advanced that it would be dangerous. However, some doctors will even
                                cautiously treat people in liver failure while on a transplant
                                waiting list. It is really at the doctor's discretion. If he has
                                early cirrhosis he should definitely be on treatment unless he has
                                other health conditions you don't know about. He should probably get
                                a second opinion. If his cirrhosis is really very advanced it is true
                                that treatment is much more risky. (Of course, so is doing nothing.)
                                If it were me I would definitely be looking for another doctor.
                                Claudine
                                --- runabout_104 <runabout104@...> wrote:
                                > I hv a question regarding a person I hv not met yet, but hs hep C
                                > and
                                > I was asked to talk to him in regards to hepatitis since I had been
                                >
                                > on treatment, he hd no where to turn or no one to ask questions of.
                                >
                                > Anyway, the only info I hv @ the moment is that the dr. he is
                                > seeing
                                > right now won't treat him because he hs cirochiss. I too, hv
                                > cirrochis. Can someone give me some info regarding y he won't be
                                > treated or direct me to some sites for info. Could it be he hs
                                > found
                                > a dr that is from the "old school" and thinks cirochiss is "the
                                > end".The dr that ws treating me made the remark that he recommended
                                >
                                > treatment, at least I wd be doing something towards it. What kind
                                > of
                                > statement is that anyway??? I just don't get it. Anyay, any info
                                > that
                                > u can give me to help this guy or sites u can direct me to that I
                                > can
                                > get some info that this guy can take to his dr, I wd appreciate it,
                                >
                                > if anyone hs time. Thanks
                                > cher
                                >
                                >


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