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Re: [GIWorld-Hepatitis] I start Tx next month :)

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  • Suzy Balone
    Gina, Three x a week dosing will prob be fine, thats what im doing and i am a 1b which is hard to get rid of but am undectable as of 3 months, my doc only
    Message 1 of 25 , Aug 2, 2000
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      Gina,

      Three x a week dosing will prob be fine, thats what im doing and i am a 1b
      which is hard to get rid of but am undectable as of 3 months, my doc only
      was going to do 6 months also so who knows i have 1 montha to go will have
      to try and figure it out.

      Nancy



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    • Ken & Pat @home
      I ve never heard of a genotype 1b going 6months ever. Have yall? ones must go neg by 6th month is what I ve heard and must do treatment for a year total. Am I
      Message 2 of 25 , Aug 3, 2000
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        I've never heard of a genotype 1b going 6months ever. Have yall? ones must
        go neg by 6th month is what I've heard and must do treatment for a year
        total. Am I getting behind the times?
        alley/Patricia
        ICQ 12631861
        alleypat@...
        http://www.flash.net/~alleypat
      • claudine intexas
        Dear Alley, I have read in some recent report the recommendation that 1 s with low pre-treatment viral loads may only need 6 months of treatment. I find this
        Message 3 of 25 , Aug 3, 2000
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          Dear Alley,
          I have read in some recent report the
          recommendation that 1's with low pre-treatment viral
          loads may only need 6 months of treatment. I find
          this completely unbelievable myself, especially a 1b.
          Even the 2's and 3's relapse frequently! My theory is
          that whoever is recommending this must be on
          Schering's payroll. Just think how much more money
          they can make if they can just keep selling us
          medications over and over again! (I was joking when I
          wrote that, but it does make you wonder!!)
          Claudine

          --- "Ken & Pat @home" <alleypat@...> wrote:
          > I've never heard of a genotype 1b going 6months
          > ever. Have yall? ones must
          > go neg by 6th month is what I've heard and must do
          > treatment for a year
          > total. Am I getting behind the times?



          =====
          Claudine
          claudinecrews@...

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        • Marjorie Delese
          my husband is genotype 1a and his dr. Kim Gentry in Arlington took him off combo after six months. Marjorie ... From: Ken & Pat @home To:
          Message 4 of 25 , Aug 4, 2000
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            my husband is genotype 1a and his dr. Kim Gentry in Arlington took him
            off combo after six months. Marjorie
            ----- Original Message -----
            From: Ken & Pat @home <alleypat@...>
            To: <GIWorld-Hepatitis@egroups.com>
            Sent: Thursday, August 03, 2000 8:06 PM
            Subject: Re: [GIWorld-Hepatitis] I start Tx next month :)


            > I've never heard of a genotype 1b going 6months ever. Have yall?
            ones must
            > go neg by 6th month is what I've heard and must do treatment for a
            year
            > total. Am I getting behind the times?
            > alley/Patricia
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            > http://www.flash.net/~alleypat
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          • ld1961@aol.com
            Hello, I just got my sons genotype back...1a...viral load 865,000 Hes had hep c since a child (hes now 18) Its a long complicated story but he contracted that
            Message 5 of 25 , Aug 4, 2000
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              Hello,
              I just got my sons genotype back...1a...viral load 865,000
              Hes had hep c since a child (hes now 18) Its a long complicated story but he
              contracted that e coli 0157H7 bacteria at age 6 and developed hemolytic
              uremic syndrome. He required multiple transfusions and thats how he
              contracted hep C..Hes had the virus for 13 yrs...Biopsy, stage 2, mild
              inflamation, some fibrosis, no necrosis or cirrhosis...NOw the dilema is to
              treat or not to treat?

              any feedback?

              Linda in Newport RI
            • claudine intexas
              ... virus for 13 ... Dear Linda, You asked for feedback, all I can really say is what I would do if I were in your situation: Since it will not be too long
              Message 6 of 25 , Aug 4, 2000
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                --- ld1961@... wrote:
                > Hello,
                > I just got my sons genotype back...1a...viral load
                > 865,000
                > Hes had hep c since a child (hes now 18) Hes had the
                virus for 13
                > yrs...Biopsy, stage 2, mild
                > inflamation, some fibrosis, no necrosis or
                > cirrhosis...NOw the dilema is to
                > treat or not to treat?
                > Linda in Newport RI

                Dear Linda,
                You asked for feedback, all I can really say is
                what I would do if I were in your situation: Since it
                will not be too long before the pegylated interferon
                is out I would wait for that, along with the
                ribavirin. My estimate would be 8 - 15 months, maybe
                even less. It is expected that the Peg-Intron will be
                approved first, without ribavirin, within 4 months,
                but approval with ribavirin should occur fairly soon
                thereafter. If his doctor will prescribe ribavirin
                sooner, go for it! Genotype 1a can be difficult to get
                rid of, and the pegylated has much better results than
                the regular std. combo available now. He would just
                have a much better chance of achieving a sustained
                response with the pegylated. However, I would not
                wait too long. He has had HCV for only 13 years and
                already has stage 2 fibrosis, so it is progressing
                fairly fast (for HCV, that is.) I have heard that is
                fairly common in transfusion acquired HCV. Please
                keep in mind, this is only my opinion, just one
                viewpoint to consider. Whatever yall decide, good
                luck!
                Claudine



                =====
                Claudine
                claudinecrews@...

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              • ld1961@aol.com
                Dear claudine, Thank you for the advice. I feel the same way, wait for new treatment. Hes disabled and gone through so much, I cant see putting him through
                Message 7 of 25 , Aug 4, 2000
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                  Dear claudine,
                  Thank you for the advice. I feel the same way, wait for new treatment.
                  Hes disabled and gone through so much, I cant see putting him through the
                  nasty treatment knowing his chances of being a responder are slim...
                  MAybe the gov will finally put some money into this virus and find better
                  treatments soon...
                  Thanks
                  Linda
                • Ken & Pat @home
                  Marjorie (forgive me but I ve forgotten already ahha) so he was pcr neg at 6months and a genotype 1a? how long has he been off treatment and is he still pcr
                  Message 8 of 25 , Aug 4, 2000
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                    Marjorie (forgive me but I've forgotten already ahha) so he was pcr neg at
                    6months and a genotype 1a? how long has he been off treatment and is he
                    still pcr neg?
                    alley/Patricia
                    ICQ 12631861
                    alleypat@...
                    http://www.flash.net/~alleypat
                  • Ken & Pat @home
                    The younger the person they say the better overall response to treatment. Maybe he will be like me and feel so much better on treatment than he did before :)
                    Message 9 of 25 , Aug 4, 2000
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                      The younger the person they say the better overall response to treatment.
                      Maybe he will be like me and feel so much better on treatment than he did
                      before :) Good luck let us know what happens.
                      alley/Patricia
                      ICQ 12631861
                      alleypat@...
                      http://www.flash.net/~alleypat
                    • Doc
                      Treatment is a must. Dr Sharat C Misra MD, DM ... From: ld1961@aol.com To: GIWorld-Hepatitis@egroups.com Sent: Friday, August 04, 2000 7:09 PM Subject: Re:
                      Message 10 of 25 , Aug 5, 2000
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                        Treatment is a must.

                        Dr Sharat C Misra MD, DM



                        ----- Original Message -----
                        From: ld1961@...
                        To: GIWorld-Hepatitis@egroups.com
                        Sent: Friday, August 04, 2000 7:09 PM
                        Subject: Re: [GIWorld-Hepatitis] I start Tx next month :)


                        Hello,
                        I just got my sons genotype back...1a...viral load 865,000
                        Hes had hep c since a child (hes now 18) Its a long complicated story but he
                        contracted that e coli 0157H7 bacteria at age 6 and developed hemolytic
                        uremic syndrome. He required multiple transfusions and thats how he
                        contracted hep C..Hes had the virus for 13 yrs...Biopsy, stage 2, mild
                        inflamation, some fibrosis, no necrosis or cirrhosis...NOw the dilema is to
                        treat or not to treat?

                        any feedback?

                        Linda in Newport RI




                        [Non-text portions of this message have been removed]
                      • LenitaL@aol.com
                        Hello everyone: I had my esophagoscopy/gastroscopy on Friday the 4th. It turns out I do have Varices. The doctor also mentioned he did the procedure because I
                        Message 11 of 25 , Aug 5, 2000
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                          Hello everyone:
                          I had my esophagoscopy/gastroscopy on Friday the 4th. It turns out I do have
                          Varices. The doctor also mentioned he did the procedure because I have
                          extensive Liver Damage. I saw some of the pictures and those varices look big
                          to me but I don't know how bad this is considered. The Doc put me on a
                          medication called Propranolol HCL 10 mg. I am to take one every 12 hrs. for
                          two weeks and then he wants to see me to monitor my blood pressure because
                          this medication tends to lower blood pressure and this is one of the normal
                          parts of me, I usually do not have high BP. So now the only thing I need is
                          to push for getting treated. I need to contact the Commitment to care program
                          at Schering-Plow I can't afford the medication for treatment. Being 3A I
                          guess I need it badly. Thanks to everyone for being there and being so
                          supportive. Gee that medication I'm on sure keeps me feeling drowsy. I was
                          warned. Thanks again everyone.

                          Sincerely,

                          MEL
                        • ld1961@aol.com
                          In a message dated 8/5/00 6:21:52 AM Pacific Daylight Time, gidoc@vsnl.com writes:
                          Message 12 of 25 , Aug 6, 2000
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                            In a message dated 8/5/00 6:21:52 AM Pacific Daylight Time, gidoc@...
                            writes:

                            << Treatment is a must.

                            Dr Sharat C Misra MD, DM



                            ----- Original Message -----
                            From: ld1961@...
                            To: GIWorld-Hepatitis@egroups.com
                            Sent: Friday, August 04, 2000 7:09 PM
                            Subject: Re: [GIWorld-Hepatitis] I start Tx next month :)


                            Hello,
                            I just got my sons genotype back...1a...viral load 865,000
                            Hes had hep c since a child (hes now 18) Its a long complicated story but
                            he
                            contracted that e coli 0157H7 bacteria at age 6 and developed hemolytic
                            uremic syndrome. He required multiple transfusions and thats how he
                            contracted hep C..Hes had the virus for 13 yrs...Biopsy, stage 2, mild
                            inflamation, some fibrosis, no necrosis or cirrhosis...NOw the dilema is
                            to
                            treat or not to treat?

                            any feedback?

                            Linda in Newport RI >>

                            Hello,
                            thank you for the brief advice. I also have another question, can you
                            interpert this test result for me?
                            I thought our doctor was testing for viral load, the last viral load he had
                            was 865,000
                            I get copies of all his results, THis test was just done a few weeks ago,
                            here are the results
                            HCV RNA Quanititative 11.46 MEq/mL
                            WHat does this mean? Is this a viral load test? Why are the results so
                            different?
                            THere is a lot of medical background on my son, besides the HUS , he also
                            suffered a massive storke from it, (age 7) required peritoneal dialysis , he
                            has left sided paralysis, he has a very difficult to treat seizure disorder
                            from the stroke, hes frail, low blood counts, WBC 2.4 HE weighs about 110
                            soaking wet at 18...I honesly dont think his body could handle the treatment
                            protocols available, I was hoping new treatments would become available soon.
                            Thank you again for taking a moment to write.
                            Linda
                          • claudine intexas
                            Dear Linda, How long ago was your son s biopsy done? Claudine ... ===== Claudine claudinecrews@hotmail.com __________________________________________________
                            Message 13 of 25 , Aug 6, 2000
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                              Dear Linda,
                              How long ago was your son's biopsy done?
                              Claudine
                              --- ld1961@... wrote:
                              > Hello,
                              > thank you for the brief advice. I also have another
                              > question, can you
                              > interpert this test result for me?
                              > I thought our doctor was testing for viral load, the
                              > last viral load he had
                              > was 865,000
                              > I get copies of all his results, THis test was just
                              > done a few weeks ago,
                              > here are the results
                              > HCV RNA Quanititative 11.46 MEq/mL
                              > WHat does this mean? Is this a viral load test?
                              > Why are the results so
                              > different?
                              > THere is a lot of medical background on my son,
                              > besides the HUS , he also
                              > suffered a massive storke from it, (age 7) required
                              > peritoneal dialysis , he
                              > has left sided paralysis, he has a very difficult to
                              > treat seizure disorder
                              > from the stroke, hes frail, low blood counts, WBC
                              > 2.4 HE weighs about 110
                              > soaking wet at 18...I honesly dont think his body
                              > could handle the treatment
                              > protocols available, I was hoping new treatments
                              > would become available soon.
                              > Thank you again for taking a moment to write.
                              > Linda
                              >


                              =====
                              Claudine
                              claudinecrews@...

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                            • ld1961@aol.com
                              In a message dated 8/6/00 8:46:03 PM Pacific Daylight Time, claudineintexas@yahoo.com writes:
                              Message 14 of 25 , Aug 7, 2000
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                                In a message dated 8/6/00 8:46:03 PM Pacific Daylight Time,
                                claudineintexas@... writes:

                                << Dear Linda,
                                How long ago was your son's biopsy done?
                                Claudine >>

                                He had a biospy in Nov 98.
                              • claudine intexas
                                Dear Linda, I can see why you have been hesitating on treating your son for his HCV. I know you have heard over and over that this is a slowly progressing
                                Message 15 of 25 , Aug 7, 2000
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                                  Dear Linda,
                                  I can see why you have been hesitating on
                                  treating your son for his HCV. I know you have heard
                                  over and over that this is a slowly progressing
                                  disease, and usually it is. Unfortunately that isn't
                                  always the case, especially in people who acquired the
                                  disease through transfusion. I don't know why, maybe
                                  it is because they get a large 'dose' of the virus to
                                  begin with, much more than someone would get from a
                                  contaminated needle or something. Also, I do
                                  understand your fears about the medications, but
                                  remember, on lists like these you are going to mostly
                                  hear all the negative stuff. The people who breeze
                                  through treatment are usually too busy living their
                                  life to be writing in saying how easy it was. Every
                                  one is different, and you don't know how your son will
                                  react until he is actually on the medication. Is your
                                  son seeing doctors that you feel like understand all
                                  his underlying medical conditions and that you trust?
                                  I certainly hope so. You really need good doctors who
                                  can work as a team for your son, because the HCV issue
                                  must be dealt with ASAP. I think you can not delay
                                  treating his HCV any longer. His biopsy was almost 2
                                  years ago and he was at stage 2 then. His viral load
                                  has gone way up too. He is progressing very fast, and
                                  you need to come up with some sort of treatment plan
                                  that his body can handle NOW. There are NO new
                                  treatments that will be available in the next few
                                  years that don't include interferon as part of the
                                  protocol, so there is no point in delaying treatment.
                                  And even if the treatment doesn't clear the virus it
                                  may help his liver, either slowing the progression of
                                  the fibrosis or even reversing some of it. Talk with
                                  his doctors. What are they recommending? Without
                                  treatment his disease will continue to progress very
                                  quickly I'm afraid. Good luck to you both!
                                  Claudine

                                  >


                                  =====
                                  Claudine
                                  claudinecrews@...

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                                • ld1961@aol.com
                                  Claudine. we saw our docotr this morning and we all agreed to wait for the peg to come out, hopefully be the jan...... If my son was otherwise healthy I wouod
                                  Message 16 of 25 , Aug 7, 2000
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                                    Claudine.
                                    we saw our docotr this morning and we all agreed to wait for the peg to come
                                    out, hopefully be the jan......
                                    If my son was otherwise healthy I wouod consider treatment now, But he quite
                                    the extensive medical history and already suffers from a supressed immune
                                    system, and low blood counts, his WBC averages 2.4 his platelets are around
                                    60,000 and H/H run low as well. He's frail......I really dont think he would
                                    be able to handle the currrent protocol. FOr now, I am going to work on his
                                    diet and try to get him to eat more, and get some meat on his bones.
                                    I aopprecaiate your letters and advice..MY docotr felt waiting five more
                                    months is not going to make much of a difference..
                                    Linda
                                  • claudine intexas
                                    Dear Linda, I m glad to hear what his doctor had to say. I don t think waiting 5 months will make a difference either, I was worried you might be waiting for
                                    Message 17 of 25 , Aug 7, 2000
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                                      Dear Linda,
                                      I'm glad to hear what his doctor had to say. I
                                      don't think waiting 5 months will make a difference
                                      either, I was worried you might be waiting for a
                                      non-interferon based treatment, and that could be
                                      another 4 or 5 years, or even more. I think you are
                                      very smart to try and get some weight on him before
                                      treatment, since he is bound to loose some while on
                                      interferon, and it doesn't sound like he can afford to
                                      loose any. Does he just not have much of an appetite?
                                      Did his doctor have suggestions on his diet? This must
                                      be really tough on you too, don't forget to take care
                                      of yourself!
                                      Claudine
                                      --- ld1961@... wrote:
                                      > Claudine.
                                      > we saw our docotr this morning and we all agreed to
                                      > wait for the peg to come
                                      > out, hopefully be the jan......
                                      > If my son was otherwise healthy I wouod consider
                                      > treatment now, But he quite
                                      > the extensive medical history and already suffers
                                      > from a supressed immune
                                      > system, and low blood counts, his WBC averages 2.4
                                      > his platelets are around
                                      > 60,000 and H/H run low as well. He's frail......I
                                      > really dont think he would
                                      > be able to handle the currrent protocol. FOr now, I
                                      > am going to work on his
                                      > diet and try to get him to eat more, and get some
                                      > meat on his bones.
                                      > I aopprecaiate your letters and advice..MY docotr
                                      > felt waiting five more
                                      > months is not going to make much of a difference..
                                      > Linda
                                      >


                                      =====
                                      Claudine
                                      claudinecrews@...

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                                    • David Gray @ P6 Consulting
                                      Dear Linda, Please allow me to briefly introduce myself. My name is David Gray and I live in Texas. Last year, I learned that I have advanced Hepatitis B
                                      Message 18 of 25 , Aug 8, 2000
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                                        Dear Linda,

                                        Please allow me to briefly introduce myself. My name is David Gray and I
                                        live in Texas. Last year, I learned that I have advanced Hepatitis B
                                        complicated by Cirrhosis. The diagnosis was made when I went to the
                                        hospital last May with a failing liver caused by a coinfection of Hepatitis A.

                                        Since that incident, I have fought hard to gain back the weight that I lost
                                        last year. In addition to all the ascities (fluid buildup) that I was glad
                                        to see go, I lost ten pounds of muscle mass which I could scarcely afford
                                        to lose.

                                        My struggle to regain the lost weight lead me to many trials. My present
                                        diet is high in protein and complex carbohydrates, and very low in sodium
                                        and fat. Apart from reducing the sodium, this was not a big deal for me
                                        because my diet was already pretty much that way. More important to my
                                        recent success in regaining the muscle mass were two radical changes that I
                                        made, one in March and the other in May of this year.

                                        First, in March, I began eating five (5) meals per day. Of these, three are
                                        more or less normal sized meals. The other two are heavy snacks rich in
                                        protein and carbohydrates. I intermix low fat yogurt and cheese, bananas,
                                        peaches, and other fruits for the small meals.

                                        Then, in May, I began drinking a prepared protein drink at night, just
                                        before I go to bed. I've recently added protein drink first thing each
                                        morning, immediately upon arising. The protein drink I use is Boost, a
                                        commercial preparation that I can get in the local grocery store.

                                        I hope that some of this information may give you some useful ideas.

                                        Kind regards,
                                        David Gray
                                        Irving, Texas
                                        <mailto:dagray@...>


                                        At 09:49 PM 08/07/2000 , you wrote:
                                        >Dear Linda,
                                        > I'm glad to hear what his doctor had to say. I
                                        >don't think waiting 5 months will make a difference
                                        >either, I was worried you might be waiting for a
                                        >non-interferon based treatment, and that could be
                                        >another 4 or 5 years, or even more. I think you are
                                        >very smart to try and get some weight on him before
                                        >treatment, since he is bound to loose some while on
                                        >interferon, and it doesn't sound like he can afford to
                                        >loose any. Does he just not have much of an appetite?
                                        >Did his doctor have suggestions on his diet? This must
                                        >be really tough on you too, don't forget to take care
                                        >of yourself!
                                        >Claudine
                                        >--- ld1961@... wrote:
                                        > > Claudine.
                                        > > we saw our docotr this morning and we all agreed to
                                        > > wait for the peg to come
                                        > > out, hopefully be the jan......
                                        > > If my son was otherwise healthy I wouod consider
                                        > > treatment now, But he quite
                                        > > the extensive medical history and already suffers
                                        > > from a supressed immune
                                        > > system, and low blood counts, his WBC averages 2.4
                                        > > his platelets are around
                                        > > 60,000 and H/H run low as well. He's frail......I
                                        > > really dont think he would
                                        > > be able to handle the currrent protocol. FOr now, I
                                        > > am going to work on his
                                        > > diet and try to get him to eat more, and get some
                                        > > meat on his bones.
                                        > > I aopprecaiate your letters and advice..MY docotr
                                        > > felt waiting five more
                                        > > months is not going to make much of a difference..
                                        > > Linda
                                        > >
                                        >
                                        >
                                        >=====
                                        >Claudine
                                        >claudinecrews@...
                                        >
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                                      • Ken & Pat @home
                                        Welcome David! Glad to see you here :) Yep, Marty turned me onto the Boost/Nutriment thing. Sure helps me. alley/Patricia ICQ 12631861 alleypat@flash.net
                                        Message 19 of 25 , Aug 9, 2000
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                                          Welcome David! Glad to see you here :)

                                          Yep, Marty turned me onto the Boost/Nutriment thing. Sure helps me.

                                          alley/Patricia
                                          ICQ 12631861
                                          alleypat@...
                                          http://www.flash.net/~alleypat
                                        • David Gray @ P6 Consulting
                                          ... Specifically Boost, not Ensure. Dona and I studied the labels for both because someone gave me a can of Ensure. Ensure is loaded with fat and sugar and
                                          Message 20 of 25 , Aug 13, 2000
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                                            At 07:04 PM 08/09/2000 , you wrote:
                                            >Yep, Marty turned me onto the Boost/Nutriment thing. Sure helps me.

                                            Specifically Boost, not Ensure. Dona and I studied the labels for both
                                            because someone gave me a can of Ensure. Ensure is loaded with fat and
                                            sugar and light on protein.

                                            Boost, OTOH, is more balanced and complete.


                                            David Gray
                                            HBV Chronic
                                            Cirrhosis w/some complications
                                            Irving, TX, USA
                                            E-Mail: <mailto:dagray@...>
                                            ICQ: 72654171

                                            I believe in the sun even when it does not shine.
                                          • Ken & Pat @home
                                            David.. thanks for the info. I ll have to read more carefully. What about Nutriment? Or the store brands? alley/Patricia ICQ 12631861 alleypat@flash.net
                                            Message 21 of 25 , Aug 13, 2000
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                                              David.. thanks for the info. I'll have to read more carefully. What about
                                              Nutriment? Or the store brands?
                                              alley/Patricia
                                              ICQ 12631861
                                              alleypat@...
                                              http://www.flash.net/~alleypat
                                            • David Gray @ P6 Consulting
                                              AlleyPat, I m sorry, I don t know anything about either. Though I ve heard of it, I haven t looked at the label. I don t know that I ve ever seen a store
                                              Message 22 of 25 , Aug 14, 2000
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                                                AlleyPat,

                                                I'm sorry, I don't know anything about either. Though I've heard of it, I
                                                haven't looked at the label. I don't know that I've ever seen a store
                                                brand. If they exist, I suspect it would depend on whether it's repackaged
                                                Ensure, Boost, or Nutriment.

                                                David


                                                At 09:34 PM 08/13/2000 , you wrote:
                                                >David.. thanks for the info. I'll have to read more carefully. What about
                                                >Nutriment? Or the store brands?
                                                >alley/Patricia
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