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Re: [GIWorld-Hepatitis] Another question

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  • Carol
    Hmmmm, I d like to see you make a test case of this....would rival the OJ trial. lol Alley.
    Message 1 of 22 , Aug 31, 2001
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      Hmmmm, I'd like to see you make a "test" case of this....would rival the OJ trial. lol Alley.

      Pat wrote:

      > <<"well, that just goes with it" I'll bet u on that one. Just seems that way.>>
      >
      > Hope you dont' own a gun haaaaaaaaaaaaaaaaaaa
      >
      > Hey I let my combo rage loose when my doc did something I didn't agree with!!!!! I'm always one to utilize my weaknesses into strengths hahahahaha.
      >
      > What antidepressant are you on?
      >
      > And that attitude by your doc WON"T be acceptable when you are hurting. Try to clear a path of understanding with your doc now, before you need help that he may not provide.
      >
      > I wonder if a court would rule it insanity if I'd have beheaded my gastro while on combo?
      >
      > (Can just see Doc shivering! Just kidding!!!... sorta :)
      >
      > Gengis Alley Combo Kahn
      >
      > Pat
      >
      > mailto:alleypat@... andromedagurl@...
      >
      > note: alleypat@... will be disconnected at the end of August
      >
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    • Constance Dickson
      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
      Message 2 of 22 , Sep 1, 2001
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        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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      • Tatezi
        Rebetron should be available in Canada. I know a fellow hepper who lived in Newfoundland (closest town was St. Johns) who fought to get on treatment when they
        Message 3 of 22 , Sep 1, 2001
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          Rebetron should be available in Canada. I know a fellow hepper who lived
          in Newfoundland (closest town was St. Johns) who fought to get on
          treatment when they first approved it to be part of their socialized
          medicine. She succeeded in getting tx and that was probalby one and a
          half years ago. She has now left this earth walk so I can't get any
          additional details for you.

          Now, she wasn't always honest with me but I seriously doubt she would
          have lied about that. And she had a real legal battle to be approved for
          treatment because they had just approved it and she was fairly advanced
          in liver fibrosis.

          Just thought I'd toss that out..

          Tatezi

          Carol wrote:

          > Hi Alley....I hope this becomes available in Canada soon. I met a
          > woman today who's 50 and has had HCV for 30 years. She has been to a
          > gastro but NEVER has had a liver biopsy!! Sheeesh, Canada is so far
          > behind....we'll never catch up. I bet Canada has never heard of
          > interferon either....I'll find out at next
          > Dr. appt. Sheeeeesh.
          >
          > Carol
          >
          > Pat wrote:
          >
          > > Riba the pills and interferon the shots used to be "bundled" and the
          > FDA or whatever, maybe just the drug maker, didn't allow separation of
          > the pills and the shots. Maybe so you couldn't do another drug maker
          > brand of interferon and do the riba, who knows, a marketing strategy
          > for sure.
          > >
          > > So, Schering, the drug maker, had to get permission from FDA I think
          > to separate the two and allow the riba to "come with" the PEG
          > interferon, or be sent separately.
          > >
          > > When the doc wriote a script, before peg, it was for rebetron, which
          > meant combination of interferon and ribavirin. It was a big deal for
          > my doc to be able to write a script for more interferon, according to
          > my ins company, who already had their "packaged" together and shipped
          > from their own pharmacy/warehouse.
          > >
          > > luckily it wasn't a hassle with my ins company, but I can imagine
          > with some it could be quite a hassle.
          > >
          > > Pat
          > >
          > > mailto:alleypat@... andromedagurl@...
          > >
          > > note: alleypat@... will be disconnected at the end of August
          > >
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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 4 of 22 , Sep 1, 2001
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            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 5 of 22 , Sep 1, 2001
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              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 6 of 22 , Sep 1, 2001
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                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]
                >
                >
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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 7 of 22 , Feb 21, 2002
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                  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 8 of 22 , Feb 21, 2002
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                    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 9 of 22 , Feb 21, 2002
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                      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
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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 10 of 22 , Apr 6, 2002
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                        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 11 of 22 , Apr 6, 2002
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                          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 12 of 22 , Apr 7, 2002
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                            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 13 of 22 , Jun 6, 2002
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                              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 14 of 22 , Jun 6, 2002
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                                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 15 of 22 , Jun 6, 2002
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                                  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 16 of 22 , Aug 24, 2002
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                                    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 17 of 22 , Aug 24, 2002
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                                      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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