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Re: [GIWorld-Hepatitis] Question re Stroke & Rebetron

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  • AVansi7465@aol.com
    ... Hi! You, obviously, haven t heard of what we call Interferon Fog . Yes, it does cause memory loss, crackiness and I am, for the first time in my life,
    Message 1 of 25 , Mar 1, 2001
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      In a message dated 3/1/01 1:09:17 PM !!!First Boot!!!, tatezi@... writes:


      > I didn't know that the ribavirin was what caused the anemia. I'm glad to
      > know that. Is it also the ribavirin that causes the thyroid issue, the
      > crankiness and the memory loss?
      >

      Hi! You, obviously, haven't heard of what we call "Interferon Fog". Yes, it
      does cause memory loss, crackiness and I am, for the first time in my life,
      hypothyrodic. I spent the first 35 years of my life on diets trying to lose
      weight. Guess I spend the rest of it trying to gain weight. Anemia is the
      most common reason the docs take people off of Rebetron. It is the reason my
      doc took me off. When my RBC hit the cellar, we both said: " Enough,
      already." That count made me inelligable for any trials on the new drugs. I
      finally made it to 4.0, but that still isn't within normal values.
      For all you people who are fighting with your disability companies.......I
      finally won.....without a lawyer. Advise: Go see a psychologist for a
      couple of sessions and explain what this disease is like. Then have him/her
      write a letter. I started seeing mine two weeks before I started with the
      first round of treatment, which was Interferon, alone. She has been seeing
      me off an on now , for three years. The Navy demands that you see, either a
      psychiatrist or a psychologist if you have a terminal illness or are
      undergoing chemo. Speak with your primary care physician. None of them
      wants to be responsible for a suicide. Good luck and good. Anne


      [Non-text portions of this message have been removed]
    • claudine intexas
      Hi Tatizi, It is the interferon that causes the thyroid problems and crankiness, but it could be both the interferon and your thyroid problem causing the
      Message 2 of 25 , Mar 1, 2001
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        Hi Tatizi,
        It is the interferon that causes the thyroid
        problems and crankiness, but it could be both the
        interferon and your thyroid problem causing the memory
        problem. I was told by one of the Be-In-Charge nurses
        that both interferon and ribavirin can cause
        depression and that depression is more of a problem in
        those on combo, as opposed to mono therapy, but I
        really haven't seen any info confirming that. As for
        interferon alone as maintainence, that really wasn't
        what I was saying. I think you should keep doing the
        ribavirin as long as possible (well, at least a year -
        I don't think it's been tested for safety when taken
        longer than that) even if you need a reduced dose,
        since it improves your chances of sustaining a
        response. However, interferon used alone is being
        studied now as a maintainence therapy for
        nonresponders to help keep fibrosis or cirrhosis from
        getting worse, and maybe even improving the condition
        of the liver. Good luck!
        Claudine


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      • Alley/Pat
        Tatezi, Claudine is right. This isn t the same kind of anemia. Sorry thot you knew that but I get confused lol. Try upping some vitamins too, esp the B
        Message 3 of 25 , Mar 1, 2001
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          Tatezi,
          Claudine is right. This isn't the same kind of anemia. Sorry thot you
          knew that but I get confused lol. Try upping some vitamins too, esp the B
          vitamins, folic acid, if you can take those. I don't remember the state of
          your liver so I don't want to give wrong suggestions for you k.


          Patricia / Alley
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        • Alley/Pat
          tatezi said
          Message 4 of 25 , Mar 1, 2001
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            tatezi said <<I didn't know that the ribavirin was what caused the anemia.
            I'm glad to
            know that. Is it also the ribavirin that causes the thyroid issue, the
            crankiness and the memory loss?>>

            I forgot, what anti depressant are you on? I found a good anti d helped me a
            lot with the irritabileness and I slept better. My doc adjusts the anti d
            dosage depending on my reaction to the combo. About the 4th month I had to
            increase a while. Now I'm back down to the original dose.


            Patricia / Alley
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          • Tatezi
            Been taking prozac and haven t had any problems with depression.....just every now and then get overwhelmed with crankiness. The liver guy gave me xanax and it
            Message 5 of 25 , Mar 3, 2001
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              Been taking prozac and haven't had any problems with depression.....just
              every now and then get overwhelmed with crankiness. The liver guy gave
              me xanax and it has helped considerably with the crankiness so maybe
              it's anxiety related. Don't know how that can be, but my body and mind
              seem to be strangers to me any more.

              Don't really want to switch antidepressants if at all possible. My
              doctor prescribes a double dose for me which keeps me and my mother
              supplied. Since my dad's death, prozac turned my mom's life around. But
              with medicare not covering it and at $200 a month for the prescription,
              she really can't afford it.

              And sleeping....I started having a problem sleeping even before starting
              tx. Blamed it on my bed being old and bought a new bed. Blamed it on my
              cats....seemed I couldn't stand to have them in bed with me any more.
              Finally it reached the point where I wasn't sleeping at all (like for 3
              weeks)....just kept getting up and walking around the house. Also had a
              problem holding my legs still.....couldn't sit and watch tv or read or
              anything. I don't know if this is related to the hep or tx or not, but I
              was diagnosed with restless leg syndrome. Since then they've had me
              taking Klonpin at night and once again sleep is not a problem. Since
              this was starting before I started treatment I doubt it is treatment
              related but maybe tx exacerbated it? I have no clue, just glad to be
              sleeping again.

              The worst thing is the blasted brain fog. I can't remember anything any
              more. And I'm so spacey all the time....can't concentrate on anything.
              Watch TV and 5 minutes later can't remember what I watched. Can't focus
              on reading....can't concentrate. Can't wait for this to end...sure hope
              it does end.

              >
              > I forgot, what anti depressant are you on? I found a good anti d
              > helped me a lot with the irritabileness and I slept better.
              >
              >
              > Patricia / Alley
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            • jessiefromchino@webtv.net
              Hi All, Well I have been off tx for 2 months know. I feel great not much brain fog any more I still forget sometimes what I am talking about. But I can watch
              Message 6 of 25 , Mar 3, 2001
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                Hi All,
                Well I have been off tx for 2 months know. I feel great not much
                brain fog any more I still forget sometimes what I am talking about. But
                I can watch tv and remember what I am watching. Oh I remember what
                people tell me that is so nice. My sinuses are back to normal YEA!!
                I still have joint and muscles pain but I can live with it not like it
                was on tx. My skin is not dry or itchy any more. No more red spots on my
                chest. One thing I have noticed when I am tired I have got to lay down I
                have no choice I get just beat. I think this whole thing has taught me
                to slow down I use to be a go, go and go some more person. (not any
                more) I am know a slow go person.
                I go for a 3 month blood test at the end of March. Just wanted to let
                you all know what was going on with me. I still read my e-mail every
                day.
                Take Care, Jessie







                E-Z DOES IT
              • Suzy Balone
                Jessie and ALL, All right , two months off treatment , I myself have finished tx as of yesterday, so am still waiting to feel good, hopefully I will! Does
                Message 7 of 25 , Mar 3, 2001
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                  Jessie and ALL,
                  All right , two months off treatment , I myself have finished tx as of
                  yesterday, so am still waiting to feel good, hopefully I will!
                  Does anyone know how long it might take for your eyes to return to
                  their previous state? Was wondering how long I should go after tx to get
                  an eye exam. I am so excited and wasn to thank each and everyone of you for
                  the support, prayers, and generosity of your time and knowledge shared on
                  this site as well as other sites.
                  Brain fog was getting pretty bad at the end, hopefully that will clear also.
                  If my sinuses would clear, it would be great!! I will go in Monday for my
                  final blood work, to see if I am still undectable, then will let you all
                  know

                  THANK YOU ALL FROM THE BOTTOM OF MY HEART : )

                  Suzy
                  PS
                  Good luck on your three month test Jessie


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                • Alley/Pat
                  Jesse way to go! Glad things are easing up for you some. Keep us informed on your tests :) You give us hope Patricia / Alley alleypat@flash.net ... My
                  Message 8 of 25 , Mar 4, 2001
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                    Jesse way to go! Glad things are easing up for you some. Keep us informed on
                    your tests :)
                    You give us hope

                    Patricia / Alley
                    alleypat@...
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                    12631861@...
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                  • claudine intexas
                    I am so glad to hear that you have finally finished! I don t know anything about the eyes, mine didn t get real bad on treatment, but it never got better
                    Message 9 of 25 , Mar 4, 2001
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                      I am so glad to hear that you have finally finished! I
                      don't know anything about the eyes, mine didn't get
                      real bad on treatment, but it never got better either.
                      The eye doctor said it was just normal aging, so who
                      knows. The rest of me felt pretty good within 4
                      weeks. Be sure and keep us posted on your lab tests.
                      Good luck!
                      Claudine

                      --- Suzy Balone <suzybalone@...> wrote:
                      > Jessie and ALL,
                      > All right , two months off treatment , I myself
                      > have finished tx as of
                      > yesterday, so am still waiting to feel good,
                      > hopefully I will!
                      > Does anyone know how long it might take for your
                      > eyes to return to
                      > their previous state? Was wondering how long I
                      > should go after tx to get
                      > an eye exam. I am so excited and wasn to thank each
                      > and everyone of you for
                      > the support, prayers, and generosity of your time
                      > and knowledge shared on
                      > this site as well as other sites.
                      > Brain fog was getting pretty bad at the end,
                      > hopefully that will clear also.
                      > If my sinuses would clear, it would be great!! I
                      > will go in Monday for my
                      > final blood work, to see if I am still undectable,
                      > then will let you all
                      > know
                      >
                      > THANK YOU ALL FROM THE BOTTOM OF MY HEART : )
                      >
                      > Suzy
                      > PS
                      > Good luck on your three month test Jessie
                      >
                      >
                      >
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                    • Constance Dickson
                      Suzy, mine got better after I was daignosed with Diabetes and went on meds for it. I don t know if this helps you at all, but that is what happened to me.
                      Message 10 of 25 , Mar 4, 2001
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                        Suzy, mine got better after I was daignosed with
                        Diabetes and went on meds for it. I don't know if
                        this helps you at all, but that is what happened to
                        me. Good Luck, Connie


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                      • Suzy Balone
                        Claudine, Bottomed out again on my WBC s 2.1. RBC s 2.7, no wonder I have felt so crummy, just got the results today from yesterday so hope to be feeling
                        Message 11 of 25 , Mar 6, 2001
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                          Claudine,
                          Bottomed out again on my WBC's 2.1.
                          RBC's 2.7, no wonder I have felt so crummy, just got the results today from
                          yesterday so hope to be feeling better soon since I don't have to take the
                          tx. can't keep much down either, Things should start looking up though and
                          any way I MADE IT! Whew what a long haul, will keep ou posted on my pcr's
                          Thanks for your support
                          Suzy


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                        • Suzy Balone
                          Thanks Connie, Hope things are going well this time around, good work with the interview, wish I could have seen it Suzy
                          Message 12 of 25 , Mar 6, 2001
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                            Thanks Connie,
                            Hope things are going well this time around, good work with the interview,
                            wish I could have seen it
                            Suzy




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                          • Suzy Balone
                            Thanks Claudine you are an abundant wealth of information, I did quit taking it, it was wonderful to have regular bowel movements again but was gettign
                            Message 13 of 25 , Dec 21, 2001
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                              Thanks Claudine
                              you are an abundant wealth of information, I did quit taking it, it was
                              wonderful to have regular bowel movements again but was gettign tired of
                              taking all those pills,
                              Dr said just take some colace, tried that a long ti,e ago but will give it
                              another whirl,, have tried tat's flax, sunflower seeds and almond mixture
                              as well as having hot cereal every morning ( or most) and adding bran to it,
                              have been exercising, just must have a sluggish bowel, I can understand
                              about putting too many things in your body which i s why I wasn't doing it
                              all the time. well once agin thanks
                              Suzy



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                            • Carol
                              Sorry Suzy, I didn t read your message very good the first time. Tatezi quit the group but I keep in contact with her and she s doing ok. Carol ... From: Suzy
                              Message 14 of 25 , Oct 1, 2003
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                                Sorry Suzy, I didn't read your message very good the first time. Tatezi quit the group but I keep in contact with her and she's doing ok.

                                Carol
                                ----- Original Message -----
                                From: Suzy Balone
                                To: GIWorld-Hepatitis@yahoogroups.com
                                Sent: Wednesday, October 01, 2003 12:20 PM
                                Subject: Re: [GIWorld-Hepatitis] RE: I'm giving up too / Carol


                                what level does msm raise? and guess i will have to keep reading to find ot
                                what happened to tat


                                I told my doc that I was going to take MSM to raise my level,

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