Guest guest Posted May 6, 2001 Report Share Posted May 6, 2001 I believe I am the only one in Connecticut so far. Turk wrote Sorry Turk. You are not alone in this little state, we may be farthest from you, but we are in the great tourest town of Mystic. If you go to New Haven for your implant they have a great group of doctors down there. best wishes Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 hi dave and gail ; Following message that i received might be of some interest to you, nice to see im not alone dont get me wrong i never wanto see another fellow in my shoes but you know what i mean regards good luck and good heartTURK Hi Turk! My mane is . I'm on my 3rd ICD and have written a book about my experience of survivong SCD and living with an ICD. (You may have read about it on the Zapper) I wanted to let you know that my husband and I are coming to New Haven. I am the keynote speaker at the SCCC of the American Ass. Of Critical Care Nurses Conference on May 10th at the Savin Rock Conference Center in New Haven. I will be sharing some of my experience as a patient. I had hoped to meet the ICD group in this area but it did not work out. But in case anyone is interested in reading my book it will be available at the conference or they can check out my webiste for more info on the book and where to order it. http://Suddendeathsurvivor.homestead.com Looks like the weather is OK up there, so I hope we have a chance to see some of the area before we fly back to NC. We will be staying at the Omni New Haven Hotel on the evening of May 9 & 10th if there are any ICDers in the area, we loved to meet them. Best wishes, Re: Rashes I believe I am the only one in Connecticut so far. Turk wrote Sorry Turk. You are not alone in this little state, we may be farthest from you, but we are in the great tourest town of Mystic. If you go to New Haven for your implant they have a great group of doctors down there. best wishes GailPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2001 Report Share Posted May 8, 2001 Hi, I had a terrible rash on my face for ages, mime was caused by a food allergy, I hope that helps. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2001 Report Share Posted May 18, 2001 Sue B, What is the treatment? Would the same apply for hives? I have had really bad hives for 5 years - controlled at one time by antifungals, then different antihistamine concoctions. Right now, nothing works. I take 25 mg of doxepin at night, and 4 Claritin at a time in the day, and Zantac. And miserable. > > For those with skin problems such as rashes, eczema, ringworm--your body's > IgA (one of the five major classes of antibodies) is supposed to protect you > from those things. > > Selective IgA deficiency is very common--especially among people of European > ancestry, where it might be as frequent as 1 in 200. Many (most?) people who > have IgA deficiency are asymptomatic, but others have varying symptoms > involving the epithelium. > > So, if you have skin problems, chronic sinus infections, frequent > respiratory infections, digestive problems you might look into IgA > deficiency. If a part of your immune system is missing, you should know > about it. > > There's no known treatment for selective IgA deficiency. > > Sue B. > upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2002 Report Share Posted January 11, 2002 His web site has a schedule of his upcoming TV appearances: http://www.drcolbert.com/itinerary.html > > Hi If you can get the book " Toxic Relief " by Dr.Don Colbert I just got it perhaps you can call your local Library it talks of the need to cleanse you liver to get to the rashes like ezema and psoriasis. Ruth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi everyone again. Believe it or not I have now been a member of tis group for 4 years. I read the postings a lot, but do not write back much. Wanted everyone to know that I have started my FOURTH go-around of interferon and Ribavirin. The last 2 have not resulted in a negative titer for me, but recently my active viral load quadrupled, so we had to start therapy again. I am not complaining..just saying to all to hang in there and you will find strengths you did not realize you have. My background is in critical care nursing (22 years), so I have a unique perspective. Feel free to contact me thru the group or via email to me.....................PEGGY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi everyone again. Believe it or not I have now been a member of tis group for 4 years. I read the postings a lot, but do not write back much. Wanted everyone to know that I have started my FOURTH go-around of interferon and Ribavirin. The last 2 have not resulted in a negative titer for me, but recently my active viral load quadrupled, so we had to start therapy again. I am not complaining..just saying to all to hang in there and you will find strengths you did not realize you have. My background is in critical care nursing (22 years), so I have a unique perspective. Feel free to contact me thru the group or via email to me.....................PEGGY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 In a message dated 4/4/03 9:22:18 AM Eastern Standard Time, tatezi@... writes: > Wow, Peggy...your fourth go around on tx...sure hope you handle it well. > > Did you viral loads drop after each round of tx? And if they did, how long > did they stay down? I know they say that even if you don't respond to > treatment it helps. I did tx several years ago but got laid off before I > could have my 6 month post test to see if my viral load went back up to > where it had been. Since then I've not had insurance and have gotten laid > off again so still haven't been able to get my viral load tested. > > Tatezi > The first time the viral load was negative at the end but positive at 3 months after treatments were dont. So we strarted round number two. The loads dropped dropped but were never negative. The the pegalated interferon became available so we tried that. It did not result in a negative titer but did drop the load enough that he felt it was ok to stop treatment because I was obviously a nonresponder. We had no intention of round 4 until I started feeling crummy and had a level checked and it was over 1 million. Because of the symptoms and the change in the titer we started the fourth round 2 weeks ago. The injections havent been too bad but the Ribavirin is not playing well with other children..LOL As far as insurance..I too went for a time without health insurance and a job. Contact Schering's Commitment to Care program. If you meet the qualifications and it sure sounds like you do, they used to supply the meds for free. At least they did for me for a year. The best thing is to maintain an optimistic outlook I feel. Life teaches us some rough lessons. Do your homework, and the lessons life has to offer will lead the way for you. The most difficult time I have ever is that I was such an active person and on or off meds I dont have the stamina I used to..or I am just getting too darned old! O:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 In a message dated 4/4/03 9:22:18 AM Eastern Standard Time, tatezi@... writes: > Wow, Peggy...your fourth go around on tx...sure hope you handle it well. > > Did you viral loads drop after each round of tx? And if they did, how long > did they stay down? I know they say that even if you don't respond to > treatment it helps. I did tx several years ago but got laid off before I > could have my 6 month post test to see if my viral load went back up to > where it had been. Since then I've not had insurance and have gotten laid > off again so still haven't been able to get my viral load tested. > > Tatezi > The first time the viral load was negative at the end but positive at 3 months after treatments were dont. So we strarted round number two. The loads dropped dropped but were never negative. The the pegalated interferon became available so we tried that. It did not result in a negative titer but did drop the load enough that he felt it was ok to stop treatment because I was obviously a nonresponder. We had no intention of round 4 until I started feeling crummy and had a level checked and it was over 1 million. Because of the symptoms and the change in the titer we started the fourth round 2 weeks ago. The injections havent been too bad but the Ribavirin is not playing well with other children..LOL As far as insurance..I too went for a time without health insurance and a job. Contact Schering's Commitment to Care program. If you meet the qualifications and it sure sounds like you do, they used to supply the meds for free. At least they did for me for a year. The best thing is to maintain an optimistic outlook I feel. Life teaches us some rough lessons. Do your homework, and the lessons life has to offer will lead the way for you. The most difficult time I have ever is that I was such an active person and on or off meds I dont have the stamina I used to..or I am just getting too darned old! O:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Have done it the full year each time.......peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Have done it the full year each time.......peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Wow, Peggy...your fourth go around on tx...sure hope you handle it well. Did you viral loads drop after each round of tx? And if they did, how long did they stay down? I know they say that even if you don't respond to treatment it helps. I did tx several years ago but got laid off before I could have my 6 month post test to see if my viral load went back up to where it had been. Since then I've not had insurance and have gotten laid off again so still haven't been able to get my viral load tested. Tatezi Re: rashes > Hi everyone again. Believe it or not I have now been a member of tis group > for 4 years. I read the postings a lot, but do not write back much. Wanted > everyone to know that I have started my FOURTH go-around of interferon and > Ribavirin. The last 2 have not resulted in a negative titer for me, but > recently my active viral load quadrupled, so we had to start therapy again. I > am not complaining..just saying to all to hang in there and you will find > strengths you did not realize you have. My background is in critical care > nursing (22 years), so I have a unique perspective. Feel free to contact me > thru the group or via email to me.....................PEGGY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Wow, Peggy...your fourth go around on tx...sure hope you handle it well. Did you viral loads drop after each round of tx? And if they did, how long did they stay down? I know they say that even if you don't respond to treatment it helps. I did tx several years ago but got laid off before I could have my 6 month post test to see if my viral load went back up to where it had been. Since then I've not had insurance and have gotten laid off again so still haven't been able to get my viral load tested. Tatezi Re: rashes > Hi everyone again. Believe it or not I have now been a member of tis group > for 4 years. I read the postings a lot, but do not write back much. Wanted > everyone to know that I have started my FOURTH go-around of interferon and > Ribavirin. The last 2 have not resulted in a negative titer for me, but > recently my active viral load quadrupled, so we had to start therapy again. I > am not complaining..just saying to all to hang in there and you will find > strengths you did not realize you have. My background is in critical care > nursing (22 years), so I have a unique perspective. Feel free to contact me > thru the group or via email to me.....................PEGGY > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi.Same story here(3 times).The last was Ribavarine and Peg from schering plough.Six months after TX I was negative.So I hope you.re doing the Peg also and do it for at least one year.Goodluck,Willem. Re: rashes Hi everyone again. Believe it or not I have now been a member of tis group for 4 years. I read the postings a lot, but do not write back much. Wanted everyone to know that I have started my FOURTH go-around of interferon and Ribavirin. The last 2 have not resulted in a negative titer for me, but recently my active viral load quadrupled, so we had to start therapy again. I am not complaining..just saying to all to hang in there and you will find strengths you did not realize you have. My background is in critical care nursing (22 years), so I have a unique perspective. Feel free to contact me thru the group or via email to me.....................PEGGY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Hi.Same story here(3 times).The last was Ribavarine and Peg from schering plough.Six months after TX I was negative.So I hope you.re doing the Peg also and do it for at least one year.Goodluck,Willem. Re: rashes Hi everyone again. Believe it or not I have now been a member of tis group for 4 years. I read the postings a lot, but do not write back much. Wanted everyone to know that I have started my FOURTH go-around of interferon and Ribavirin. The last 2 have not resulted in a negative titer for me, but recently my active viral load quadrupled, so we had to start therapy again. I am not complaining..just saying to all to hang in there and you will find strengths you did not realize you have. My background is in critical care nursing (22 years), so I have a unique perspective. Feel free to contact me thru the group or via email to me.....................PEGGY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 I would be willing to try the peg, but believe that even to be accepted into Schering's commitment to care program I would need a doctor. I'm holding off on doing anything until I'm employed again with benefits because I believe that Roche's Pegysus is a superior treatment to Schering's peg...at least from all the studies I have read and compared to Scherings studies. Not to mention that I believe the Commitment to Care program is more for their research purposes. I do chinese medicine and feel better than I ever have. I believe in the theories and principles of chinese medicine and am much more comfortable following this discipline until I really know what is going on with my viral load. I feel great and only feel " sluggish " when I don't follow my nutritional regime. I eat and live " liver healthy " to help my liver but chinese medicine does more than treat the liver...it treats the whole. I did get accepted in the county's GI program but my first appoint isn't until the end of the month. If I'm still not working by then, I should be able to find out my viral load and make an intelligent decision regarding treatment. Tatezi > The first time the viral load was negative at the end but positive at 3 > months after treatments were dont. So we strarted round number two. The loads > dropped dropped but were never negative. The the pegalated interferon became > available so we tried that. It did not result in a negative titer but did > drop the load enough that he felt it was ok to stop treatment because I was > obviously a nonresponder. We had no intention of round 4 until I started > feeling crummy and had a level checked and it was over 1 million. Because of > the symptoms and the change in the titer we started the fourth round 2 weeks > ago. The injections havent been too bad but the Ribavirin is not playing well > with other children..LOL > > As far as insurance..I too went for a time without health insurance and a > job. Contact Schering's Commitment to Care program. If you meet the > qualifications and it sure sounds like you do, they used to supply the meds > for free. At least they did for me for a year. > > The best thing is to maintain an optimistic outlook I feel. Life teaches us > some rough lessons. Do your homework, and the lessons life has to offer will > lead the way for you. The most difficult time I have ever is that I was such > an active person and on or off meds I dont have the stamina I used to..or I > am just getting too darned old! O:) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 I would be willing to try the peg, but believe that even to be accepted into Schering's commitment to care program I would need a doctor. I'm holding off on doing anything until I'm employed again with benefits because I believe that Roche's Pegysus is a superior treatment to Schering's peg...at least from all the studies I have read and compared to Scherings studies. Not to mention that I believe the Commitment to Care program is more for their research purposes. I do chinese medicine and feel better than I ever have. I believe in the theories and principles of chinese medicine and am much more comfortable following this discipline until I really know what is going on with my viral load. I feel great and only feel " sluggish " when I don't follow my nutritional regime. I eat and live " liver healthy " to help my liver but chinese medicine does more than treat the liver...it treats the whole. I did get accepted in the county's GI program but my first appoint isn't until the end of the month. If I'm still not working by then, I should be able to find out my viral load and make an intelligent decision regarding treatment. Tatezi > The first time the viral load was negative at the end but positive at 3 > months after treatments were dont. So we strarted round number two. The loads > dropped dropped but were never negative. The the pegalated interferon became > available so we tried that. It did not result in a negative titer but did > drop the load enough that he felt it was ok to stop treatment because I was > obviously a nonresponder. We had no intention of round 4 until I started > feeling crummy and had a level checked and it was over 1 million. Because of > the symptoms and the change in the titer we started the fourth round 2 weeks > ago. The injections havent been too bad but the Ribavirin is not playing well > with other children..LOL > > As far as insurance..I too went for a time without health insurance and a > job. Contact Schering's Commitment to Care program. If you meet the > qualifications and it sure sounds like you do, they used to supply the meds > for free. At least they did for me for a year. > > The best thing is to maintain an optimistic outlook I feel. Life teaches us > some rough lessons. Do your homework, and the lessons life has to offer will > lead the way for you. The most difficult time I have ever is that I was such > an active person and on or off meds I dont have the stamina I used to..or I > am just getting too darned old! O:) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 In a message dated 4/4/03 3:43:17 PM Eastern Standard Time, patriciajean@... writes: > Wow do you mean your doc retreated a 4th time just because your viral load > went above a million? > NAH..he treated me because I was symptomatic for the first time since stopping treatment last time. He also, I " think " , feels in a unique position since we are both medical people. Thanks for the support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 In a message dated 4/4/03 3:43:17 PM Eastern Standard Time, patriciajean@... writes: > Wow do you mean your doc retreated a 4th time just because your viral load > went above a million? > NAH..he treated me because I was symptomatic for the first time since stopping treatment last time. He also, I " think " , feels in a unique position since we are both medical people. Thanks for the support Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 PS..One ODD response I have had to the meds is the development of white patches of skin depigmentation. I am not a jackson..LOL..but same skind stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 PS..One ODD response I have had to the meds is the development of white patches of skin depigmentation. I am not a jackson..LOL..but same skind stuff. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Wow do you mean your doc retreated a 4th time just because your viral load went above a million? If that were the case, I'd be doing treatment many times lol. Luckily, while some think the higher the viral load, the faster it damages the liver, there is no correclation between high viral load and how sick you may or may not be. I have fibrosis 0-1, inflamation, and a 2.3 million viral load, but I'm not doing treatment again. There are worse things thank Hep C (like treatment!) and the treatment can give permanent sides. Good luck with your treatment and letus know how it goes! Alley Grand Prairie, Tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Wow do you mean your doc retreated a 4th time just because your viral load went above a million? If that were the case, I'd be doing treatment many times lol. Luckily, while some think the higher the viral load, the faster it damages the liver, there is no correclation between high viral load and how sick you may or may not be. I have fibrosis 0-1, inflamation, and a 2.3 million viral load, but I'm not doing treatment again. There are worse things thank Hep C (like treatment!) and the treatment can give permanent sides. Good luck with your treatment and letus know how it goes! Alley Grand Prairie, Tx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Didn't Willem go through 3 or 4 rounds of treatment and responded the last time? Are you here Willem to answer that question? Peggy, what symptoms are you experiencing? My viral load was 4.2 million when I was first diagnosed but I'd never experienced any symptoms. Would never have known I had Hep C had my ex not tracked me down to tell me that two of his brothers had died of liver failure due to Hep C, his other brother had been listed for a liver and he was in treatment so I should get tested. Even my doctor didn't believe I could have it because he always tracked my LFTs because of my past. And every LFT test I've ever had done was normal. But my biopsy showed Stage 2 fibrosis so I am walking proof that LFTs are no indicator of liver damage. Tatezi Re: rashes > In a message dated 4/4/03 3:43:17 PM Eastern Standard Time, > patriciajean@... writes: > > > > Wow do you mean your doc retreated a 4th time just because your viral load > > went above a million? > > > > NAH..he treated me because I was symptomatic for the first time since > stopping treatment last time. He also, I " think " , feels in a unique position > since we are both medical people. Thanks for the support > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2003 Report Share Posted April 4, 2003 Didn't Willem go through 3 or 4 rounds of treatment and responded the last time? Are you here Willem to answer that question? Peggy, what symptoms are you experiencing? My viral load was 4.2 million when I was first diagnosed but I'd never experienced any symptoms. Would never have known I had Hep C had my ex not tracked me down to tell me that two of his brothers had died of liver failure due to Hep C, his other brother had been listed for a liver and he was in treatment so I should get tested. Even my doctor didn't believe I could have it because he always tracked my LFTs because of my past. And every LFT test I've ever had done was normal. But my biopsy showed Stage 2 fibrosis so I am walking proof that LFTs are no indicator of liver damage. Tatezi Re: rashes > In a message dated 4/4/03 3:43:17 PM Eastern Standard Time, > patriciajean@... writes: > > > > Wow do you mean your doc retreated a 4th time just because your viral load > > went above a million? > > > > NAH..he treated me because I was symptomatic for the first time since > stopping treatment last time. He also, I " think " , feels in a unique position > since we are both medical people. Thanks for the support > > > Quote Link to comment Share on other sites More sharing options...
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