Guest guest Posted August 1, 1999 Report Share Posted August 1, 1999 I all......some of the oldtimers know me....I read but rarely write......kinda like a fine spice....a little goes a long way. I was diagnosed at Mayo, Ariz w/ a very mild case of AIH in March, 1998. No symptoms and only a very mildly elevated GGTP. Biopsy showed mild inflamation but had high SMA. Mayo prescribed waiting and watching....no meds. I go back for another biopsy March, 2000. The Mayo folks think there are a lot of folks like me that just have a mild case and doesn't flare .... that's why this disease is so strange ... it runs in all forms and degrees of severity. Concerning the conventio ..... SUE....GO For IT!!!! Mayo, Minn would be a great, non-winter meeting place. I'd suggest we get voulunteers to research specific areas and find the experts to repot....eg: symptoms, current meds, new meds, stem cell research, artificial livers.....etc. This could be a great event and a great time to meet all the AIHer's. I'd also suggest we keep it to autoimmune hepatitis of all types ..... we do need a forum that doesn't get diluted by all other types of liver disease ..... just my opinion .... I certainly would consider PBC and related diseases part of the autoimmune group. Good health to all, Rick, AIH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 What does GGTP stand for. Perhaps some kind of booklet of notes from the convention can be made for those of us who cant go. J >From: AutoEngr2@... >Reply- onelist > onelist >Subject: Re: [ ] Digest Number 224 >Date: Sun, 1 Aug 1999 19:28:37 EDT >MIME-Version: 1.0 >From errors-165537-4630-shireen42 Sun Aug 01 16:29:17 1999 >Received: from [209.207.164.159] by hotmail.com (2.1) with ESMTP id >MHotMailB96E234D0083D820F39CD1CFA49F67070; Sun Aug 01 16:29:17 1999 >Received: (qmail 537 invoked by alias); 1 Aug 1999 23:28:48 -0000 >Received: (qmail 501 invoked from network); 1 Aug 1999 23:28:47 -0000 >Received: from unknown (HELO imo16.mx.aol.com) (198.81.17.6) by >pop.onelist.com with SMTP; 1 Aug 1999 23:28:47 -0000 >Received: from AutoEngr2@... by imo16.mx.aol.com (mail_out_v22.4.) id >hPIIa00254 (2619) for < onelist>; Sun, 1 Aug 1999 >19:28:37 -0400 (EDT) >Message-ID: <3659c110.24d63225@...> >X-Mailer: AOL 4.0 for Windows 95 sub 21 >Mailing-List: list onelist; contact > -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: AutoEngr2@... > >I all......some of the oldtimers know me....I read but rarely >write......kinda like a fine spice....a little goes a long way. I was >diagnosed at Mayo, Ariz w/ a very mild case of AIH in March, 1998. No >symptoms and only a very mildly elevated GGTP. Biopsy showed mild >inflamation >but had high SMA. Mayo prescribed waiting and watching....no meds. I go >back >for another biopsy March, 2000. The Mayo folks think there are a lot of >folks >like me that just have a mild case and doesn't flare .... that's why this >disease is so strange ... it runs in all forms and degrees of severity. > >Concerning the conventio ..... SUE....GO For IT!!!! Mayo, Minn would be a >great, non-winter meeting place. I'd suggest we get voulunteers to research >specific areas and find the experts to repot....eg: symptoms, current meds, >new meds, stem cell research, artificial livers.....etc. > >This could be a great event and a great time to meet all the AIHer's. I'd >also suggest we keep it to autoimmune hepatitis of all types ..... we do >need >a forum that doesn't get diluted by all other types of liver disease ..... >just my opinion .... I certainly would consider PBC and related diseases >part >of the autoimmune group. > >Good health to all, > >Rick, AIH > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 1999 Report Share Posted August 2, 1999 Rick " Long time no hear. Hope everything is fine. I still kicking I guess. Sue AIH Wisconsin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 1999 Report Share Posted November 8, 1999 Please unsubscribe me from the list. Tazu At 09:24 AM 11/9/99 -0000, you wrote: > >> >There are 15 messages in this issue. > >Topics in today's digest: > > 1. Re: White spots in mouth > From: " Rohrer " <tomandmary@...> > 2. Re: social stories > From: Valleyhts@... > 3. Re: White spots in mouth > From: lois noland <jlois@...> > 4. Re: White spots in mouth > From: " Rohrer " <tomandmary@...> > 5. Re: White spots in mouth > From: lois noland <jlois@...> > 6. Re: social stories > From: lois noland <jlois@...> > 7. Re: gaging improvement > From: Kkscharste@... > 8. Re: White spots in mouth > From: " Rohrer " <tomandmary@...> > 9. Re: White spots in mouth > From: lois noland <jlois@...> > 10. Re: White spots in mouth > From: Dangml@... > 11. Reminder - Online Chat > From: -owneronelist > 12. Re: White spots in mouth > From: lois noland <jlois@...> > 13. Cooking Without Dairy, Sugar or Wheat > From: Loretta L McMahon <lmcmahon@...> > 14. Re: social stories > From: Kkscharste@... > 15. Check out Sumlin Social Stories > From: Whereit@... > > >___________________________________________________________________________ ____ >___________________________________________________________________________ ____ > >Message: 1 > Date: Mon, 8 Nov 1999 21:27:01 -0500 > From: " Rohrer " <tomandmary@...> >Subject: Re: White spots in mouth > >Lois, >OTC is over the counter. Lysine is a supplement available at >drugstores,grocery stores and health food stores. > > Check out Sumlin Social Stories > > <A HREF= " http://members.tripod.com/adm/popup/roadmap.shtml?942119018900 " >Clic >k here: Sumlin Social Stories</A> > >Here are some starters ....They are not exactly in the format of Carol Grey, >but there are some nice ones in there. If you are doing ABA go down to the >very bottom and there is a button to click to go to this place that has tons >of things about ABA. Carol > > >___________________________________________________________________________ ____ >___________________________________________________________________________ ____ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 1999 Report Share Posted December 13, 1999 One of our member, Katrina, age 20, (achondroplasia) received her exam results today and is now a New Zealand Registered Nurse!!!! Probably the one and only dwarf nurse in this country.<<<<<<<<<<<<< congratulations, katrina! i'm an RN in the USA, thats a hell of a tough course to get thru! welcome to the world of nursing! whims Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 1999 Report Share Posted December 31, 1999 > [Original Message] > From: <candidiasisonelist> > <candidiasisonelist> > Date: 12/31/99 5:10:46 AM > Subject: Digest Number 224 > > > > Send blank message to candidiasis-unsubscribeonelist if you want to UNSUBSCRIBE ! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Well Guys here, I use to smoke pot and yes it did seem to help with pain but I have a lot of breathing problems today so it may be like Gretchen said not so good for the lungs. I have heard of it becoming legal for medicinal purposes.....I had an uncle who said that during the wars it was a Godsend. He was about 65 yrs. old when he told me this and that was some 20 yrs.ago so who knows maybe some day it will come back as a legal painkiller and serve some good purpose. CSCluv** http://community.webtv.net/cat926/CATHYSCOOLCATCORNER Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 Hello list, After getting very ill 12/01/99, I am feeling much better. I had been on the Atkins diet and ingesting Nutrasweet products simultaneously, and, after 6 months, they took their toll. My nervous system started shivering, and my immune system shut down. I got severe insomnia, lower back pain, RLS, and all the symptoms of hypothyroidism and CFS.. The doctors gave me little help, so I read up on the internet regarding nutrition and hypothyroidism. I have been taking handfuls of supplements daily, and gave up caffeine and alcohol. I won't bore you with the list of supplements, but this week (after 5 months) I was able to quit all the RXs and pain relievers, and my RLS and insomnia is gone. All that remains is a little lower back pain. I thank you for all the info I received from this group, and will respond to emails if you want the list of supplements I've been taking. Regards, Fuller gary.l.fuller.-nd@... Message: 3 Date: Mon, 01 May 2000 19:38:45 -0000 From: cajunshrimp@... Subject: Acupuncture as a treatment?? Has anyone tried acupuncture to stimulate their tyroid? Or has anyone tried any alternative therapies or diet therapies (successfully?) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2000 Report Share Posted June 26, 2000 Can anyone tell me how to get info on the toilet training program Dr. Carbone, recommends, I think it's by Fox & Ash -something. I know he mentioned it as his #1 wkshop. Also, for those of you who have potty trained did you look for certain signs to help decide if it was time to start or did you just decide it's time (that's kind of my thinking right now) My son is 4.5, and has had a disrobing behavior for about two years, we used to pin his clothes on at one time, then just recently he was doing great for maybe eight weeks, now all the sudden the disrobing has come back full force (we wonder if it isn't because we go to the pool almost everyday and are changing clothes alot), with the disrobing comes the getting into the pants business. He disrobes and goes into his pants (BM) usually in one of the bathrooms, but I really don't know that he actually knows the function of the bathroom, I think he just likes the room and he likes to look at himself in mirrors. We have also had a problem getting just one nice BM a day, instead we might get 8 - 10 small ones, 3 - 4 of those he may get to himself if we aren't watching every second! Sorry didn't mean to go into so much detail, but would love to hear from you if you can relate or have the info on the toileting program. Thanks, Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Dear Claudine: I did give the Medical " definition for treatment, and you have to understand that there are some excellent providers out there, and some who should not be working with patient's of this nature at all. In my own practices I always tailor therapy to a patient's needs, understanding, desires, etc. Also, I offer as much information as possible, but, the ultimate decision on treatment or waiting, ALWAYS is the patient's and their " family " . As you said, we do not know very much about the disease and can not predict whether anyone actually will get better or worse. On the same hand, there are many people who have gone from infection to the liver transplant list in less than a year. So, since we do not know as much as we should, everyone is playing " craps " . If you treat early, you may avoid viral replication and further damage, and maybe more will respond. On the other hand, if you treat, you may build a resistance and when something is really needed, you may not have that option. Add all the side effects, and potential problems from them, and no one has a good answer. No one knows why or the hows, but, if your liver is destroyed, the outcome is known. Also, the Genotype can be detected even if the PCR shows undetectable. While the combo is lousy, it is all that's approved at this point. Maybe a cure will come in the next month, or maybe it never will be found in our life time. So, there are many unknowns at this stage, but, from my experiences and what I have read, is that patients should be started on therapy as soon as they can, and the long term rates of remission seem to be related to how early therapy is started after infection and detection. But, I respect what you said, and, again, I would allow you, or anyone else to make the final decision. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Dear Claudine: I did give the Medical " definition for treatment, and you have to understand that there are some excellent providers out there, and some who should not be working with patient's of this nature at all. In my own practices I always tailor therapy to a patient's needs, understanding, desires, etc. Also, I offer as much information as possible, but, the ultimate decision on treatment or waiting, ALWAYS is the patient's and their " family " . As you said, we do not know very much about the disease and can not predict whether anyone actually will get better or worse. On the same hand, there are many people who have gone from infection to the liver transplant list in less than a year. So, since we do not know as much as we should, everyone is playing " craps " . If you treat early, you may avoid viral replication and further damage, and maybe more will respond. On the other hand, if you treat, you may build a resistance and when something is really needed, you may not have that option. Add all the side effects, and potential problems from them, and no one has a good answer. No one knows why or the hows, but, if your liver is destroyed, the outcome is known. Also, the Genotype can be detected even if the PCR shows undetectable. While the combo is lousy, it is all that's approved at this point. Maybe a cure will come in the next month, or maybe it never will be found in our life time. So, there are many unknowns at this stage, but, from my experiences and what I have read, is that patients should be started on therapy as soon as they can, and the long term rates of remission seem to be related to how early therapy is started after infection and detection. But, I respect what you said, and, again, I would allow you, or anyone else to make the final decision. Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Dear Libby: Most people begin to feel better fairly soon after treatment, usually within the first week or two. But, everyone's body is different, and it take a few weeks or months to a year, for your body to return to " normal " . Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 Dear Libby: Most people begin to feel better fairly soon after treatment, usually within the first week or two. But, everyone's body is different, and it take a few weeks or months to a year, for your body to return to " normal " . Marty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 --- 2byteme@... wrote: > On the same > hand, there are many people who have gone from > infection to the liver > transplant list in less than a year. Are you saying from infection, or diagnosis, to the liver transplant list in less than a year? There is a big difference there! I have never heard of anyone going from becoming infected with HCV to liver damage so severe they need a transplant in that amount of time. Not from HCV. All literature says 20 to 30 years of infection before cirrhosis, if it is going to occur. The person would have had to have had some pre-existing liver damage from some other cause. So, since we do > not know as much as > we should, everyone is playing " craps " . If you treat > early, you may > avoid viral replication and further damage, and > maybe more will respond. Most people don't know early. Most have had this many years before they are diagnosed. We already missed early!! > On the other hand, if you treat, you may build a > resistance and when > something is really needed, you may not have that > option. This is something most people are never told about prior to treatment. And I don't believe that the fact that if you are a non-responder that the remaining virus is in all likelihood going to be resistant to interferon should keep a person from ever taking treatment. But I do think that, since it's a " crap shoot " , you should first do everything you can to give yourself the best odds possible! Just treating 'early' isn't good enough, especially since by the time we know we've got HCV it's been years already. If a person has any factors that are lowering his odds of responding to treatment, then the treatment needs to be re-evaluated, and adjusted to make it as effective as possible for that person. The first round of treatment is a persons best shot at it. Non-responders have a very, very slim chance of responding to retreatment with any interferon-based treatment, which is the only thing available now and anytime in the near future. >Also, the Genotype can be detected > even if the PCR > shows undetectable. If there is no detectable HCV-RNA how can a genotype be determined? I know of two people who could not be genotyped because there was no detectable HCV-RNA. Take care, Claudine ===== Claudine claudinecrews@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2000 Report Share Posted July 22, 2000 --- 2byteme@... wrote: > On the same > hand, there are many people who have gone from > infection to the liver > transplant list in less than a year. Are you saying from infection, or diagnosis, to the liver transplant list in less than a year? There is a big difference there! I have never heard of anyone going from becoming infected with HCV to liver damage so severe they need a transplant in that amount of time. Not from HCV. All literature says 20 to 30 years of infection before cirrhosis, if it is going to occur. The person would have had to have had some pre-existing liver damage from some other cause. So, since we do > not know as much as > we should, everyone is playing " craps " . If you treat > early, you may > avoid viral replication and further damage, and > maybe more will respond. Most people don't know early. Most have had this many years before they are diagnosed. We already missed early!! > On the other hand, if you treat, you may build a > resistance and when > something is really needed, you may not have that > option. This is something most people are never told about prior to treatment. And I don't believe that the fact that if you are a non-responder that the remaining virus is in all likelihood going to be resistant to interferon should keep a person from ever taking treatment. But I do think that, since it's a " crap shoot " , you should first do everything you can to give yourself the best odds possible! Just treating 'early' isn't good enough, especially since by the time we know we've got HCV it's been years already. If a person has any factors that are lowering his odds of responding to treatment, then the treatment needs to be re-evaluated, and adjusted to make it as effective as possible for that person. The first round of treatment is a persons best shot at it. Non-responders have a very, very slim chance of responding to retreatment with any interferon-based treatment, which is the only thing available now and anytime in the near future. >Also, the Genotype can be detected > even if the PCR > shows undetectable. If there is no detectable HCV-RNA how can a genotype be determined? I know of two people who could not be genotyped because there was no detectable HCV-RNA. Take care, Claudine ===== Claudine claudinecrews@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 ---------- >From: claudine intexas <claudineintexas@...> > Are you saying from infection, or diagnosis, to the > liver transplant list in less than a year? - Its called rapid fulminant HCV. A small percentage of people infected with HCV respond to it in this way. Liver death is very quick for them. It is not mentioned too often. gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 ---------- >From: claudine intexas <claudineintexas@...> > Are you saying from infection, or diagnosis, to the > liver transplant list in less than a year? - Its called rapid fulminant HCV. A small percentage of people infected with HCV respond to it in this way. Liver death is very quick for them. It is not mentioned too often. gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Thank you all for answering my question. I got Hep C thru blood transfusions for Sickle-Cell decease. Sickle cell is a very painful & debilitating decease, so sometimes I confuse my symptoms. But lately my hemoglobin counts have been normal, but I still feel very fatigue, so by your answers I can see that it's probably the Hep C that's causing the fatigue and abdominal pain. I have an appt with the Liver guy next week, so let's see what he says. Thank you all for the support. I hope every one had a nice Christmas & I wish you all a healthy & wonderful New Year. Love, Ada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2001 Report Share Posted December 27, 2001 Hey I'm glad to know we helped you....Please stay in touch regardless if you are going to the Dr. or not...We just like the chit chat we can all share but let us know what the liver Dr. says ok...My Christmas was good and I hope the New Year brings a cure for this damn dragon we keep trying to slay......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2001 Report Share Posted December 28, 2001 I hope things go well for you. I have heard that they are making progress on treating sickle cell, I hope that you can find some relief on both fronts.. Good luck. -dz- --- adapena1@... wrote: > Thank you all for answering my question. I got Hep > C thru blood transfusions > for Sickle-Cell decease. Sickle cell is a very > painful & debilitating > decease, so sometimes I confuse my symptoms. But > lately my hemoglobin counts > have been normal, but I still feel very fatigue, so > by your answers I can see > that it's probably the Hep C that's causing the > fatigue and abdominal pain. > I have an appt with the Liver guy next week, so > let's see what he says. > Thank you all for the support. > I hope every one had a nice Christmas & I wish you > all a healthy & wonderful > New Year. > Love, > Ada > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2004 Report Share Posted October 26, 2004 Funny I had surgery where they shaved my big toe, and took off my ganglion cyst on 10/7. When did you break it? Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 Ok. I am REALLy behind on the posts. But I have to ask...this " Spot Shot " Is it carpet cleaner or laundry spot remover? I've looke all through the carpet stuff. I accidently bought the cats food with die in it so now I have yucky stains on my new white carpet...well the apartment's new white carpet. Terry is pretty crappy at the domestic chores too. I vow that if I ever have a son he'll learn to be a great homemaker as well as breadwinner...just in case. And I won't be evil to his wife for not cooking/cleaning for him 24/7. Terry's mom doted/dotes on him all the time and expects me to do the same. No wonder he can't scrub a toilet or sift a cat box. Yeesh. a Who had two somewhat active days outside this weekend hiking. -- _______________________________________________ Find what you are looking for with the Lycos Yellow Pages http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp?SRC\ =lycos10 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2004 Report Share Posted December 12, 2004 a, You can buy some stuff called Folex at Home Depot that will get the stains out. Re: Digest Number 224 Ok. I am REALLy behind on the posts. But I have to ask...this " Spot Shot " Is it carpet cleaner or laundry spot remover? I've looke all through the carpet stuff. I accidently bought the cats food with die in it so now I have yucky stains on my new white carpet...well the apartment's new white carpet. Terry is pretty crappy at the domestic chores too. I vow that if I ever have a son he'll learn to be a great homemaker as well as breadwinner...just in case. And I won't be evil to his wife for not cooking/cleaning for him 24/7. Terry's mom doted/dotes on him all the time and expects me to do the same. No wonder he can't scrub a toilet or sift a cat box. Yeesh. a Who had two somewhat active days outside this weekend hiking. -- _______________________________________________ Find what you are looking for with the Lycos Yellow Pages http://r.lycos.com/r/yp_emailfooter/http://yellowpages.lycos.com/default.asp ?SRC=lycos10 Quote Link to comment Share on other sites More sharing options...
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