Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Zdenka, I'm sorry you have to deal with this, but at least a diagnosis has been found. Many people go so long without diagnosis that the disease is far advanced. Keep in mind that a study in England shows that most people who respond to conventional therapy (and none other has proved effective) have normal lifespans. Life with AIH is a little different, but it is very good. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Missy, my opinion is very strongly that you should discuss your illness with your children. They certainly know something is wrong. Having knowledge will lessen their fears and allow them to know what help you need, and why you need it. I imagine the five-year-old and the 15-year-old will need to know different things. Before you speak to them, make sure you have your information together. Fibrosis stage 3 may not be nearly as bad as you think it is. You may very well have a normal life span. Many people with AIH, even if they have a transplant, go on to very active, productive lives. On the other hand, you may have to deal with fatigue for a long time and need help in arranging your life around it. That's not the end of the world -- it just takes some changes and support. Harper In a message dated 3/13/05 2:54:00 AM, writes: .. . . I asked my husband if we should talk with our two children one is 15yrs. and the other is 5yrs. They know that I have been really sick. . . . Missy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Kelli, don't overdo it. You may find you are running on "false energy". A lot of us, early in Prednisone treatment, are very energetic and do a lot -- and then we crash hard, taking a long time to recover. That crash can be very dispiriting. Sometimes it may be better to go more slowly, do a little at a time, rather than run out of steam entirely. Harper In a message dated 3/13/05 2:54:00 AM, writes: .. . . I am wired. up since 5 this morning buzzing like a busy bee, and up at 3:00 am previous morning. I figure that I will take it an run with it since it's the first time honestly since the first of the year that I have energy. So I figure I can get a head on everything . . . Kelli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 I found this in wrongdiagnosis.com. The term 'prevalence' of Autoimmune Hepatitis usually refers to the estimated population of people who are managing Autoimmune Hepatitis at any given time. Prevalance of Autoimmune Hepatitis: 1,156 people in the USA 1996 Prevalance Rate: approx 1 in 235,294 or 0.00% or 1,156 people in USA My interpretation of this is that the total number of people in the U.S. with AIH, as of 1996, was about 1200. That's a lot fewer than I thought. The first couple of months I was diagnosed, five years ago, I met two people with AIH, not in medical settings, but just by chance! Since then I've met no one else. Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Harper, Thanks for finding that out. Kelli > I found this in wrongdiagnosis.com. > > The term 'prevalence' of Autoimmune Hepatitis usually refers to the estimated > population of people who are managing Autoimmune Hepatitis at any given time. > > > Prevalance of Autoimmune Hepatitis: 1,156 people in the USA 1996 > Prevalance Rate: approx 1 in 235,294 or 0.00% or 1,156 people in USA > > My interpretation of this is that the total number of people in the U.S. with > AIH, as of 1996, was about 1200. That's a lot fewer than I thought. The > first couple of months I was diagnosed, five years ago, I met two people with > AIH, not in medical settings, but just by chance! Since then I've met no one > else. > Harper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2005 Report Share Posted March 13, 2005 Harper, Your right, I have a return of the nausea today. It did feel really good to get some extra things done, and get a little more organized. Somehow it gives me a peace of mind to know that I have things set up so that the household duties are spread out for my family, and we can keep the kaos to a minimum. That is how I seem to find peace in this crazy life, and I am sure peace with this crazy disease. It is weird to sit here thinking that I really have no idea how this is really going to take it's tole on me and play out, I could have only a few years before I get so bad that I need a liver transplant, or I may have many years of struggle before I reach that point if ever, As do all of us with this disease. I feel like I have to prepare for the worst and hope for the best. I will take more care from here on out. So are you doing well right now with your disease? Kelli > Kelli, don't overdo it. You may find you are running on " false energy " . > A lot of us, early in Prednisone treatment, are very energetic and do a lot > -- and then we crash hard, taking a long time to recover. That crash can be > very dispiriting. Sometimes it may be better to go more slowly, do a little > at a time, rather than run out of steam entirely. > Harper > > In a message dated 3/13/05 2:54:00 AM, LiverSupport- L writes: > > > . . . I am wired. up since 5 this morning buzzing like a > > busy bee, and up at 3:00 am previous morning. I figure that I will > > take it an run with it since it's the first time honestly since the > > first of the year that I have energy. So I figure I can get a head > > on everything . . . > > Kelli > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2005 Report Share Posted March 14, 2005 YIKES! These are horrible odds..no wonder they don’t how to treat it! Debby Re: [ ] Digest Number 3891 I found this in wrongdiagnosis.com. The term 'prevalence' of Autoimmune Hepatitis usually refers to the estimated population of people who are managing Autoimmune Hepatitis at any given time. Prevalance of Autoimmune Hepatitis: 1,156 people in the USA 1996 Prevalance Rate: approx 1 in 235,294 or 0.00% or 1,156 people in USA My interpretation of this is that the total number of people in the U.S. with AIH, as of 1996, was about 1200. That's a lot fewer than I thought. The first couple of months I was diagnosed, five years ago, I met two people with AIH, not in medical settings, but just by chance! Since then I've met no one else. Harper Group Rules 1. Please no religious, political, race or sexual preference discussions. 2. NO slamming of other members, advertising or vulgarity. Thank you! To UNsubscribe send a blank e-mail to -unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Dear Harper, Hi! That was me who said that there are about 1100 people in the US with AIH. I will try to find the article for you, may take a while because I have been really busy with work. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2005 Report Share Posted July 5, 2005 I just copied this off another forum I belong to....and thought folks here might be interested. Ronni " GOL " claims they have a " patented " process that keeps probiotic levels high for lengthy periods, but in graduate school, all of my advisers said patent claims protect the " process " that is claimed, and that crucial details and the claims themselves don't always work. At a previous employer, we had 4 patents for the same process, and the patent claims weren't as great as they claimed to be. (No idea why this is, as patents and attorneys are expensive.) Anyway, I hope this helps list members! Consumer Reports tested yogurt and probiotic supplements for their levels of active cultures, and found Garden of Life's Primal Defense HSO to have lower amts of active cultures although it was 3-6x more expensive than supplements with higher amts. The study appears in the July '05 issue (p. 34-5). (www.ConsumerReports.org) " CR " recommended products with at least 1 billion colony-forming units (CFUs), the minimum thought to benefit health. Products with 1-10B CFUs tend to cost less than those with higher levels, CR says. CR found that 4 of the 14 supplements had no more than half of their claimed CFUs at testing time, although a higher amt was claimed at the time of mfr. Origin Acidophilus, sold at Target, claimed 100 million CFUs per serving, but was found to have 20 million, for example. All of the products tested were listed in the " highest " or " lower " categories and listed by cost per serving (yogurt) or per day (supplements). No CFU count was reported for the CFUs claimed or what CR's tests found. The findings, listed under " highest " or " lower " probiotic levels and listed by cost (in cents if less than 100 (i.e., $1.00): HIGHEST Yogurts (all strawberry flavored): Breyers Fruit on the Btm Lowfat (85), Columbo Lt (85), Dannon Fruit on the Btm Lowfat (60), Stonyfield Farm Organic Lowfat (890), Youplait Original Lowfat (70). Supplements: bio-K Plus Acidophilus/Casei (liq'd), (450); Continental Natural Acidophilus culture (liqd) (117); Dannon DavActive Immunity (liqd) (60); Twin Lab Super Acidophilus (90). [the lst 2 entries here had lower levels than claimed by the mfr.] HIGH Supplements: Country Life Power-Dohpilus, 36; Natrol Acidophilus, 15; Nature Made Acidophilus, 40; Nature's Bounty Extra Strength Acidophilus w/Pectin, 17; Nature's Way Primadophilus Reuteri, 42 (lower amt than mfr claimed); Nutrition Now PB-8 Acidophilus, 37; Solaray Acidophilus plus Goat's Milk, 24 (lower amt than mfr's claims); Solgar Advanced Acidophilus, 18 (limited supply); Vitamin World Milk Free Acidophilus, 18 (lower amt than mfr claimed). LOWER Supplements: American Health Acidophilus (liqd), 189 (lower amt than mfr claimed); Enzymatic Therapy Acidophilus Pearls, 46; Garden of Life Primal Defense HSO, 120; Origin (Target sells) Acidohpilus, 6 (that's $.06) (lower amt than mfr claims); Sundown Acidophilus XTRA, 17. For the number, " 17 " (or (17) would be $.17 or 17 cts; " 189 " would be $1.89. CR says to be wary of claims that probiotics " strengthen " the body or promote " better health " as such claims don't require FDA approval. CR said all supplements disintegrated properly (meaning the bacteria would be released in the body), but that didn't mean they'd be released in the intestines. CR says that in theory, enteric-coated pills Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 5, 2005 Report Share Posted July 5, 2005 HI all! :-) I have also been doing this pretty much on my own. My peds dr said that GFCF diet woudln't help...and was tooo limiting...and tooo much work.....well he is right on one point...it is a lot of work...esp if you do it from scratch as we do. I am pretty new and am trying to keep notes and write a journal of all the input I find...but I run into a lot of abreviations that I haven't a clue about. Is there a place to find them?? Also would someone mind sharing their Kefir grains with me....I would really appreciate it. I did try that place with the names and didn't get any response. So would really appreciate it... Also could anyone tell me if green coconuts are high in phenols too.....would like to try them but the kids are really phenol sensitive. I am going to get some of the other main enzymes first...i don't know that I should try the no-phenol first... thanks Ronni Quote Link to comment Share on other sites More sharing options...
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