Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Patti, I found it funny when you said the doctor asked you if you were a physician. Today, I asked my husbands hepatologist if I could attend a lecture he was giving for primary care physicians on when to refer patients with cholestatic liver disease to a hepatologist. He said I don't have to come because I already know more than they do. I guess belonging to this group gives us quite an education! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 In our UCLA evaluation Tuesday we learned that the dietary restrictions depend a lot on what level of the disease a person is. If you are losing muscle they want you to make sure you have enough protein but if you are at the more advanced stage where you are having trouble processing the protein and are having memory loss or confusion then you have to limit protein. They prefer that you get your protein from vegetables protein than meat and should limit red meat to once or twice a week. Fish is good. Dairy is a good source unless you are allergic and lactose free is better for those who have a dairy intolerance which is often because of the lactose. Fat really needs to be limited in the case of PSC where as for some of the other liver diseases it's not as important. Cooking fats should not be saturated fats. Salt intake seemed to be a major restriction. She said if there is any swelling in the legs, stomach, hands etc. it should be kept to 1000mg, to 2000mg a day and if there is no swelling you could go up to I think it was 4000 but I'm not real sure. Please someone correct me if I'm wrong. Can foods are reeeeal bad. Hot dogs, pickles etc were on the no-no list. Sugar is not a problem as long as one wasn't diabetic. That concerned me because Phil eats a lot of sweets (I'm not supposed to have sweets so I was trying to find a reason why he couldn't - -NOT, he has to hide his candy bars from me) They actually want one to eat a lot of calories unless they are overweight so as not to become malnutritioned. Phil has been restricting his red meat (we eat mostly chicken and fish). Sometimes all these dietary restrictions seem not to be worth it. I know that restricting certain things can make a big difference because I've gone that route myself (I have a lot of allergies to things and a yeast intolerance and a lot of things create yeast) but when you get into too many restrictions mealtime becomes such a burden you hardly want to eat at all and it's almost impossible to stick with it. I know because I've been there and it's really hard if you attend activities where there are sweets prevalent. It takes a tremendous amount of will power. The one thing with Phil that seemed to stay up was his Alk Phos so if the SAMe were to help that it might be worth reconsidering if it really were to help & we would find the money, at this point the doctor doesn't seem concerned with his levels and didn't seem to make a difference but we might consider it in the future. Good luck in your researching and thanks for sharing the information you have found with us. Peg Patti McCormick wrote: > I agree SAMe is far too expensive but we believe the benefits will > outweigh that. The Vit B and folic acid will eliminate any risk of > heart problems. Mike's Alk Phos is the lowest it has been since 1992 > when his liver functions started anupward trend (they blamed it on > alcohol back then!).....His Dr. was very happy with a drop from almost > 600 to 299 in two months. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Thanks for sharing the dietary info....I know what you mean, I feel like I cook two meals here, one for Mike and one for the rest of us. In some ways, it's made me more aware of what we put in our bodies. I found out an interesting thing, that safflower oil is good for people with liver problems because the body doesn't need bile to digest it, so I got a big bottle of that stuff today. Mike has cut down to 1% milk, low fat cheese and although we are devout lovers of butter, (I still indulge), he has switched to becel, all these little things have amounted to him not suffering anymore of those gallbladder like pains after he eats fatty things. We are so aware of everything now. I have been in touch with a clinic in Mexico and spoke at great length with a Dr. today who returned my call. He was very informative about everything and claims to have a treatment for PSC that involves the immune system but not steroids. Something natural along with some kind of magnetic therapy, of course alot of his words were too big for me. His clinic has a web site and I bookmarked it at work, of course these things are expensive and those of us dealing with this are already cash strapped because of drugs, supplements and the inability to work, again the rich have the advantages eh? Anyway, we will wait and have our appt. in a few weeks with Dr. LaValley and see what transpires, in the meantime, my quest will continue..... I had to laugh, the Dr. asked me if I was a physician.....I must have sounded semi intelligent!!! Patti Peggy Alfeld wrote: In our UCLA evaluation Tuesday we learned that the dietary restrictions depend a lot on what level of the disease a person is. If you are losing muscle they want you to make sure you have enough protein but if you are at the more advanced stage where you are having trouble processing the protein and are having memory loss or confusion then you have to limit protein. They prefer that you get your protein from vegetables protein than meat and should limit red meat to once or twice a week. Fish is good. Dairy is a good source unless you are allergic and lactose free is better for those who have a dairy intolerance which is often because of the lactose. Fat really needs to be limited in the case of PSC where as for some of the other liver diseases it's not as important. Cooking fats should not be saturated fats. Salt intake seemed to be a major restriction. She said if there is any swelling in the legs, stomach, hands etc. it should be kept to 1000mg, to 2000mg a day and if there is no swelling you could go up to I think it was 4000 but I'm not real sure. Please someone correct me if I'm wrong. Can foods are reeeeal bad. Hot dogs, pickles etc were on the no-no list. Sugar is not a problem as long as one wasn't diabetic. That concerned me because Phil eats a lot of sweets (I'm not supposed to have sweets so I was trying to find a reason why he couldn't - -NOT, he has to hide his candy bars from me) They actually want one to eat a lot of calories unless they are overweight so as not to become malnutritioned. Phil has been restricting his red meat (we eat mostly chicken and fish). Sometimes all these dietary restrictions seem not to be worth it. I know that restricting certain things can make a big difference because I've gone that route myself (I have a lot of allergies to things and a yeast intolerance and a lot of things create yeast) but when you get into too many restrictions mealtime becomes such a burden you hardly want to eat at all and it's almost impossible to stick with it. I know because I've been there and it's really hard if you attend activities where there are sweets prevalent. It takes a tremendous amount of will power. The one thing with Phil that seemed to stay up was his Alk Phos so if the SAMe were to help that it might be worth reconsidering if it really were to help & we would find the money, at this point the doctor doesn't seem concerned with his levels and didn't seem to make a difference but we might consider it in the future. Good luck in your researching and thanks for sharing the information you have found with us. Peg Patti McCormick wrote: > I agree SAMe is far too expensive but we believe the benefits will > outweigh that. The Vit B and folic acid will eliminate any risk of > heart problems. Mike's Alk Phos is the lowest it has been since 1992 > when his liver functions started anupward trend (they blamed it on > alcohol back then!).....His Dr. was very happy with a drop from almost > 600 to 299 in two months. ------------------------------------------------------------------------ Want to send money instantly to anyone, anywhere, anytime? 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Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 I know, I'm still chuckling about it and I think you are right.....we do know more than some of the Dr.'s..... Feather in our caps I think! Patti Rnurse987@... wrote: Patti, I found it funny when you said the doctor asked you if you were a physician. Today, I asked my husbands hepatologist if I could attend a lecture he was giving for primary care physicians on when to refer patients with cholestatic liver disease to a hepatologist. He said I don't have to come because I already know more than they do. I guess belonging to this group gives us quite an education! Liz ------------------------------------------------------------------------ Looking for educational tools for your kids? Find everything you need at SmarterKids.com http://click./1/645/4/_/24674/_/947816322/ -- Check out your group's private Chat room -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2000 Report Share Posted January 14, 2000 Hi Peg -- again! I know you remember the whole story about my " liver doc " or do you not remember? Anyway, he told me that diet had nothing to do with PSC or the liver. He told me this 4 years ago. This is the kind of doc that all of the " old timers " begged me to quit seeing (couldn't quit because of the lack of medical insurance and Duke has been good to us by letting us set up a payment plan). I have posted this several times, but have not had an answer yet. Has anyone contracted diabetes while having PSC? It is just very coincidental that everything in my insides seem to be going down hill very, very fast. I wish that the pain would leave like all of the diseases I have had since PSC. Hugs, Biddy Re: Dietary restrictions > In our UCLA evaluation Tuesday we learned that the dietary restrictions > depend a lot on what level of the disease a person is. If you are > losing muscle they want you to make sure you have enough protein but if > you are at the more advanced stage where you are having trouble > processing the protein and are having memory loss or confusion then you > have to limit protein. They prefer that you get your protein from > vegetables protein than meat and should limit red meat to once or twice > a week. Fish is good. Dairy is a good source unless you are allergic > and lactose free is better for those who have a dairy intolerance which > is often because of the lactose. Fat really needs to be limited in the > case of PSC where as for some of the other liver diseases it's not as > important. Cooking fats should not be saturated fats. > > Salt intake seemed to be a major restriction. She said if there is any > swelling in the legs, stomach, hands etc. it should be kept to 1000mg, > to 2000mg a day and if there is no swelling you could go up to I think > it was 4000 but I'm not real sure. Please someone correct me if I'm > wrong. > Can foods are reeeeal bad. Hot dogs, pickles etc were on the no-no > list. > > Sugar is not a problem as long as one wasn't diabetic. That concerned > me because Phil eats a lot of sweets (I'm not supposed to have sweets so > I was trying to find a reason why he couldn't - -NOT, he has to hide his > candy bars from me) They actually want one to eat a lot of calories > unless they are overweight so as not to become malnutritioned. > > Phil has been restricting his red meat (we eat mostly chicken and > fish). > > Sometimes all these dietary restrictions seem not to be worth it. I > know that restricting certain things can make a big difference because > I've gone that route myself (I have a lot of allergies to things and a > yeast intolerance and a lot of things create yeast) but when you get > into too many restrictions mealtime becomes such a burden you hardly > want to eat at all and it's almost impossible to stick with it. I know > because I've been there and it's really hard if you attend activities > where there are sweets prevalent. It takes a tremendous amount of will > power. > > The one thing with Phil that seemed to stay up was his Alk Phos so if > the SAMe were to help that it might be worth reconsidering if it really > were to help & we would find the money, at this point the doctor doesn't > seem concerned with his levels and didn't seem to make a difference but > we might consider it in the future. > > Good luck in your researching and thanks for sharing the information you > have found with us. > > Peg > > Patti McCormick wrote: > > > I agree SAMe is far too expensive but we believe the benefits will > > outweigh that. The Vit B and folic acid will eliminate any risk of > > heart problems. Mike's Alk Phos is the lowest it has been since 1992 > > when his liver functions started anupward trend (they blamed it on > > alcohol back then!).....His Dr. was very happy with a drop from almost > > 600 to 299 in two months. > > > > > ------------------------------------------------------------------------ > Want to send money instantly to anyone, anywhere, anytime? > You can today at X.com - and we'll give you $20 to try it! Sign > up today at X.com. It's quick, free, & there's no obligation! > http://click./1/332/4/_/24674/_/947802161/ > > -- Create a poll/survey for your group! > -- /vote?listname= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 Biddy, Diabetes is an auto-immune disease. Most researchers believe that PSC is an auto-immune diesease. If you have one auto-immune disease, it's very common to have others as well. As you know, before I lost weight, I was considered " borderline " diabetic. After losing over 60lbs, I no longer have a problem with elevated glucose levels. And, as I said before, there are a lot of foods made out there for Diabetics, and they don't taste that bad. It may take a little getting used to... but once you do, they're actually really good. I had gotten off my diet for a little while, but now that I'm getting back on it... I think I may stick to the " diabetic diet " . My big problem is staying away from Sodium. I'm only supposed to have 2,000mg a day of it... but of course, I don't pay much attention to that. I end up paying for it later with swollen legs, belly, face, and hands. Everything has sodium in it... and it tastes soooooo good! In the hospital, they give me pepper, and Mrs. Dash to flavor my food. YUCK! Anyway, one company to look for is called 50/50. They sell excellent diabetic cookies, snacks, and condiments. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 Hope you can get on medicare soon and get a real doc. Check with ALF and see if you can get some of their brochures. Then show them to this non-believeing doc who says there is no pain associated with PSC. Peg Biddy Santon wrote: > Hi Peg -- again! > I know you remember the whole story about my " liver doc " or do you not > remember? > Anyway, he told me that diet had nothing to do with PSC or the liver. He > told me this 4 years ago. This is the kind of doc that all of the " old > timers " begged me to quit seeing (couldn't quit because of the lack of > medical insurance and Duke has been good to us by letting us set up a > payment plan). > I have posted this several times, but have not had an answer yet. > Has anyone contracted diabetes while having PSC? It is just very > coincidental that everything in my insides seem to be going down hill very, > very fast. I wish that the pain would leave like all of the diseases I have > had since PSC. > Hugs, > Biddy > Re: Dietary restrictions > > > In our UCLA evaluation Tuesday we learned that the dietary restrictions > > depend a lot on what level of the disease a person is. If you are > > losing muscle they want you to make sure you have enough protein but if > > you are at the more advanced stage where you are having trouble > > processing the protein and are having memory loss or confusion then you > > have to limit protein. They prefer that you get your protein from > > vegetables protein than meat and should limit red meat to once or twice > > a week. Fish is good. Dairy is a good source unless you are allergic > > and lactose free is better for those who have a dairy intolerance which > > is often because of the lactose. Fat really needs to be limited in the > > case of PSC where as for some of the other liver diseases it's not as > > important. Cooking fats should not be saturated fats. > > > > Salt intake seemed to be a major restriction. She said if there is any > > swelling in the legs, stomach, hands etc. it should be kept to 1000mg, > > to 2000mg a day and if there is no swelling you could go up to I think > > it was 4000 but I'm not real sure. Please someone correct me if I'm > > wrong. > > Can foods are reeeeal bad. Hot dogs, pickles etc were on the no-no > > list. > > > > Sugar is not a problem as long as one wasn't diabetic. That concerned > > me because Phil eats a lot of sweets (I'm not supposed to have sweets so > > I was trying to find a reason why he couldn't - -NOT, he has to hide his > > candy bars from me) They actually want one to eat a lot of calories > > unless they are overweight so as not to become malnutritioned. > > > > Phil has been restricting his red meat (we eat mostly chicken and > > fish). > > > > Sometimes all these dietary restrictions seem not to be worth it. I > > know that restricting certain things can make a big difference because > > I've gone that route myself (I have a lot of allergies to things and a > > yeast intolerance and a lot of things create yeast) but when you get > > into too many restrictions mealtime becomes such a burden you hardly > > want to eat at all and it's almost impossible to stick with it. I know > > because I've been there and it's really hard if you attend activities > > where there are sweets prevalent. It takes a tremendous amount of will > > power. > > > > The one thing with Phil that seemed to stay up was his Alk Phos so if > > the SAMe were to help that it might be worth reconsidering if it really > > were to help & we would find the money, at this point the doctor doesn't > > seem concerned with his levels and didn't seem to make a difference but > > we might consider it in the future. > > > > Good luck in your researching and thanks for sharing the information you > > have found with us. > > > > Peg > > > > Patti McCormick wrote: > > > > > I agree SAMe is far too expensive but we believe the benefits will > > > outweigh that. The Vit B and folic acid will eliminate any risk of > > > heart problems. Mike's Alk Phos is the lowest it has been since 1992 > > > when his liver functions started anupward trend (they blamed it on > > > alcohol back then!).....His Dr. was very happy with a drop from almost > > > 600 to 299 in two months. > > > > > > > > > > ------------------------------------------------------------------------ > > Want to send money instantly to anyone, anywhere, anytime? > > You can today at X.com - and we'll give you $20 to try it! Sign > > up today at X.com. It's quick, free, & there's no obligation! > > http://click./1/332/4/_/24674/_/947802161/ > > > > -- Create a poll/survey for your group! > > -- /vote?listname= & m=1 > > > > > > > > ------------------------------------------------------------------------ > WEMedia.com empowers persons with disabilities to build a strong and vibrant community. > http://click./1/682/4/_/24674/_/947945497/ > > -- 20 megs of disk space in your group's Document Vault > -- /docvault//?m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2000 Report Share Posted January 15, 2000 Dear , I am doing very good. I have been following the diet, have lost 18 pounds and now, with Glucontrol, my tests are never above 130 -- mostly in the 110's. I am so excited, but just another thing to deal with. At least I can control the Diabetes and if I don't, it is MY fault. Unlike PSC. Hugs, Biddy Re: Dietary restrictions > Biddy, > Diabetes is an auto-immune disease. Most researchers believe that PSC > is an auto-immune diesease. If you have one auto-immune disease, it's very > common to have others as well. As you know, before I lost weight, I was > considered " borderline " diabetic. After losing over 60lbs, I no longer have > a problem with elevated glucose levels. And, as I said before, there are a > lot of foods made out there for Diabetics, and they don't taste that bad. It > may take a little getting used to... but once you do, they're actually really > good. I had gotten off my diet for a little while, but now that I'm getting > back on it... I think I may stick to the " diabetic diet " . My big problem is > staying away from Sodium. I'm only supposed to have 2,000mg a day of it... > but of course, I don't pay much attention to that. I end up paying for it > later with swollen legs, belly, face, and hands. Everything has sodium in > it... and it tastes soooooo good! In the hospital, they give me pepper, and > Mrs. Dash to flavor my food. YUCK! Anyway, one company to look for is > called 50/50. They sell excellent diabetic cookies, snacks, and condiments. > Love, > > > ------------------------------------------------------------------------ > For the fastest and easiest way to backup your files and, access them from > anywhere. Try @backup Free for 30 days. Click here for a chance to win a > digital camera. > http://click./1/337/4/_/24674/_/947953890/ > > -- Check out your group's private Chat room > -- /ChatPage?listName= & m=1 > > > Quote Link to comment Share on other sites More sharing options...
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