Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Hi Steve, Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called " Hepatitis C Cookbook: Easy & Delicious Recipes " from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google " HCV high ammonia level " and you'll see the horror stories I read, backed up by medical research. > > Rick, > > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack. > > KTF > Steve B. > > > --------------------------------- > Looking for a deal? Find great prices on flights and hotels with FareChase. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Rick , Aetna has nurses and nutritionists on staff ...... I used to have Aetna insurance , their nurses would call me once a month for health updates and their nutritionists would call also ..Here is the link to the Aetna site that says nutritionist's are covered http://www.aetna.com/cpb/medical/data/1_99/0049.html or have things changed ? Re:Ammonia levels Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 wow Rick, that sounds just awful! Im so sorry you had such a bad time, I was out of the hosp within 12 hours of having my surgery.. Thank God your docs found the combination that helped you too.. I have seen some mighty miracles in my life so I will always keep everyone whether or not they believe in my prayers.. take care Rick,, and keep us posted how you are doing! I'll bet when you get to see a dietician you will get your ammonia under control.. jaxRick Kipp <rickkipp@...> wrote: Well, I guess all went badly that could! Lungs filled up, one collapsed; heart had problems; almost went into a coma; but, the chief problem was apparently the three completely different infections I got in the hospital that I had not had before. They were very odd, until one Doc came up with an anti-viral combo that might work on all three without further harming the liver. That began working its wonders within a few day, then onwards and upwards, with a sidewards here & there! Seriously though, I truly appreciate you as a believer and do give you all my thanks and hugs for praying for ALL of us.>> Hi Rick> prayers will be said for you by me, Im a believer!!! > Why did you have such a hard time with the gallbladder surgery? I had mine out the end of 05 and didnt have an ounce of trouble,, was it related to your liver disease or did you ahve some unexpected problem? just wondering! > keep laughing, as laughter is one of the best meds for our livers and our immune systems! > hugs> jax> Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 wow Rick, that sounds just awful! Im so sorry you had such a bad time, I was out of the hosp within 12 hours of having my surgery.. Thank God your docs found the combination that helped you too.. I have seen some mighty miracles in my life so I will always keep everyone whether or not they believe in my prayers.. take care Rick,, and keep us posted how you are doing! I'll bet when you get to see a dietician you will get your ammonia under control.. jaxRick Kipp <rickkipp@...> wrote: Well, I guess all went badly that could! Lungs filled up, one collapsed; heart had problems; almost went into a coma; but, the chief problem was apparently the three completely different infections I got in the hospital that I had not had before. They were very odd, until one Doc came up with an anti-viral combo that might work on all three without further harming the liver. That began working its wonders within a few day, then onwards and upwards, with a sidewards here & there! Seriously though, I truly appreciate you as a believer and do give you all my thanks and hugs for praying for ALL of us.>> Hi Rick> prayers will be said for you by me, Im a believer!!! > Why did you have such a hard time with the gallbladder surgery? I had mine out the end of 05 and didnt have an ounce of trouble,, was it related to your liver disease or did you ahve some unexpected problem? just wondering! > keep laughing, as laughter is one of the best meds for our livers and our immune systems! > hugs> jax> Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Thanks, ! I'll get right on that. Things have not changed, so I'm ready to learn more. > > Rick , Aetna has nurses and nutritionists on staff ...... I used to have Aetna insurance , their nurses would call me once a month for health updates and their nutritionists would call also ..Here is the link to the Aetna site that says nutritionist's are covered http://www.aetna.com/cpb/medical/data/1_99/0049.html or have things changed ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Thanks, ! I'll get right on that. Things have not changed, so I'm ready to learn more. > > Rick , Aetna has nurses and nutritionists on staff ...... I used to have Aetna insurance , their nurses would call me once a month for health updates and their nutritionists would call also ..Here is the link to the Aetna site that says nutritionist's are covered http://www.aetna.com/cpb/medical/data/1_99/0049.html or have things changed ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 I'm glad to have helped , having the nutritionist go over your diet ( over the phone usually) is important in controling protein intake . They will give you some good ideals for meals lol Re:Ammonia levels Thanks, ! I'll get right on that. Things have not changed, so I'm ready to learn more.>> Rick , Aetna has nurses and nutritionists on staff ...... I used to have Aetna insurance , their nurses would call me once a month for health updates and their nutritionists would call also ..Here is the link to the Aetna site that says nutritionist's are covered http://www.aetna.com/cpb/medical/data/1_99/0049.html or have things changed ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Think I am going to order the book myself. I like cookbooks, and this sounds like one that will work well for me. Heck, I might even type up the recipes and share them here so that you guys can enjoy it too!! Love Janet Hi Steve,> > Thanks for your response. I am already on lactulose, having doubled > the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I > don't know anything about onions and other vegies. just ordered a > book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from > Amazon. Don't know if it will be worthwhile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 This is good, as a few or us are ordering this cookbook. After trying wor awhile, we should all report on our experiences. My wife's a gourment cook, so she'll invariably make small changes with herbs,etc. > > > Think I am going to order the book myself. > > I like cookbooks, and this sounds like one that will work well for me. > > Heck, I might even type up the recipes and share them here so that you > guys can enjoy it too!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 LOL I'm glad I'm not the only one who got it. I hate needless suffering and from the sounds of hep c I'm not messin with it. Meaning diet. nan Rick Kipp <rickkipp@...> wrote: Let me and everyone else know what you think of the cookbook. Mine should be here anyday, and I'll do the same.--- In Hepatitis C , Pike <magicnan2005@...> wrote>I got the book amazon.com must love me Got a little couch potato? Check out fun summer activities for kids. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Thanks a lot Rick...Take care.Rick Kipp <rickkipp@...> wrote: Hi ! By end stage I mean "end stage liver disease", meaning I guess not the best news out there. However, many of us have been diagnosed with "end stage" and are doing fairly well with it. It certainly does not mean impending death or highly needed liver transplant. I think it's a term describing the liver condition that the "AMA Docs" came up with to scare the snot out of us. Perhaps can better explain this odd phrase.>> Yes, I do have HCV, type 1, end stage: that's why I was asking. I eat no Ready for the edge of your seat? Check out tonight's top picks on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005@...> wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 janet, THAT would be great,, we should at least put a section on the website for recipes that are liver friendly.. I would be happy to help with that myself,, gonna order the book too! love ya hon jackieJanet <doc_jade@...> wrote: Think I am going to order the book myself. I like cookbooks, and this sounds like one that will work well for me. Heck, I might even type up the recipes and share them here so that you guys can enjoy it too!! Love Janet Hi Steve,> > Thanks for your response. I am already on lactulose, having doubled > the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I > don't know anything about onions and other vegies. just ordered a > book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from > Amazon. Don't know if it will be worthwhile. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm@...> wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 I dont know if they will ship you the Peg and Riba because it needs to be kept cool, but all the rest of your meds,, have your doc write you a 30 day script, which you fill at your local pharmacy for immediate use, and then another one for 90 days( with a refil for up to one year) and then send the long one to the meds by mail. As long as you dont have any other prescription med coverage, they will send you your meds by mail. You can go to the website and download the paperwork to fill out and send in with your prescriptions. They say it can take up to 3 weeks to get the meds the first time and then its faster. Then when you get your meds, they send you a slip to send back in immediately so they can get the refil going and will send it to you fairly soon, so you end up having about 6 months worth of meds on hand with no copay.. if you have any further questions about it, email me off line, you can get my email addy on the top of this post.. jax Pike <magicnan2005@...> wrote: OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm > wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 Thanks Jax I'm gonna get on this and its good to know some need to be kept cool. Nan Jackie on <redjaxjm@...> wrote: I dont know if they will ship you the Peg and Riba because it needs to be kept cool, but all the rest of your meds,, have your doc write you a 30 day script, which you fill at your local pharmacy for immediate use, and then another one for 90 days( with a refil for up to one year) and then send the long one to the meds by mail. As long as you dont have any other prescription med coverage, they will send you your meds by mail. You can go to the website and download the paperwork to fill out and send in with your prescriptions. They say it can take up to 3 weeks to get the meds the first time and then its faster. Then when you get your meds, they send you a slip to send back in immediately so they can get the refil going and will send it to you fairly soon, so you end up having about 6 months worth of meds on hand with no copay.. if you have any further questions about it, email me off line, you can get my email addy on the top of this post.. jax Pike <magicnan2005 > wrote: OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm > wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Jackie Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 I used to get my meds for treatment shipped to me, they put it in a Styrofoam box and then had the ice keepers packets in there. They shipped UPS next day service. I liked the boxes because afterwards I would put them in the trunk and store my meat and frozen items in there when I went to Sam's. Which is in Lawton, 45 mins away from me. LOL But seriously the meds arrived in good condition that way. Love JanetJackie on <redjaxjm@...> wrote: I dont know if they will ship you the Peg and Riba because it needs to be kept cool, but all the rest of your meds,, have your doc write you a 30 day script, which you fill at your local pharmacy for immediate use, and then another one for 90 days( with a refil for up to one year) and then send the long one to the meds by mail. As long as you dont have any other prescription med coverage, they will send you your meds by mail. You can go to the website and download the paperwork to fill out and send in with your prescriptions. They say it can take up to 3 weeks to get the meds the first time and then its faster. Then when you get your meds, they send you a slip to send back in immediately so they can get the refil going and will send it to you fairly soon, so you end up having about 6 months worth of meds on hand with no copay.. if you have any further questions about it, email me off line, you can get my email addy on the top of this post.. jax Pike <magicnan2005 > wrote: OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm > wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Jackie Who knows what is around life's corner, so why worry about it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 Rick, I remeber the coma I went into. I would respond only to my name and then only with grunts or so I'm told. The coma lasted two days. Confusion was my main concern. I drove to the grocery store right down the road from my house and couldn't remember how to get home. Then the anxiety triggered in and I finally drove myself around until I found my house. That day I handed my wife my keys and I didn't drive again until 6 weeks after my transplant. I have several days that I couldn't remeber people or places and it was very scary. You are right that diet can't control everything. I went totally veggie before the transplant and it didn't really help. KTF Steve B. Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 thats they way mine came too,, but what I was 'trying' to say is that I dont know if the meds by mail program the VA has will ship those particular meds,, she may need to get them locally or from that pharmacy that ships scherrings product from florida..Janet <doc_jade@...> wrote: I used to get my meds for treatment shipped to me, they put it in a Styrofoam box and then had the ice keepers packets in there. They shipped UPS next day service. I liked the boxes because afterwards I would put them in the trunk and store my meat and frozen items in there when I went to Sam's. Which is in Lawton, 45 mins away from me. LOL But seriously the meds arrived in good condition that way. Love JanetJackie on <redjaxjm > wrote: I dont know if they will ship you the Peg and Riba because it needs to be kept cool, but all the rest of your meds,, have your doc write you a 30 day script, which you fill at your local pharmacy for immediate use, and then another one for 90 days( with a refil for up to one year) and then send the long one to the meds by mail. As long as you dont have any other prescription med coverage, they will send you your meds by mail. You can go to the website and download the paperwork to fill out and send in with your prescriptions. They say it can take up to 3 weeks to get the meds the first time and then its faster. Then when you get your meds, they send you a slip to send back in immediately so they can get the refil going and will send it to you fairly soon, so you end up having about 6 months worth of meds on hand with no copay.. if you have any further questions about it, email me off line, you can get my email addy on the top of this post.. jax Pike <magicnan2005 > wrote: OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm > wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Jackie Who knows what is around life's corner, so why worry about it. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2007 Report Share Posted July 13, 2007 you are welcome .. its just the peg that needs to be kept cool , I think.. the Riba capsules are probably ok,, Let me know if the VA will ship you the treatment meds or not, I'd like to know... jax Pike <magicnan2005@...> wrote: Thanks Jax I'm gonna get on this and its good to know some need to be kept cool. Nan Jackie on <redjaxjm > wrote: I dont know if they will ship you the Peg and Riba because it needs to be kept cool, but all the rest of your meds,, have your doc write you a 30 day script, which you fill at your local pharmacy for immediate use, and then another one for 90 days( with a refil for up to one year) and then send the long one to the meds by mail. As long as you dont have any other prescription med coverage, they will send you your meds by mail. You can go to the website and download the paperwork to fill out and send in with your prescriptions. They say it can take up to 3 weeks to get the meds the first time and then its faster. Then when you get your meds, they send you a slip to send back in immediately so they can get the refil going and will send it to you fairly soon, so you end up having about 6 months worth of meds on hand with no copay.. if you have any further questions about it, email me off line, you can get my email addy on the top of this post.. jax Pike <magicnan2005 > wrote: OMG TY and I will do this as I saw its expensive. I have a sm co pay but still my husband and I don't live together and he supports me. I did do great raising our kids. I have so many questions when I go to the VA next week. What state do you live in? I'm in Fl. UGH ! I'm really over living here. Mind you I say this at this time of the yr. We did have 2 tornadoes come throught christmas and in Feb. Missed me by 5 miles. Took out 100 homes. more later. Working today. NanJackie on <redjaxjm > wrote: Hi My husband is also 100% from military service in nam,, so I have champ Va too and its a great program.. I have been totally happy with it! they cover everything and if you have meds sent through their meds by mail program, there is no co pay,, THAT has saved us a lot of money since I got diagnosed 5 + years ago.. jackie Pike <magicnan2005 > wrote: I got the book amazon.com must love meraggzcutiepeoplepc wrote: I guess all you can do is do what you can... I'm going to check this out too. Re: Re:Ammonia levels Wow I'm gonna check out this cook book. I live in new Smryna beach, Fl. I have Champva as my husband is a 100% disabled combat vet. I'm going into the orlando VA next week. I was just talking to a friend about diet and then read this. I told her how this group mentions diet for this. TY Nan Rick Kipp <rickkippearthlink (DOT) net> wrote: Hi Steve,Thanks for your response. I am already on lactulose, having doubled the doseage in the past 3 weeks to 1 oz. each, but 4 times per day. I don't know anything about onions and other vegies. just ordered a book called "Hepatitis C Cookbook: Easy & Delicious Recipes" from Amazon. Don't know if it will be worthwhile. Nutrionists are rare in Fort Myers, FL, and none of them are covered by Aetna. The VA has some good papers on nutrition, so with more research, a cookbook and a caring wife who loves to cook, I think I'll get my diet in line. However, diet can't take care of everything, so my concern still exists about the ammonia. And, Yes, you can go into a coma at anytime, or worse. Just google "HCV high ammonia level" and you'll see the horror stories I read, backed up by medical research.>> Rick,> > Ask your doctor about laculose. It will help your body rid itself of the amonia. Also ask him to refer you to a dietician. There are certain foods like onions and few other acidic vegies that raise your amonia level and you should aviod them if at all possible. Your amonia level may not cause a comma but it certainly can trigger encephalitis. I still have a few days when my levels were up and I don't remember jack.> > KTF> Steve B.> > > ---------------------------------> Looking for a deal? Find great prices on flights and hotels with FareChase.> Need a vacation? Get great deals to amazing places on Travel. TV dinner still cooling?Check out "Tonight's Picks" on TV. Jackie Ready for the edge of your seat? Check out tonight's top picks on TV. Jackie Luggage? GPS? Comic books? Check out fitting gifts for grads at Search. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Thanks, Jax! My limited understanding (could be misunderstanding) of what the infectious disease doc was saying is that ammonia levels could be tied to depression and other mental illnesses, in addition to hepatic encephalopathy). I'm newly diagnosed and have probably had Hep C for 20+ years, and have been more and more resistant to tx of depression (and over the years have been on SSRIs and an MAOI). I'm currently taking Cymbalta, which my regular doc says is okay. In addition, she recently doubled my dosage. I specifically asked her if this medication was safe for my liver when I saw the issue come up on this list in October. My gastro didn't say anything negative about my meds when I met with her. I found out about the Hep C (genotype 1B) when I donated plasma this summer, otherwise I wouldn't have known. So unless the crappiness I'm feeling is related to the virus rearing its ugly head, I'm fine (aside from being depressed, tired and unable to focus). I have not had a liver biopsy, which the gastro recommends having when I decide to do the treatment. In July, my viral load was less than 250,000. My abdominal ultrasound was normal.I understand that doctors follow specific protocols in diseases they treat, however, based on what I've read on this list many patients present different symptoms, and have many different reactions to the treatment. Doctors seem to have varying degrees of concern about the disease, too, based on my experience. According to the lab that will do draw and test my blood, the test costs about $135. If in fact, there is evidence that ammonia levels are tied to mental health, and my insurance company refuses to cover it, it will be $135 well spent. Aside from all the health issues, I'm not looking forward to dealing with the insurance company, which I've had to do for every aspect of my HEP C medical care so far (ultrasound, both gastro appts and labs). I'm frustrated with how confusing and inconsistent this disease is (other diseases that I haven't had to deal with, too, I'm sure). I'll add scared, too, since there doesn't seem to be any way to know how I will do with or without treatment until that time has passed. I thought checking in with this group would be a good way to find out if any other HCVrs have knowledge of reliable documented research or personal experience that I can draw on. (While checking for typos, I realized this email confirms to me what I've been reading all along in other posts on this list... that we have to be very knowledgeable about this disease and treatment. There is nothing wrong with respectfully questioning the medical professionals, and it is in our best interest to do so.) That is probably more than anyone wanted to know. Thanks, again!Donna Jackie on <redjaxjm@...> wrote: Hi, Well first off,, I need to ask you WHY YOU think you need to have your ammonia levels checked? Are you having signs of having too high of ammonia levels? What stage of damage are you? These tests are expensive and the problem is that most insurance companies dont want the docs ordering it unless there IS A REASON to order it,,, meaning,, to rule out high ammonia levels and encephalopathy... IF you are feeling well, then there is probably no reason to have that blood test, however IF you are very concerned about it, your doc should either order it or explain better why they wont and why... just my 2 cents, hugs jaxpeg heimer <redpagepeg > wrote: Hi All,I have a question about testing for ammonia levels. Has anyone ever had their blood tested for ammonia levels and NOT been extremely ill at the time? It's been suggested to me by an infectious disease doctor (who treats hep & hiv pts, but isn't treating me and can not treat me) that I have the blood test, however, my gastro won't order as she only orders it for pts who are "near death" (an exaggeration I hope). My regular doc insists it isn't necessary. Is anyone aware of any research indicating that ammonia level info is useful before one becomes very ill? I'm hoping that the collective experience of this group will help me determine how persistent I should be with my own doctor on this issue. Thank you for any guidance you can provide!Donna Looking for last minute shopping deals? Find them fast with Search. Jackie Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 Thanks, RIck! So the ammonia levels help the doctor decide how much lactulose you should be taking... has the lactulose improved your mental acuity? Is 110 considered dangerously high? I'm sorry that you didn't reach SVR and that you still have side effects from both the treatment and the disease. Are you considering retreating the HCV?Donna Rick Kipp <rickkipp@...> wrote: Hye, Donna!I have monthly blood tests for my G.I. doc, and he also has my ammonia level checked monthly. Mine is around 110, when it's supposed to be around 47. I haven't been on tx for 2 years, but never reached SVR, so I still have lots of the side effects of the disease and treatment. M+y Doc originally wanted the test for my mental acuity (huh?)for how much lactulose I should be taking per day. It was not problem having him put the ammonia level on my standing order with the lab. I don't think you have to be extremely sick for this test, just another piece of data to add to the confusion. > > Hi All, > > I have a question about testing for ammonia levels. Has anyone ever had their blood tested for ammonia levels and NOT been extremely ill at the time? > > It's been suggested to me by an infectious disease doctor (who treats hep & hiv pts, but isn't treating me and can not treat me) that I have the blood test, however, my gastro won't order as she only orders it for pts who are "near death" (an exaggeration I hope). My regular doc insists it isn't necessary. > > Is anyone aware of any research indicating that ammonia level info is useful before one becomes very ill? I'm hoping that the collective experience of this group will help me determine how persistent I should be with my own doctor on this issue. > > Thank you for any guidance you can provide! > > Donna > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
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