Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 I got the book amazon.com must love meraggzcutie@... 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 I got the book amazon.com must love meraggzcutie@... 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2007 Report Share Posted July 12, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 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. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 The ammonia levels cause hepatic encephlaphy and studies have shown that those at the beginning levels are at a greater risk for motor vehicle accidents . Tell your doctor to check medscape gastroenterology 10/23/07 . And if you have a doctor who won't treat or test for it til your near death then I would seriously consider finding a new physician. Any hepatitis C patient who has any level of damage in the liver should be tested . ammonia levels 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 The ammonia levels cause hepatic encephlaphy and studies have shown that those at the beginning levels are at a greater risk for motor vehicle accidents . Tell your doctor to check medscape gastroenterology 10/23/07 . And if you have a doctor who won't treat or test for it til your near death then I would seriously consider finding a new physician. Any hepatitis C patient who has any level of damage in the liver should be tested . ammonia levels 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 you are very welcome Peg, I do agree with you in that we must be educated on our disease because as you say, differing docs have differing concerns about us.. and you are also right in that this virus seems to affect many of us differently and there is no 'cookie cutter' disease progression that we can rely on to know what might come next for any one of us. If you are still having depression and they cannot find a way to make that better, I would think that THAT in and of itself would be reason enough to check your ammonia levels,, and because you said you may have had this for 20+ years, you ARE quite possibly getting to the point to where the damage may be becoming more significant so if this doc wont check it, then you should truely look for another doc who will at least be concerned enough to check everything out for you and FIND A WAY to make the damned insurance pay for the tests.... I am very worried about your being on cymbalta,, even tho your doc 'may not be concerned' about that medication, you truely should research it because it apparently is NOT curing your depression and it may very well be contributing to your liver damage. WHY did she DOUBLE your dose???? If its not working, then its not working and perhaps you need a different medication.. Cymbalta clearly has a black box warning on it that it is not to be used for those with chronic or extensive liver damage and I truely do not understand WHY these docs give this medication out to those who are clearly contraindicated for its use.... PLEASE research it for yourself.. Your viral load is not very high but then again, viral load really has no bearing upon the amount of damage you have and actually when one's liver gets sicker and sicker, the viral load can and often does go down because the liver is just too sick to leak the ALT/AST's.. and that is not a good sign.. Ultrasounds truely do not show anything unless you have tumors or lesions on your liver, in fact my last ultrasound had a hand written notice from the pathologist stating that the ultrasound was NOT the way to see what is happening in the liver that an MRI or CT would show much more than the ultrasound. It sounds like your doc is trying to do all the test but may not be up to date on the info that all of us have been guinea pigs for that have clearly shown what works and what doesnt..lol.. please hon, NEVER be intimidated by the doc's we go to,, remember they are OUR clients, we HIRE THEM,, and we should always be able to discuss anything with them, especially as it pertains to our health,, hugs, jaxpeg heimer <redpagepeg@...> wrote: 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. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 12, 2007 Report Share Posted December 12, 2007 you are very welcome Peg, I do agree with you in that we must be educated on our disease because as you say, differing docs have differing concerns about us.. and you are also right in that this virus seems to affect many of us differently and there is no 'cookie cutter' disease progression that we can rely on to know what might come next for any one of us. If you are still having depression and they cannot find a way to make that better, I would think that THAT in and of itself would be reason enough to check your ammonia levels,, and because you said you may have had this for 20+ years, you ARE quite possibly getting to the point to where the damage may be becoming more significant so if this doc wont check it, then you should truely look for another doc who will at least be concerned enough to check everything out for you and FIND A WAY to make the damned insurance pay for the tests.... I am very worried about your being on cymbalta,, even tho your doc 'may not be concerned' about that medication, you truely should research it because it apparently is NOT curing your depression and it may very well be contributing to your liver damage. WHY did she DOUBLE your dose???? If its not working, then its not working and perhaps you need a different medication.. Cymbalta clearly has a black box warning on it that it is not to be used for those with chronic or extensive liver damage and I truely do not understand WHY these docs give this medication out to those who are clearly contraindicated for its use.... PLEASE research it for yourself.. Your viral load is not very high but then again, viral load really has no bearing upon the amount of damage you have and actually when one's liver gets sicker and sicker, the viral load can and often does go down because the liver is just too sick to leak the ALT/AST's.. and that is not a good sign.. Ultrasounds truely do not show anything unless you have tumors or lesions on your liver, in fact my last ultrasound had a hand written notice from the pathologist stating that the ultrasound was NOT the way to see what is happening in the liver that an MRI or CT would show much more than the ultrasound. It sounds like your doc is trying to do all the test but may not be up to date on the info that all of us have been guinea pigs for that have clearly shown what works and what doesnt..lol.. please hon, NEVER be intimidated by the doc's we go to,, remember they are OUR clients, we HIRE THEM,, and we should always be able to discuss anything with them, especially as it pertains to our health,, hugs, jaxpeg heimer <redpagepeg@...> wrote: 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. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2007 Report Share Posted December 13, 2007 The lactulose has worked wonderfully. Much less forgetfullnes. 2 years ago, my wife discussed my mental problems directly with me and gave me her observations. I really hadn't thought it was as bad as she explained. At that point, we both agreed that I would quit driving, as I would get completely spaced out and lost, even in my own town of 20 years. So, she drove me everywhere until recently, when I began driving again. Still can be a bit scary on the road! As to retreatment, it all depends on another problem. I also have sarcordosis, and treating HCV increases the sarcordosis, while treating the sarcoidosis increases the HCV risks. Catch 22's got me! So that's another blood test I want to take when these new drugs, along with Peg and Reba, get FDA approval. My Doc really thinks that VX-950 will really give a boost to those seeking SVR. Oh, and I have never had a problem with my Aetna insurance paying for everything. Guess it does depend on how the Doc writes it up. Be strong with your Doc, because you do have patients' rights. Best of luck! > > > > 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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