Guest guest Posted August 22, 2011 Report Share Posted August 22, 2011 Hi I am becoming an expert on the whole Ammonia Build-up thing, Joan, and i hope this long-winded discussion makes sense! First of all, I question the diagnosis that says it is ammonia that is causing your aching legs. usually, too much ammonia will cause other symptoms of a more serious nature before it affects your legs. have you had much confusion, forgetfulness, or inability to fully wake up in the morning? do you have focus problems? these symptoms might indicate hepatic encephalopathy--a much more likely result of ammonia build up.are you shakey or unable to keep your extended hands from jerking? these symptoms are MUCH more prevalent wit ammonia build up. i would look at fluid retention as the cause for aching joints in your extremities. fluid retention is a huge problem with liver disease. secondly, my doctor says meat and dairy are OK with TREATED ammonia build up problems, in moderation. my doctor is a world expert, having been on the team that gave Steve Jobs a new liver. i see him at Vanderbilt University in Nashville--one of the leading Hepatology centers in the world. he knows the latest in Hepatology research because he and his colleagues do a fair amount of that research. i have had serious bouts with ammonia and was sent from s Hopkins University Hospital to Vanderbilt. my primary doctor told me protein in moderation would not affect my blood panels--just dont eat a big 72 oz steak every day. he also said limiting fats and carbs would not be dangerous (in moderation) as he would prefer i was thinner rather than heavy and doing without protein. im 6'1 " and weigh 250 lbs. he says i need to lower my weight as that is a risk factor in diabetes type II, another common ailment caused by liver disease. ugh! finally, lactulose alone is not always going to work. i was going through a ton of lactulose and still having hospitalizations. my doctors said the only thing i could do was take laxatives with my lactulose. sheesh. my doctor here in Nashville has kept me on lactulose and initially added Xifaxin to the mix. my insurancce refused to pay for it so he instead, put me on Neomycin as a suppliment to my lactulose. i have seen my ammonia numbers dramatically lowered, and feel more clear-headed and focused. i am about to go on a research program which will provide me with Xifaxin for free. Neomycin is good, but it can cause some less than desireable side effects in large doses. i dont suffer through hospitalizations, or any of those things that ruin my thinking processes any more. i would consider a doctor who talks with you about the ammonia problem and has experience treating it. and i would also look at a possible fluid retention problem. its my experience that gastroenterologists are knowledgeable men and women in the digestive disease side of things, but insist on using treatments popular in the early 90s. make sure you are seeing someone who is a Hepatologist and also make sure he hears you when you speak. telling you to take lactulose and not eat meat is irresponsible and then putting you back on the street is irresponsible. you need to look at water weight, diabetes, and address your ammonia levels with a treatment regimen that works. be pushy, and go for a second opinion with someone who identifies him/herself as a hepatologist. im sure some will disagree with my assessment, but i have gone from an ammonia loads of over 200 down to the 50s. and i feel good. i have a good doctor who understands my disease, and one who knows about the latest medications. thats my 2 cents! kip Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2011 Report Share Posted August 22, 2011 Thanks Kip Your 2 cents was worth way more than that, yes I am having trouble with water retention and have recently had my daily water pills doubled then tripled. No one said this is what is causing the legs to ache, just take more lactulose. Now another question, my cirosis is not caused by hepatitis, so should I still see a hepatologist? Don't they treat hepatitis as the name suggests? I see my family doctor and a gastro guy who does everything else including the bands on my esophagus. And just another note a happier one at last, I wrote a while back that I had a polyp removed from my colon and it was positive for cancer and was told that due to my advanced liver disease there was nothing they could do. Well when I wrote that here a few people lost their minds,especially bobby. Well thanks for flipping out, although I could not convince the doctor about chemo or radiation he did agree to go back in and remove the rest of the polyp as they knew they did not get it all from the biopsy results. And not only did he get the rest of it he found 3 more that they missed on the first run through (pardon the expression) . So I am now concidered cancer free, which I would not be if I had not gone back and insisted on further treatment thanks to all of you. So a big thank you to all of you, and if you are new to this group keep checking in as it is here that we learn and support each other. Joan ________________________________ To: livercirrhosissupport Sent: Mon, August 22, 2011 1:56:24 PM Subject: Re: amonia levels Hi I am becoming an expert on the whole Ammonia Build-up thing, Joan, and i hope this long-winded discussion makes sense! First of all, I question the diagnosis that says it is ammonia that is causing your aching legs. usually, too much ammonia will cause other symptoms of a more serious nature before it affects your legs. have you had much confusion, forgetfulness, or inability to fully wake up in the morning? do you have focus problems? these symptoms might indicate hepatic encephalopathy--a much more likely result of ammonia build up.are you shakey or unable to keep your extended hands from jerking? these symptoms are MUCH more prevalent wit ammonia build up. i would look at fluid retention as the cause for aching joints in your extremities. fluid retention is a huge problem with liver disease. secondly, my doctor says meat and dairy are OK with TREATED ammonia build up problems, in moderation. my doctor is a world expert, having been on the team that gave Steve Jobs a new liver. i see him at Vanderbilt University in Nashville--one of the leading Hepatology centers in the world. he knows the latest in Hepatology research because he and his colleagues do a fair amount of that research. i have had serious bouts with ammonia and was sent from s Hopkins University Hospital to Vanderbilt. my primary doctor told me protein in moderation would not affect my blood panels--just dont eat a big 72 oz steak every day. he also said limiting fats and carbs would not be dangerous (in moderation) as he would prefer i was thinner rather than heavy and doing without protein. im 6'1 " and weigh 250 lbs. he says i need to lower my weight as that is a risk factor in diabetes type II, another common ailment caused by liver disease. ugh! finally, lactulose alone is not always going to work. i was going through a ton of lactulose and still having hospitalizations. my doctors said the only thing i could do was take laxatives with my lactulose. sheesh. my doctor here in Nashville has kept me on lactulose and initially added Xifaxin to the mix. my insurancce refused to pay for it so he instead, put me on Neomycin as a suppliment to my lactulose. i have seen my ammonia numbers dramatically lowered, and feel more clear-headed and focused. i am about to go on a research program which will provide me with Xifaxin for free. Neomycin is good, but it can cause some less than desireable side effects in large doses. i dont suffer through hospitalizations, or any of those things that ruin my thinking processes any more. i would consider a doctor who talks with you about the ammonia problem and has experience treating it. and i would also look at a possible fluid retention problem. its my experience that gastroenterologists are knowledgeable men and women in the digestive disease side of things, but insist on using treatments popular in the early 90s. make sure you are seeing someone who is a Hepatologist and also make sure he hears you when you speak. telling you to take lactulose and not eat meat is irresponsible and then putting you back on the street is irresponsible. you need to look at water weight, diabetes, and address your ammonia levels with a treatment regimen that works. be pushy, and go for a second opinion with someone who identifies him/herself as a hepatologist. im sure some will disagree with my assessment, but i have gone from an ammonia loads of over 200 down to the 50s. and i feel good. i have a good doctor who understands my disease, and one who knows about the latest medications. thats my 2 cents! kip Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2011 Report Share Posted August 22, 2011 Hi Joan, I don't know much about ammonia levels because mine was pretty normal until I was in the hospital to get my transplant. I believe aching in the legs is caused by low potassium levels. Before my transplant, my legs ached all the time and it was because my potassium levels were low. All of my electrolytes were screwed up. You could ask your doctor to take tests for your potassium levels. I hope this helps. Penny > > Hi All > > I have been having a really hard time with my legs aching and apparently it is > due to high amonia levels, I am on lactulose and even if I just chug the stuff > all day long the aching continues. I want to make sure I understand the cause of > the amonia levels correctly, it is associated with the food we eat is this > right? So if this is the case what should we not be eating? I am already on a > low protien, almost dairy free diet and the ache continues. If I stop eating > will the ache go away and then I would not even need the lactulose anymore, or > have I totally misunderstood the whole thing to do with amonia levels? > > As always I learn so much from reading all of your emails and appreciate the > help and guidance you have always offered me, > > Joan > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2011 Report Share Posted August 22, 2011 Hi Joan, You should definitely see a Hepatologist. The meaning of the word hepatitis is inflammation of the liver. Anything that is causing your cirrhosis is hepatitis...inflammation of the liver. You don't have to have Hepatitis A, B, C, to have hepatitis. A hepatologist knows a lot more than a gastroenterologist or any other kind of doctor. A hepatologist specializes in the liver for anything that causes cirrhosis. Since you are taking water pills, they could be the cause of your legs aching because water pills deplete your body of potassium. I would get to a hepatologist so you will know more of what is going on and you will be taken care of properly. Good luck. Penny > > Thanks Kip > > Your 2 cents was worth way more than that, yes I am having trouble with water > retention and have recently had my daily water pills doubled then tripled. No > one said this is what is causing the legs to ache, just take more lactulose. Now > another question, my cirosis is not caused by hepatitis, so should I still see a > hepatologist? Don't they treat hepatitis as the name suggests? I see my family > doctor and a gastro guy who does everything else including the bands on my > esophagus. > > And just another note a happier one at last, I wrote a while back that I had a > polyp removed from my colon and it was positive for cancer and was told that due > to my advanced liver disease there was nothing they could do. Well when I wrote > that here a few people lost their minds,especially bobby. Well thanks for > flipping out, although I could not convince the doctor about chemo or radiation > he did agree to go back in and remove the rest of the polyp as they knew they > did not get it all from the biopsy results. And not only did he get the rest of > it he found 3 more that they missed on the first run through (pardon the > expression) . So I am now concidered cancer free, which I would not be if I had > not gone back and insisted on further treatment thanks to all of you. So a big > thank you to all of you, and if you are new to this group keep checking in as it > is here that we learn and support each other. > > Joan > > > > > > ________________________________ > > To: livercirrhosissupport > Sent: Mon, August 22, 2011 1:56:24 PM > Subject: Re: amonia levels > > > Hi > > I am becoming an expert on the whole Ammonia Build-up thing, Joan, and i hope > this long-winded discussion makes sense! > > First of all, I question the diagnosis that says it is ammonia that is causing > your aching legs. usually, too much ammonia will cause other symptoms of a more > serious nature before it affects your legs. have you had much confusion, > forgetfulness, or inability to fully wake up in the morning? do you have focus > problems? these symptoms might indicate hepatic encephalopathy--a much more > likely result of ammonia build up.are you shakey or unable to keep your extended > hands from jerking? these symptoms are MUCH more prevalent wit ammonia build up. > i would look at fluid retention as the cause for aching joints in your > extremities. fluid retention is a huge problem with liver disease. > > secondly, my doctor says meat and dairy are OK with TREATED ammonia build up > problems, in moderation. my doctor is a world expert, having been on the team > that gave Steve Jobs a new liver. i see him at Vanderbilt University in > Nashville--one of the leading Hepatology centers in the world. he knows the > latest in Hepatology research because he and his colleagues do a fair amount of > that research. i have had serious bouts with ammonia and was sent from s > Hopkins University Hospital to Vanderbilt. my primary doctor told me protein in > moderation would not affect my blood panels--just dont eat a big 72 oz steak > every day. he also said limiting fats and carbs would not be dangerous (in > moderation) as he would prefer i was thinner rather than heavy and doing without > protein. im 6'1 " and weigh 250 lbs. he says i need to lower my weight as that is > a risk factor in diabetes type II, another common ailment caused by liver > disease. ugh! > > finally, lactulose alone is not always going to work. i was going through a ton > of lactulose and still having hospitalizations. my doctors said the only thing i > could do was take laxatives with my lactulose. sheesh. my doctor here in > Nashville has kept me on lactulose and initially added Xifaxin to the mix. my > insurancce refused to pay for it so he instead, put me on Neomycin as a > suppliment to my lactulose. i have seen my ammonia numbers dramatically lowered, > and feel more clear-headed and focused. i am about to go on a research program > which will provide me with Xifaxin for free. Neomycin is good, but it can cause > some less than desireable side effects in large doses. i dont suffer through > hospitalizations, or any of those things that ruin my thinking processes any > more. > > i would consider a doctor who talks with you about the ammonia problem and has > experience treating it. and i would also look at a possible fluid retention > problem. its my experience that gastroenterologists are knowledgeable men and > women in the digestive disease side of things, but insist on using treatments > popular in the early 90s. make sure you are seeing someone who is a Hepatologist > and also make sure he hears you when you speak. telling you to take lactulose > and not eat meat is irresponsible and then putting you back on the street is > irresponsible. you need to look at water weight, diabetes, and address your > ammonia levels with a treatment regimen that works. be pushy, and go for a > second opinion with someone who identifies him/herself as a hepatologist. > > im sure some will disagree with my assessment, but i have gone from an ammonia > loads of over 200 down to the 50s. and i feel good. i have a good doctor who > understands my disease, and one who knows about the latest medications. > > thats my 2 cents! > > kip > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2011 Report Share Posted August 23, 2011 Joan, please consult your doctor for answers about your leg pain. I know that leg pain is common among liver disease sufferers, but I do think you are a bit confused as to the cause. Messing around with dietary restrictions can be dangerous unless it is under the guidance of a doctor. None of us here are qualified to advise you about your lactulose dose, or other meds and diet, so please make an appointment and see your hepatologist. A hepatologist is a doctor of the liver. Every type of liver disease is a type of hepatitis, even alcoholism, fatty liver, NASH(non alcoholic steato hepatitis). Hepa means " Liver " . " Itis " means " irritation " . I hope you find out what the problem is. I hope you can see a hepatologist. If worse comes t worse, go to the ER at the largest hospital in your state, and there will be a hepatologist there who will be happy to see you. Love, Bobby  ________________________________ To: livercirrhosissupport Sent: Sunday, August 21, 2011 10:43 AM Subject: amonia levels  Hi All I have been having a really hard time with my legs aching and apparently it is due to high amonia levels, I am on lactulose and even if I just chug the stuff all day long the aching continues. I want to make sure I understand the cause of the amonia levels correctly, it is associated with the food we eat is this right? So if this is the case what should we not be eating? I am already on a low protien, almost dairy free diet and the ache continues. If I stop eating will the ache go away and then I would not even need the lactulose anymore, or have I totally misunderstood the whole thing to do with amonia levels? As always I learn so much from reading all of your emails and appreciate the help and guidance you have always offered me, Joan Quote Link to comment Share on other sites More sharing options...
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