Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 Hi RH, I have been watching the posts about Ammonia levels...Mine is always at the point of being just below the 'top of the range' with urea usually over range... You say you take meds for the problem..please may I ask what you take and how effective it is..I realise that this is the Med. prescribed for you by your Doc as his patient but it may give me something to mention to my own Doc.. Gillian > > > > I too see Dr. Mark Korson since 2001. I agree..he is the BEST. > > I have a brain injury from stroke that happened before I was > > digignosed (spelling sorry, lost that in stroke), I was told three > > years after stroke that stroke was caused by MITOCHONDRIAL DISEASE. > > > > Have been seeing DR.MARK (KORSON) since. He is so great with me > as > > I have a harder time (damage from stroke) and Dr. Mark Korson just > > hangs in there with me. He stays slow...for me...and explains > > things so that I can understand better...where as most of you may > > get it right away (i don't). If you can get to Boston New England > > Medical Center " Childrens Floating Hospital " Dr. Mark Korson is > the > > best. Kim Michele " KimGo'sWithFeathers " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 I take Xifaxan (rifaximin) and Lactulose. Note that people can have " hepatic encephalopathy " (confusion etc. from high ammonia in the blood) when ammonia levels are below the top of the range, and other people could be fine and dandy right up until they would die from the level (many times the max). It's definitely a YMMV thing. When I am asymptomatic, my ammonia levels range in low normal, but when I'm having symptoms many times per day, my ammonia is above the high normal. I recently went off lactulose, was fine for two weeks, then had to go back on it, in addition to the Xifaxan. I heartily suggest that you go to a GI specialist if at all possible, they would do a liver panel to rule out a direct liver cause for the lab values, and prescribe the lactulose for you if appropriate. Note that I think there are some differences in Europe; some of the sugar alcohols in diabetic candies in the U.S. are only prescription in Europe (lactitol), but eating large amounts of these candies with sugar alcohols may actually help a lot (and cause diarrhea, essentially the mode of action for lactulose). It causes severe diarrhea (= brown water essentially), but for me, 6 out of 7 days it is only for about 15 minutes per day, on 20 g/day. The other day of the seven, I spend an hour or two " taking care of business " . This happened once at my MIL's house, so of course she thought I had food poisoning, she doesn't really recognize that I'm ill. I still don't understand whether the high ammonia is due to the Complex I mito defect, or if there is another reason for it. Take care, RH > > > > > > I too see Dr. Mark Korson since 2001. I agree..he is the BEST. > > > I have a brain injury from stroke that happened before I was > > > digignosed (spelling sorry, lost that in stroke), I was told > three > > > years after stroke that stroke was caused by MITOCHONDRIAL > DISEASE. > > > > > > Have been seeing DR.MARK (KORSON) since. He is so great with > me > > as > > > I have a harder time (damage from stroke) and Dr. Mark Korson > just > > > hangs in there with me. He stays slow...for me...and explains > > > things so that I can understand better...where as most of you > may > > > get it right away (i don't). If you can get to Boston New > England > > > Medical Center " Childrens Floating Hospital " Dr. Mark Korson is > > the > > > best. Kim Michele " KimGo'sWithFeathers " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2005 Report Share Posted March 15, 2005 I take Xifaxan (rifaximin) and Lactulose. Note that people can have " hepatic encephalopathy " (confusion etc. from high ammonia in the blood) when ammonia levels are below the top of the range, and other people could be fine and dandy right up until they would die from the level (many times the max). It's definitely a YMMV thing. When I am asymptomatic, my ammonia levels range in low normal, but when I'm having symptoms many times per day, my ammonia is above the high normal. I recently went off lactulose, was fine for two weeks, then had to go back on it, in addition to the Xifaxan. I heartily suggest that you go to a GI specialist if at all possible, they would do a liver panel to rule out a direct liver cause for the lab values, and prescribe the lactulose for you if appropriate. Note that I think there are some differences in Europe; some of the sugar alcohols in diabetic candies in the U.S. are only prescription in Europe (lactitol), but eating large amounts of these candies with sugar alcohols may actually help a lot (and cause diarrhea, essentially the mode of action for lactulose). It causes severe diarrhea (= brown water essentially), but for me, 6 out of 7 days it is only for about 15 minutes per day, on 20 g/day. The other day of the seven, I spend an hour or two " taking care of business " . This happened once at my MIL's house, so of course she thought I had food poisoning, she doesn't really recognize that I'm ill. I still don't understand whether the high ammonia is due to the Complex I mito defect, or if there is another reason for it. Take care, RH > > > > > > I too see Dr. Mark Korson since 2001. I agree..he is the BEST. > > > I have a brain injury from stroke that happened before I was > > > digignosed (spelling sorry, lost that in stroke), I was told > three > > > years after stroke that stroke was caused by MITOCHONDRIAL > DISEASE. > > > > > > Have been seeing DR.MARK (KORSON) since. He is so great with > me > > as > > > I have a harder time (damage from stroke) and Dr. Mark Korson > just > > > hangs in there with me. He stays slow...for me...and explains > > > things so that I can understand better...where as most of you > may > > > get it right away (i don't). If you can get to Boston New > England > > > Medical Center " Childrens Floating Hospital " Dr. Mark Korson is > > the > > > best. Kim Michele " KimGo'sWithFeathers " Quote Link to comment Share on other sites More sharing options...
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