Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Do you think you are having symptoms from the high ammonia? I have short term memory loss, confusion episodes, and some emotional issues (like getting angry quickly) when my ammonia is high. The evidence is that when I get like that, I take some lactulose, and the symptoms resolve. My blood ammonia has been over 100 several times in lab tests; my understanding is that some people can be symptomatic with " medium " levels of ammonia, others are fine up until toxicity sets in. Here's some info on high ammonia: http://www.emedicine.com/PED/topic1057.htm I thought Xifaxan was working well for me to lower my ammonia, but I've been under stress that may be why I've had to go back to having lactulose daily. Lactulose causes diarrhea (as its mode of action), so if you're having constipation, that may contribute to high ammonia levels. Trying to figure out what is going on with my ammonia levels is why I am going to a metabolic doctor for the first time in August. I am told I don't have a urea cycle disorder, but I don't understand why ammonia accumulation would occur otherwise (my liver panels are okay too). My doctor said I could stay on the high protein diet since it improves my mito symptoms, and it doesn't seem to impact my ammonia levels. Take care, RH > > Things just keep popping up... > I found out that my blood ammonia level has been consistently in the > 80's. My liver function tests are normal and my cardiac profile > (triglycerides and lipids) is low normal, and renal tests are > excellent. I was told that ammonia can be high with metabolic > disorders. Any thoughts? Also, magnesium is on the low side but > urine Mg is normal so I'm not losing it that way.Potassium is a touch > low too. High ammonia and high lactate levels in my labs haven't > seemed to be linked in any way so far. The metabolics NP asked if I > had a hard time with protein in my diet and I said that I do fine > when I'm eating normally but that I started vomiting after 2 days on > Atkins. > > It's kind of funny, I've talked to other parents about how we know > that our kids are having a crisis and it seems like some kids get lab > changes and some kids can be really sick and have labs that look > perfect. is a " funky lab " kid and I guess I am too. There's > got to be some correlation between our labs, but my lab changes are > not the same as hers. > > We're heading into Boston this morning and is having her > broviac replaced. It's wiggling out of her chest. She's staying > overnight and hopefully will be home Saturday some time. My husband > will update her site: www.caringbridge.org/ma/heather > > Thanks! > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Heidi I will be thinking of your and . laurie > > > Things just keep popping up... > I found out that my blood ammonia level has been consistently in the > 80's. My liver function tests are normal and my cardiac profile > (triglycerides and lipids) is low normal, and renal tests are > excellent. I was told that ammonia can be high with metabolic > disorders. Any thoughts? Also, magnesium is on the low side but > urine Mg is normal so I'm not losing it that way.Potassium is a touch > low too. High ammonia and high lactate levels in my labs haven't > seemed to be linked in any way so far. The metabolics NP asked if I > had a hard time with protein in my diet and I said that I do fine > when I'm eating normally but that I started vomiting after 2 days on > Atkins. > > It's kind of funny, I've talked to other parents about how we know > that our kids are having a crisis and it seems like some kids get lab > changes and some kids can be really sick and have labs that look > perfect. is a " funky lab " kid and I guess I am too. There's > got to be some correlation between our labs, but my lab changes are > not the same as hers. > > We're heading into Boston this morning and is having her > broviac replaced. It's wiggling out of her chest. She's staying > overnight and hopefully will be home Saturday some time. My husband > will update her site: www.caringbridge.org/ma/heather > > Thanks! > Heidi > > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail > is entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with > their physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Yes, Heidi, and you are in our thoughts. Has had her ammonia levels tested? I was looking at your website and was wondering if 's been screened for fluid in the ears. Both my sons have had it, and it took 3 years to get ear tubes for the older one because he wasn't having ear infections. But he had intermittent hearing loss which was affecting his schoolwork. I have a question re: Broviac and similar. Has anyone used an Infusaport? It sounds like an alternative to a Broviac, but I am not familiar enough to make that judgement. Take care, RH -- In , Laurie Fitzgerald wrote: > Heidi > > I will be thinking of your and . > > laurie > > > > > > > > > Things just keep popping up... > > I found out that my blood ammonia level has been consistently in the > > 80's. My liver function tests are normal and my cardiac profile > > (triglycerides and lipids) is low normal, and renal tests are > > excellent. I was told that ammonia can be high with metabolic > > disorders. Any thoughts? Also, magnesium is on the low side but > > urine Mg is normal so I'm not losing it that way.Potassium is a touch > > low too. High ammonia and high lactate levels in my labs haven't > > seemed to be linked in any way so far. The metabolics NP asked if I > > had a hard time with protein in my diet and I said that I do fine > > when I'm eating normally but that I started vomiting after 2 days on > > Atkins. > > > > It's kind of funny, I've talked to other parents about how we know > > that our kids are having a crisis and it seems like some kids get lab > > changes and some kids can be really sick and have labs that look > > perfect. is a " funky lab " kid and I guess I am too. There's > > got to be some correlation between our labs, but my lab changes are > > not the same as hers. > > > > We're heading into Boston this morning and is having her > > broviac replaced. It's wiggling out of her chest. She's staying > > overnight and hopefully will be home Saturday some time. My husband > > will update her site: www.caringbridge.org/ma/heather > > > > Thanks! > > Heidi > > > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail > > is entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with > > their physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Thanks for posting the emedicine link on ammonia. Very interesting. B _____ From: [mailto: ] On Behalf Of ohgminion Sent: Friday, April 15, 2005 6:09 AM To: Subject: Re: high blood ammonia Do you think you are having symptoms from the high ammonia? I have short term memory loss, confusion episodes, and some emotional issues (like getting angry quickly) when my ammonia is high. The evidence is that when I get like that, I take some lactulose, and the symptoms resolve. My blood ammonia has been over 100 several times in lab tests; my understanding is that some people can be symptomatic with " medium " levels of ammonia, others are fine up until toxicity sets in. Here's some info on high ammonia: http://www.emedicine.com/PED/topic1057.htm I thought Xifaxan was working well for me to lower my ammonia, but I've been under stress that may be why I've had to go back to having lactulose daily. Lactulose causes diarrhea (as its mode of action), so if you're having constipation, that may contribute to high ammonia levels. Trying to figure out what is going on with my ammonia levels is why I am going to a metabolic doctor for the first time in August. I am told I don't have a urea cycle disorder, but I don't understand why ammonia accumulation would occur otherwise (my liver panels are okay too). My doctor said I could stay on the high protein diet since it improves my mito symptoms, and it doesn't seem to impact my ammonia levels. Take care, RH > > Things just keep popping up... > I found out that my blood ammonia level has been consistently in the > 80's. My liver function tests are normal and my cardiac profile > (triglycerides and lipids) is low normal, and renal tests are > excellent. I was told that ammonia can be high with metabolic > disorders. Any thoughts? Also, magnesium is on the low side but > urine Mg is normal so I'm not losing it that way.Potassium is a touch > low too. High ammonia and high lactate levels in my labs haven't > seemed to be linked in any way so far. The metabolics NP asked if I > had a hard time with protein in my diet and I said that I do fine > when I'm eating normally but that I started vomiting after 2 days on > Atkins. > > It's kind of funny, I've talked to other parents about how we know > that our kids are having a crisis and it seems like some kids get lab > changes and some kids can be really sick and have labs that look > perfect. is a " funky lab " kid and I guess I am too. There's > got to be some correlation between our labs, but my lab changes are > not the same as hers. > > We're heading into Boston this morning and is having her > broviac replaced. It's wiggling out of her chest. She's staying > overnight and hopefully will be home Saturday some time. My husband > will update her site: www.caringbridge.org/ma/heather > > Thanks! > Heidi Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. _____ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 -Yes remember discussing this with you before...if all the cells in our body are affected as I have been told by the mito defect then the liver can also be sluggish but LFT tests are as usual 'normal' ...just a very silly suggestion here, have you ever had an ultrasound scan done, that is how they picked up abnormalities on me when tests said normal for kidney function but the ultrasound showed inflammation which is *assumed* at present to be a mito. reaction (one swollen kidney, one shrunken kidney)..they also did other organs the same way..It was the metabolic mito Doc who used this method on me and others..Just venturing an idea... Gillian -- In , " ohgminion " wrote: > > Do you think you are having symptoms from the high ammonia? I have > short term memory loss, confusion episodes, and some emotional issues > (like getting angry quickly) when my ammonia is high. The evidence > is that when I get like that, I take some lactulose, and the symptoms > resolve. > > My blood ammonia has been over 100 several times in lab tests; my > understanding is that some people can be symptomatic with " medium " > levels of ammonia, others are fine up until toxicity sets in. > > Here's some info on high ammonia: > http://www.emedicine.com/PED/topic1057.htm > > I thought Xifaxan was working well for me to lower my ammonia, but > I've been under stress that may be why I've had to go back to having > lactulose daily. Lactulose causes diarrhea (as its mode of action), > so if you're having constipation, that may contribute to high ammonia > levels. > > Trying to figure out what is going on with my ammonia levels is why I > am going to a metabolic doctor for the first time in August. I am > told I don't have a urea cycle disorder, but I don't understand why > ammonia accumulation would occur otherwise (my liver panels are okay > too). My doctor said I could stay on the high protein diet since it > improves my mito symptoms, and it doesn't seem to impact my ammonia > levels. > > Take care, > RH > > > > > > > Things just keep popping up... > > I found out that my blood ammonia level has been consistently in > the > > 80's. My liver function tests are normal and my cardiac profile > > (triglycerides and lipids) is low normal, and renal tests are > > excellent. I was told that ammonia can be high with metabolic > > disorders. Any thoughts? Also, magnesium is on the low side but > > urine Mg is normal so I'm not losing it that way.Potassium is a > touch > > low too. High ammonia and high lactate levels in my labs haven't > > seemed to be linked in any way so far. The metabolics NP asked if > I > > had a hard time with protein in my diet and I said that I do fine > > when I'm eating normally but that I started vomiting after 2 days > on > > Atkins. > > > > It's kind of funny, I've talked to other parents about how we know > > that our kids are having a crisis and it seems like some kids get > lab > > changes and some kids can be really sick and have labs that look > > perfect. is a " funky lab " kid and I guess I am too. > There's > > got to be some correlation between our labs, but my lab changes are > > not the same as hers. > > > > We're heading into Boston this morning and is having her > > broviac replaced. It's wiggling out of her chest. She's staying > > overnight and hopefully will be home Saturday some time. My > husband > > will update her site: www.caringbridge.org/ma/heather > > > > Thanks! > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Had an abdominal u/s a while ago, it was normal. At that time, I had a bad gall bladder attack, and the gall bladder testing was abnormal, but not enough to recommend removal (unless I wanted it removed, lol). I am very interested in (what I hope will be) baseline tests, since I have young kids I feel that I should be aggressive in confirming my health status for them and my husband. For example, I went to the cardiologist for a " baseline " , and found that I do indeed have bradycardia episodes (slow heartbeat) and may need a pacemaker in the future. But the echo and stress tests were okay for me. I will be grilling Dr. K in Boston about the high ammonia and finding out why it occurs. Regarding inflammation, I am on an antibiotic that works only in the intestines, it is hoped that it will kill the ammonia-producing bacteria, and hasn't had an impact on the good bacteria (as far as I know, since I haven't had continual problems with yeast infections). Take care, RH > > > > > > Things just keep popping up... > > > I found out that my blood ammonia level has been consistently in > > the > > > 80's. My liver function tests are normal and my cardiac profile > > > (triglycerides and lipids) is low normal, and renal tests are > > > excellent. I was told that ammonia can be high with metabolic > > > disorders. Any thoughts? Also, magnesium is on the low side > but > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > touch > > > low too. High ammonia and high lactate levels in my labs > haven't > > > seemed to be linked in any way so far. The metabolics NP asked > if > > I > > > had a hard time with protein in my diet and I said that I do > fine > > > when I'm eating normally but that I started vomiting after 2 > days > > on > > > Atkins. > > > > > > It's kind of funny, I've talked to other parents about how we > know > > > that our kids are having a crisis and it seems like some kids > get > > lab > > > changes and some kids can be really sick and have labs that look > > > perfect. is a " funky lab " kid and I guess I am too. > > There's > > > got to be some correlation between our labs, but my lab changes > are > > > not the same as hers. > > > > > > We're heading into Boston this morning and is having her > > > broviac replaced. It's wiggling out of her chest. She's > staying > > > overnight and hopefully will be home Saturday some time. My > > husband > > > will update her site: www.caringbridge.org/ma/heather > > > > > > Thanks! > > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Thanks for the link. My doc won't test my amonia even though my sweat smells like it. It's kind of frustrating. At least I can reduce protein and see if it helps. This explains the sharp pains in my head, etc. Is Lactolose over the counter? Is anything OTC that will help this? Thanks, Kim > > > > Things just keep popping up... > > I found out that my blood ammonia level has been consistently in > the > > 80's. My liver function tests are normal and my cardiac profile > > (triglycerides and lipids) is low normal, and renal tests are > > excellent. I was told that ammonia can be high with metabolic > > disorders. Any thoughts? Also, magnesium is on the low side but > > urine Mg is normal so I'm not losing it that way.Potassium is a > touch > > low too. High ammonia and high lactate levels in my labs haven't > > seemed to be linked in any way so far. The metabolics NP asked if > I > > had a hard time with protein in my diet and I said that I do fine > > when I'm eating normally but that I started vomiting after 2 days > on > > Atkins. > > > > It's kind of funny, I've talked to other parents about how we know > > that our kids are having a crisis and it seems like some kids get > lab > > changes and some kids can be really sick and have labs that look > > perfect. is a " funky lab " kid and I guess I am too. > There's > > got to be some correlation between our labs, but my lab changes are > > not the same as hers. > > > > We're heading into Boston this morning and is having her > > broviac replaced. It's wiggling out of her chest. She's staying > > overnight and hopefully will be home Saturday some time. My > husband > > will update her site: www.caringbridge.org/ma/heather > > > > Thanks! > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Oh boy, I have inflamaion in my kidneys shown on ultrasound. They were discussing kidney stone surgery, assuming the inflamation was from kidney stones, even though they couldn't see any. Thank you for posting this. Any chance you have a link about it? Thanks, Kim > > > > > > Things just keep popping up... > > > I found out that my blood ammonia level has been consistently in > > the > > > 80's. My liver function tests are normal and my cardiac profile > > > (triglycerides and lipids) is low normal, and renal tests are > > > excellent. I was told that ammonia can be high with metabolic > > > disorders. Any thoughts? Also, magnesium is on the low side > but > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > touch > > > low too. High ammonia and high lactate levels in my labs > haven't > > > seemed to be linked in any way so far. The metabolics NP asked > if > > I > > > had a hard time with protein in my diet and I said that I do > fine > > > when I'm eating normally but that I started vomiting after 2 > days > > on > > > Atkins. > > > > > > It's kind of funny, I've talked to other parents about how we > know > > > that our kids are having a crisis and it seems like some kids > get > > lab > > > changes and some kids can be really sick and have labs that look > > > perfect. is a " funky lab " kid and I guess I am too. > > There's > > > got to be some correlation between our labs, but my lab changes > are > > > not the same as hers. > > > > > > We're heading into Boston this morning and is having her > > > broviac replaced. It's wiggling out of her chest. She's > staying > > > overnight and hopefully will be home Saturday some time. My > > husband > > > will update her site: www.caringbridge.org/ma/heather > > > > > > Thanks! > > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Lactulose is prescription in the US. Since you asked about over the counter...The sugar alcohols found in most diabetic candy have a similar effect to lactulose. Like lactulose, you can get gas and diarrhea from ingesting " too much " , but that's how the ammonia removal from your intestines works. Sugar free mini Reese's peanut butter cups have lactitol, which has been studied as an alternative to lactulose: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=7628787&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=3979914&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=3053887&dopt=Abstract I've heard that lactitol is a prescription drug in Europe. My dosage is 10 g of lactulose per day, but you'd have to figure out how much diabetic candy (with lactitol) you need for the same effect. I really suggest going to a GI doctor for the high ammonia, or if the GI doctor won't test your ammonia, ask your GP to test it. I believe Dr. Korson wrote the hyperammonemia flow chart that is on Horizon Molecular Medicine's website: http://www.horizonmedicine.com/docs/Hyperammonemia.pdf I hope therefore when I see Dr. K, he can perform these different screenings for me, so I can find out why my ammonia is high. I am not a doctor, YMMV, etc. Take care, RH > > > > > > Things just keep popping up... > > > I found out that my blood ammonia level has been consistently in > > the > > > 80's. My liver function tests are normal and my cardiac profile > > > (triglycerides and lipids) is low normal, and renal tests are > > > excellent. I was told that ammonia can be high with metabolic > > > disorders. Any thoughts? Also, magnesium is on the low side > but > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > touch > > > low too. High ammonia and high lactate levels in my labs > haven't > > > seemed to be linked in any way so far. The metabolics NP asked > if > > I > > > had a hard time with protein in my diet and I said that I do > fine > > > when I'm eating normally but that I started vomiting after 2 > days > > on > > > Atkins. > > > > > > It's kind of funny, I've talked to other parents about how we > know > > > that our kids are having a crisis and it seems like some kids > get > > lab > > > changes and some kids can be really sick and have labs that look > > > perfect. is a " funky lab " kid and I guess I am too. > > There's > > > got to be some correlation between our labs, but my lab changes > are > > > not the same as hers. > > > > > > We're heading into Boston this morning and is having her > > > broviac replaced. It's wiggling out of her chest. She's > staying > > > overnight and hopefully will be home Saturday some time. My > > husband > > > will update her site: www.caringbridge.org/ma/heather > > > > > > Thanks! > > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2005 Report Share Posted April 16, 2005 Lactulose is prescription in the US. Since you asked about over the counter...The sugar alcohols found in most diabetic candy have a similar effect to lactulose. Like lactulose, you can get gas and diarrhea from ingesting " too much " , but that's how the ammonia removal from your intestines works. Sugar free mini Reese's peanut butter cups have lactitol, which has been studied as an alternative to lactulose: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=7628787&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=3979914&dopt=Abstract http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=3053887&dopt=Abstract I've heard that lactitol is a prescription drug in Europe. My dosage is 10 g of lactulose per day, but you'd have to figure out how much diabetic candy (with lactitol) you need for the same effect. I really suggest going to a GI doctor for the high ammonia, or if the GI doctor won't test your ammonia, ask your GP to test it. I believe Dr. Korson wrote the hyperammonemia flow chart that is on Horizon Molecular Medicine's website: http://www.horizonmedicine.com/docs/Hyperammonemia.pdf I hope therefore when I see Dr. K, he can perform these different screenings for me, so I can find out why my ammonia is high. I am not a doctor, YMMV, etc. Take care, RH > > > > > > Things just keep popping up... > > > I found out that my blood ammonia level has been consistently in > > the > > > 80's. My liver function tests are normal and my cardiac profile > > > (triglycerides and lipids) is low normal, and renal tests are > > > excellent. I was told that ammonia can be high with metabolic > > > disorders. Any thoughts? Also, magnesium is on the low side > but > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > touch > > > low too. High ammonia and high lactate levels in my labs > haven't > > > seemed to be linked in any way so far. The metabolics NP asked > if > > I > > > had a hard time with protein in my diet and I said that I do > fine > > > when I'm eating normally but that I started vomiting after 2 > days > > on > > > Atkins. > > > > > > It's kind of funny, I've talked to other parents about how we > know > > > that our kids are having a crisis and it seems like some kids > get > > lab > > > changes and some kids can be really sick and have labs that look > > > perfect. is a " funky lab " kid and I guess I am too. > > There's > > > got to be some correlation between our labs, but my lab changes > are > > > not the same as hers. > > > > > > We're heading into Boston this morning and is having her > > > broviac replaced. It's wiggling out of her chest. She's > staying > > > overnight and hopefully will be home Saturday some time. My > > husband > > > will update her site: www.caringbridge.org/ma/heather > > > > > > Thanks! > > > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 RH The ammonia issue is interesting. Mine was high once. What is the antibiotic for the intestine? How long have you been on it? Thanks Sunny > > Had an abdominal u/s a while ago, it was normal. At that time, I > had a bad gall bladder attack, and the gall bladder testing was > abnormal, but not enough to recommend removal (unless I wanted it > removed, lol). > > I am very interested in (what I hope will be) baseline tests, since I > have young kids I feel that I should be aggressive in confirming my > health status for them and my husband. For example, I went to the > cardiologist for a " baseline " , and found that I do indeed have > bradycardia episodes (slow heartbeat) and may need a pacemaker in the > future. But the echo and stress tests were okay for me. > > I will be grilling Dr. K in Boston about the high ammonia and finding > out why it occurs. Regarding inflammation, I am on an antibiotic > that works only in the intestines, it is hoped that it will kill the > ammonia-producing bacteria, and hasn't had an impact on the good > bacteria (as far as I know, since I haven't had continual problems > with yeast infections). > > Take care, > RH > > > > > > > > > > > > Things just keep popping up... > > > > I found out that my blood ammonia level has been consistently > in > > > the > > > > 80's. My liver function tests are normal and my cardiac > profile > > > > (triglycerides and lipids) is low normal, and renal tests are > > > > excellent. I was told that ammonia can be high with metabolic > > > > disorders. Any thoughts? Also, magnesium is on the low side > > but > > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > > touch > > > > low too. High ammonia and high lactate levels in my labs > > haven't > > > > seemed to be linked in any way so far. The metabolics NP asked > > if > > > I > > > > had a hard time with protein in my diet and I said that I do > > fine > > > > when I'm eating normally but that I started vomiting after 2 > > days > > > on > > > > Atkins. > > > > > > > > It's kind of funny, I've talked to other parents about how we > > know > > > > that our kids are having a crisis and it seems like some kids > > get > > > lab > > > > changes and some kids can be really sick and have labs that > look > > > > perfect. is a " funky lab " kid and I guess I am too. > > > There's > > > > got to be some correlation between our labs, but my lab changes > > are > > > > not the same as hers. > > > > > > > > We're heading into Boston this morning and is having > her > > > > broviac replaced. It's wiggling out of her chest. She's > > staying > > > > overnight and hopefully will be home Saturday some time. My > > > husband > > > > will update her site: www.caringbridge.org/ma/heather > > > > > > > > Thanks! > > > > Heidi > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 RH The ammonia issue is interesting. Mine was high once. What is the antibiotic for the intestine? How long have you been on it? Thanks Sunny > > Had an abdominal u/s a while ago, it was normal. At that time, I > had a bad gall bladder attack, and the gall bladder testing was > abnormal, but not enough to recommend removal (unless I wanted it > removed, lol). > > I am very interested in (what I hope will be) baseline tests, since I > have young kids I feel that I should be aggressive in confirming my > health status for them and my husband. For example, I went to the > cardiologist for a " baseline " , and found that I do indeed have > bradycardia episodes (slow heartbeat) and may need a pacemaker in the > future. But the echo and stress tests were okay for me. > > I will be grilling Dr. K in Boston about the high ammonia and finding > out why it occurs. Regarding inflammation, I am on an antibiotic > that works only in the intestines, it is hoped that it will kill the > ammonia-producing bacteria, and hasn't had an impact on the good > bacteria (as far as I know, since I haven't had continual problems > with yeast infections). > > Take care, > RH > > > > > > > > > > > > Things just keep popping up... > > > > I found out that my blood ammonia level has been consistently > in > > > the > > > > 80's. My liver function tests are normal and my cardiac > profile > > > > (triglycerides and lipids) is low normal, and renal tests are > > > > excellent. I was told that ammonia can be high with metabolic > > > > disorders. Any thoughts? Also, magnesium is on the low side > > but > > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > > touch > > > > low too. High ammonia and high lactate levels in my labs > > haven't > > > > seemed to be linked in any way so far. The metabolics NP asked > > if > > > I > > > > had a hard time with protein in my diet and I said that I do > > fine > > > > when I'm eating normally but that I started vomiting after 2 > > days > > > on > > > > Atkins. > > > > > > > > It's kind of funny, I've talked to other parents about how we > > know > > > > that our kids are having a crisis and it seems like some kids > > get > > > lab > > > > changes and some kids can be really sick and have labs that > look > > > > perfect. is a " funky lab " kid and I guess I am too. > > > There's > > > > got to be some correlation between our labs, but my lab changes > > are > > > > not the same as hers. > > > > > > > > We're heading into Boston this morning and is having > her > > > > broviac replaced. It's wiggling out of her chest. She's > > staying > > > > overnight and hopefully will be home Saturday some time. My > > > husband > > > > will update her site: www.caringbridge.org/ma/heather > > > > > > > > Thanks! > > > > Heidi > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Antibiotic is Xifaxan, I've been on it since September of last year. I was originally on 200 mg per day, and 10 g of lactulose per day. My ammonia levels dropped tremendously (were over 100 at times, now below 10), and I went off the lactulose. I had more symptoms, which responded well to individual lactulose doses, but the doctor decided to increase the Xifaxan, to as much as 400 mg twice per day, but I am only taking 400 mg once per day. My ammonia levels decreased even though I remain on a high protein, low carb diet. My GI doctor says I'm his only patient with high ammonia who he has told to stay on the high protein diet. But even a low protein diet has a significant amount of protein. Take care, RH > > > > > > > > > > Things just keep popping up... > > > > > I found out that my blood ammonia level has been consistently > > in > > > > the > > > > > 80's. My liver function tests are normal and my cardiac > > profile > > > > > (triglycerides and lipids) is low normal, and renal tests are > > > > > excellent. I was told that ammonia can be high with metabolic > > > > > disorders. Any thoughts? Also, magnesium is on the low side > > > but > > > > > urine Mg is normal so I'm not losing it that way.Potassium is a > > > > touch > > > > > low too. High ammonia and high lactate levels in my labs > > > haven't > > > > > seemed to be linked in any way so far. The metabolics NP asked > > > if > > > > I > > > > > had a hard time with protein in my diet and I said that I do > > > fine > > > > > when I'm eating normally but that I started vomiting after 2 > > > days > > > > on > > > > > Atkins. > > > > > > > > > > It's kind of funny, I've talked to other parents about how we > > > know > > > > > that our kids are having a crisis and it seems like some kids > > > get > > > > lab > > > > > changes and some kids can be really sick and have labs that > > look > > > > > perfect. is a " funky lab " kid and I guess I am too. > > > > There's > > > > > got to be some correlation between our labs, but my lab changes > > > are > > > > > not the same as hers. > > > > > > > > > > We're heading into Boston this morning and is having > > her > > > > > broviac replaced. It's wiggling out of her chest. She's > > > staying > > > > > overnight and hopefully will be home Saturday some time. My > > > > husband > > > > > will update her site: www.caringbridge.org/ma/heather > > > > > > > > > > Thanks! > > > > > Heidi > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained > > herein are not necessarily those of the list moderators. The author of > > this e mail is entirely responsible for its content. List members are > > reminded of their responsibility to evaluate the content of the > > postings and consult with their physicians regarding changes in their > > own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends > > one is automatically moderated or removed depending on the severity of > > the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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