Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 Just one question, , are you saying that a deficiency of taurine would be apparent in a muscle biopsy? Or am I misunderstanding? (Probably!) I've had six muscle biopsies, two for diagnosis, four for research, and none of them have ever attempted to measure any deficiency in amino acids, though we've found all kinds of enzyme deficiencies and other things missing-in-action such as ATP etc. I was not aware that there were amino acid assays for muscle tissue. Glad the supplements helped you. That's encouraging to hear. It does pay to pay attention to all lab results. I've been able to help myself a lot that way too, especially since none of my docs are mito experts. Thanks for sharing, Barbara > Heart failure > > For those with symptoms who have had a muscle biopsy...I just went > through a scare with tachycardia. If you have this and no explanation > has been found check your Taurine levels as Taurine is crucial for the > proper function of heart muscle. > > If you've had a muscle biopsy your level for this should show up in > your results! > > Good luck to everyone dealing with this! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Hi Barbara, Yes my tests came back with a list of all the amino acids and the levels of them. There are some amino acids that are " essential " meaning that they aren't derived from another amino acid. Too much Taurine deficiency in the very young is serious business and in adults it even seems significant. The other one I'm taking is Ornithine. I'm also low on one called Aspergine but that isn't easily obtained as a separate tablet. The Taurine is available alone and seems to be a common supplement for various conditions even in people with so called normal levels. I'm going to have another muscle biopsy soon and will again stop in and post my results. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 I've had amino acids checked in urine. That's pretty standard mito testing. Barbara > Re: Heart failure/taurine > > Hi Barbara, > > Yes my tests came back with a list of all the amino acids and the > levels of them. > > There are some amino acids that are " essential " meaning that they > aren't derived from another amino acid. > > Too much Taurine deficiency in the very young is serious business > and in adults it even seems significant. > > The other one I'm taking is Ornithine. > > I'm also low on one called Aspergine but that isn't easily obtained > as a separate tablet. The Taurine is available alone and seems to be > a common supplement for various conditions even in people with so > called normal levels. > > I'm going to have another muscle biopsy soon and will again stop in > and post my results. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 Yes, me too. Some of my urinary amino acid levels are low, but it seemed like my MDA mito doctor had the same view others noted - " only high is important " . For example, the taurine level is at 20% of the low normal value, asparagine is 25% of low normal. Something called " sarcosine " is high - haven't gotten an interpretation on that either - it's related to the mitochondrial proteins, but " the general consensus " is that it is meaningless. Anyway, the apparently odd (if you believe the lab that there are low and high cutoff values) 24-hr urine amino acid results are a key reason I'm going to see a metabolic specialist to help figure out if there is an enzyme problem in addition to/causing my mitochondrial disease. Well, that and the high blood ammonia... I suggest people contact their doctors about supplementation - amino acids are not the same as vitamins, and one shouldn't just start taking them without medical guidance. Has anyone gotten an interpretation of low levels in urine, other than " if it ain't high it's okay " ? We should also note whether we're talking about blood or urine levels, the level could be high in blood and low in urine, or really any combination of results. Although I'll assume that if the amino acid levels are in conjunction with a muscle biopsy, it's probably a blood level. I do wonder if the reason I have decreased symptoms on a high-protein diet has to do with extra amino acids being available... Take care, RH > I've had amino acids checked in urine. That's pretty standard mito testing. > > Barbara > > > Re: Heart failure/taurine > > > > Hi Barbara, > > > > Yes my tests came back with a list of all the amino acids and the > > levels of them. > > > > There are some amino acids that are " essential " meaning that they > > aren't derived from another amino acid. > > > > Too much Taurine deficiency in the very young is serious business > > and in adults it even seems significant. > > > > The other one I'm taking is Ornithine. > > > > I'm also low on one called Aspergine but that isn't easily obtained > > as a separate tablet. The Taurine is available alone and seems to be > > a common supplement for various conditions even in people with so > > called normal levels. > > > > I'm going to have another muscle biopsy soon and will again stop in > > and post my results. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 RH wrote: > I suggest people contact their doctors about supplementation - amino > acids are not the same as vitamins, and one shouldn't just start > taking them without medical guidance. Good advice. Many years ago I got into trouble taking an OTC protein powder with many amino acids. At the time I was under pressure from a relative to try it and finally gave in, assuming if it didn't help, it would be harmless. Not so! > We should also note whether we're talking about blood or > urine levels, the level could be high in blood and low in urine, or > really any combination of results. More good advice. > I do wonder if the reason I have decreased symptoms on a high-protein > diet has to do with extra amino acids being available... I've wondered the same thing, especially since I've switched my tube formula to Prosure, which is designed with a " unique blend " of amino acids to help rebuild muscle. It also includes 45 mg taurine per 8 oz, though I believe my previous formula Advera also had some taurine. For whatever reason, my arrhythmias are much better in recent months. Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 RH and I think that is a good point RH. I hesitate to add anything without running it by one of my docs. Another thing to watch in comparing values from one draw to another or from person to person is the value range. There are several systems (way of testing and presenting values) in use. It is interesting, RH, that I also have a complex I defect and my Sarcosine is highish in blood and 0 in both urine samples (9 years apart). My blood and urine amino acids were drawn at the same time as my muscle biopsy, but the values were not measured in muscle. They were repeated when I started seeing Dr. Cohen, but I don't seem to have those reports in my notebook. I do have a urine screen from 9 years before my trip to Atlanta. laurie > > RH wrote: > > > I suggest people contact their doctors about supplementation - amino > > acids are not the same as vitamins, and one shouldn't just start > > taking them without medical guidance. > > Good advice. Many years ago I got into trouble taking an OTC protein powder > with many amino acids. At the time I was under pressure from a relative to > try it and finally gave in, assuming if it didn't help, it would be > harmless. Not so! > > > We should also note whether we're talking about blood or > > urine levels, the level could be high in blood and low in urine, or > > really any combination of results. > > More good advice. > > > I do wonder if the reason I have decreased symptoms on a high-protein > > diet has to do with extra amino acids being available... > > I've wondered the same thing, especially since I've switched my tube formula > to Prosure, which is designed with a " unique blend " of amino acids to help > rebuild muscle. It also includes 45 mg taurine per 8 oz, though I believe my > previous formula Advera also had some taurine. For whatever reason, my > arrhythmias are much better in recent months. > > Barbara > > > > > > 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 August 9, 2005 Report Share Posted August 9, 2005 Hi, everybody This certainly is an interesting topic. Thanks to all who have contributed, and thank you for starting this ball rolling. First, a dumb question - organic acids and amino acids - same thing?? I must admit I haven't paid attention to that. RH and Barbara and Laurie, as usual you have very good points, especially about supplementing. On the other hand, I do think there may be individual deficiencies that research has not even gotten to finding what is " optimal " (vs the good old RDA) and how a person whose biochemistry is " less that optimal " or deficient, or defective, however we want to say it (and isn't that what mitochondrial disorders result in?) might be affected. I just think they don't know enough yet. Anyway, The individual obesrvations made here are very interesting and extremely helpful. I, too, was helped a lot by cutting carbs and increasing protein. And I did take some general protein supplements when I was going heavy duty on the resistance training. Never could figure out if it was the training, protein supplements or creatine that contributed most to my regaining some muscle. But, I thought it was the carbs that were doing me in (the post prandial hypoglycemia: glucose diving to 31 at the 2 hour mark of the GGT). I never thought about the protein and amino acids helping me in a profound way. In other words, that I might have an inherent deficit of amino acids, or need for more than what a normal diet provides. All very interesting. I will try to examine this question more. Thanks again to those who contributed. I am glad to hear that varying the diet is helping some people. Barbara, I am glad to hear from you, and that you are finding some relief from the arrythmias. I have an intermittent fast pulse. I will try to observe a difference when I up my protein again. It is time for me to get a little more disciplined again. Regards to all Sunny PS - I have been silent for a while, trying to sort out/ digest the info from St. Louis. It really was intense. I did come to the conclusion that the audio tapes of several people will be the only way for me to totally get the picture, so have decided to order them. If anyone would like my recommendations regarding who presented, or which tapes I found helpful, (and I don't have them yet) I will be happy to share that info. Several people spoke on anesthesia, which has been a huge concern of mine. I will try to post on it after I have a better picture. Regards again... > Yes, me too. Some of my urinary amino acid levels are low, but it > seemed like my MDA mito doctor had the same view others noted - " only > high is important " . For example, the taurine level is at 20% of the > low normal value, asparagine is 25% of low normal. Something > called " sarcosine " is high - haven't gotten an interpretation on that > either - it's related to the mitochondrial proteins, but " the general > consensus " is that it is meaningless. > > Anyway, the apparently odd (if you believe the lab that there are low > and high cutoff values) 24-hr urine amino acid results are a key > reason I'm going to see a metabolic specialist to help figure out if > there is an enzyme problem in addition to/causing my mitochondrial > disease. Well, that and the high blood ammonia... > > I suggest people contact their doctors about supplementation - amino > acids are not the same as vitamins, and one shouldn't just start > taking them without medical guidance. Has anyone gotten an > interpretation of low levels in urine, other than " if it ain't high > it's okay " ? We should also note whether we're talking about blood or > urine levels, the level could be high in blood and low in urine, or > really any combination of results. Although I'll assume that if the > amino acid levels are in conjunction with a muscle biopsy, it's > probably a blood level. > > I do wonder if the reason I have decreased symptoms on a high-protein > diet has to do with extra amino acids being available... > > Take care, > RH > > > > I've had amino acids checked in urine. That's pretty standard mito > testing. > > > > Barbara > > > > > Re: Heart failure/taurine > > > > > > Hi Barbara, > > > > > > Yes my tests came back with a list of all the amino acids and the > > > levels of them. > > > > > > There are some amino acids that are " essential " meaning that they > > > aren't derived from another amino acid. > > > > > > Too much Taurine deficiency in the very young is serious business > > > and in adults it even seems significant. > > > > > > The other one I'm taking is Ornithine. > > > > > > I'm also low on one called Aspergine but that isn't easily > obtained > > > as a separate tablet. The Taurine is available alone and seems to > be > > > a common supplement for various conditions even in people with so > > > called normal levels. > > > > > > I'm going to have another muscle biopsy soon and will again stop > in > > > and post my results. > > > > > > > > > > > > > > > > > > > > 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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