Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 Hi Tim, I see you have joined us. There are a lot of very knowledgeable people here from whom I hope to learn a lot. Lea Hello everyone, I am the " Tim " that Lea spoke of. I wanted to explain a little more about the connection (if any) between carbs and lactate. Dr. Shoffner told me that he has seen other patients in whom lactate is normal fasting but spikes postprandially. He said he thinks he knows the approximate place in the metabolic pathway where the block is occurring, but is not certain. He said it may take a few years of research to become certain. His current studies on my biopsied muscle are as follows: 1. Sequence Complex V genes (ATP6 and ATP8) of the mtDNA. 2. Send muscle for glycolytic enzyme testing. Since my antinuclear antibodies also only spike postprandially, I think there is also the possibility that I have an autoimmune disease rather than a mitochondrial disease, in which case this discussion is irrelevant to the members of this list. Time will tell. However, Dr. Shoffner did say that simple sugars are best avoided. Tim P.S. (For Barbara) My fasting insulin is abnormally low! And I am extrememly thin, so I am not happy about avoiding sugar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 Hi Tim, I see you have joined us. There are a lot of very knowledgeable people here from whom I hope to learn a lot. Lea Hello everyone, I am the " Tim " that Lea spoke of. I wanted to explain a little more about the connection (if any) between carbs and lactate. Dr. Shoffner told me that he has seen other patients in whom lactate is normal fasting but spikes postprandially. He said he thinks he knows the approximate place in the metabolic pathway where the block is occurring, but is not certain. He said it may take a few years of research to become certain. His current studies on my biopsied muscle are as follows: 1. Sequence Complex V genes (ATP6 and ATP8) of the mtDNA. 2. Send muscle for glycolytic enzyme testing. Since my antinuclear antibodies also only spike postprandially, I think there is also the possibility that I have an autoimmune disease rather than a mitochondrial disease, in which case this discussion is irrelevant to the members of this list. Time will tell. However, Dr. Shoffner did say that simple sugars are best avoided. Tim P.S. (For Barbara) My fasting insulin is abnormally low! And I am extrememly thin, so I am not happy about avoiding sugar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 Hi Tim, I think you must be the same Tim I've heard from before. The address looks familiar. Thanks for the post about Dr. Shoffner. Interesting that your insulin is low. Mine is high though we are both extremely thin, for whatever that's worth.. :-) Take care, Barbara P.S. (For Barbara) My fasting insulin is abnormally low! And I am extrememly thin, so I am not happy about avoiding sugar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 Does that mean he suspects you may have a complex v defect, or it has already been ruled out? The reason I ask is because I have an atpase 6 defect in complex 5 (narp) and do so much better on the low carb. candtcampbell@... wrote: His current studies on my biopsied muscle are as follows: 1. Sequence Complex V genes (ATP6 and ATP8) of the mtDNA. 2. Send muscle for glycolytic enzyme testing. Since my antinuclear antibodies also only spike postprandially, I think there is also the possibility that I have an autoimmune disease rather than a mitochondrial disease, in which case this discussion is irrelevant to the members of this list. Time will tell. However, Dr. Shoffner did say that simple sugars are best avoided. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 > Since my antinuclear antibodies also only spike postprandially, I > thinkthere is also the possibility that I have an autoimmune > disease rather than a mitochondrial disease, in which case this > discussion is irrelevant > to the members of this list. Time will tell. However, Dr. Shoffner > did say that simple sugars are best avoided. I don't know about others, but autoimmune disease has definitely NOT been ruled out for me. I have a high level of an antibody associated with autoimmune disease, anti-cardiolipin antibody, so I have a form of antiphospholipid syndrome. I think my mito disease is secondary to another disorder, because I do present differently than many on this list (for example, I tolerate heavy exercise well, but can't tolerate light exercise). But my muscle biopsy did show defects in the activity of different mito complexes. Take care, RH > From: " Lea " > Subject: Re: carbs and lactic acid > > > Hi Barbara, > > I'm afraid I don't have the answers to all your questions...although I > have asked my daughter who majored in microbiology to explain why sugar > might raise lactate a lot...she said she would try to give me a > scientific explanation in the next day or so. > > Also, I am going back to see Dr. Shoffner sometime this Spring after he > is finished sequencing my mito DNA and I will take a list of questions > for him to answer. I am hoping that my daughter could accompany me on > the trip as she could understand a lot of the scientific stuff a lot > better than I can. My brain seems to be affected by this mito thing and > gets tired very quickly, as does every other part of me! > > Personally, I think that since our mitochondria are damaged we tend to > take the lactate pathway frequently and when a lot of glucose is > available...such as when we eat a lot of sugar or refined carbs...our > lactate pathway starts going into overdrive. That is only my opinion, > however...but it would make sense since lactate levels rise when we have > eaten. Perhaps that is why they want us to fast when they do the > testing. > > I know that both Tim and I seem to feel better before we eat. Both he > and I have a lot anerobic threshold so our oxygen utilization is badly > impaired. Tim doesn't have the same diagnosis as I do...they are still > trying to figure out what is causing his problems. > > I have been diagnosed with a complex I defect by Shoffner. I figure that > means that I have a kind of " short circuit " even before I can begin > Oxidatative Phosphorylation and that is probably why I produce so much > lactate and to anerobic so quickly since I don't produce much energy > aerobically. I also have high pyruvate which I guess means that it is > there ready to go into the ATP cycle and produce energy but somehow can't > get in to do its job and is just left lying around in my body. > > As for what determines what path or " fork in the road " the glucose takes, > I don't know...I don't know if the docs know either, but I will keep > looking and will post when I get any info. Take care. > > Lea > RE: Re: Calcium supplements and teenage girls > > > Lea, I'm interested in your information that sugar can raise levels > of > lactate. Do you know the mechanism involved or can you point me to > some > web > resources that might illuminate the connection? > > > > Thanks. > > Barbara > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2005 Report Share Posted January 16, 2005 , I believe Dr. Shoffner has ruled out defects in Complexes I thru IV, but has not yet ruled out V. What does narp mean? Tim You wrote, " Does that mean he suspects you may have a complex v defect, or it has already been ruled out? The reason I ask is because I have an atpase 6 defect in complex 5 (narp) and do so much better on the low carb. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 There seem to be several of us on the list with a autoimmune component along with the mito, I think it is possible that the two are tied and not seperate. Look at how many on the mito list that are immunedeficient yet the docs say there is no tie. there are way too many for it not to be, that and a clotting disorder..just my two cents. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2005 Report Share Posted January 17, 2005 I agree For what it is worth, I have a number of auto-immune irregularities. Very elevated rheumatoid count, without having rheumatoid arthritis. (Although I was misdiagnosed with it for 6 years. The muscle weakness caused me to get tendonitis from every-day activites if I pushed or pulled just a little too hard. I just never thought it was rheumatoid arthritis though, because I did not fit the profile very well) I also have thyroid antibodies. Also, a number of people I know who have been diagnosed with mito have the anti-phospholipid problem. Not sure that I got that name/spelling right. Regards Sunny > There seem to be several of us on the list with a autoimmune > component along > with the mito, I think it is possible that the two are tied and not > seperate. > Look at how many on the mito list that are immunedeficient yet the > docs say > there is no tie. there are way too many for it not to be, that and a > clotting > disorder..just my two cents. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi .. I also have noticed an apparent section of people on the list with an autoimmune component..I have read the mito. literature and the Docs. seem to imply there is no connection..yet the bio- chemical/endo research seems to show an apparent mito. dysfunction in autoimmune disorders in a much wider population.... In my own opinion maybe the endo's and neuro's should get together and combine more of the mito. research areas.. I was initially thoight to have Hashimoto's Encephalitis and my parietal antibodies are way off scale, too high to read in the lab... just my pennyworth.. Gillian > There seem to be several of us on the list with a autoimmune component along > with the mito, I think it is possible that the two are tied and not seperate. > Look at how many on the mito list that are immunedeficient yet the docs say > there is no tie. there are way too many for it not to be, that and a clotting > disorder..just my two cents. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi Sunny... I also agree with and yourself..I have also tested positive with rheumatoid antibodies but also have degenerativve discs, swollen stiff joints etc which 'fit' in the docs opinion a diagnosis of 'arthritis' as a component of my overall mito... I was not aware of the anti-phospholipid problem and will read about it and discuss with my Doc.. Gillian -- In , z39z@a... wrote: > I agree > > For what it is worth, I have a number of auto-immune irregularities. > Very elevated rheumatoid count, without having rheumatoid arthritis. > (Although I was misdiagnosed with it for 6 years. The muscle weakness > caused me to get tendonitis from every-day activites if I pushed or > pulled just a little too hard. I just never thought it was rheumatoid > arthritis though, because I did not fit the profile very well) I also > have thyroid antibodies. > Also, a number of people I know who have been diagnosed with mito have > the anti-phospholipid problem. Not sure that I got that name/spelling > right. > > Regards > > Sunny > > > > There seem to be several of us on the list with a autoimmune > > component along > > with the mito, I think it is possible that the two are tied and not > > seperate. > > Look at how many on the mito list that are immunedeficient yet the > > docs say > > there is no tie. there are way too many for it not to be, that and a > > clotting > > disorder..just my two cents. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi Sunny... I also agree with and yourself..I have also tested positive with rheumatoid antibodies but also have degenerativve discs, swollen stiff joints etc which 'fit' in the docs opinion a diagnosis of 'arthritis' as a component of my overall mito... I was not aware of the anti-phospholipid problem and will read about it and discuss with my Doc.. Gillian -- In , z39z@a... wrote: > I agree > > For what it is worth, I have a number of auto-immune irregularities. > Very elevated rheumatoid count, without having rheumatoid arthritis. > (Although I was misdiagnosed with it for 6 years. The muscle weakness > caused me to get tendonitis from every-day activites if I pushed or > pulled just a little too hard. I just never thought it was rheumatoid > arthritis though, because I did not fit the profile very well) I also > have thyroid antibodies. > Also, a number of people I know who have been diagnosed with mito have > the anti-phospholipid problem. Not sure that I got that name/spelling > right. > > Regards > > Sunny > > > > There seem to be several of us on the list with a autoimmune > > component along > > with the mito, I think it is possible that the two are tied and not > > seperate. > > Look at how many on the mito list that are immunedeficient yet the > > docs say > > there is no tie. there are way too many for it not to be, that and a > > clotting > > disorder..just my two cents. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi, Gillian I never had swollen joints. Instead, I had inflamed tendons. The one in my hand was very obvious, raised and red, going from the middle finger through the palm of my hand. They usually lasted for a short time, although my heel chord was bad for a year once. What first made me question the diagnosis of rheumatoid arthritis is the fact that they never were symmetrical. One hand, one arm, one knee, etc. When I stopped taking the meds for arthritis, my condition got no worse. My joints are not deformed, never were. The swelling/pain, inflamation would come and go. Finally, over the course of years I began to associate some movements to a particular pain. That is when I decided to try to strengthen my muscles, increase my activity, but using proper form of weight lifting, instead of protecting my joints by decreasing my activity. I felt I was using the wrong moves to do my everyday things. I did it very very slowly and carefully at first, using almost no weights, and learned that I needed a long " recovery " time between sessions. But, without the meds, and with the strengthening, my incidents decreased dramatically after about a year. Then I found a doc that diagnosed mito, an immunologist, and he said I had had inflamation of the tendons. I also have a bunch of bad discs. I now believe they got " bad " because my back muscles had been weak for years, and consequently I had put too much strain on the actual spine. When I am very very good about my exercising, my back pain is considerably better also. My muscles were/are weak. Just don't have the power that I should, and I have to work hard to maintain some power in them, but the weight lifting does do that. Hmmmm...don't know if I have been clear...sorry it is so long... Regards Sunny > > > Hi Sunny... > > I also agree with and yourself..I have also tested positive > with rheumatoid antibodies but also have degenerativve discs, > swollen stiff joints etc which 'fit' in the docs opinion a diagnosis > of 'arthritis' as a component of my overall mito... > > I was not aware of the anti-phospholipid problem and will read about > it and discuss with my Doc.. > > Gillian > > > -- In , z39z@a... wrote: > > I agree > > > > For what it is worth, I have a number of auto-immune > irregularities. > > Very elevated rheumatoid count, without having rheumatoid > arthritis. > > (Although I was misdiagnosed with it for 6 years. The muscle > weakness > > caused me to get tendonitis from every-day activites if I pushed > or > > pulled just a little too hard. I just never thought it was > rheumatoid > > arthritis though, because I did not fit the profile very well) I > also > > have thyroid antibodies. > > Also, a number of people I know who have been diagnosed with mito > have > > the anti-phospholipid problem. Not sure that I got that > name/spelling > > right. > > > > Regards > > > > Sunny > > > > > > > There seem to be several of us on the list with a autoimmune > > > component along > > > with the mito, I think it is possible that the two are tied > and not > > > seperate. > > > Look at how many on the mito list that are immunedeficient yet > the > > > docs say > > > there is no tie. there are way too many for it not to be, that > and a > > > clotting > > > disorder..just my two cents. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2005 Report Share Posted January 18, 2005 Hi, Gillian I never had swollen joints. Instead, I had inflamed tendons. The one in my hand was very obvious, raised and red, going from the middle finger through the palm of my hand. They usually lasted for a short time, although my heel chord was bad for a year once. What first made me question the diagnosis of rheumatoid arthritis is the fact that they never were symmetrical. One hand, one arm, one knee, etc. When I stopped taking the meds for arthritis, my condition got no worse. My joints are not deformed, never were. The swelling/pain, inflamation would come and go. Finally, over the course of years I began to associate some movements to a particular pain. That is when I decided to try to strengthen my muscles, increase my activity, but using proper form of weight lifting, instead of protecting my joints by decreasing my activity. I felt I was using the wrong moves to do my everyday things. I did it very very slowly and carefully at first, using almost no weights, and learned that I needed a long " recovery " time between sessions. But, without the meds, and with the strengthening, my incidents decreased dramatically after about a year. Then I found a doc that diagnosed mito, an immunologist, and he said I had had inflamation of the tendons. I also have a bunch of bad discs. I now believe they got " bad " because my back muscles had been weak for years, and consequently I had put too much strain on the actual spine. When I am very very good about my exercising, my back pain is considerably better also. My muscles were/are weak. Just don't have the power that I should, and I have to work hard to maintain some power in them, but the weight lifting does do that. Hmmmm...don't know if I have been clear...sorry it is so long... Regards Sunny > > > Hi Sunny... > > I also agree with and yourself..I have also tested positive > with rheumatoid antibodies but also have degenerativve discs, > swollen stiff joints etc which 'fit' in the docs opinion a diagnosis > of 'arthritis' as a component of my overall mito... > > I was not aware of the anti-phospholipid problem and will read about > it and discuss with my Doc.. > > Gillian > > > -- In , z39z@a... wrote: > > I agree > > > > For what it is worth, I have a number of auto-immune > irregularities. > > Very elevated rheumatoid count, without having rheumatoid > arthritis. > > (Although I was misdiagnosed with it for 6 years. The muscle > weakness > > caused me to get tendonitis from every-day activites if I pushed > or > > pulled just a little too hard. I just never thought it was > rheumatoid > > arthritis though, because I did not fit the profile very well) I > also > > have thyroid antibodies. > > Also, a number of people I know who have been diagnosed with mito > have > > the anti-phospholipid problem. Not sure that I got that > name/spelling > > right. > > > > Regards > > > > Sunny > > > > > > > There seem to be several of us on the list with a autoimmune > > > component along > > > with the mito, I think it is possible that the two are tied > and not > > > seperate. > > > Look at how many on the mito list that are immunedeficient yet > the > > > docs say > > > there is no tie. there are way too many for it not to be, that > and a > > > clotting > > > disorder..just my two cents. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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