Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Excellant! Kathy, We all need to know exactly what you said-the exact ingredients and the amts of those too. I think we are all prone to jump quick for some help, any help and many times don't check out the details and background. I would like to try and see if taking this Mannatech would help some of our families vomiting and legs giving out problems-maybe the brain fog is related to this excess lactic acid. I also had at one time considered the DCA and asked a Dr. couldn't we just try a prescription and see if it helps clear our minds to no avail. I did not know it was so dangerous, thanks for the infor. With us total fasting clears our systems and then they work which is different than what you say for you and/or yours. I also liked your explanation of perhaps the body having the lactic acid higher is the bodies way of balancing something else. That could be or might not be, but we need to think logically with these disorders. Like when the University tests said our cells are sucking up 4 times the normal amt of calcium. I jumped on it thinking we needed to take extra calcium. Then the biochemist said slow down-the fact that this is happening says there is a cell permeability problem and giving even more calcium for the cells to suck up could be detrimental. What you need to do is find out why this is happening and try to correct the balance of the eletrolytes. I know sometimes the body has protective measures it takes to help correct an imbalance somewhere and if we destroy it's protective mechanism we might make things worse. Like the should you treat a mild fever or let it burn out the pathogen debate. ON the other hand, maybe we DO need to get rid of the excess lactic acid and that is the END of the cycle and it will only HELP us. How do we figure that out? Any biochemists among us? S. Re: Mannatech > > >> >>This is fascinating information, Chrissy. I am anxious to talk with Dr. >>Cohen about this. Excpecially since Caitlin just recently had an MRS >>which indicated chronic lactic acidosis in her brain. There were >>several spikes in different parts of her brain, and when Dr. Cohen told >>me the results he never mentioned anything about trying the manatech >>products. I guess I need to check that out and jog his memory a bit. >> > > >A couple of things about Mannatech - I researched this stuff (plus got the >whole box of stuff from a company in Ireland on another " sure cure " several >months ago and READ it - every single page!! Most of it is >elusive papers on single ingredients -- nothing that even identified all of >the ingredients - and that is my problem with Mannatech right now. We all >know that we are sensitive to certain ingredients - some immediately and >some from build up over time. Either way, we like to know what's in the >things we take. Well, Mannatech's products have a couple of ingredients >that are even unidentified as " patent pending " or " ingredients not yet >identified " on their own web page!! Yes, there are ingredients that are >very >healthy and good for you - but I am too careful to take anything without >knowing ALL the contents. > >As you all know, Steph's primary " problem " is lactic acid. Not much gets by >me that makes any kind of difference, and we've looked at everything from >bicarb to DCA. In our case, the lactic acid ais a chronic part of the state >of the cell, and neither fasting nor eating seem to affect the levels which >continue to be 3-5 times normal. If there was something that would help, >without harming, I guarantee that I would have found it by now and tested >it. > >I was approached in 1995 at the Indianapolis conference by the folks in >Florida to enroll in the DCA trials that were in their infancy at >the time. DCA *is* a treatment for lactic acid but it also can cause grave >harm and destruction to the brain. It should only be used for people who >are at risk of death, according to my doctor. > >Lactic acid *can* kill you - but you can also live with it and there are >treatments that make living less likely. Be very careful in trying >something that impacts the LA levels in your body - that alone would make >me refuse the Mannatech, even if it were a true claim. It could actually be >the way your body tells you it's doing the best it can do, and changing that >could make things worse. > >Be very very careful, and talk to your doctors before using anything to any >great degree!! > >>Can you tell me what the Ambrotose and Empact are, and how much they >>cost? > > >I would really be interested also if the full ingredients are listed. >Please let us >all know what these are because if they truly *do* impact lactic acid, we >need >to push for a study to determine all the possibilities! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Excellant! Kathy, We all need to know exactly what you said-the exact ingredients and the amts of those too. I think we are all prone to jump quick for some help, any help and many times don't check out the details and background. I would like to try and see if taking this Mannatech would help some of our families vomiting and legs giving out problems-maybe the brain fog is related to this excess lactic acid. I also had at one time considered the DCA and asked a Dr. couldn't we just try a prescription and see if it helps clear our minds to no avail. I did not know it was so dangerous, thanks for the infor. With us total fasting clears our systems and then they work which is different than what you say for you and/or yours. I also liked your explanation of perhaps the body having the lactic acid higher is the bodies way of balancing something else. That could be or might not be, but we need to think logically with these disorders. Like when the University tests said our cells are sucking up 4 times the normal amt of calcium. I jumped on it thinking we needed to take extra calcium. Then the biochemist said slow down-the fact that this is happening says there is a cell permeability problem and giving even more calcium for the cells to suck up could be detrimental. What you need to do is find out why this is happening and try to correct the balance of the eletrolytes. I know sometimes the body has protective measures it takes to help correct an imbalance somewhere and if we destroy it's protective mechanism we might make things worse. Like the should you treat a mild fever or let it burn out the pathogen debate. ON the other hand, maybe we DO need to get rid of the excess lactic acid and that is the END of the cycle and it will only HELP us. How do we figure that out? Any biochemists among us? S. Re: Mannatech > > >> >>This is fascinating information, Chrissy. I am anxious to talk with Dr. >>Cohen about this. Excpecially since Caitlin just recently had an MRS >>which indicated chronic lactic acidosis in her brain. There were >>several spikes in different parts of her brain, and when Dr. Cohen told >>me the results he never mentioned anything about trying the manatech >>products. I guess I need to check that out and jog his memory a bit. >> > > >A couple of things about Mannatech - I researched this stuff (plus got the >whole box of stuff from a company in Ireland on another " sure cure " several >months ago and READ it - every single page!! Most of it is >elusive papers on single ingredients -- nothing that even identified all of >the ingredients - and that is my problem with Mannatech right now. We all >know that we are sensitive to certain ingredients - some immediately and >some from build up over time. Either way, we like to know what's in the >things we take. Well, Mannatech's products have a couple of ingredients >that are even unidentified as " patent pending " or " ingredients not yet >identified " on their own web page!! Yes, there are ingredients that are >very >healthy and good for you - but I am too careful to take anything without >knowing ALL the contents. > >As you all know, Steph's primary " problem " is lactic acid. Not much gets by >me that makes any kind of difference, and we've looked at everything from >bicarb to DCA. In our case, the lactic acid ais a chronic part of the state >of the cell, and neither fasting nor eating seem to affect the levels which >continue to be 3-5 times normal. If there was something that would help, >without harming, I guarantee that I would have found it by now and tested >it. > >I was approached in 1995 at the Indianapolis conference by the folks in >Florida to enroll in the DCA trials that were in their infancy at >the time. DCA *is* a treatment for lactic acid but it also can cause grave >harm and destruction to the brain. It should only be used for people who >are at risk of death, according to my doctor. > >Lactic acid *can* kill you - but you can also live with it and there are >treatments that make living less likely. Be very careful in trying >something that impacts the LA levels in your body - that alone would make >me refuse the Mannatech, even if it were a true claim. It could actually be >the way your body tells you it's doing the best it can do, and changing that >could make things worse. > >Be very very careful, and talk to your doctors before using anything to any >great degree!! > >>Can you tell me what the Ambrotose and Empact are, and how much they >>cost? > > >I would really be interested also if the full ingredients are listed. >Please let us >all know what these are because if they truly *do* impact lactic acid, we >need >to push for a study to determine all the possibilities! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 1999 Report Share Posted June 15, 1999 Excellant! Kathy, We all need to know exactly what you said-the exact ingredients and the amts of those too. I think we are all prone to jump quick for some help, any help and many times don't check out the details and background. I would like to try and see if taking this Mannatech would help some of our families vomiting and legs giving out problems-maybe the brain fog is related to this excess lactic acid. I also had at one time considered the DCA and asked a Dr. couldn't we just try a prescription and see if it helps clear our minds to no avail. I did not know it was so dangerous, thanks for the infor. With us total fasting clears our systems and then they work which is different than what you say for you and/or yours. I also liked your explanation of perhaps the body having the lactic acid higher is the bodies way of balancing something else. That could be or might not be, but we need to think logically with these disorders. Like when the University tests said our cells are sucking up 4 times the normal amt of calcium. I jumped on it thinking we needed to take extra calcium. Then the biochemist said slow down-the fact that this is happening says there is a cell permeability problem and giving even more calcium for the cells to suck up could be detrimental. What you need to do is find out why this is happening and try to correct the balance of the eletrolytes. I know sometimes the body has protective measures it takes to help correct an imbalance somewhere and if we destroy it's protective mechanism we might make things worse. Like the should you treat a mild fever or let it burn out the pathogen debate. ON the other hand, maybe we DO need to get rid of the excess lactic acid and that is the END of the cycle and it will only HELP us. How do we figure that out? Any biochemists among us? S. Re: Mannatech > > >> >>This is fascinating information, Chrissy. I am anxious to talk with Dr. >>Cohen about this. Excpecially since Caitlin just recently had an MRS >>which indicated chronic lactic acidosis in her brain. There were >>several spikes in different parts of her brain, and when Dr. Cohen told >>me the results he never mentioned anything about trying the manatech >>products. I guess I need to check that out and jog his memory a bit. >> > > >A couple of things about Mannatech - I researched this stuff (plus got the >whole box of stuff from a company in Ireland on another " sure cure " several >months ago and READ it - every single page!! Most of it is >elusive papers on single ingredients -- nothing that even identified all of >the ingredients - and that is my problem with Mannatech right now. We all >know that we are sensitive to certain ingredients - some immediately and >some from build up over time. Either way, we like to know what's in the >things we take. Well, Mannatech's products have a couple of ingredients >that are even unidentified as " patent pending " or " ingredients not yet >identified " on their own web page!! Yes, there are ingredients that are >very >healthy and good for you - but I am too careful to take anything without >knowing ALL the contents. > >As you all know, Steph's primary " problem " is lactic acid. Not much gets by >me that makes any kind of difference, and we've looked at everything from >bicarb to DCA. In our case, the lactic acid ais a chronic part of the state >of the cell, and neither fasting nor eating seem to affect the levels which >continue to be 3-5 times normal. If there was something that would help, >without harming, I guarantee that I would have found it by now and tested >it. > >I was approached in 1995 at the Indianapolis conference by the folks in >Florida to enroll in the DCA trials that were in their infancy at >the time. DCA *is* a treatment for lactic acid but it also can cause grave >harm and destruction to the brain. It should only be used for people who >are at risk of death, according to my doctor. > >Lactic acid *can* kill you - but you can also live with it and there are >treatments that make living less likely. Be very careful in trying >something that impacts the LA levels in your body - that alone would make >me refuse the Mannatech, even if it were a true claim. It could actually be >the way your body tells you it's doing the best it can do, and changing that >could make things worse. > >Be very very careful, and talk to your doctors before using anything to any >great degree!! > >>Can you tell me what the Ambrotose and Empact are, and how much they >>cost? > > >I would really be interested also if the full ingredients are listed. >Please let us >all know what these are because if they truly *do* impact lactic acid, we >need >to push for a study to determine all the possibilities! > >Kathy > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 1999 Report Share Posted August 12, 1999 Has anyone heard of Mannatech products? A friend from church has a sister-in-law who takes their products and swears by them. This woman is an Occupational Therapist and has seen great improvement in children and adults with various medical problems. I don't know much about this company and would like to hear any opinions on their products, good or bad! For anyone who is interested, Mannatech has a website at http://www.mannatech.com/PRDHome.asp. Thanks, Lipps, mom to three - , Mackenzie and Savannah (3 yrs. old) Complex I encephalomyopathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 , While I am typing this email I am sitting in the Mc House in Cleveland. We just got confirmation from Dr Cohen last night that does in deed have a Mito Disease based on the preliminary report from his muscle biopsy. has been taking Mannatech Products from about a month and I asked Dr Cohen what he thought about them. He said " I have heard of them and yes I suggest continue them especially the Ambratose and Empact which have been shown to LOWER LACTIC acid levels in clinical trials. " Needless to say that if the Wizard himself endorses them then I will beg borrow and steal to get them. and -----------confirmed Mito and Possible Pearsons Syndrome (any one heard of this syndrome--------Dr Cohen had the Oncologist do a bone marrow biopsy to determine if he has this ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 , While I am typing this email I am sitting in the Mc House in Cleveland. We just got confirmation from Dr Cohen last night that does in deed have a Mito Disease based on the preliminary report from his muscle biopsy. has been taking Mannatech Products from about a month and I asked Dr Cohen what he thought about them. He said " I have heard of them and yes I suggest continue them especially the Ambratose and Empact which have been shown to LOWER LACTIC acid levels in clinical trials. " Needless to say that if the Wizard himself endorses them then I will beg borrow and steal to get them. and -----------confirmed Mito and Possible Pearsons Syndrome (any one heard of this syndrome--------Dr Cohen had the Oncologist do a bone marrow biopsy to determine if he has this ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 Anne I am able to get it for you Wholesale if you are interested-----------I but it in bulk case and would be able to arrange it to be delivered to you at my cost. I hope this helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 He said " I have heard of them > and yes I suggest continue them especially the Ambratose and Empact > which have been shown to LOWER LACTIC acid levels in clinical trials. " , First I am glad that you may be getting some answers although I am sure you wish you could wake up and it would all be a dream. Still knowledge is power and it sounds like you are well on your way to understanding better what is going on with . Second, thanks for posting that as my two sons suffer from chronic lactic acidosis despite IV and J tube medications to treat it. I plan to look into these two products this weekend now . Thanks for passing that info along! Anne, mom to: Brittany, 12 Zachary, 7, G tube, J tube, CVL for TPN/lipids, adrenal insufficient Abby, 6 , , 27 months, G tube, J tube, CVL for TPN/lipids, GH deficient ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 He said " I have heard of them > and yes I suggest continue them especially the Ambratose and Empact > which have been shown to LOWER LACTIC acid levels in clinical trials. " , First I am glad that you may be getting some answers although I am sure you wish you could wake up and it would all be a dream. Still knowledge is power and it sounds like you are well on your way to understanding better what is going on with . Second, thanks for posting that as my two sons suffer from chronic lactic acidosis despite IV and J tube medications to treat it. I plan to look into these two products this weekend now . Thanks for passing that info along! Anne, mom to: Brittany, 12 Zachary, 7, G tube, J tube, CVL for TPN/lipids, adrenal insufficient Abby, 6 , , 27 months, G tube, J tube, CVL for TPN/lipids, GH deficient ***Mitochondrial encephalomyopathy, (complex 1 and 4 OxPhos defect)*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 Chrissy, sometimes it's scant comfort finally to have an answer, and I wish we could get ALL the answers, but I know you'll grab this knowledge and run with it. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 1999 Report Share Posted August 14, 1999 Chrissy, sometimes it's scant comfort finally to have an answer, and I wish we could get ALL the answers, but I know you'll grab this knowledge and run with it. Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Thank you for the generous offer. What I want to do is first research it a bit and talk to a few of the kid's doctors. I'll keep your offer in mind though. Thanks once again and have a safe trip home. Anne ---------- > From: ChrissyGE@... > To: Mitoonelist > Subject: Re: Mannatech > Date: Saturday, August 14, 1999 9:53 AM > > From: ChrissyGE@... > > Anne I am able to get it for you Wholesale if you are interested-----------I > but it in bulk case and would be able to arrange it to be delivered to you at > my cost. I hope this helps. > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 ChrissyGE@... wrote: has been taking Mannatech Products from about a month and I > asked Dr Cohen what he thought about them. He said " I have heard of them > and yes I suggest continue them especially the Ambratose and Empact > which have been shown to LOWER LACTIC acid levels in clinical trials. " This is fascinating information, Chrissy. I am anxious to talk with Dr. Cohen about this. Excpecially since Caitlin just recently had an MRS which indicated chronic lactic acidosis in her brain. There were several spikes in different parts of her brain, and when Dr. Cohen told me the results he never mentioned anything about trying the manatech products. I guess I need to check that out and jog his memory a bit. Can you tell me what the Ambrotose and Empact are, and how much they cost? Thanks for the info, I'll keep you posted, Jeannine, mom to Caitlin, Genny and Dalton. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 > >This is fascinating information, Chrissy. I am anxious to talk with Dr. >Cohen about this. Excpecially since Caitlin just recently had an MRS >which indicated chronic lactic acidosis in her brain. There were >several spikes in different parts of her brain, and when Dr. Cohen told >me the results he never mentioned anything about trying the manatech >products. I guess I need to check that out and jog his memory a bit. > A couple of things about Mannatech - I researched this stuff (plus got the whole box of stuff from a company in Ireland on another " sure cure " several months ago and READ it - every single page!! Most of it is elusive papers on single ingredients -- nothing that even identified all of the ingredients - and that is my problem with Mannatech right now. We all know that we are sensitive to certain ingredients - some immediately and some from build up over time. Either way, we like to know what's in the things we take. Well, Mannatech's products have a couple of ingredients that are even unidentified as " patent pending " or " ingredients not yet identified " on their own web page!! Yes, there are ingredients that are very healthy and good for you - but I am too careful to take anything without knowing ALL the contents. As you all know, Steph's primary " problem " is lactic acid. Not much gets by me that makes any kind of difference, and we've looked at everything from bicarb to DCA. In our case, the lactic acid ais a chronic part of the state of the cell, and neither fasting nor eating seem to affect the levels which continue to be 3-5 times normal. If there was something that would help, without harming, I guarantee that I would have found it by now and tested it. I was approached in 1995 at the Indianapolis conference by the folks in Florida to enroll in the DCA trials that were in their infancy at the time. DCA *is* a treatment for lactic acid but it also can cause grave harm and destruction to the brain. It should only be used for people who are at risk of death, according to my doctor. Lactic acid *can* kill you - but you can also live with it and there are treatments that make living less likely. Be very careful in trying something that impacts the LA levels in your body - that alone would make me refuse the Mannatech, even if it were a true claim. It could actually be the way your body tells you it's doing the best it can do, and changing that could make things worse. Be very very careful, and talk to your doctors before using anything to any great degree!! >Can you tell me what the Ambrotose and Empact are, and how much they >cost? I would really be interested also if the full ingredients are listed. Please let us all know what these are because if they truly *do* impact lactic acid, we need to push for a study to determine all the possibilities! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 > >This is fascinating information, Chrissy. I am anxious to talk with Dr. >Cohen about this. Excpecially since Caitlin just recently had an MRS >which indicated chronic lactic acidosis in her brain. There were >several spikes in different parts of her brain, and when Dr. Cohen told >me the results he never mentioned anything about trying the manatech >products. I guess I need to check that out and jog his memory a bit. > A couple of things about Mannatech - I researched this stuff (plus got the whole box of stuff from a company in Ireland on another " sure cure " several months ago and READ it - every single page!! Most of it is elusive papers on single ingredients -- nothing that even identified all of the ingredients - and that is my problem with Mannatech right now. We all know that we are sensitive to certain ingredients - some immediately and some from build up over time. Either way, we like to know what's in the things we take. Well, Mannatech's products have a couple of ingredients that are even unidentified as " patent pending " or " ingredients not yet identified " on their own web page!! Yes, there are ingredients that are very healthy and good for you - but I am too careful to take anything without knowing ALL the contents. As you all know, Steph's primary " problem " is lactic acid. Not much gets by me that makes any kind of difference, and we've looked at everything from bicarb to DCA. In our case, the lactic acid ais a chronic part of the state of the cell, and neither fasting nor eating seem to affect the levels which continue to be 3-5 times normal. If there was something that would help, without harming, I guarantee that I would have found it by now and tested it. I was approached in 1995 at the Indianapolis conference by the folks in Florida to enroll in the DCA trials that were in their infancy at the time. DCA *is* a treatment for lactic acid but it also can cause grave harm and destruction to the brain. It should only be used for people who are at risk of death, according to my doctor. Lactic acid *can* kill you - but you can also live with it and there are treatments that make living less likely. Be very careful in trying something that impacts the LA levels in your body - that alone would make me refuse the Mannatech, even if it were a true claim. It could actually be the way your body tells you it's doing the best it can do, and changing that could make things worse. Be very very careful, and talk to your doctors before using anything to any great degree!! >Can you tell me what the Ambrotose and Empact are, and how much they >cost? I would really be interested also if the full ingredients are listed. Please let us all know what these are because if they truly *do* impact lactic acid, we need to push for a study to determine all the possibilities! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 > >This is fascinating information, Chrissy. I am anxious to talk with Dr. >Cohen about this. Excpecially since Caitlin just recently had an MRS >which indicated chronic lactic acidosis in her brain. There were >several spikes in different parts of her brain, and when Dr. Cohen told >me the results he never mentioned anything about trying the manatech >products. I guess I need to check that out and jog his memory a bit. > A couple of things about Mannatech - I researched this stuff (plus got the whole box of stuff from a company in Ireland on another " sure cure " several months ago and READ it - every single page!! Most of it is elusive papers on single ingredients -- nothing that even identified all of the ingredients - and that is my problem with Mannatech right now. We all know that we are sensitive to certain ingredients - some immediately and some from build up over time. Either way, we like to know what's in the things we take. Well, Mannatech's products have a couple of ingredients that are even unidentified as " patent pending " or " ingredients not yet identified " on their own web page!! Yes, there are ingredients that are very healthy and good for you - but I am too careful to take anything without knowing ALL the contents. As you all know, Steph's primary " problem " is lactic acid. Not much gets by me that makes any kind of difference, and we've looked at everything from bicarb to DCA. In our case, the lactic acid ais a chronic part of the state of the cell, and neither fasting nor eating seem to affect the levels which continue to be 3-5 times normal. If there was something that would help, without harming, I guarantee that I would have found it by now and tested it. I was approached in 1995 at the Indianapolis conference by the folks in Florida to enroll in the DCA trials that were in their infancy at the time. DCA *is* a treatment for lactic acid but it also can cause grave harm and destruction to the brain. It should only be used for people who are at risk of death, according to my doctor. Lactic acid *can* kill you - but you can also live with it and there are treatments that make living less likely. Be very careful in trying something that impacts the LA levels in your body - that alone would make me refuse the Mannatech, even if it were a true claim. It could actually be the way your body tells you it's doing the best it can do, and changing that could make things worse. Be very very careful, and talk to your doctors before using anything to any great degree!! >Can you tell me what the Ambrotose and Empact are, and how much they >cost? I would really be interested also if the full ingredients are listed. Please let us all know what these are because if they truly *do* impact lactic acid, we need to push for a study to determine all the possibilities! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Jeannine, The ambratose is patented supplement that is said to increase cell to cell communication helping each cell do it's job more efficently and effectively. The Empact is sold as sport drink and it has literature to document the reduction of Lactic Acidosis----athletes have increased lactic acid from work outs. The direction tell you to take the empact 15 minutes prior to excercise to help reduce L.actic Acid buildup. Dr Cohen said he is aware of the products and recommended that we keep on them. I will check the cost for you with DH he does the ordering for the family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Jeannine, The ambratose is patented supplement that is said to increase cell to cell communication helping each cell do it's job more efficently and effectively. The Empact is sold as sport drink and it has literature to document the reduction of Lactic Acidosis----athletes have increased lactic acid from work outs. The direction tell you to take the empact 15 minutes prior to excercise to help reduce L.actic Acid buildup. Dr Cohen said he is aware of the products and recommended that we keep on them. I will check the cost for you with DH he does the ordering for the family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Jeannine, The ambratose is patented supplement that is said to increase cell to cell communication helping each cell do it's job more efficently and effectively. The Empact is sold as sport drink and it has literature to document the reduction of Lactic Acidosis----athletes have increased lactic acid from work outs. The direction tell you to take the empact 15 minutes prior to excercise to help reduce L.actic Acid buildup. Dr Cohen said he is aware of the products and recommended that we keep on them. I will check the cost for you with DH he does the ordering for the family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Kathy, Thanks for clarifying this for all of us. Dr Cohen did tel us to continue the Mannatech products and all the other supplements is taking. He did not go into furhter detail about clinical trials or anything else. I am sure that when he told us " he is aware of the product and to continue on them until he can make further adjustments pending more info from the muscle biopsy " he was speaking to us as individuals with a particular child. If there was one thing he repeatedly told me Wednesday at our appt it was no 2 cases of Mito are the same ---even if the complex defect is the same-each case is different and should be treated this way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 1999 Report Share Posted August 15, 1999 Kathy, Thanks for clarifying this for all of us. Dr Cohen did tel us to continue the Mannatech products and all the other supplements is taking. He did not go into furhter detail about clinical trials or anything else. I am sure that when he told us " he is aware of the product and to continue on them until he can make further adjustments pending more info from the muscle biopsy " he was speaking to us as individuals with a particular child. If there was one thing he repeatedly told me Wednesday at our appt it was no 2 cases of Mito are the same ---even if the complex defect is the same-each case is different and should be treated this way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > I would really be interested also if the full ingredients are listed. > Please let us > all know what these are because if they truly *do* impact lactic acid, we > need > to push for a study to determine all the possibilities! Kathy, I contacted Bruce Cohen, this weekend and asked for some more information regarding the relationship between Mannatech and Lactic Acid. He gave me permission to cut and paste his response to the list. ================================================================================\ ============ On several occasions I have had the parents of a patient tell me of improvement after starting Mannatech products. Some began CoQ10 and carnitine at the same time as they did the Mannatech product. Others were just on Mannatech products (I do not recall which specific compound to be honest). It is my practice not to discourage any product that seems to be helping a person with any illness. However, to the best of my knowledge, no chemical, vitamin or drug lowers lactic acid levels in the majority of persons with mitochondrial diseases. In fact, DCA, which has the best track record for doing such, is still under study. Furthermore, lowering lactic acid levels does not necessarily correlate with improvement. In fact, following lactic acid levels in most (but not all) patients is not warranted. Finally, many of my sickest patients have normal serum lactic acid levels. In summary, if a parent tells me their child is improved on a supplement (medication or vitamin or herb), by whatever measure that parent chooses, my practice is to recommend continuing that supplement. Most physicians in the mitochondrial community would be happy to work with any corporate sponsor that would support a double blind crossover control trial for their product. The word " support " means the company would supply the product, the placebo and pay for doing the study. " Double blind " means that neither the doctor or patient knows if the patient is receiving placebo or the real stuff, and " crossover " means that one half the patients entering the study receive placebo first, for probably 6 months, followed by the real stuff for six months and the other half of the patients receive the real stuff first, followed by placebo. You decide before the study starts what your outcome measures would be (frequency of hospitalizations, number of viral illnesses, speech output, pain, lactic acid or other biochemical test, etc.) The problem with doing the study are twofold: 1) Cost: Such a trial would probably cost the company $5000 per patient, and you would probably need 40-60 patients 2) Proof of efficacy: Most compounds will not improve function in the majority of patients. Even CoQ10 does not result in improvement in most patients. In some patients, it is very helpful. Remember that with mitochondrial diseases, lack of progression MAY be the key to success in some, if not all, patients. Therefore, unless a company KNOWS it has a 'winner' with a product that can be patented, they can not afford to do the study. I hope this clarifies my thoughts. Bruce H. Cohen, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > I would really be interested also if the full ingredients are listed. > Please let us > all know what these are because if they truly *do* impact lactic acid, we > need > to push for a study to determine all the possibilities! Kathy, I contacted Bruce Cohen, this weekend and asked for some more information regarding the relationship between Mannatech and Lactic Acid. He gave me permission to cut and paste his response to the list. ================================================================================\ ============ On several occasions I have had the parents of a patient tell me of improvement after starting Mannatech products. Some began CoQ10 and carnitine at the same time as they did the Mannatech product. Others were just on Mannatech products (I do not recall which specific compound to be honest). It is my practice not to discourage any product that seems to be helping a person with any illness. However, to the best of my knowledge, no chemical, vitamin or drug lowers lactic acid levels in the majority of persons with mitochondrial diseases. In fact, DCA, which has the best track record for doing such, is still under study. Furthermore, lowering lactic acid levels does not necessarily correlate with improvement. In fact, following lactic acid levels in most (but not all) patients is not warranted. Finally, many of my sickest patients have normal serum lactic acid levels. In summary, if a parent tells me their child is improved on a supplement (medication or vitamin or herb), by whatever measure that parent chooses, my practice is to recommend continuing that supplement. Most physicians in the mitochondrial community would be happy to work with any corporate sponsor that would support a double blind crossover control trial for their product. The word " support " means the company would supply the product, the placebo and pay for doing the study. " Double blind " means that neither the doctor or patient knows if the patient is receiving placebo or the real stuff, and " crossover " means that one half the patients entering the study receive placebo first, for probably 6 months, followed by the real stuff for six months and the other half of the patients receive the real stuff first, followed by placebo. You decide before the study starts what your outcome measures would be (frequency of hospitalizations, number of viral illnesses, speech output, pain, lactic acid or other biochemical test, etc.) The problem with doing the study are twofold: 1) Cost: Such a trial would probably cost the company $5000 per patient, and you would probably need 40-60 patients 2) Proof of efficacy: Most compounds will not improve function in the majority of patients. Even CoQ10 does not result in improvement in most patients. In some patients, it is very helpful. Remember that with mitochondrial diseases, lack of progression MAY be the key to success in some, if not all, patients. Therefore, unless a company KNOWS it has a 'winner' with a product that can be patented, they can not afford to do the study. I hope this clarifies my thoughts. Bruce H. Cohen, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 > I would really be interested also if the full ingredients are listed. > Please let us > all know what these are because if they truly *do* impact lactic acid, we > need > to push for a study to determine all the possibilities! Kathy, I contacted Bruce Cohen, this weekend and asked for some more information regarding the relationship between Mannatech and Lactic Acid. He gave me permission to cut and paste his response to the list. ================================================================================\ ============ On several occasions I have had the parents of a patient tell me of improvement after starting Mannatech products. Some began CoQ10 and carnitine at the same time as they did the Mannatech product. Others were just on Mannatech products (I do not recall which specific compound to be honest). It is my practice not to discourage any product that seems to be helping a person with any illness. However, to the best of my knowledge, no chemical, vitamin or drug lowers lactic acid levels in the majority of persons with mitochondrial diseases. In fact, DCA, which has the best track record for doing such, is still under study. Furthermore, lowering lactic acid levels does not necessarily correlate with improvement. In fact, following lactic acid levels in most (but not all) patients is not warranted. Finally, many of my sickest patients have normal serum lactic acid levels. In summary, if a parent tells me their child is improved on a supplement (medication or vitamin or herb), by whatever measure that parent chooses, my practice is to recommend continuing that supplement. Most physicians in the mitochondrial community would be happy to work with any corporate sponsor that would support a double blind crossover control trial for their product. The word " support " means the company would supply the product, the placebo and pay for doing the study. " Double blind " means that neither the doctor or patient knows if the patient is receiving placebo or the real stuff, and " crossover " means that one half the patients entering the study receive placebo first, for probably 6 months, followed by the real stuff for six months and the other half of the patients receive the real stuff first, followed by placebo. You decide before the study starts what your outcome measures would be (frequency of hospitalizations, number of viral illnesses, speech output, pain, lactic acid or other biochemical test, etc.) The problem with doing the study are twofold: 1) Cost: Such a trial would probably cost the company $5000 per patient, and you would probably need 40-60 patients 2) Proof of efficacy: Most compounds will not improve function in the majority of patients. Even CoQ10 does not result in improvement in most patients. In some patients, it is very helpful. Remember that with mitochondrial diseases, lack of progression MAY be the key to success in some, if not all, patients. Therefore, unless a company KNOWS it has a 'winner' with a product that can be patented, they can not afford to do the study. I hope this clarifies my thoughts. Bruce H. Cohen, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 1999 Report Share Posted August 16, 1999 >How do we figure that out? >Any biochemists among us? > S. > Good question. The other single point I would add (since Dr. Cohen mentioned this also through Jeannine's post) is that Steph's doctors don't monitor her LA at all. They feel it is a verified problem, but the exact numbers at any given time are irrelevant - as in, it's broken, and regardless what the numbers are it probably still isn't normal. It's not something that we even worry or care about other than as something that is specific to whatever is wrong with her - like elevated proteins in the urine would be a specific finding. Other than the elevated lactic acid and pyruvate she has never had anything out of the ordinary - except overall development of course - and that continues to progress at a snail's pace. Everything about her is about a two year old level -- and likely will be for the next 10 years or so!!!!!!!!! (Think terrible two to the tenth power!) Anyhow, I just spent some time and money on Amazon's auctions looking for some pricey medical books (Dr. Singh's book was not available!) and bought Chemistry, Organic Chemistry, World of the Cell, Heredity and Disease and another I can't remember for about $10-$20 each instead of $90-200! A couple are pretty old, but the periodic charts haven't gotten simpler in recent years so it's a good place to start understanding. Kathy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.