Guest guest Posted January 7, 2004 Report Share Posted January 7, 2004 Are you at least taking carnitine? whoewe2002 wrote: >Hi, >I'm wondering if anybody else here is having problems with ketosis. >Because of my carnitine deficiency (I'm not taking supplements) I am >experiencing ketosis and was told my muscles are breaking down. > >I'm wondering how worried I should be about this (panicked, or just >concerned). I will see a doc at Mayo in a couple of weeks - and my >other doctor doesn't want me to start any supplements just in case I >need to have some tests run there. > >I know it can be a dangerous thing depending on how deficient I am >(the numbers seemed high to me). > >Maggie > > >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 January 7, 2004 Report Share Posted January 7, 2004 I would contact the doctor that you are suppose to see in 2 weeks, tell him about the carnitine deficiency AND ketosis and how long it has been going on. Tell him you are REALLY concerned about waiting to get on the carnitor until you see him in 2 weeks. You sure don't want to continue to do muscle damage for 2 more weeks. Let us know how it goes. whoewe2002 wrote: No, , I'm not. I guess that's why I'm so worried. I was told not to start it (several times) as each doctor who sends me to someone else thinks I will get my biopsy soon and THEN go on it. I've been passed from one doctor to the next (so many times) and each one thinks it would be a good idea not to take anything so that it doesn't mess up the labwork that the next doctor will take. Each appointment is about 4-6 weeks apart... just long enough for me to hesitate about starting something OTC before my appt. (very frustrating). The deficiency was found in August and I'm still WAITING! Maggie Hi, I'm wondering if anybody else here is having problems with ketosis. Because of my carnitine deficiency (I'm not taking supplements) I am experiencing ketosis and was told my muscles are breaking down. I'm wondering how worried I should be about this (panicked, or just concerned). I will see a doc at Mayo in a couple of weeks - and my other doctor doesn't want me to start any supplements just in case I need to have some tests run there. I know it can be a dangerous thing depending on how deficient I am (the numbers seemed high to me). Maggie 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 January 7, 2004 Report Share Posted January 7, 2004 No, , I'm not. I guess that's why I'm so worried. I was told not to start it (several times) as each doctor who sends me to someone else thinks I will get my biopsy soon and THEN go on it. I've been passed from one doctor to the next (so many times) and each one thinks it would be a good idea not to take anything so that it doesn't mess up the labwork that the next doctor will take. Each appointment is about 4-6 weeks apart... just long enough for me to hesitate about starting something OTC before my appt. (very frustrating). The deficiency was found in August and I'm still WAITING! Maggie > > >Hi, > >I'm wondering if anybody else here is having problems with ketosis. > >Because of my carnitine deficiency (I'm not taking supplements) I am > >experiencing ketosis and was told my muscles are breaking down. > > > >I'm wondering how worried I should be about this (panicked, or just > >concerned). I will see a doc at Mayo in a couple of weeks - and my > >other doctor doesn't want me to start any supplements just in case I > >need to have some tests run there. > > > >I know it can be a dangerous thing depending on how deficient I am > >(the numbers seemed high to me). > > > >Maggie > > > > > >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 January 8, 2004 Report Share Posted January 8, 2004 Being in ketosis (like when on Atkins' Diet strictly) seems to help my symptoms and I know some parents use that to help their kids. I would buy the OTC ketone urine strips and check how much is spilling, and not worry unless you see a high level. Take care, RH > Hi, > I'm wondering if anybody else here is having problems with ketosis. > Because of my carnitine deficiency (I'm not taking supplements) I am > experiencing ketosis and was told my muscles are breaking down. > > I'm wondering how worried I should be about this (panicked, or just > concerned). I will see a doc at Mayo in a couple of weeks - and my > other doctor doesn't want me to start any supplements just in case I > need to have some tests run there. > > I know it can be a dangerous thing depending on how deficient I am > (the numbers seemed high to me). > > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 It's my understanding that part of the problem with carnitine deficiency is that we cannot adequately produce ketones. Even with carnitine supplementation, I am unable to produce ketones and become hypoglycemic and hypoketotic when stressed, ill or fasting. This is a potentially dangerous situation that must be addressed immediately. How do you know you're experiencing ketosis? Muscle breakdown is another fact of life with carnitine deficiency, but generally isn't dangerous, although it hurts and can be quite debilitating. Theresa (Primary Carnitine Deficiency) > Hi, > I'm wondering if anybody else here is having problems with ketosis. > Because of my carnitine deficiency (I'm not taking supplements) I am > experiencing ketosis and was told my muscles are breaking down. > > I'm wondering how worried I should be about this (panicked, or just > concerned). I will see a doc at Mayo in a couple of weeks - and my > other doctor doesn't want me to start any supplements just in case I > need to have some tests run there. > > I know it can be a dangerous thing depending on how deficient I am > (the numbers seemed high to me). > > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 I was familiar with the Atkins diet and purposely causing your body to go into ketosis -- but I'm wondering if you are unable to burn fat properly, if this is dangerous. (seems like it might be) Maggie > > Hi, > > I'm wondering if anybody else here is having problems with > ketosis. > > Because of my carnitine deficiency (I'm not taking supplements) I > am > > experiencing ketosis and was told my muscles are breaking down. > > > > I'm wondering how worried I should be about this (panicked, or just > > concerned). I will see a doc at Mayo in a couple of weeks - and my > > other doctor doesn't want me to start any supplements just in case > I > > need to have some tests run there. > > > > I know it can be a dangerous thing depending on how deficient I am > > (the numbers seemed high to me). > > > > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 One of the difficulties of the mitochondrial and related metabolic disorders is that they really are different, so we all need to be careful to address our own individual situation. My labs show a slight CoQ10 deficiency and no carnitine or acyl carnitine deficiency, and complete loss of Complex 1 activity on that test. So the effect of ketosis on me could be totally different (and actually beneficial) to me. I like to think of it similarly to thyroid conditions, where people that have both hypo and hyperthyroid have things in common, but obviously wouldn't want to treat themselves the same way. Imagine how many groups we'd have to have if we all had a group for our specific form of mito! Take care, RH > > > Hi, > > > I'm wondering if anybody else here is having problems with > > ketosis. > > > Because of my carnitine deficiency (I'm not taking supplements) > I > > am > > > experiencing ketosis and was told my muscles are breaking down. > > > > > > I'm wondering how worried I should be about this (panicked, or > just > > > concerned). I will see a doc at Mayo in a couple of weeks - and > my > > > other doctor doesn't want me to start any supplements just in > case > > I > > > need to have some tests run there. > > > > > > I know it can be a dangerous thing depending on how deficient I > am > > > (the numbers seemed high to me). > > > > > > Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Maggie I first had a diagnosis of CPT deficiency. I was put on MCT oil and actually got worse. I now need to eat a well balanced diet and include lots of veggies as well as the protein, fat and carbs. Others are very different. I did try the Atkins diet and had to stop after 3 days as I became very ill. laurie > > Reply-To: > Date: Fri, 09 Jan 2004 16:55:29 -0000 > To: > Subject: Re: Ketosis question > > > I was familiar with the Atkins diet and purposely causing your body > to go into ketosis -- but I'm wondering if you are unable to burn > fat properly, if this is dangerous. (seems like it might be) > > Maggie > > >>> Hi, >>> I'm wondering if anybody else here is having problems with >> ketosis. >>> Because of my carnitine deficiency (I'm not taking supplements) > I >> am >>> experiencing ketosis and was told my muscles are breaking down. >>> >>> I'm wondering how worried I should be about this (panicked, or > just >>> concerned). I will see a doc at Mayo in a couple of weeks - and > my >>> other doctor doesn't want me to start any supplements just in > case >> I >>> need to have some tests run there. >>> >>> I know it can be a dangerous thing depending on how deficient I > am >>> (the numbers seemed high to me). >>> >>> Maggie > > > > 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 January 9, 2004 Report Share Posted January 9, 2004 Laurie, I hope I end up being one of those that can eat protein, fat AND carbs. Thanks for the info. Its interesting (and confusing when trying to figure out what's best). I haven't related any diet changes to the way I feel so far. Maggie > Maggie > > I first had a diagnosis of CPT deficiency. I was put on MCT oil and actually > got worse. I now need to eat a well balanced diet and include lots of > veggies as well as the protein, fat and carbs. Others are very different. I > did try the Atkins diet and had to stop after 3 days as I became very ill. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2004 Report Share Posted January 9, 2004 Maggie Dr. Cohen suggested trying the high fat diet, because of the complex I deficiency as fats enter at II, but he did warn us that just because it made sense, it didn't been it would work. It has been trial and error. I also found that when I am hungry (not usual anymore), I need to ask myself, do I need to eat or rest. I would not be so overweight had I figured this out years ago, but of course I thought I was " normal " at that time. I hope you figure out what foods make you feel the best. laurie > > Reply-To: > Date: Fri, 09 Jan 2004 23:18:07 -0000 > To: > Subject: Re: Ketosis question > > > Laurie, > I hope I end up being one of those that can eat protein, fat AND > carbs. > Thanks for the info. Its interesting (and confusing when trying to > figure out what's best). I haven't related any diet changes to the > way I feel so far. > > Maggie > > >> Maggie >> >> I first had a diagnosis of CPT deficiency. I was put on MCT oil > and actually >> got worse. I now need to eat a well balanced diet and include lots > of >> veggies as well as the protein, fat and carbs. Others are very > different. I >> did try the Atkins diet and had to stop after 3 days as I became > very ill. >> >> laurie > > > > > > 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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