Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 I don't know about the profile, but all the studies show the carnitines are pivotal in feeding the mitochondria and play a prominent role in all the cogitive-enhancing and mitochondrial formulas hitting the market. I think most of our kids benefit.  I don't think I have ever done a Metametrix OAT in our kids that didn't show a need for L-carnitine; and acetyl-L-carnitine is a more effective version. I have found it to be stimulating in some kids, so usually give it in the mornings or in the afternoon to prevent causing sleep issues. Dr. JM Subject: acylcarnitine To: csb-autism-rx Date: Thursday, July 15, 2010, 11:00 PM  Dr. JM: I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? Thanks, Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx > Date: Thursday, July 15, 2010, 11:00 PM > > > Â > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 , May I e-mail you off list? My e-mail is parker29@... and I’m interested in your son’s response to carnitine. Our geneticist at Arkansas Children’s Hospital said he is interested in any reports of other children who have negative side effects from Carnitor or carnitine and our daughter does – I just can’t anyone to believe me. He is also schedlui9ng the mito test. We are going to do a DNA blood profile first then if we must – a muscle biopsy. Thank you so much, Shari From: csb-autism-rx [mailto:csb-autism-rx ] On Behalf Of starsrocket Sent: Saturday, July 17, 2010 7:50 AM To: csb-autism-rx Subject: Re: acylcarnitine Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> > Date: Thursday, July 15, 2010, 11:00 PM > > > Â > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Hi , Can I email you off list as well? Similar issues. Thank you, Subject: RE: Re: acylcarnitine To: csb-autism-rx Date: Saturday, July 17, 2010, 9:24 AM  , May I e-mail you off list? My e-mail is parker29@... and I’m interested in your son’s response to carnitine. Our geneticist at Arkansas Children’s Hospital said he is interested in any reports of other children who have negative side effects from Carnitor or carnitine and our daughter does – I just can’t anyone to believe me. He is also schedlui9ng the mito test. We are going to do a DNA blood profile first then if we must – a muscle biopsy. Thank you so much, Shari From: csb-autism-rx [mailto:csb-autism-rx ] On Behalf Of starsrocket Sent: Saturday, July 17, 2010 7:50 AM To: csb-autism-rx Subject: Re: acylcarnitine Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> > Date: Thursday, July 15, 2010, 11:00 PM > > > Â > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Sorry I meant Shari! Subject: RE: Re: acylcarnitine To: csb-autism-rx Date: Saturday, July 17, 2010, 9:24 AM  , May I e-mail you off list? My e-mail is parker29@... and I’m interested in your son’s response to carnitine. Our geneticist at Arkansas Children’s Hospital said he is interested in any reports of other children who have negative side effects from Carnitor or carnitine and our daughter does – I just can’t anyone to believe me. He is also schedlui9ng the mito test. We are going to do a DNA blood profile first then if we must – a muscle biopsy. Thank you so much, Shari From: csb-autism-rx [mailto:csb-autism-rx ] On Behalf Of starsrocket Sent: Saturday, July 17, 2010 7:50 AM To: csb-autism-rx Subject: Re: acylcarnitine Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> > Date: Thursday, July 15, 2010, 11:00 PM > > > Â > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 Absolutely. Shari From: csb-autism-rx [mailto:csb-autism-rx ] On Behalf Of FM Cammarata Sent: Saturday, July 17, 2010 11:32 AM To: csb-autism-rx Subject: RE: Re: acylcarnitine Sorry I meant Shari! From: Dwayne & Shari <parker29@... <mailto:parker29%40suddenlink.net> > Subject: RE: Re: acylcarnitine To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> Date: Saturday, July 17, 2010, 9:24 AM , May I e-mail you off list? My e-mail is parker29@... <mailto:parker29%40suddenlink.net> and I’m interested in your son’s response to carnitine. Our geneticist at Arkansas Children’s Hospital said he is interested in any reports of other children who have negative side effects from Carnitor or carnitine and our daughter does – I just can’t anyone to believe me. He is also schedlui9ng the mito test. We are going to do a DNA blood profile first then if we must – a muscle biopsy. Thank you so much, Shari From: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> [mailto:csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> ] On Behalf Of starsrocket Sent: Saturday, July 17, 2010 7:50 AM To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> Subject: Re: acylcarnitine Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx <mailto:csb-autism-rx%40yahoogroups.com> <mailto:csb-autism-rx%40yahoogroups.com> > Date: Thursday, July 15, 2010, 11:00 PM > > > Â > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2010 Report Share Posted July 17, 2010 I'm afraid I do not know enough about carnitine chemistry to answer your questions, except that I have very rarely had a child react to regular L-carnitine but have had quite a few react to acetyl-l -carnitine and the propionyl forms - maybe they do work too fast in terms of removing toxins - I don't know about that. Nor do I have any idea why cadmium levels would change from one test to another without any treatment. I have had some great reductions in cadmium from the use of Authia (commercial TTFD). Dr. JM Subject: Re: acylcarnitine To: csb-autism-rx Date: Saturday, July 17, 2010, 12:50 AM  Dr. McCandless, My son had some abnomalities in his acetylcarnitine panel and was later diagnosed with mito dysfunction via muscle biopsy. We tried both Levocarnitine and Acetyl-l-carnitine supplements, but it caused my son to develop headaches, stomache aches and severe double vision. The neuro felt that in some, the carnitine may enable toxins to leave the cells too fast, causing the side effects. He said while rare, he does see some people have reactions like this. Do you have any insight in this area? We recently did heavy metal testing and on the prechallenge he was very high for cadmium, but the post challenge all the metals came back in the normal range? On another note, we did also find out that steroids for asthma( oral and inhaled)cause his creatine kinase levels to rise to dangerous levels. I can't help but feel that all this is related. The neuro is also suggesting a trial of the ketogenic diet? > > > > Subject: acylcarnitine > To: csb-autism-rx > Date: Thursday, July 15, 2010, 11:00 PM > > >  > > > > Dr. JM: > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > Thanks, > Marie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2010 Report Share Posted July 18, 2010 Thank you, Dr. McCandless. My son seems to be an atypical presenter which is why it has taken us so long to get him diagnosed with mito dysfunction. Can you elaborate on the propional forms of acetyl-l-carnitine? What other forms are there? ANy links are appreciated. We have a followup scheduled with our DAN (Dr. Jepson), so hopefully he will have some answers on the cadmium testing. > > > > > > From: FM Cammarata <fmcamm@> > > Subject: acylcarnitine > > To: csb-autism-rx > > Date: Thursday, July 15, 2010, 11:00 PM > > > > > >  > > > > > > > > Dr. JM: > > > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > > > Thanks, > > Marie > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2010 Report Share Posted July 19, 2010 , See this link below. VRP covers almost all forms of carnitine. http://www.vrp.com/ProductsSearch.aspx?k=carnitine HTH, Ragha > > > > > > > > > From: FM Cammarata <fmcamm@> > > > Subject: acylcarnitine > > > To: csb-autism-rx > > > Date: Thursday, July 15, 2010, 11:00 PM > > > > > > > > >  > > > > > > > > > > > > Dr. JM: > > > > > > I was wondering if you know anything about testing for the acylcarnitine profile? Is there anything to know that is significant with our children? > > > > > > Thanks, > > > Marie > > > > > > Quote Link to comment Share on other sites More sharing options...
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