Guest guest Posted August 9, 2004 Report Share Posted August 9, 2004 Am back.....am pooped..... Been sleeping on and off for most of today. By far the best part of the conference was meeting/seeing everyone I've been chatting with for years on the internet. The hotel accommodations were awesome (although that was not everyone's experience). I also appreciated seeing where the monies were going at the grant presentation at the Friday night banquet, and being able to meet those researchers and actually talk with them giving them a mito persons perspective. Things I learned: Raj has " just " developed a liposomal Co-Q-10 for G/J tube/TPN. Not being marketed yet, but expect it out soon. Tishcon should have a NDC # sometime this fall which will make it easier to get insurance's to cover their products. Dr. Cohen reported (in his symptom management session) that they now " agree " that creatine can be used safely on a long term basis with benefits in mito disorders and there is research to back this up. There will be a new ICD-9 code specific to mitochondrial diseases when ICD-10 comes out this fall (although 450 mito specific codes where denied by the world health organization .... UMDF is supposed to get us information on why those codes where denied so we can start a letter/contact campaign with local legislatures). The meeting/banquet/meals where NOT wheelchair accessible! The tables were set too close together, and with too many chairs at them, and there were no spaces for wheelchair parking except by the doors. For those of us who were not mobile it was a BIG issue and I plan on letting the UMDF know when I send in my survey. AND.....there was one meeting room (which I spent all of Friday in and a good part of Saturday) where the AC was broken and it was FREEZING! Talk about miserable, and I had a sweatshirt with me (just in case) and I was still freezing. Thanks to Laurie, , Christie and Pam for all their work at the MO table. I don't know how you all manage that table and still get to some of the conference offerings. You guys are amazing! Kristie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Kristie, Tks so much for your post. I have some additional questions about the creatine discussions at the conference. 1. Did anyone mention which brands of creatine monohydrate are considered reliable? There is a tremendous difference in quality and purity among creatine products. 2. Did anyone mention the second-generation creatine products such as creatine pyruvate and creatine maleate? They claim superior bioavailabity over creatine monohydrate and also claim to eliminate the side effect of fluid retention. I am currently using a NutraBiotics product called ATP Evolution which is creatine monohydrate chelated with magnesium. It also contains nucleotide precursers that aid in formation of ATP. Chelating the creatine with magnesium protects the creatine from stomach acid and greatly enhances chances of actually getting to the muscle via the gut. Stomach acid tends to break creatine down into creatinine which is then just excreted through the kidneys. Was this problem addressed at all? I know Dr. Tarnopolsky has been the pioneer in using creatine in neuromuscular disorders. He has felt for some time that it is safe and recommends it for patients. I am glad to know that other experts now agree. Tks again. Barbara > Am back.....am pooped..... Been sleeping on and off for most of today. > > By far the best part of the conference was meeting/seeing everyone I've been chatting with for years on the internet. The hotel accommodations were awesome (although that was not everyone's experience). I also appreciated seeing where the monies were going at the grant presentation at the Friday night banquet, and being able to meet those researchers and actually talk with them giving them a mito persons perspective. > > Things I learned: Raj has " just " developed a liposomal Co-Q-10 for G/J tube/TPN. Not being marketed yet, but expect it out soon. Tishcon should have a NDC # sometime this fall which will make it easier to get insurance's to cover their products. Dr. Cohen reported (in his symptom management session) that they now " agree " that creatine can be used safely on a long term basis with benefits in mito disorders and there is research to back this up. There will be a new ICD-9 code specific to mitochondrial diseases when ICD-10 comes out this fall (although 450 mito specific codes where denied by the world health organization ... UMDF is supposed to get us information on why those codes where denied so we can start a letter/contact campaign with local legislatures). The meeting/banquet/meals where NOT wheelchair accessible! The tables were set too close together, and with too many chairs at them, and there were no spaces for wheelchair parking except by the doors. For those of us who were not mobile it was a BIG issue and I plan on letting the UMDF know when I send in my survey. AND.....there was one meeting room (which I spent all of Friday in and a good part of Saturday) where the AC was broken and it was FREEZING! Talk about miserable, and I had a sweatshirt with me (just in case) and I was still freezing. > > Thanks to Laurie, , Christie and Pam for all their work at the MO table. I don't know how you all manage that table and still get to some of the conference offerings. You guys are amazing! > > Kristie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi, Barbara Those are very good and thoughtful questions about creatine. I do not have any information about different forms of creatine, but I will look for info when I get the oppportunity. I have just been taking creatine monohydrate, and do feel that it improves my strength. I have been on the fence about taking it. Now I guess it is worth while to take it seriously. So, information is important. Thanks for raising the questions. Regards, Sunny > Kristie, Tks so much for your post. I have some additional questions > about the creatine discussions at the conference. > > 1. Did anyone mention which brands of creatine monohydrate are > considered reliable? There is a tremendous difference in quality and > purity among creatine products. > > 2. Did anyone mention the second-generation creatine products such > as creatine pyruvate and creatine maleate? They claim superior > bioavailabity over creatine monohydrate and also claim to eliminate > the side effect of fluid retention. > > I am currently using a NutraBiotics product called ATP Evolution > which is creatine monohydrate chelated with magnesium. It also > contains nucleotide precursers that aid in formation of ATP. > Chelating the creatine with magnesium protects the creatine from > stomach acid and greatly enhances chances of actually getting to the > muscle via the gut. Stomach acid tends to break creatine down into > creatinine which is then just excreted through the kidneys. Was this > problem addressed at all? > > I know Dr. Tarnopolsky has been the pioneer in using creatine in > neuromuscular disorders. He has felt for some time that it is safe > and recommends it for patients. I am glad to know that other experts > now agree. > > Tks again. > Barbara > > > > > > > > > Am back.....am pooped..... Been sleeping on and off for most of > today. > > > > By far the best part of the conference was meeting/seeing everyone > I've been chatting with for years on the internet. The hotel > accommodations were awesome (although that was not everyone's > experience). I also appreciated seeing where the monies were going > at the grant presentation at the Friday night banquet, and being > able to meet those researchers and actually talk with them giving > them a mito persons perspective. > > > > Things I learned: Raj has " just " developed a liposomal Co-Q-10 for > G/J tube/TPN. Not being marketed yet, but expect it out soon. > Tishcon should have a NDC # sometime this fall which will make it > easier to get insurance's to cover their products. Dr. Cohen > reported (in his symptom management session) that they now " agree " > that creatine can be used safely on a long term basis with benefits > in mito disorders and there is research to back this up. There will > be a new ICD-9 code specific to mitochondrial diseases when ICD-10 > comes out this fall (although 450 mito specific codes where denied > by the world health organization ... UMDF is supposed to get us > information on why those codes where denied so we can start a > letter/contact campaign with local legislatures). The > meeting/banquet/meals where NOT wheelchair accessible! The tables > were set too close together, and with too many chairs at them, and > there were no spaces for wheelchair parking except by the doors. > For those of us who were not mobile it was a BIG issue and I plan on > letting the UMDF know when I send in my survey. AND.....there was > one meeting room (which I spent all of Friday in and a good part of > Saturday) where the AC was broken and it was FREEZING! Talk about > miserable, and I had a sweatshirt with me (just in case) and I was > still freezing. > > > > Thanks to Laurie, , Christie and Pam for all their work at > the MO table. I don't know how you all manage that table and still > get to some of the conference offerings. You guys are amazing! > > > > Kristie > > > > > > Quote Link to comment Share on other sites More sharing options...
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