Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 Hi Bea, I have the same question, so I'm ready to read others' responses, too. For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for Gordon & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one hand, I found lots of very plausible ideas (e.g., order genetic tests to figure out how best to treat your child; some kids are genetically unable to handle sulpher-based chelation; treat gradually, adding supplements one at a time to better gauge impact; the presence of viruses/bacteria may inhibit the success of ordinary chelation protocols). On the other hand, the variety and sheer number of supplements given, depending on the patient's condition, borders on parody. Here's the number of supplements, from stage 1 of the protocol (i.e., before chelation even begins), associated with each kind of potential problem: 1. neurological inflammation: 14 supplements 2. liver support: 23 supplements (plus creams) 3. kidney support: 5 supplements 4. to protect against excess calcium: 3 supplements 5. to increast calcium: 4 supplements 6. to balance glutamate and GABA: 18 supplements 7. pancreatic support: 8 supplements 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs (to be rotated) 9. additional microbial support: 10 supplements 10. chelate aluminum: 3 supplements 11. decrease yeast: 7 probiotics (one per each day of week) 12. more yeast support: 12 supplements 13. balance parasites: 1 supplement 14. reduce stims: 4 supplements 15. support membrane fluidity: 4 supplements 16. support immune system/spleen: 11 supplements 17. aid in helping inflammation around nerves: 17 supplements 18. aid KREBs cycle: 18 supplements 19. balance copper/zinc: 8 supplements 20. support gut (again with the gut!): 10 supplements 21. aid constipation: 7 supplements. The treatment is gradual, so supplements can be introduced just one every few days... seems like it would take years before one even got one's child healthy enough to start step 2, let alone step 3! I know not all patients need to take all these -- some supplements in a category will be tolerated, some won't. And not all categories are needed (perhaps your child doesn't have stims, for example). But the cost, time, and inconvenience are mind-boggling. My kids will barely tolerate one dropper of cod-liver oil containing supernuthera, lithium, and melatonin. To figure all this out, you need to fork over $750-1250 (or more) to get the genetics analyzed, which can take at least six months. Plus the recommended diet is not just casein-free, gluten-free, it's virtually everything-free. There is a list in the appendix about what foods contain glumates and other no-no's; very few foods are safe. Bagged salad mix is on the list! What's left to eat, you may ask? I guess organic fruit and veg and meat -- oh no, protein is bad. Worse, you cannot get in to see this doctor; no one else has her exact methods or special, propriatary RNA formula. Who's going to monitor your child? There's a website (autismanswer.com) that left me with more questions than answers. Most of the " chat " lists are locked, info only, and virtually all the posted messages are worshipful endorsements of Dr. Amy. Everyone's signature lists all their genetic markers, weirdly enough. It smells like a cult to me. My hats off to any of you using this protocal with good results. I don't think we could do it. Go ahead somebody and argue with me if you disagree; I'd love to be set straight if I'm wrong. A free thinker in NY, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 I wont get into a defensive mode here, however, that said, when your child will dump metals into the red zone on no chelators, just based on your genetics, then maybe it is worth looking at. My child takes 20 suups total, we are in Step 2, figure we will be done in about 8- 10 months 12 months tops, going on his progress. The sheer number of supplements are giving you a choice most choose 2-3 from each list some do more. The genetics took less than 6 weeks. There are several doctors thruout the US doing her protocol, and savy enough with the protocol, MD not needed beyond basic bloods now and again. RNA use not needed, that is why the list of supps are so long so you can choose what you want to implement. > > Hi Bea, > I have the same question, so I'm ready to read others' responses, too. > > For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for Gordon > & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one > hand, I found lots of very plausible ideas (e.g., order genetic tests > to figure out how best to treat your child; some kids are genetically > unable to handle sulpher-based chelation; treat gradually, adding > supplements one at a time to better gauge impact; the presence of > viruses/bacteria may inhibit the success of ordinary chelation > protocols). On the other hand, the variety and sheer number of > supplements given, depending on the patient's condition, borders on > parody. Here's the number of supplements, from stage 1 of the protocol > (i.e., before chelation even begins), associated with each kind of > potential problem: > > 1. neurological inflammation: 14 supplements > 2. liver support: 23 supplements (plus creams) > 3. kidney support: 5 supplements > 4. to protect against excess calcium: 3 supplements > 5. to increast calcium: 4 supplements > 6. to balance glutamate and GABA: 18 supplements > 7. pancreatic support: 8 supplements > 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs (to > be rotated) > 9. additional microbial support: 10 supplements > 10. chelate aluminum: 3 supplements > 11. decrease yeast: 7 probiotics (one per each day of week) > 12. more yeast support: 12 supplements > 13. balance parasites: 1 supplement > 14. reduce stims: 4 supplements > 15. support membrane fluidity: 4 supplements > 16. support immune system/spleen: 11 supplements > 17. aid in helping inflammation around nerves: 17 supplements > 18. aid KREBs cycle: 18 supplements > 19. balance copper/zinc: 8 supplements > 20. support gut (again with the gut!): 10 supplements > 21. aid constipation: 7 supplements. > > The treatment is gradual, so supplements can be introduced just one > every few days... seems like it would take years before one even got > one's child healthy enough to start step 2, let alone step 3! I know > not all patients need to take all these -- some supplements in a > category will be tolerated, some won't. And not all categories are > needed (perhaps your child doesn't have stims, for example). But the > cost, time, and inconvenience are mind-boggling. My kids will barely > tolerate one dropper of cod-liver oil containing supernuthera, > lithium, and melatonin. > > To figure all this out, you need to fork over $750-1250 (or more) to > get the genetics analyzed, which can take at least six months. Plus > the recommended diet is not just casein-free, gluten-free, it's > virtually everything-free. There is a list in the appendix about what > foods contain glumates and other no-no's; very few foods are safe. > Bagged salad mix is on the list! What's left to eat, you may ask? I > guess organic fruit and veg and meat -- oh no, protein is bad. > > Worse, you cannot get in to see this doctor; no one else has her exact > methods or special, propriatary RNA formula. Who's going to monitor > your child? There's a website (autismanswer.com) that left me with > more questions than answers. Most of the " chat " lists are locked, info > only, and virtually all the posted messages are worshipful > endorsements of Dr. Amy. Everyone's signature lists all their genetic > markers, weirdly enough. It smells like a cult to me. > > My hats off to any of you using this protocal with good results. I > don't think we could do it. Go ahead somebody and argue with me if you > disagree; I'd love to be set straight if I'm wrong. > > A free thinker in NY, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 The site is a nightmare, makes me feel autistic. That said, I did get a couple of ideas off there which I implemented and they turned out to be successful. Doubting that you can chelate metals that made their way into the brain with supplements, current exposure, sure, but past, IMO, not going to happen. And I don't want to give supplements forever beyond a good multivitamin and some clo. [ ] Re: Amy Yaskos protocol Hi Bea, I have the same question, so I'm ready to read others' responses, too. For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for Gordon & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one hand, I found lots of very plausible ideas (e.g., order genetic tests to figure out how best to treat your child; some kids are genetically unable to handle sulpher-based chelation; treat gradually, adding supplements one at a time to better gauge impact; the presence of viruses/bacteria may inhibit the success of ordinary chelation protocols). On the other hand, the variety and sheer number of supplements given, depending on the patient's condition, borders on parody. Here's the number of supplements, from stage 1 of the protocol (i.e., before chelation even begins), associated with each kind of potential problem: 1. neurological inflammation: 14 supplements 2. liver support: 23 supplements (plus creams) 3. kidney support: 5 supplements 4. to protect against excess calcium: 3 supplements 5. to increast calcium: 4 supplements 6. to balance glutamate and GABA: 18 supplements 7. pancreatic support: 8 supplements 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs (to be rotated) 9. additional microbial support: 10 supplements 10. chelate aluminum: 3 supplements 11. decrease yeast: 7 probiotics (one per each day of week) 12. more yeast support: 12 supplements 13. balance parasites: 1 supplement 14. reduce stims: 4 supplements 15. support membrane fluidity: 4 supplements 16. support immune system/spleen: 11 supplements 17. aid in helping inflammation around nerves: 17 supplements 18. aid KREBs cycle: 18 supplements 19. balance copper/zinc: 8 supplements 20. support gut (again with the gut!): 10 supplements 21. aid constipation: 7 supplements. The treatment is gradual, so supplements can be introduced just one every few days... seems like it would take years before one even got one's child healthy enough to start step 2, let alone step 3! I know not all patients need to take all these -- some supplements in a category will be tolerated, some won't. And not all categories are needed (perhaps your child doesn't have stims, for example). But the cost, time, and inconvenience are mind-boggling. My kids will barely tolerate one dropper of cod-liver oil containing supernuthera, lithium, and melatonin. To figure all this out, you need to fork over $750-1250 (or more) to get the genetics analyzed, which can take at least six months. Plus the recommended diet is not just casein-free, gluten-free, it's virtually everything-free. There is a list in the appendix about what foods contain glumates and other no-no's; very few foods are safe. Bagged salad mix is on the list! What's left to eat, you may ask? I guess organic fruit and veg and meat -- oh no, protein is bad. Worse, you cannot get in to see this doctor; no one else has her exact methods or special, propriatary RNA formula. Who's going to monitor your child? There's a website (autismanswer.com) that left me with more questions than answers. Most of the " chat " lists are locked, info only, and virtually all the posted messages are worshipful endorsements of Dr. Amy. Everyone's signature lists all their genetic markers, weirdly enough. It smells like a cult to me. My hats off to any of you using this protocal with good results. I don't think we could do it. Go ahead somebody and argue with me if you disagree; I'd love to be set straight if I'm wrong. A free thinker in NY, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2006 Report Share Posted August 8, 2006 In a message dated 09/08/2006 02:47:43 GMT Daylight Time, schwarzbeatrix@... writes: Has anybody used her protocol, what are your thoughts, experiences (pos+neg)_? We are using Cutler. >>>Just starting to look into it and have ordered the testing (ouch) We have used Cutler protocol for 4 years we have seen many many gains but my child is still non verbal and obviously 'Autistic'. We have seen good and very quick stuff with NCD which we started on a break from DMSA after having low minerals for first time ever (following a dabble with oral and TD EDTA) AC's is a chelation protocol, Yasko is very speciliased individual detox strategies, I don't think you can compare them and depending on your SNP's you may use both protocols Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 We changed up the fish oil. His recent food panel showed sensitivity to lemon. I realized he had been getting the CLO w/lemon for over a year. Changed that to a capsule w/out flavoring and he is doing great on it! (it's a lower dose too and his eye contact is great) Tami Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Well, that sounds much more reasonable. Six weeks to get your genetics? Was that the $750 profile? Only 20 supplements? That's not terrible. How long did it take you to get through Step 1? What kind of problems did you start with? Do you mind me asking you, as I'm very curious, was your child unable to chelate with sulphur based chelators? What was it about Yasko's protocol that helped you? Did your child have gut issues? Did your child receive live-virus vaccines as well as thimerosal? Did you have to modify your diet severely as well? What do you mean when you say chelating " based on genetics alone " ? Thanks for writing. I can't get my DAN doc to acknowledge that it's a good idea to tailor treatment to genetics; he doesn't know who YASKO is, etc. I'd like to implement some of her ideas, as they make sense. Right now, I'm just holding out to see how the ordinary DAN protocol is working. I could try another DAN, but this one is the closest (1.5 hrs drive) and we've already done a lot of testing and paid a lot of $$. I'd like to get hooked up with a doc who can do the best of all three worlds. Perhaps we'll have to go it alone, as many in this group (e.g., Dana) have done. I just don't know how we'd order tests to monitor progress. Any ideas out there? The thing I don't like about the DAN protocol, is that it is very hit-and-miss. The AC protocol seems more specific, based on more precise science; but the AC protocol involves oral dosing, which my kids would have a hard time with (right now we're using TD-DMSA) and ALA, which we're not ready for. (It sounds like ALA is for after one has chelated most metals out of the body first.) - > > > > Hi Bea, > > I have the same question, so I'm ready to read others' responses, > too. > > > > For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for > Gordon > > & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one > > hand, I found lots of very plausible ideas (e.g., order genetic > tests > > to figure out how best to treat your child; some kids are > genetically > > unable to handle sulpher-based chelation; treat gradually, adding > > supplements one at a time to better gauge impact; the presence of > > viruses/bacteria may inhibit the success of ordinary chelation > > protocols). On the other hand, the variety and sheer number of > > supplements given, depending on the patient's condition, borders on > > parody. Here's the number of supplements, from stage 1 of the > protocol > > (i.e., before chelation even begins), associated with each kind of > > potential problem: > > > > 1. neurological inflammation: 14 supplements > > 2. liver support: 23 supplements (plus creams) > > 3. kidney support: 5 supplements > > 4. to protect against excess calcium: 3 supplements > > 5. to increast calcium: 4 supplements > > 6. to balance glutamate and GABA: 18 supplements > > 7. pancreatic support: 8 supplements > > 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs > (to > > be rotated) > > 9. additional microbial support: 10 supplements > > 10. chelate aluminum: 3 supplements > > 11. decrease yeast: 7 probiotics (one per each day of week) > > 12. more yeast support: 12 supplements > > 13. balance parasites: 1 supplement > > 14. reduce stims: 4 supplements > > 15. support membrane fluidity: 4 supplements > > 16. support immune system/spleen: 11 supplements > > 17. aid in helping inflammation around nerves: 17 supplements > > 18. aid KREBs cycle: 18 supplements > > 19. balance copper/zinc: 8 supplements > > 20. support gut (again with the gut!): 10 supplements > > 21. aid constipation: 7 supplements. > > > > The treatment is gradual, so supplements can be introduced just one > > every few days... seems like it would take years before one even > got > > one's child healthy enough to start step 2, let alone step 3! I > know > > not all patients need to take all these -- some supplements in a > > category will be tolerated, some won't. And not all categories are > > needed (perhaps your child doesn't have stims, for example). But > the > > cost, time, and inconvenience are mind-boggling. My kids will > barely > > tolerate one dropper of cod-liver oil containing supernuthera, > > lithium, and melatonin. > > > > To figure all this out, you need to fork over $750-1250 (or more) > to > > get the genetics analyzed, which can take at least six months. Plus > > the recommended diet is not just casein-free, gluten-free, it's > > virtually everything-free. There is a list in the appendix about > what > > foods contain glumates and other no-no's; very few foods are safe. > > Bagged salad mix is on the list! What's left to eat, you may ask? I > > guess organic fruit and veg and meat -- oh no, protein is bad. > > > > Worse, you cannot get in to see this doctor; no one else has her > exact > > methods or special, propriatary RNA formula. Who's going to monitor > > your child? There's a website (autismanswer.com) that left me with > > more questions than answers. Most of the " chat " lists are locked, > info > > only, and virtually all the posted messages are worshipful > > endorsements of Dr. Amy. Everyone's signature lists all their > genetic > > markers, weirdly enough. It smells like a cult to me. > > > > My hats off to any of you using this protocal with good results. I > > don't think we could do it. Go ahead somebody and argue with me if > you > > disagree; I'd love to be set straight if I'm wrong. > > > > A free thinker in NY, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 You can keep the dan for the tests, many do and just do whatever protocol you need. There are also places online to order whatever test you want, you, they just send you the order and you go to a lab, they have lots of labs, like 6 near me and I don't exactly live in a metropolis, very rural here. Can't remember their name right now. No, Ala can be used right away if there has been no recent exposure to mercury, at least 3 months away. We used oral dmsa for a month, then added in oral ala, no problems at all, some have started with both at the same time. You almost can't go wrong with the low/frequent dosing protocol, only rule is give them frequently, according to their half life so: dmsa every 4 hours day and night ala every 3 hours day and night dmps every 8 hours day and night If you miss a dose by more than an hour, stop and wait for the next round. Don't begin or continue chelation if you child has a fever that reaches 102, or vomits, or exhibits lethargy. Make sure they are getting the basic antioxidants, C, B, magnesium and zinc, given in 3-4 doses during the day and E, once per day. Good luck, [ ] Re: Amy Yaskos protocol Well, that sounds much more reasonable. Six weeks to get your genetics? Was that the $750 profile? Only 20 supplements? That's not terrible. How long did it take you to get through Step 1? What kind of problems did you start with? Do you mind me asking you, as I'm very curious, was your child unable to chelate with sulphur based chelators? What was it about Yasko's protocol that helped you? Did your child have gut issues? Did your child receive live-virus vaccines as well as thimerosal? Did you have to modify your diet severely as well? What do you mean when you say chelating " based on genetics alone " ? Thanks for writing. I can't get my DAN doc to acknowledge that it's a good idea to tailor treatment to genetics; he doesn't know who YASKO is, etc. I'd like to implement some of her ideas, as they make sense. Right now, I'm just holding out to see how the ordinary DAN protocol is working. I could try another DAN, but this one is the closest (1.5 hrs drive) and we've already done a lot of testing and paid a lot of $$. I'd like to get hooked up with a doc who can do the best of all three worlds. Perhaps we'll have to go it alone, as many in this group (e.g., Dana) have done. I just don't know how we'd order tests to monitor progress. Any ideas out there? The thing I don't like about the DAN protocol, is that it is very hit-and-miss. The AC protocol seems more specific, based on more precise science; but the AC protocol involves oral dosing, which my kids would have a hard time with (right now we're using TD-DMSA) and ALA, which we're not ready for. (It sounds like ALA is for after one has chelated most metals out of the body first.) - > > > > Hi Bea, > > I have the same question, so I'm ready to read others' responses, > too. > > > > For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for > Gordon > > & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one > > hand, I found lots of very plausible ideas (e.g., order genetic > tests > > to figure out how best to treat your child; some kids are > genetically > > unable to handle sulpher-based chelation; treat gradually, adding > > supplements one at a time to better gauge impact; the presence of > > viruses/bacteria may inhibit the success of ordinary chelation > > protocols). On the other hand, the variety and sheer number of > > supplements given, depending on the patient's condition, borders on > > parody. Here's the number of supplements, from stage 1 of the > protocol > > (i.e., before chelation even begins), associated with each kind of > > potential problem: > > > > 1. neurological inflammation: 14 supplements > > 2. liver support: 23 supplements (plus creams) > > 3. kidney support: 5 supplements > > 4. to protect against excess calcium: 3 supplements > > 5. to increast calcium: 4 supplements > > 6. to balance glutamate and GABA: 18 supplements > > 7. pancreatic support: 8 supplements > > 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs > (to > > be rotated) > > 9. additional microbial support: 10 supplements > > 10. chelate aluminum: 3 supplements > > 11. decrease yeast: 7 probiotics (one per each day of week) > > 12. more yeast support: 12 supplements > > 13. balance parasites: 1 supplement > > 14. reduce stims: 4 supplements > > 15. support membrane fluidity: 4 supplements > > 16. support immune system/spleen: 11 supplements > > 17. aid in helping inflammation around nerves: 17 supplements > > 18. aid KREBs cycle: 18 supplements > > 19. balance copper/zinc: 8 supplements > > 20. support gut (again with the gut!): 10 supplements > > 21. aid constipation: 7 supplements. > > > > The treatment is gradual, so supplements can be introduced just one > > every few days... seems like it would take years before one even > got > > one's child healthy enough to start step 2, let alone step 3! I > know > > not all patients need to take all these -- some supplements in a > > category will be tolerated, some won't. And not all categories are > > needed (perhaps your child doesn't have stims, for example). But > the > > cost, time, and inconvenience are mind-boggling. My kids will > barely > > tolerate one dropper of cod-liver oil containing supernuthera, > > lithium, and melatonin. > > > > To figure all this out, you need to fork over $750-1250 (or more) > to > > get the genetics analyzed, which can take at least six months. Plus > > the recommended diet is not just casein-free, gluten-free, it's > > virtually everything-free. There is a list in the appendix about > what > > foods contain glumates and other no-no's; very few foods are safe. > > Bagged salad mix is on the list! What's left to eat, you may ask? I > > guess organic fruit and veg and meat -- oh no, protein is bad. > > > > Worse, you cannot get in to see this doctor; no one else has her > exact > > methods or special, propriatary RNA formula. Who's going to monitor > > your child? There's a website (autismanswer.com) that left me with > > more questions than answers. Most of the " chat " lists are locked, > info > > only, and virtually all the posted messages are worshipful > > endorsements of Dr. Amy. Everyone's signature lists all their > genetic > > markers, weirdly enough. It smells like a cult to me. > > > > My hats off to any of you using this protocal with good results. I > > don't think we could do it. Go ahead somebody and argue with me if > you > > disagree; I'd love to be set straight if I'm wrong. > > > > A free thinker in NY, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 , I looked at her site once too and ran away screaming from my computer, lol. I was wondering if you don't mind sharing what ideas you implemented that were successful? > > The site is a nightmare, makes me feel autistic. That said, I did get a couple of ideas off there which I implemented and they turned out to be successful. > > Doubting that you can chelate metals that made their way into the brain with supplements, current exposure, sure, but past, IMO, not going to happen. > > And I don't want to give supplements forever beyond a good multivitamin and some clo. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 > And I don't want to give supplements forever beyond a good multivitamin and some clo. I dropped the fish oil yesterday, and my son had his best day ever. Even a small amount of vitamin-fortified cereal will put him off for about 30-60 minutes [depending on how much he eats]. So you might not need a multivitamin or CLO when you are finished. And in fact, they might cause problems. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Sure, , but might be specific to us, ours always did better on the less preferred methylation path with TMG, point is to get them methylated anyway you can, but the alternative pathway is preferred. Ours had/has some kind of bottleneck at the folate pathway (couldn't take anything but folic acid, folinic and folapro made her a weepy mess) Yasko said that even kids who do better on TMG should at some point be tried on DMG with the methyl B12. We have only ever given two supplements that caused any problems, DMG and folinic or Folapro. The first time we tried DMG she literally bounced off the walls, but we did supplement the DMG for a few months, and it worked and now she is only on methyl B-12, very low dose and it is working well enough to the point where we have only been on a couple of chewable multiples and some clo for the last month, and doing as well or better than she ever has. I don't know why but she can now take doses of folinic or Folapro without producing the overemoting caused previously. For sure thinking that this somehow got fixed with chelation, but I would have never tested it without reading her comments. We have never done her testing as I don't see a lot of value in knowing what genetic alleles she has, to be fair, hers were light, struggling my way through that maze of a web site allowed me to see some similiarities between other kids and hers. This is an example of the information that can be gleaned from the site just knowing what supplements your kid does poorly on. For children failing to respond to chelation, I think this is a good place to try and figure out just what they need to be more functional, but I see it as an adjunct to chelation particularly useful with tough to respond kids. I don't buy into everything she says, but I am grateful for her alternative thinking. She does a great job, btw of explaining just how the methylation system works. Hope this helps, [ ] Re: Amy Yaskos protocol , I looked at her site once too and ran away screaming from my computer, lol. I was wondering if you don't mind sharing what ideas you implemented that were successful? > > The site is a nightmare, makes me feel autistic. That said, I did get a couple of ideas off there which I implemented and they turned out to be successful. > > Doubting that you can chelate metals that made their way into the brain with supplements, current exposure, sure, but past, IMO, not going to happen. > > And I don't want to give supplements forever beyond a good multivitamin and some clo. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 This is great, beyond words, great, Dana! Music to my ears and I hope you are right. My dd always got a multi and clo, the really terrible kind, not the kind they have now. When I first mentioned giving clo to our little one, her face paled and I thought she was going to pass out :-) Really happy for you, you deserve it after all of your hard work, hoping we get there someday. [ ] Re: Amy Yaskos protocol > And I don't want to give supplements forever beyond a good multivitamin and some clo. I dropped the fish oil yesterday, and my son had his best day ever. Even a small amount of vitamin-fortified cereal will put him off for about 30-60 minutes [depending on how much he eats]. So you might not need a multivitamin or CLO when you are finished. And in fact, they might cause problems. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Some kiddos with COMT +/+, VDR -/- should NEVER use mb12, Yasko does not believe all kids need mb12, some do not do well at all with it, and never will. Yes a form of b12, but noth methyl b12 for all. And too boot, unless your pathways are properly filled, you will not know it till it is, then you will see what happens to those kids that can not tolerate methyl supps. Been there done that. The use of TMG/DMG is a different issue and what you are trying to accomplish doing that. > > Sure, , but might be specific to us, ours always did better on the less preferred methylation path with TMG, point is to get them methylated anyway you can, but the alternative pathway is preferred. > > Ours had/has some kind of bottleneck at the folate pathway (couldn't take anything but folic acid, folinic and folapro made her a weepy mess) > > Yasko said that even kids who do better on TMG should at some point be tried on DMG with the methyl B12. We have only ever given two supplements that caused any problems, DMG and folinic or Folapro. The first time we tried DMG she literally bounced off the walls, but we did supplement the DMG for a few months, and it worked and now she is only on methyl B-12, very low dose and it is working well enough to the point where we have only been on a couple of chewable multiples and some clo for the last month, and doing as well or better than she ever has. > > I don't know why but she can now take doses of folinic or Folapro without producing the overemoting caused previously. For sure thinking that this somehow got fixed with chelation, but I would have never tested it without reading her comments. > > We have never done her testing as I don't see a lot of value in knowing what genetic alleles she has, to be fair, hers were light, struggling my way through that maze of a web site allowed me to see some similiarities between other kids and hers. This is an example of the information that can be gleaned from the site just knowing what supplements your kid does poorly on. > > For children failing to respond to chelation, I think this is a good place to try and figure out just what they need to be more functional, but I see it as an adjunct to chelation particularly useful with tough to respond kids. I don't buy into everything she says, but I am grateful for her alternative thinking. She does a great job, btw of explaining just how the methylation system works. > > Hope this helps, > > > > [ ] Re: Amy Yaskos protocol > > > > , > > I looked at her site once too and ran away screaming from my computer, > lol. I was wondering if you don't mind sharing what ideas you > implemented that were successful? > > > > > > > The site is a nightmare, makes me feel autistic. That said, I did > get a couple of ideas off there which I implemented and they turned > out to be successful. > > > > Doubting that you can chelate metals that made their way into the > brain with supplements, current exposure, sure, but past, IMO, not > going to happen. > > > > And I don't want to give supplements forever beyond a good > multivitamin and some clo. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Thanks for posting this, you're right, Yasko confined her comments solely about TMG and DMG, forgive my parphrasing. But, good example: now anyone who's child has used methyl B12 to advantage can mark those listed genetic alleles off their list. That is the way I found advantage to her site. [ ] Re: Amy Yaskos protocol > > > > , > > I looked at her site once too and ran away screaming from my computer, > lol. I was wondering if you don't mind sharing what ideas you > implemented that were successful? > > > > > > > The site is a nightmare, makes me feel autistic. That said, I did > get a couple of ideas off there which I implemented and they turned > out to be successful. > > > > Doubting that you can chelate metals that made their way into the > brain with supplements, current exposure, sure, but past, IMO, not > going to happen. > > > > And I don't want to give supplements forever beyond a good > multivitamin and some clo. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Well to an extent, we used mb12 for 2 years with benefit, yet, once I supplemented for the genetics it was a balistic nightmare, so you can not guess, I tried, and I was wrong surprisingly so, on several of the combinations that we had. But it did answer everyone of our questions,issues when we got them back. > > > > Sure, , but might be specific to us, ours always did better > on the less preferred methylation path with TMG, point is to get them > methylated anyway you can, but the alternative pathway is preferred. > > > > Ours had/has some kind of bottleneck at the folate pathway > (couldn't take anything but folic acid, folinic and folapro made her > a weepy mess) > > > > Yasko said that even kids who do better on TMG should at some point > be tried on DMG with the methyl B12. We have only ever given two > supplements that caused any problems, DMG and folinic or Folapro. The > first time we tried DMG she literally bounced off the walls, but we > did supplement the DMG for a few months, and it worked and now she is > only on methyl B-12, very low dose and it is working well enough to > the point where we have only been on a couple of chewable multiples > and some clo for the last month, and doing as well or better than she > ever has. > > > > I don't know why but she can now take doses of folinic or Folapro > without producing the overemoting caused previously. For sure > thinking that this somehow got fixed with chelation, but I would have > never tested it without reading her comments. > > > > We have never done her testing as I don't see a lot of value in > knowing what genetic alleles she has, to be fair, hers were light, > struggling my way through that maze of a web site allowed me to see > some similiarities between other kids and hers. This is an example of > the information that can be gleaned from the site just knowing what > supplements your kid does poorly on. > > > > For children failing to respond to chelation, I think this is a > good place to try and figure out just what they need to be more > functional, but I see it as an adjunct to chelation particularly > useful with tough to respond kids. I don't buy into everything she > says, but I am grateful for her alternative thinking. She does a > great job, btw of explaining just how the methylation system works. > > > > Hope this helps, > > > > > > > > [ ] Re: Amy Yaskos protocol > > > > > > > > , > > > > I looked at her site once too and ran away screaming from my > computer, > > lol. I was wondering if you don't mind sharing what ideas you > > implemented that were successful? > > > > > > > > > > > > The site is a nightmare, makes me feel autistic. That said, I > did > > get a couple of ideas off there which I implemented and they > turned > > out to be successful. > > > > > > Doubting that you can chelate metals that made their way into > the > > brain with supplements, current exposure, sure, but past, IMO, > not > > going to happen. > > > > > > And I don't want to give supplements forever beyond a good > > multivitamin and some clo. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 In a message dated 09/08/2006 21:47:46 GMT Daylight Time, morningflower61@... writes: Please excuse my ignorance. Would you be so kind and tell me what COMT +/+, and VDR -/- are?? >>>>25 July great interview with Dr Yasko on Autism One radio you can listen in the archives - explains a lot Mandi in UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 >(It sounds like ALA is for after one > has chelated most metals out of the body first.) Nope, it's only after a recent exposure that you need to wait 3 months to chelate with ALA, because ALA crosses the BBB and it could take Hg *into the brain if it's free-floating from a recent exposure. If the exposure was longer than 3 months ago, the Hg is already in the tissues and organs. ALA is the only chelator that will get the Hg out of the brain, so Andy calls it the most important one, the workhorse. Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Hello, Please excuse my ignorance. Would you be so kind and tell me what COMT +/+, and VDR -/- are?? Thank you so very much Samar > > > > Sure, , but might be specific to us, ours always did better > on the less preferred methylation path with TMG, point is to get them > methylated anyway you can, but the alternative pathway is preferred. > > > > Ours had/has some kind of bottleneck at the folate pathway > (couldn't take anything but folic acid, folinic and folapro made her > a weepy mess) > > > > Yasko said that even kids who do better on TMG should at some point > be tried on DMG with the methyl B12. We have only ever given two > supplements that caused any problems, DMG and folinic or Folapro. The > first time we tried DMG she literally bounced off the walls, but we > did supplement the DMG for a few months, and it worked and now she is > only on methyl B-12, very low dose and it is working well enough to > the point where we have only been on a couple of chewable multiples > and some clo for the last month, and doing as well or better than she > ever has. > > > > I don't know why but she can now take doses of folinic or Folapro > without producing the overemoting caused previously. For sure > thinking that this somehow got fixed with chelation, but I would have > never tested it without reading her comments. > > > > We have never done her testing as I don't see a lot of value in > knowing what genetic alleles she has, to be fair, hers were light, > struggling my way through that maze of a web site allowed me to see > some similiarities between other kids and hers. This is an example of > the information that can be gleaned from the site just knowing what > supplements your kid does poorly on. > > > > For children failing to respond to chelation, I think this is a > good place to try and figure out just what they need to be more > functional, but I see it as an adjunct to chelation particularly > useful with tough to respond kids. I don't buy into everything she > says, but I am grateful for her alternative thinking. She does a > great job, btw of explaining just how the methylation system works. > > > > Hope this helps, > > > > > > > > [ ] Re: Amy Yaskos protocol > > > > > > > > , > > > > I looked at her site once too and ran away screaming from my > computer, > > lol. I was wondering if you don't mind sharing what ideas you > > implemented that were successful? > > > > > > > > > > > > The site is a nightmare, makes me feel autistic. That said, I > did > > get a couple of ideas off there which I implemented and they > turned > > out to be successful. > > > > > > Doubting that you can chelate metals that made their way into > the > > brain with supplements, current exposure, sure, but past, IMO, > not > > going to happen. > > > > > > And I don't want to give supplements forever beyond a good > > multivitamin and some clo. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 my 5 year old son is very close to being non diagnosable, as mentioned by 2 of his therapists. Dr. Amy's protocol 5 months, organic food, penta water and lots of sleepless nights. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 This protocol works, if you look at the biology, it works. My son is proof it works. I had a therapist come in to evaluate him in nov. 2005 then she didnt see him again until july of 06. Her first comments were oh my god what did you do. I told her come into my kitchen and look at my son's protocol (60 bottles of supplements). She was like wow it works and I'm like yeah i guess it does. Intersting thing about the protein I read here, actually some people make silly uneducated comments. My son has always shown high ammonia on 7 straight plasma tests. Interestingly enough, we lowered his protein to around 15-18 grams a day, which is the reccomended based on his weight instead of just giving him a 25 gram protein hamburger for one meal. Imangine most kids are eating like 40-50 grams if not more oif protein aday. Well my son lost 5 pounds in 7 months and he is still in the 95th percentile in weight and in the 78th in height. So lowering the protein does work he gets what he needs, why would I stress his liver, his detox organ, plus now his ammonia is under control. People need to read the biology it's real not theory and it does work only downside it isn't free, looks like we get to keep our house after all. Phew!!!! glad i didn't waste my time and money on multi dan dr's one dan and 3 visits was all we needed to realize. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 go to autismanswer.com to the parents forum your answers are there. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 > > > > > > Hi Bea, > > > I have the same question, so I'm ready to read others' responses, > > too. > > > > > > For what it's worth, I _did_ fork out $30 (+ $19 shipping!) for > > Gordon > > > & Yasko's book (Puzzle of Autism, 2nd ed). In the book, on the one > > > hand, I found lots of very plausible ideas (e.g., order genetic > > tests > > > to figure out how best to treat your child; some kids are > > genetically > > > unable to handle sulpher-based chelation; treat gradually, adding > > > supplements one at a time to better gauge impact; the presence of > > > viruses/bacteria may inhibit the success of ordinary chelation > > > protocols). On the other hand, the variety and sheer number of > > > supplements given, depending on the patient's condition, borders > on > > > parody. Here's the number of supplements, from stage 1 of the > > protocol > > > (i.e., before chelation even begins), associated with each kind of > > > potential problem: > > > > > > 1. neurological inflammation: 14 supplements > > > 2. liver support: 23 supplements (plus creams) > > > 3. kidney support: 5 supplements > > > 4. to protect against excess calcium: 3 supplements > > > 5. to increast calcium: 4 supplements > > > 6. to balance glutamate and GABA: 18 supplements > > > 7. pancreatic support: 8 supplements > > > 8. decrease bacteria/repopulate GI tract: 8 supplements + 10 herbs > > (to > > > be rotated) > > > 9. additional microbial support: 10 supplements > > > 10. chelate aluminum: 3 supplements > > > 11. decrease yeast: 7 probiotics (one per each day of week) > > > 12. more yeast support: 12 supplements > > > 13. balance parasites: 1 supplement > > > 14. reduce stims: 4 supplements > > > 15. support membrane fluidity: 4 supplements > > > 16. support immune system/spleen: 11 supplements > > > 17. aid in helping inflammation around nerves: 17 supplements > > > 18. aid KREBs cycle: 18 supplements > > > 19. balance copper/zinc: 8 supplements > > > 20. support gut (again with the gut!): 10 supplements > > > 21. aid constipation: 7 supplements. > > > > > > The treatment is gradual, so supplements can be introduced just > one > > > every few days... seems like it would take years before one even > > got > > > one's child healthy enough to start step 2, let alone step 3! I > > know > > > not all patients need to take all these -- some supplements in a > > > category will be tolerated, some won't. And not all categories are > > > needed (perhaps your child doesn't have stims, for example). But > > the > > > cost, time, and inconvenience are mind-boggling. My kids will > > barely > > > tolerate one dropper of cod-liver oil containing supernuthera, > > > lithium, and melatonin. > > > > > > To figure all this out, you need to fork over $750-1250 (or more) > > to > > > get the genetics analyzed, which can take at least six months. > Plus > > > the recommended diet is not just casein-free, gluten-free, it's > > > virtually everything-free. There is a list in the appendix about > > what > > > foods contain glumates and other no-no's; very few foods are safe. > > > Bagged salad mix is on the list! What's left to eat, you may ask? > I > > > guess organic fruit and veg and meat -- oh no, protein is bad. > > > > > > Worse, you cannot get in to see this doctor; no one else has her > > exact > > > methods or special, propriatary RNA formula. Who's going to > monitor > > > your child? There's a website (autismanswer.com) that left me with > > > more questions than answers. Most of the " chat " lists are locked, > > info > > > only, and virtually all the posted messages are worshipful > > > endorsements of Dr. Amy. Everyone's signature lists all their > > genetic > > > markers, weirdly enough. It smells like a cult to me. > > > > > > My hats off to any of you using this protocal with good results. I > > > don't think we could do it. Go ahead somebody and argue with me if > > you > > > disagree; I'd love to be set straight if I'm wrong. > > > > > > A free thinker in NY, > > > > > > > >THank you . I think you just answered my questions. Isnt it a fair assumption to see in a plasm cysteine test from Smoky Mountains what your reaction to sulfur is ? It is my understanding this is why we did the test. 2) You can determine viruses through an IGG ige test. I have heard that she has some type of formula for Epstein Barr which is one we battle. So we may need to consider it just to get the treatment for EBV. I think this will be our last resort though. THanks tRacy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 > > And I don't want to give supplements forever beyond a good > multivitamin and some clo. > > > I dropped the fish oil yesterday, and my son had his best day ever. > > Even a small amount of vitamin-fortified cereal will put him off for > about 30-60 minutes [depending on how much he eats]. > > So you might not need a multivitamin or CLO when you are finished. And > in fact, they might cause problems. > > Dana > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 > > > > Sure, , but might be specific to us, ours always did better > on the less preferred methylation path with TMG, point is to get them > methylated anyway you can, but the alternative pathway is preferred. > > > > Ours had/has some kind of bottleneck at the folate pathway > (couldn't take anything but folic acid, folinic and folapro made her > a weepy mess) > > > > Yasko said that even kids who do better on TMG should at some point > be tried on DMG with the methyl B12. We have only ever given two > supplements that caused any problems, DMG and folinic or Folapro. The > first time we tried DMG she literally bounced off the walls, but we > did supplement the DMG for a few months, and it worked and now she is > only on methyl B-12, very low dose and it is working well enough to > the point where we have only been on a couple of chewable multiples > and some clo for the last month, and doing as well or better than she > ever has. > > > > I don't know why but she can now take doses of folinic or Folapro > without producing the overemoting caused previously. For sure > thinking that this somehow got fixed with chelation, but I would have > never tested it without reading her comments. > > > > We have never done her testing as I don't see a lot of value in > knowing what genetic alleles she has, to be fair, hers were light, > struggling my way through that maze of a web site allowed me to see > some similiarities between other kids and hers. This is an example of > the information that can be gleaned from the site just knowing what > supplements your kid does poorly on. > > > > For children failing to respond to chelation, I think this is a > good place to try and figure out just what they need to be more > functional, but I see it as an adjunct to chelation particularly > useful with tough to respond kids. I don't buy into everything she > says, but I am grateful for her alternative thinking. She does a > great job, btw of explaining just how the methylation system works. > > > > Hope this helps, > > > > > > > > [ ] Re: Amy Yaskos protocol > > > > > > > > , > > > > I looked at her site once too and ran away screaming from my > computer, > > lol. I was wondering if you don't mind sharing what ideas you > > implemented that were successful? > > > > > > > > > > > > The site is a nightmare, makes me feel autistic. That said, I > did > > get a couple of ideas off there which I implemented and they > turned > > out to be successful. > > > > > > Doubting that you can chelate metals that made their way into > the > > brain with supplements, current exposure, sure, but past, IMO, > not > > going to happen. > > > > > > And I don't want to give supplements forever beyond a good > > multivitamin and some clo. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Well, I'm glad you got benefit from the Yasko protocol, but how come you guys don't speak up and discuss the particulars when Andy comments on this protocol? I'd love to see a good discussion on it. [ ] Re: Amy Yaskos protocol > > > > > > > > , > > > > I looked at her site once too and ran away screaming from my > computer, > > lol. I was wondering if you don't mind sharing what ideas you > > implemented that were successful? > > > > > > > > > > > > The site is a nightmare, makes me feel autistic. That said, I > did > > get a couple of ideas off there which I implemented and they > turned > > out to be successful. > > > > > > Doubting that you can chelate metals that made their way into > the > > brain with supplements, current exposure, sure, but past, IMO, > not > > going to happen. > > > > > > And I don't want to give supplements forever beyond a good > > multivitamin and some clo. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Well wehn Andy makes a comment we will be sure to acknowledge the comments, but from searching, he didn't have much to say about it, I think less than 10 overall comments from my archieve search. Cant dispute a 10,000 aluminum excretion on no chelators though. > > > > > > Sure, , but might be specific to us, ours always did > better > > on the less preferred methylation path with TMG, point is to get > them > > methylated anyway you can, but the alternative pathway is > preferred. > > > > > > Ours had/has some kind of bottleneck at the folate pathway > > (couldn't take anything but folic acid, folinic and folapro made > her > > a weepy mess) > > > > > > Yasko said that even kids who do better on TMG should at some > point > > be tried on DMG with the methyl B12. We have only ever given two > > supplements that caused any problems, DMG and folinic or Folapro. > The > > first time we tried DMG she literally bounced off the walls, but > we > > did supplement the DMG for a few months, and it worked and now > she is > > only on methyl B-12, very low dose and it is working well enough > to > > the point where we have only been on a couple of chewable > multiples > > and some clo for the last month, and doing as well or better than > she > > ever has. > > > > > > I don't know why but she can now take doses of folinic or > Folapro > > without producing the overemoting caused previously. For sure > > thinking that this somehow got fixed with chelation, but I would > have > > never tested it without reading her comments. > > > > > > We have never done her testing as I don't see a lot of value in > > knowing what genetic alleles she has, to be fair, hers were > light, > > struggling my way through that maze of a web site allowed me to > see > > some similiarities between other kids and hers. This is an > example of > > the information that can be gleaned from the site just knowing > what > > supplements your kid does poorly on. > > > > > > For children failing to respond to chelation, I think this is a > > good place to try and figure out just what they need to be more > > functional, but I see it as an adjunct to chelation particularly > > useful with tough to respond kids. I don't buy into everything > she > > says, but I am grateful for her alternative thinking. She does a > > great job, btw of explaining just how the methylation system > works. > > > > > > Hope this helps, > > > > > > > > > > > > [ ] Re: Amy Yaskos protocol > > > > > > > > > > > > , > > > > > > I looked at her site once too and ran away screaming from my > > computer, > > > lol. I was wondering if you don't mind sharing what ideas you > > > implemented that were successful? > > > > > > > > > > > > > > > > > The site is a nightmare, makes me feel autistic. That said, I > > did > > > get a couple of ideas off there which I implemented and they > > turned > > > out to be successful. > > > > > > > > Doubting that you can chelate metals that made their way into > > the > > > brain with supplements, current exposure, sure, but past, IMO, > > not > > > going to happen. > > > > > > > > And I don't want to give supplements forever beyond a good > > > multivitamin and some clo. > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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