Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 > Is there anyone out there having BAD results with ALA only??? > Are you just not speaking up??? Other than minor > disturbances?? Has anyone tried ALA only and had it not lead to > improvements??? I would like to hear this too, and in as much detail as you can offer. Andy > I keep wondering if they should be used togather??? Maybe one > at a time??? > > Laurie > Mom to Grace 3.11 > > PS... Grace's ATEC scores have gone down 21 points in 17 > days!!! On ALA only!!! > > 4/17/00 74 > 3/20/01 70 > 3/30/01 56 > 4/05/01 49!!!! > > > > > > my clinical experience is raising some questions that I can't > > find answers for, such as the regression in some kids > following the addition > > of ALA. Even though we know it's like a stimulant to the gut to > grow lots of > > bugs, particularly clostridia, I'm not sure that's the whole story. > I now > > double the probiotics on the days of ALA for that reason. > Although I'm still > > using it for kids I'm chelating, I'm not even sure at this point that > ALA > > should be an over-the-counter nutrient without us really > knowing how or how > > not to use it. All the information is still not in, so I think there's > plenty > > of room for doubt and questioning and research and getting > more information. > > The main area we don't know about is the use of these > substances in an > > immature human brain. I think what one does to turn around > mercury poisoning > > that is acquired from amalgams might be different than going > into a small > > child's developing brain, and it is serious business that we all > owe it to > > ourselves to question and go very cautiously. We're not even > sure that the > > DMSA works by taking out the mercury, but by some other > unknown mechanism > > helping the gut function better. There are many many > questions, and I want > > to be open to reports from parents as well as from any > scientists who might > > be willing to approach this arena. Jaquelyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 I have not used ALA only, but am just starting to use DMSA-only for three days followed by ALA-only for three days and then 8 days off (except for nutrients of course). Too soon to report how this regime works, but the two may have been competing with each other in some way. I had understood from Andy originally that the DMSA would help alleviate side effects of ALA, but did not observe that in some cases. Would appreciate any ideas on that, Andy. Jaquelyn AndyCutler@... wrote: > > Is there anyone out there having BAD results with ALA only??? > > Are you just not speaking up??? Other than minor > > disturbances?? Has anyone tried ALA only and had it not lead to > > improvements??? > > I would like to hear this too, and in as much detail as you can offer. > > Andy > > > I keep wondering if they should be used togather??? Maybe one > > at a time??? > > > > Laurie > > Mom to Grace 3.11 > > > > PS... Grace's ATEC scores have gone down 21 points in 17 > > days!!! On ALA only!!! > > > > 4/17/00 74 > > 3/20/01 70 > > 3/30/01 56 > > 4/05/01 49!!!! > > > > > > > > > > > > my clinical experience is raising some questions that I can't > > > find answers for, such as the regression in some kids > > following the addition > > > of ALA. Even though we know it's like a stimulant to the gut to > > grow lots of > > > bugs, particularly clostridia, I'm not sure that's the whole > story. > > I now > > > double the probiotics on the days of ALA for that reason. > > Although I'm still > > > using it for kids I'm chelating, I'm not even sure at this point > that > > ALA > > > should be an over-the-counter nutrient without us really > > knowing how or how > > > not to use it. All the information is still not in, so I think > there's > > plenty > > > of room for doubt and questioning and research and getting > > more information. > > > The main area we don't know about is the use of these > > substances in an > > > immature human brain. I think what one does to turn around > > mercury poisoning > > > that is acquired from amalgams might be different than going > > into a small > > > child's developing brain, and it is serious business that we all > > owe it to > > > ourselves to question and go very cautiously. We're not even > > sure that the > > > DMSA works by taking out the mercury, but by some other > > unknown mechanism > > > helping the gut function better. There are many many > > questions, and I want > > > to be open to reports from parents as well as from any > > scientists who might > > > be willing to approach this arena. Jaquelyn > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 The only " bad " (though it wasn't horrible bad) result was an increase in allergic symptoms which then prompted distress and frustration. Lots of nose rubbing and running, sneezing, and sensitive-to-light eyes. All this on a very low dose (5mg) of ALA-alone. These symptoms were not so evident when, the next time, I stayed with the 5mg ALA (yes, every 3 hours) and added 25mg DMSA. Coincidence? maybe? [ ] Re: ALA only > > Is there anyone out there having BAD results with ALA only??? > > Are you just not speaking up??? Other than minor > > disturbances?? Has anyone tried ALA only and had it not lead to > > improvements??? > > I would like to hear this too, and in as much detail as you can offer. > > Andy > > > I keep wondering if they should be used togather??? Maybe one > > at a time??? > > > > Laurie > > Mom to Grace 3.11 > > > > PS... Grace's ATEC scores have gone down 21 points in 17 > > days!!! On ALA only!!! > > > > 4/17/00 74 > > 3/20/01 70 > > 3/30/01 56 > > 4/05/01 49!!!! > > > > > > > > > > > > my clinical experience is raising some questions that I can't > > > find answers for, such as the regression in some kids > > following the addition > > > of ALA. Even though we know it's like a stimulant to the gut to > > grow lots of > > > bugs, particularly clostridia, I'm not sure that's the whole > story. > > I now > > > double the probiotics on the days of ALA for that reason. > > Although I'm still > > > using it for kids I'm chelating, I'm not even sure at this point > that > > ALA > > > should be an over-the-counter nutrient without us really > > knowing how or how > > > not to use it. All the information is still not in, so I think > there's > > plenty > > > of room for doubt and questioning and research and getting > > more information. > > > The main area we don't know about is the use of these > > substances in an > > > immature human brain. I think what one does to turn around > > mercury poisoning > > > that is acquired from amalgams might be different than going > > into a small > > > child's developing brain, and it is serious business that we all > > owe it to > > > ourselves to question and go very cautiously. We're not even > > sure that the > > > DMSA works by taking out the mercury, but by some other > > unknown mechanism > > > helping the gut function better. There are many many > > questions, and I want > > > to be open to reports from parents as well as from any > > scientists who might > > > be willing to approach this arena. Jaquelyn > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Listmates, I started my son on ALA alone just to see if it would do any thing, every three hours. I was prepared to stop if I saw any bad reaction. Jack did have some increase in chewing and increase in hyperactivity, I think the chewing may be his stimming. This is his only continuous odd behavior. After the three days he got his " T " sound and " w " sound with some other pluses, truly amazing. After 11 days, we did another round. He got his " j " sound and was happier. Convinced this was working, I found a doctor to prescribe the DMSA to use with the ALA. There was no real side effect with the two together. He was calmer. With each round I see some type of plus. I am concerned about the yeast I have been reading about but I have only had progress, especially by the the second weak. Alot of gross and fine motor skills are increasing. nne I wonder if the kids with the problems with the ALA are allergic to it. -- In @y..., Jaquelyn McCandless <JMcCandless@p...> wrote: > I have not used ALA only, but am just starting to use DMSA-only for three > days followed by ALA-only for three days and then 8 days off (except for > nutrients of course). Too soon to report how this regime works, but the two > may have been competing with each other in some way. I had understood from > Andy originally that the DMSA would help alleviate side effects of ALA, but > did not observe that in some cases. Would appreciate any ideas on that, > Andy. Jaquelyn > > AndyCutler@a... wrote: > > > > Is there anyone out there having BAD results with ALA only??? > > > Are you just not speaking up??? Other than minor > > > disturbances?? Has anyone tried ALA only and had it not lead to > > > improvements??? > > > > I would like to hear this too, and in as much detail as you can offer. > > > > Andy > > > > > I keep wondering if they should be used togather??? Maybe one > > > at a time??? > > > > > > Laurie > > > Mom to Grace 3.11 > > > > > > PS... Grace's ATEC scores have gone down 21 points in 17 > > > days!!! On ALA only!!! > > > > > > 4/17/00 74 > > > 3/20/01 70 > > > 3/30/01 56 > > > 4/05/01 49!!!! > > > > > > > > > > > > > > > > > > my clinical experience is raising some questions that I can't > > > > find answers for, such as the regression in some kids > > > following the addition > > > > of ALA. Even though we know it's like a stimulant to the gut to > > > grow lots of > > > > bugs, particularly clostridia, I'm not sure that's the whole > > story. > > > I now > > > > double the probiotics on the days of ALA for that reason. > > > Although I'm still > > > > using it for kids I'm chelating, I'm not even sure at this point > > that > > > ALA > > > > should be an over-the-counter nutrient without us really > > > knowing how or how > > > > not to use it. All the information is still not in, so I think > > there's > > > plenty > > > > of room for doubt and questioning and research and getting > > > more information. > > > > The main area we don't know about is the use of these > > > substances in an > > > > immature human brain. I think what one does to turn around > > > mercury poisoning > > > > that is acquired from amalgams might be different than going > > > into a small > > > > child's developing brain, and it is serious business that we all > > > owe it to > > > > ourselves to question and go very cautiously. We're not even > > > sure that the > > > > DMSA works by taking out the mercury, but by some other > > > unknown mechanism > > > > helping the gut function better. There are many many > > > questions, and I want > > > > to be open to reports from parents as well as from any > > > scientists who might > > > > be willing to approach this arena. Jaquelyn > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 With my son we've been using ALA for the last 3 weekends. Yesterday he said " help me " , (nonverbal child) but I'm not sure if it's the ALA, because in the past he has occasionally said a word or two when frustrated. *shrug* As for BAD results, he's been showing more obsessive compulsive problems, won't let us move an object in his sight without him moving it back. If I pick up some trash he left on the floor, he'll dig into the trash and put it back where it was. I'm hoping IF I can get the house clean enough, long enough that he'll atleast turn it into needing every thing clean OH, who am I kidding, he'll never be a neat freak....it's not in our genes!! Andy, could this OCD stuff be too high ALA? He's also been covering his ears, which he never did before, but I'm hoping that means he's hearing more clearly, and just overwhelmed right now. It does only happen when too many people are talking, or other noise. He's been having more temper tantrums over the last month, but I've always seen that come before improvement, so it's making me hopeful!! Blessings, ps. Andy, thank you SOOOO much for being on this list!!!!!After Tristan gets better and I get to make him some special NON gluten and caesin free cookies, I'll send you some!! Or do you like cream puffs, or gooey butter cake? I use to LOVE to bake (well, really, I love to eat, and baking is a must for that) And I dream about making these things again some day. OK, eating these things again AndyCutler@... wrote: > > Is there anyone out there having BAD results with ALA only??? > > Are you just not speaking up??? Other than minor > > disturbances?? Has anyone tried ALA only and had it not lead to > > improvements??? > > I would like to hear this too, and in as much detail as you can offer. > > Andy > > > I keep wondering if they should be used togather??? Maybe one > > at a time??? > > > > Laurie > > Mom to Grace 3.11 > > > > PS... Grace's ATEC scores have gone down 21 points in 17 > > days!!! On ALA only!!! > > > > 4/17/00 74 > > 3/20/01 70 > > 3/30/01 56 > > 4/05/01 49!!!! > > > > > > > > > > > > my clinical experience is raising some questions that I can't > > > find answers for, such as the regression in some kids > > following the addition > > > of ALA. Even though we know it's like a stimulant to the gut to > > grow lots of > > > bugs, particularly clostridia, I'm not sure that's the whole > story. > > I now > > > double the probiotics on the days of ALA for that reason. > > Although I'm still > > > using it for kids I'm chelating, I'm not even sure at this point > that > > ALA > > > should be an over-the-counter nutrient without us really > > knowing how or how > > > not to use it. All the information is still not in, so I think > there's > > plenty > > > of room for doubt and questioning and research and getting > > more information. > > > The main area we don't know about is the use of these > > substances in an > > > immature human brain. I think what one does to turn around > > mercury poisoning > > > that is acquired from amalgams might be different than going > > into a small > > > child's developing brain, and it is serious business that we all > > owe it to > > > ourselves to question and go very cautiously. We're not even > > sure that the > > > DMSA works by taking out the mercury, but by some other > > unknown mechanism > > > helping the gut function better. There are many many > > questions, and I want > > > to be open to reports from parents as well as from any > > scientists who might > > > be willing to approach this arena. Jaquelyn > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 , Your post made me cry, it brought back alot of old memories, I pray, that one day alot of these things you deal with on a daily basis, wiil only be a memory, one you could put in the past, as your son gets better. Hey, and cream puffs sound so wonderful.My dreams are as yours, I miss being in my kitchen making something wonderful and tastey to eat for everyone to enjoy. I pray those words that you son speaks, will keep coming, I think they will, Bless you, Leah -- In @y..., mnlarue@s... wrote: > With my son we've been using ALA for the last 3 weekends. Yesterday he said > " help me " , (nonverbal child) but I'm not sure if it's the ALA, because in the > past he has occasionally said a word or two when frustrated. *shrug* > As for BAD results, he's been showing more obsessive compulsive problems, > won't let us move an object in his sight without him moving it back. If I > pick up some trash he left on the floor, he'll dig into the trash and put it > back where it was. I'm hoping IF I can get the house clean enough, long > enough that he'll atleast turn it into needing every thing clean > OH, who am I kidding, he'll never be a neat freak....it's not in our genes!! > > Andy, could this OCD stuff be too high ALA? He's also been covering his ears, > which he never did before, but I'm hoping that means he's hearing more > clearly, and just overwhelmed right now. It does only happen when too many > people are talking, or other noise. He's been having more temper tantrums > over the last month, but I've always seen that come before improvement, so > it's making me hopeful!! > > Blessings, > > > ps. Andy, thank you SOOOO much for being on this list!!!!!After Tristan gets > better and I get to make him some special NON gluten and caesin free cookies, > I'll send you some!! Or do you like cream puffs, or gooey butter cake? I use > to LOVE to bake (well, really, I love to eat, and baking is a must for that) > And I dream about making these things again some day. OK, eating these things > again > > AndyCutler@a... wrote: > > > > Is there anyone out there having BAD results with ALA only??? > > > Are you just not speaking up??? Other than minor > > > disturbances?? Has anyone tried ALA only and had it not lead to > > > improvements??? > > > > I would like to hear this too, and in as much detail as you can offer. > > > > Andy > > > > > I keep wondering if they should be used togather??? Maybe one > > > at a time??? > > > > > > Laurie > > > Mom to Grace 3.11 > > > > > > PS... Grace's ATEC scores have gone down 21 points in 17 > > > days!!! On ALA only!!! > > > > > > 4/17/00 74 > > > 3/20/01 70 > > > 3/30/01 56 > > > 4/05/01 49!!!! > > > > > > > > > > > > > > > > > > my clinical experience is raising some questions that I can't > > > > find answers for, such as the regression in some kids > > > following the addition > > > > of ALA. Even though we know it's like a stimulant to the gut to > > > grow lots of > > > > bugs, particularly clostridia, I'm not sure that's the whole > > story. > > > I now > > > > double the probiotics on the days of ALA for that reason. > > > Although I'm still > > > > using it for kids I'm chelating, I'm not even sure at this point > > that > > > ALA > > > > should be an over-the-counter nutrient without us really > > > knowing how or how > > > > not to use it. All the information is still not in, so I think > > there's > > > plenty > > > > of room for doubt and questioning and research and getting > > > more information. > > > > The main area we don't know about is the use of these > > > substances in an > > > > immature human brain. I think what one does to turn around > > > mercury poisoning > > > > that is acquired from amalgams might be different than going > > > into a small > > > > child's developing brain, and it is serious business that we all > > > owe it to > > > > ourselves to question and go very cautiously. We're not even > > > sure that the > > > > DMSA works by taking out the mercury, but by some other > > > unknown mechanism > > > > helping the gut function better. There are many many > > > questions, and I want > > > > to be open to reports from parents as well as from any > > > scientists who might > > > > be willing to approach this arena. Jaquelyn > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 MArianne, So if you were starting again....would you do ALA alone or combine it with DMSA.? From one who hopes to start as soon as the parasites are out of the body. Sharon in Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2001 Report Share Posted April 11, 2001 Sharon, If I were to do it over again and did not know what to expect. I would have started with DMSA alone for a few weeks and then add in the ALA. From going through the old archives that seems the safest way to do it. Fortunately for Jack, the increase hyperactivity was not too bad with the ALA. The only reason I started with the ALA alone was because my doctor refused to help and I did not know how to get DMSA w/o a prescription. I read both Andy and Dr. Amy say back in the 2000's if you could not get help from a doctor try ALA alone every three hours and see what happens. Good luck and keep us posted. nne > MArianne, > So if you were starting again....would you do ALA alone or combine it > with DMSA.? > From one who hopes to start as soon as the parasites are out of the body. > Sharon in Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2001 Report Share Posted April 12, 2001 > > > my clinical experience is raising some questions that I can't > > > > find answers for, such as the regression in some kids > > > following the addition > > > > of ALA. Even though we know it's like a stimulant to the gut to > > > grow lots of > > > > bugs, particularly clostridia, I'm not sure that's the whole > > story. > > > I now > > > > double the probiotics on the days of ALA for that reason. > > > Although I'm still > > > > using it for kids I'm chelating, I'm not even sure at this point > > that > > > ALA > > > > should be an over-the-counter nutrient without us really > > > knowing how or how > > > > not to use it. All the information is still not in, so I think > > there's > > > plenty > > > > of room for doubt and questioning and research and getting > > > more information. > > > > The main area we don't know about is the use of these > > > substances in an > > > > immature human brain. I think what one does to turn around > > > mercury poisoning > > > > that is acquired from amalgams might be different than going > > > into a small > > > > child's developing brain, and it is serious business that we all > > > owe it to > > > > ourselves to question and go very cautiously. We're not even > > > sure that the > > > > DMSA works by taking out the mercury, but by some other > > > unknown mechanism > > > > helping the gut function better. There are many many > > > questions, and I want > > > > to be open to reports from parents as well as from any > > > scientists who might > > > > be willing to approach this arena. Jaquelyn > > > > ======================================================= > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2001 Report Share Posted July 25, 2001 > > Laurie, > Thanks for sharing your daughter's encouraging story. I had tears in my eyes > reading it. How inspiring.....can I ask why you decided to just do the ALA > and not DMSA? Im fairly new to all this and havent started chelating my > little guy (4.5yo) but plan to in a few weeks. > I decided to do ALA only, after a lot of reading here... For some reason I did not feel comfortable giving the DMSA on my own even though you can get it. As I wrote in my earlier post we hopefuly will add DMSA in, in Aug... I always have been a bit backwards! ;-) We are VERY rural and there were no dr's around that had any idea what I was talking about! It was really interesting to read the criteria for Dr Amy's stats.... Based on our experience I would have rated Grace as moderatly improved, but reading the criteria, she probably would have been in the slight catagory, depressing but hopeful! That language is coming but slowly! > Marked - patient now essentially " normal " > - may have slight expressive language delay > - appropriate interaction and toy play > - may still have slight trouble with pronunciation of words > - receptive language now age-level > - may still display some self-stimulatory behaviors at times > Moderate - patient now verbal, speaks in sentences > - responds to questions and commands > - some appropriate toy play > - interacts well with significant others > Slight - some improvements in receptive language > - can label objects verbally > - verbally states wants and needs > - minimal appropriate toy play > - some improvements in interactions with others > None - little if any response in any aspect of language/behavior > Those worried about the ALA burning we switched to Kirkmans, it has a bit of methol to counteract the burning and flavoring, no problem mixed in a little juice. She did fight the twinlabs, probably for this reason. Laurie Mom to Grace 4.3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2002 Report Share Posted May 27, 2002 Hi -- just curious-- how long have you been chelating (in terms of months/years)? Thanks, maryW --- In @y..., " & Jack Rawlings " <jamaraw@a...> wrote: > Hi List, > I just wanted to mention that I am using only 25 mgs of ala every three hours along with all the other supplements, and my son is doing great. > R Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 R, I am thrilled for you. [ ] ala only > Hi List, > I just wanted to mention that I am using only 25 mgs of ala every three hours along with all the other supplements, and my son is doing great. He did not get the rash this time around or hyper or stimmy..Also, yesterday we celebrated his 7 birthday party and all the other kids were typical.You couldn't tell he's autistic! He was candlepin bowling with no problem. In fact one of the mothers who was there said she helps out as a room mother and didn't even know he has autism and she's a nurse!!!!!!.We keep making more and more gains....this week-end he started asking me how much this number and that number adds up to and he was giving me negative numbers.He has been telling jokes,playing more appropiately and not saying as many inappropiate things to people.He also did a complicated puzzle which I have never seen him do.I'm waiting for the bomb to drop, but so far it hasn't. > R > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 R, So happy for you!! Has your child had any yeast issues or other severe gut problems leading up to the ALA? Just curious... Lori > R, > > I am thrilled for you. > > > [ ] ala only > > > > Hi List, > > I just wanted to mention that I am using only 25 mgs of ala every three > hours along with all the other supplements, and my son is doing great. He > did not get the rash this time around or hyper or stimmy..Also, yesterday we > celebrated his 7 birthday party and all the other kids were typical.You > couldn't tell he's autistic! He was candlepin bowling with no problem. In > fact one of the mothers who was there said she helps out as a room mother > and didn't even know he has autism and she's a nurse!!!!!!.We keep making > more and more gains....this week-end he started asking me how much this > number and that number adds up to and he was giving me negative numbers.He > has been telling jokes,playing more appropiately and not saying as many > inappropiate things to people.He also did a complicated puzzle which I have > never seen him do.I'm waiting for the bomb to drop, but so far it hasn't. > > R > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Lori? Are you referring to originally or since starting ALA? Quote Link to comment Share on other sites More sharing options...
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