Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 In a message dated 12/2/2004 1:58:31 P.M. Eastern Standard Time, youngjaem@... writes: Has anyone that have been using Andy Cutler's protocol for a while have little to no improvement but then switched to Buttar's Td-dmps protocol and seen improvement or vice versa? We saw some nice improvements for the first few rounds of DMSA but when we added ALA he regressed horribly and it took almost a year to bring him back. Our doctor at the time said he should never use ALA again. Hunter's doing incredible with the TD DMPS and continues to make gains. I'm thrilled that we've finally found something he can tolerate and that we can continue without any interruptions because of gut bugs (the ThreeLac has been the best thing that ever happened to him when it comes to yeast). We've been at it 4 months now and the major stimming from the beginning is almost gone and he's sleeping better. Jo Pike National Autism Association Phone: 877-NAA-AUTISM Email: Jo@... _http://nationalautismassociation.org/_ (http://nationalautismassociation.org/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 This is solely my impression.... on another board where TD-DMPS is discussed a lot I have seen at least 5-6 accounts of kids with no gains or little gains on the 3-4 hour ALA or DMSA that have reported significant gains on TD-DMPS, some with lipo glut some without (I mentioned the lipo glut because this may be contributing to the success of these kids)and another group of 5 or 6 older kids who may not have tried ALA or DMSA (I have not seen enough accounts far enough back to remember accurately if the older kids tried the ALA/DMSA or not) but have improvement, hope that helps > > Has anyone that have been using Andy Cutler's protocol for a while > have little to no improvement but then switched to Buttar's Td-dmps > protocol and seen improvement or vice versa? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Yikes!! Can anyone explain why this child regressed for a YEAR? Anyone? Re: [ ] Cutler's vs Buttar's protocol In a message dated 12/2/2004 1:58:31 P.M. Eastern Standard Time, youngjaem@... writes: Has anyone that have been using Andy Cutler's protocol for a while have little to no improvement but then switched to Buttar's Td-dmps protocol and seen improvement or vice versa? We saw some nice improvements for the first few rounds of DMSA but when we added ALA he regressed horribly and it took almost a year to bring him back. Our doctor at the time said he should never use ALA again. Hunter's doing incredible with the TD DMPS and continues to make gains. I'm thrilled that we've finally found something he can tolerate and that we can continue without any interruptions because of gut bugs (the ThreeLac has been the best thing that ever happened to him when it comes to yeast). We've been at it 4 months now and the major stimming from the beginning is almost gone and he's sleeping better. Jo Pike National Autism Association Phone: 877-NAA-AUTISM Email: Jo@... _http://nationalautismassociation.org/_ (http://nationalautismassociation.org/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Can I just say that I really appreciate that fact we can discuss the different protocols and all the different chelation methods on this board and get some opinions of all. Its been very helpful to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Just a question: Can you compare oral DMSA with transdermal DMPS? Maybe it would make more sense to compare oral DMPS with transdermal DMPS. I would think that comparing the Cutler protocol on DMPS with transdermal DMPS would make more sense. If children have been tried on oral DMPS and transdermal DMPS, which proved more helpful? Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 We saw some nice improvements for the first few rounds of DMSA but when we added ALA he regressed horribly and it took almost a year to bring him back. After he had problems with the ALA, did you do any rounds of DMSA or DMPS alone? Hunter's doing incredible with the TD DMPS and continues to make gains. That's great to hear. Can you give some more specific information about his progress with TD-DMPS? Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 In a message dated 12/2/2004 9:53:37 PM Central Standard Time, KKSOKOLSKI@... writes: <<Can you compare oral DMSA with transdermal DMPS? Maybe it would make more sense to compare oral DMPS with transdermal DMPS. I would think that comparing the Cutler protocol on DMPS with transdermal DMPS would make more sense.>> Very good point since the chelators work differently. DMPS is known for pulling mercury better in general so the simple switch from DMSA to DMPS, no matter the way it's administered, may be the main difference. I know when we switched my son from DMSA to IV DMPS his urine tests showed about 5-10 times the amount of mercury that the DMSA ones showed. Of course, the IV is a much more concentrated dose but I do believe the change in chelator played a part in that as well. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 In a message dated 12/3/2004 1:04:22 A.M. Eastern Standard Time, momtocd@... writes: After he had problems with the ALA, did you do any rounds of DMSA or DMPS alone? I tried several different times with Andy's protocol but we never saw an improvement again. I think it probably caused major yeast overgrowth so made things worse since he's always been a major yeast kid. His gains with TD DMPS included becoming dry at night (within days), chattering up a storm, spelling new words verbally, more awareness, and gaining more independence. Little things like standing up to pee and not doing what he's told (normal behavior). Hunter's almost 7 and doesn't respond to much of anything for any amount of time. We've tried everything through the years and this has been the number one intervention so far. I believe that if we can all stay the course and chelate without stopping, that's the key. So many of us have had to stop due to gut bugs and I think if we hadn't, a lot of these kids would be getting better by now. Time will tell I guess ) Jo Pike National Autism Association Phone: 877-NAA-AUTISM Email: Jo@... _http://nationalautismassociation.org/_ (http://nationalautismassociation.org/) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 We are using oral DMPS two days every 8 hours then oral DMPS/ALA for 2 days every 3 hours then oral DMPS every 8 hours again for 2 days. I am seeing much more effect from this than from oral DMSA including more side effects. We are going to do a chelated urine test to see if more mercury is coming out. I have spoken with Andy Cutler. He believes that oral or transdermal DMPS should work however he is concerned about not applying DMPS every 8 hours with transdermal. He would like to know the kinetics of this medication. Also he does not believe giving excess glutathione will provide much benefit. All of this may go against observations however this is what he relayed to me. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Let me clarify two points: I do know the kinetics of the medication adequately, lots of transdermals have been studied quite well and the underlying kinetics of DMPS are well established. This is easy to put together. While glutathione will not increase mercury clearance, it does lead to noticeable TEMPORARY imrpovement in a significant number of kids, and in the transdermal formulation the glutathoine probably is what keeps the DMPS stable against air oxidation. Andy . . . . . . . > We are using oral DMPS two days every 8 hours then oral DMPS/ALA for 2 days > every 3 hours then oral DMPS every 8 hours again for 2 days. I am seeing much > more effect from this than from oral DMSA including more side effects. We are > going to do a chelated urine test to see if more mercury is coming out. I have > spoken with Andy Cutler. He believes that oral or transdermal DMPS should work > however he is concerned about not applying DMPS every 8 hours with > transdermal. He would like to know the kinetics of this medication. Also he does not > believe giving excess glutathione will provide much benefit. All of this may go > against observations however this is what he relayed to me. > Ken > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 Ken Thanks for this. What you are doing makes sense to me. > We are using oral DMPS two days every 8 hours then oral DMPS/ALA for 2 days > every 3 hours then oral DMPS every 8 hours again for 2 days. I am seeing much > more effect from this than from oral DMSA including more side effects. We are > going to do a chelated urine test to see if more mercury is coming out. I have > spoken with Andy Cutler. He believes that oral or transdermal DMPS should work > however he is concerned about not applying DMPS every 8 hours with > transdermal. He would like to know the kinetics of this medication. Also he does not > believe giving excess glutathione will provide much benefit. All of this may go > against observations however this is what he relayed to me. > Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 This is a new product and so the studies haven't been done. Whether someone is working on it I don't know. > > I wonder why nodbosy has been able to get the kinetics of td-dmps is a secret? > > Date: Sat, 4 Dec 2004 02:21:08 EST > From: KKSOKOLSKI@A... > Subject: Re: Re: Cutler's vs Buttar's protocol > > We are using oral DMPS two days every 8 hours then oral DMPS/ALA for 2 days > every 3 hours then oral DMPS every 8 hours again for 2 days. I am seeing much > more effect from this than from oral DMSA including more side effects. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2004 Report Share Posted December 4, 2004 If it is going to be used on hundreds or thousands of kids, this information needs to be known. The half-life of every prescription drug has to be determined before it can be approved by the FDA and made available for public use. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 Can you give us an idea of your L-glutathione usage history during the Cutler dmsa/la protocol and before/during the Buttar protocol? I assume it is the 48hr Buttar protocol you are using since you haven't stated otherwise. Have you done any tests to look at metal excretion? Thank you. > > > In a message dated 12/2/2004 1:58:31 P.M. Eastern Standard Time, > youngjaem@y... writes: > > Has anyone that have been using Andy Cutler's protocol for a while > have little to no improvement but then switched to Buttar's Td- dmps > protocol and seen improvement or vice versa? > > > We saw some nice improvements for the first few rounds of DMSA but when we > added ALA he regressed horribly and it took almost a year to bring him back. > Our doctor at the time said he should never use ALA again. Hunter's doing > incredible with the TD DMPS and continues to make gains. I'm thrilled that we've > finally found something he can tolerate and that we can continue without any > interruptions because of gut bugs (the ThreeLac has been the best thing that > ever happened to him when it comes to yeast). We've been at it 4 months now > and the major stimming from the beginning is almost gone and he's sleeping > better. > > Jo Pike > National Autism Association > Phone: 877-NAA-AUTISM > Email: Jo@N... > _http://nationalautismassociation.org/_ > (http://nationalautismassociation.org/) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2004 Report Share Posted December 5, 2004 > > Has anyone that have been using Andy Cutler's protocol for a > while > > have little to no improvement but then switched to Buttar's Td- > dmps > > protocol and seen improvement or vice versa? Good question, I hope everyone will answer it. > > We saw some nice improvements for the first few rounds of DMSA > but when we > > added ALA he regressed horribly and it took almost a year to bring > him back. > > Our doctor at the time said he should never use ALA again. For practical purposes I agree. While there are many arguments about probabilities, what it might have been, etc. there is a substantial (as in I'd guess 95%+) probability it really was ALA use that caused the problem and the risk is way too high to try it again any time soon. In fact, this is exactly the kind of situation where I do think it makes sense to try TD-DMPS and anything else reasonable. > Hunter's doing > > incredible with the TD DMPS and continues to make gains. I'm > > thrilled that we've finally found something he can tolerate So am I. While there is a lot of emotion directed at the arguments about chelation protocols and which one is right, the only real issue is how our limited technical understanding can be applied to helping unfortunate children like this get better. The high level of emotion (which goes along with a very low level of reason and analysis) in this debate only detracts from this goal. > and that we can continue without any > > interruptions because of gut bugs (the ThreeLac has been the best > thing that > > ever happened to him when it comes to yeast). We've been at it 4 > months now > > and the major stimming from the beginning is almost gone and he's > sleeping > > better. This pattern, increased problems, followed in some but not all cases by later improvement, is what happens with redistribution due to kinetically inappropriate chelation protocols. The uniformity of these reports is what convinces me you need 8 hour dosing with TD-DMPS. > > Jo Pike > > National Autism Association > > Phone: 877-NAA-AUTISM > > Email: Jo@N... > > _http://nationalautismassociation.org/_ > > (http://nationalautismassociation.org/) > > > > > > Quote Link to comment Share on other sites More sharing options...
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