Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 I share your good feelings about not doing the challenge test. However, the td you are using still is to be applied every 4 hours, just like the oral. Some kids do fine with 8 hour dosing all the way to recovery and some do fine with 8 hour dosing until one time when they don't do fine. Pass success is not a predictor of future success. It won't matter much who you have respect for if your child recovers or regresses......do what is right for your child. [ ] TD vs. Oral chelation - Andy? I have a question for Andy, hopefully it hasn't been asked. The question is: What is the absorption rate of TD DMSA? Does anyone know? Does it differ from pharmacy to pharmacy? Does the clock of " half-life " begin to toll upon absorption or some other factor? Could it be that TD is an ok way to go, perhaps even a preferred way to go when yeast is a big issue? I recently started chelating my son. I had a prescription for chelators for a long time before I started. I was conflicted because my understanding was that Andy said that oral is the way to go and my doctor had prescribed an oral challenge dose and TD DMSA. I have a lot of respect for my doctor, we began seeing results when we started with him. He ordered GFCF and numerous supplements. I have a lot of respect for Andy, every thing he says seems so logical. And, Andy and I are both registered patent agents, so I feel some kinship there. Because I had already bought the TD DMSA, I finally broke down and decided to use it. (every 8 hours, 3 days on 11 days off) I decided not to do the challenge dose, because as far as I could tell it would serve no purpose. (Sure, I'm curious, but being curious about what may be getting dropped isn't sufficient reason in my opinon to do a potentially dangerous challenge dose.) My son showed immediate improvement while chelating. Much more interactive, better eye contact, better articulation, everything seemingly better. (Mind you, he was very, very high functioning before we began chelating, in fact he was to the point that some other moms in my support group were begining to question that he was ever really on the spectrum, sound familiar to anyone?) The improvements while chelating were very apparent the first 2 rounds. We are on the third round, and while we see nothing as striking, he still seems to be more " on " . HOwever, it did seem that we kicked up yeast, and the fear of yeast was the concern my doctor expressed with an oral DMSA protocol. Though, he said he would prescribe low dose oral if that's what I wanted. And, that I didn't want to do the challenge doses was ok with him, too. So, I think I have a good doctor because he seems to see the grey areas and be willing to work with me on what protocol feels right to me. Parents in my local support group have explained to me that chelation is one area where very knowledgable people don't agree at all, and also don't see any grey areas. For historical reasons, perhaps, there is emotional involvement by the experts that prevent some of them from seeing any validity in alternate views. That's what was explained to me me, I don't know if it is true and I certainly don't intend to start anything here. I just want to express how much angst is involved in making a decision to start chelation when the views are so varying and different. I know me, and I seriously doubt my ability to do four hour dosing of an oral chelator all night for my son. It may be that the oral route is the best way to go, but so far we are seeing very good results with the TD to the point that I regret dragging my feet to get started. But, that foot dragging also prevented us from doing a challenge dose, and I feel really good about not doing a challenge dose. How about a hybrid protocol, oral during the day and TD at night? I got the yeast under control, I think, maybe I could start oral now, too? Sorry this post got so long, to those of you still reading... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 > Though, he said he would prescribe low dose oral if that's > what I wanted. And, that I didn't want to do the challenge doses was > ok with him, too. So, I think I have a good doctor because he seems > to see the grey areas and be willing to work with me on what protocol > feels right to me. Yay for your doctor! Sounds like you have a good one. > I know me, and I seriously doubt my ability to do four hour dosing of > an oral chelator all night for my son. You know that TD-DMSA should be applied every 4 hours, just like oral? I'm currently doing TD lithium and LDN in a cream, and or me the TD stuff is so much more of a pain to do -- maybe because my son despises creams of any sort. But oral chelators he swallows down in his sleep no problem. Unfortunately you can't use oral and TD in the same round because of unknown absorption rates. Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 I have read that yeast is a problem with oral and td. Either way dmsa kicks up yeast due to lower white cells and pulling metals through the gut. No matter what way you get the dmsa into the patient. I currently dose dmsa orally every four hours for both my kids and myself. The sleep loss is made up for in daytime life quality but I do completely understand the sleep lose thingy. If we don't give dmsa every four hours we see side effects. We misses a dose once and it went 6 hours...and boy was my kid miserable. So it is luck that the 8 hours is working for you. I would still be cautious about that though. You may see even better improvements on 4 hour..who knows. I know that there are a certain number of doses per round that should be given..usually it is like 20 or something. If it's given every four hours. An 8 hour protocol would not give us very many doses. I do remember some archives on onibasu in regards to td usage, and half life. dmsa is four hours no matter whether oral or td. I do know that td only last so long and get weaker the longer you have had it after it's mixed. Same with premixing oral into a liquid. It must be used up in a relatively reasonable time. I don't think there is anything wrong with td. And for some this may be the best for them. I just could not find anything definitive on how much is actually absorbed. Couldn't be sure my kid would get the same dose every time. But td dose work. If you are considering a four hour at night, it does get easier. My son doesn't even wake up anymore. He just sits up on my command, down the hatch, slugs some water and passes out. He doesn't even remember it. He shows no signs of fatigue the next day. As for me, you can get to bed early and have a spouse do the midnight dose, then you do the 4 am dose. Or if you do the midnight and 4am dose, they get up at 8am and dose while you sleep in a bit. This works well for us. We also have naptime on round weekends. Where everyone takes a quiet time during the afternoon to recoup. It does get easier though. We also chelate everyone at the same time and not every weekend. So it is only two weekends a month that we are interupting sleep. Just some thoughts that might help. You were rigth to skip the challenge. Useless and dangerous. > > I have a question for Andy, hopefully it hasn't been asked. > > The question is: What is the absorption rate of TD DMSA? Does anyone > know? Does it differ from pharmacy to pharmacy? Does the clock > of " half-life " begin to toll upon absorption or some other factor? > Could it be that TD is an ok way to go, perhaps even a preferred way > to go when yeast is a big issue? > > I recently started chelating my son. I had a prescription for > chelators for a long time before I started. I was conflicted because > my understanding was that Andy said that oral is the way to go and my > doctor had prescribed an oral challenge dose and TD DMSA. > > I have a lot of respect for my doctor, we began seeing results when we > started with him. He ordered GFCF and numerous supplements. I have a > lot of respect for Andy, every thing he says seems so logical. And, > Andy and I are both registered patent agents, so I feel some kinship > there. > > Because I had already bought the TD DMSA, I finally broke down and > decided to use it. (every 8 hours, 3 days on 11 days off) I decided > not to do the challenge dose, because as far as I could tell it would > serve no purpose. (Sure, I'm curious, but being curious about what > may be getting dropped isn't sufficient reason in my opinon to do a > potentially dangerous challenge dose.) > > My son showed immediate improvement while chelating. Much more > interactive, better eye contact, better articulation, everything > seemingly better. (Mind you, he was very, very high functioning before > we began chelating, in fact he was to the point that some other moms > in my support group were begining to question that he was ever really > on the spectrum, sound familiar to anyone?) The improvements while > chelating were very apparent the first 2 rounds. We are on the third > round, and while we see nothing as striking, he still seems to be > more " on " . HOwever, it did seem that we kicked up yeast, and the fear > of yeast was the concern my doctor expressed with an oral DMSA > protocol. Though, he said he would prescribe low dose oral if that's > what I wanted. And, that I didn't want to do the challenge doses was > ok with him, too. So, I think I have a good doctor because he seems > to see the grey areas and be willing to work with me on what protocol > feels right to me. > > Parents in my local support group have explained to me that chelation > is one area where very knowledgable people don't agree at all, and > also don't see any grey areas. For historical reasons, perhaps, there > is emotional involvement by the experts that prevent some of them from > seeing any validity in alternate views. That's what was explained to > me me, I don't know if it is true and I certainly don't intend to > start anything here. I just want to express how much angst is > involved in making a decision to start chelation when the views are so > varying and different. > > I know me, and I seriously doubt my ability to do four hour dosing of > an oral chelator all night for my son. It may be that the oral route > is the best way to go, but so far we are seeing very good results with > the TD to the point that I regret dragging my feet to get started. > But, that foot dragging also prevented us from doing a challenge dose, > and I feel really good about not doing a challenge dose. > > How about a hybrid protocol, oral during the day and TD at night? I > got the yeast under control, I think, maybe I could start oral now, > too? > > Sorry this post got so long, to those of you still reading... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Maybe these old posts will help provide some information on why oral is preferred. And help you decide if you wish to stick with td. what Andy says about td-dmsa: /message/150225 http://onibasu.com/archives/am/154063.html This is on the stability of td: http://onibasu.com/archives/am/73640.html this post provides some information on glutathione: http://onibasu.com/archives/am/122629.html Effectiveness, and pharmacy quality of td dmsa: http://onibasu.com/archives/am/133901.html > > I have a question for Andy, hopefully it hasn't been asked. > > The question is: What is the absorption rate of TD DMSA? Does anyone > know? Does it differ from pharmacy to pharmacy? Does the clock > of " half-life " begin to toll upon absorption or some other factor? > Could it be that TD is an ok way to go, perhaps even a preferred way > to go when yeast is a big issue? > > I recently started chelating my son. I had a prescription for > chelators for a long time before I started. I was conflicted because > my understanding was that Andy said that oral is the way to go and my > doctor had prescribed an oral challenge dose and TD DMSA. > > I have a lot of respect for my doctor, we began seeing results when we > started with him. He ordered GFCF and numerous supplements. I have a > lot of respect for Andy, every thing he says seems so logical. And, > Andy and I are both registered patent agents, so I feel some kinship > there. > > Because I had already bought the TD DMSA, I finally broke down and > decided to use it. (every 8 hours, 3 days on 11 days off) I decided > not to do the challenge dose, because as far as I could tell it would > serve no purpose. (Sure, I'm curious, but being curious about what > may be getting dropped isn't sufficient reason in my opinon to do a > potentially dangerous challenge dose.) > > My son showed immediate improvement while chelating. Much more > interactive, better eye contact, better articulation, everything > seemingly better. (Mind you, he was very, very high functioning before > we began chelating, in fact he was to the point that some other moms > in my support group were begining to question that he was ever really > on the spectrum, sound familiar to anyone?) The improvements while > chelating were very apparent the first 2 rounds. We are on the third > round, and while we see nothing as striking, he still seems to be > more " on " . HOwever, it did seem that we kicked up yeast, and the fear > of yeast was the concern my doctor expressed with an oral DMSA > protocol. Though, he said he would prescribe low dose oral if that's > what I wanted. And, that I didn't want to do the challenge doses was > ok with him, too. So, I think I have a good doctor because he seems > to see the grey areas and be willing to work with me on what protocol > feels right to me. > > Parents in my local support group have explained to me that chelation > is one area where very knowledgable people don't agree at all, and > also don't see any grey areas. For historical reasons, perhaps, there > is emotional involvement by the experts that prevent some of them from > seeing any validity in alternate views. That's what was explained to > me me, I don't know if it is true and I certainly don't intend to > start anything here. I just want to express how much angst is > involved in making a decision to start chelation when the views are so > varying and different. > > I know me, and I seriously doubt my ability to do four hour dosing of > an oral chelator all night for my son. It may be that the oral route > is the best way to go, but so far we are seeing very good results with > the TD to the point that I regret dragging my feet to get started. > But, that foot dragging also prevented us from doing a challenge dose, > and I feel really good about not doing a challenge dose. > > How about a hybrid protocol, oral during the day and TD at night? I > got the yeast under control, I think, maybe I could start oral now, > too? > > Sorry this post got so long, to those of you still reading... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 > Unfortunately you can't use oral and TD in the same round because of > unknown absorption rates. > SEE? That's my point. How does anyone know what the dosing schedule should be for TD given the absorption rates are an unknown? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 > SEE? That's my point. How does anyone know what the dosing schedule > should be for TD given the absorption rates are an unknown? Well, because *some chelator is getting in, and so more chelator will have to be given 3 hrs later for ALA and 4 hrs later for DMSA. At the longest. So even if the chelator is absorbed over a longer period of time than the oral, you'd still have to follow up with more at the half-life. The problem with switching from oral to TD during the same round is that since we don't know how much TD gets absorbed at all, there's no way to keep the *amount of chelator relatively constant in the bloodstream. You'd be comparing apples to oranges. What I'm trying to say is that there's a difference between how long it takes the chelator to be absorbed, and how much of it is absorbed. Does that help? Nell Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 > > Unfortunately you can't use oral and TD in the same round because of > > unknown absorption rates. > > > Just for clarification... Not knowing how absorption of oral and TD compare means that you don't know what dose of each to use to keep the dose consistent. If the dose isn't consistent then there will be lots of redistribution during the round. > > SEE? That's my point. How does anyone know what the dosing schedule > should be for TD given the absorption rates are an unknown? > The dosing schedule, that is how many hours between doses, should be the same for oral or TD because the half life of the drug is the same no matter how it is administered. J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Thanks for digging up these posts for me. I think all of us have learned not to blindly believe anyone about anything in regards to our kids, as many of us think doing so got us into this mess in the first place. My intuition told me not to get the shots, and I didn't listen. My intuition is telling me that, right now, what we are doing for my son is acceptable. We may change it up later, but for now, I am confident I am not causing harm. It may be that we have the luxury of barely being on the spectrum at this point, and what we are doing will get us off the spectrum where it might not another child. I am capable of understanding all the chemistry, eventually, but I can't afford the time to do so right now and that's ok because my intution isn't keeping em up nights. So, my point is that I hope other parents will listen to their respective intuitions for their own kids. > > > > I have a question for Andy, hopefully it hasn't been asked. > > > > The question is: What is the absorption rate of TD DMSA? Does > anyone > > know? Does it differ from pharmacy to pharmacy? Does the clock > > of " half-life " begin to toll upon absorption or some other > factor? > > Could it be that TD is an ok way to go, perhaps even a preferred > way > > to go when yeast is a big issue? > > > > I recently started chelating my son. I had a prescription for > > chelators for a long time before I started. I was conflicted > because > > my understanding was that Andy said that oral is the way to go and > my > > doctor had prescribed an oral challenge dose and TD DMSA. > > > > I have a lot of respect for my doctor, we began seeing results > when we > > started with him. He ordered GFCF and numerous supplements. I > have a > > lot of respect for Andy, every thing he says seems so logical. > And, > > Andy and I are both registered patent agents, so I feel some > kinship > > there. > > > > Because I had already bought the TD DMSA, I finally broke down and > > decided to use it. (every 8 hours, 3 days on 11 days off) I > decided > > not to do the challenge dose, because as far as I could tell it > would > > serve no purpose. (Sure, I'm curious, but being curious about > what > > may be getting dropped isn't sufficient reason in my opinon to do > a > > potentially dangerous challenge dose.) > > > > My son showed immediate improvement while chelating. Much more > > interactive, better eye contact, better articulation, everything > > seemingly better. (Mind you, he was very, very high functioning > before > > we began chelating, in fact he was to the point that some other > moms > > in my support group were begining to question that he was ever > really > > on the spectrum, sound familiar to anyone?) The improvements > while > > chelating were very apparent the first 2 rounds. We are on the > third > > round, and while we see nothing as striking, he still seems to be > > more " on " . HOwever, it did seem that we kicked up yeast, and the > fear > > of yeast was the concern my doctor expressed with an oral DMSA > > protocol. Though, he said he would prescribe low dose oral if > that's > > what I wanted. And, that I didn't want to do the challenge doses > was > > ok with him, too. So, I think I have a good doctor because he > seems > > to see the grey areas and be willing to work with me on what > protocol > > feels right to me. > > > > Parents in my local support group have explained to me that > chelation > > is one area where very knowledgable people don't agree at all, and > > also don't see any grey areas. For historical reasons, perhaps, > there > > is emotional involvement by the experts that prevent some of them > from > > seeing any validity in alternate views. That's what was explained > to > > me me, I don't know if it is true and I certainly don't intend to > > start anything here. I just want to express how much angst is > > involved in making a decision to start chelation when the views > are so > > varying and different. > > > > I know me, and I seriously doubt my ability to do four hour dosing > of > > an oral chelator all night for my son. It may be that the oral > route > > is the best way to go, but so far we are seeing very good results > with > > the TD to the point that I regret dragging my feet to get > started. > > But, that foot dragging also prevented us from doing a challenge > dose, > > and I feel really good about not doing a challenge dose. > > > > How about a hybrid protocol, oral during the day and TD at night? > I > > got the yeast under control, I think, maybe I could start oral > now, > > too? > > > > Sorry this post got so long, to those of you still reading... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2006 Report Share Posted November 7, 2006 > I think all of us have learned not to blindly believe anyone about > anything in regards to our kids, as many of us think doing so got us > into this mess in the first place. You said it. > My intuition is telling me that, right now, what we are doing for my > son is acceptable. My suggestion would be to spend some time digging around in Moria's files, both the parent reports and the Andy posts, so that you can supplement your intuition with both understanding of the mechanics involved and lots of stories about what's happened when parents have tried various protocols. It does take awhile for all the info on this list to sink in, and you don't have to get all that far into the chemistry for it to start making sense. The basic idea driving Andy's protocol is that it is the least risky protocol that works. Nell Quote Link to comment Share on other sites More sharing options...
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