Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 Robin, you are going through what so many others have. I investigated the IV glut thing very much because I'm friends with Kane and she's really the one who started it. I love , but I'm scared of IV glut. She thinks I'm very silly, but then she knows I'm mostly scared of everything. My little boy has been through every aspect of her suggested protocols but this one -- I just dont' have the guts. BUT, I'm also the chicken who has never done DMSA. So why listen to me? I know Ann Lovell's child has done very well on it. And there's a woman " Henry's Mom " whose child has done great. I know some who got v. hyper and the parents were too worried to continue. It's just one of those things that is hard to make a decision about. If he's already on it, then you probably know best whether it is helping or not! I will tell you that my little boy (who right now I can hear playing with his sister and dad upstairs, laughing and talking and being so normal it's hard to imagine just how autistic he is/was) has low glutathione and just shakes her head at me and wonders why I don't do the IV's. I just can't!!! Maybe I will someday. Nicky just gets better and better anyway, even with his low glutathione levels. Have you seen any improvement? marti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 IV glutathione is dangerous. I have yet to have any significant number of people give a clear description of substantial improvements seen from it. IV glutathione is never indicated in any autiistic child. Personally I consider a doctor pushing this to be a reason to go elsewhere. 100% or very close of all autistic children have low measured glutathione. However the amount injected isn't singificant compared to a week's production. What is needed is more antioxcidants to spare and regenerate the glutathione the kid already makes in vast quantities, not to dribble a bit extra in. > Our DAN! doctor has just started giving my son IV glathione. First > round was in a 300 mg dose and the following month in a 600 mg dose. > I recently read on a support group web site about this can be > dangerous and certain children get reactions to it. We have done > extensive testing and my son's detoxification system is a total mess > therefore he needs the glutathione. This is not correct and indicates a profound lack of understanding of physiology, metabolism and what the testts mean. > What kind of reactions are bad? Permanent horrible worsening of existing symptoms, or permanment horrible new symptoms. E. g. extreme OCD, ridiculous hyperactivity, dozens of new food sensitivities. > He gets a little hyper for a couple days following but I was under > the assumption that it was some of the metals coming out? No. Glutathione injections do not remove any additional metals. They just stir up the metals already in him and slam a lot of them into his brain and liver. > Any comments? Robin PS to everyone - I really DO welcome both positive and negative glutathione stories. If there were more information available it might be possible to say something more useful about when it might help, how likely it is to help, how likely it is to cause problems, what real indications are, etc. . . . . . .. . . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 If you have done the iv glutathione is there anything you can do to fix the damage that may have been done? Bill > IV glutathione is dangerous. I have yet to have any significant > number of people give a clear description of substantial improvements > seen from it. > > IV glutathione is never indicated in any autiistic child. Personally > I consider a doctor pushing this to be a reason to go elsewhere. > > 100% or very close of all autistic children have low measured > glutathione. However the amount injected isn't singificant compared > to a week's production. What is needed is more antioxcidants to spare > and regenerate the glutathione the kid already makes in vast > quantities, not to dribble a bit extra in. > > > Our DAN! doctor has just started giving my son IV glathione. First > > round was in a 300 mg dose and the following month in a 600 mg dose. > > I recently read on a support group web site about this can be > > dangerous and certain children get reactions to it. We have done > > extensive testing and my son's detoxification system is a total mess > > therefore he needs the glutathione. > > This is not correct and indicates a profound lack of understanding of > physiology, metabolism and what the testts mean. > > > What kind of reactions are bad? > > Permanent horrible worsening of existing symptoms, or permanment > horrible new symptoms. > > E. g. extreme OCD, ridiculous hyperactivity, dozens of new food > sensitivities. > > > He gets a little hyper for a couple days following but I was under > > the assumption that it was some of the metals coming out? > > No. Glutathione injections do not remove any additional metals. They > just stir up the metals already in him and slam a lot of them into his > brain and liver. > > > Any comments? Robin > > PS to everyone - I really DO welcome both positive and negative > glutathione stories. If there were more information available it > might be possible to say something more useful about when it might > help, how likely it is to help, how likely it is to cause problems, > what real indications are, etc. > > . . . . . .. . . . . . . .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2003 Report Share Posted July 2, 2003 > If you have done the iv glutathione is there anything you can do to > fix the damage that may have been done? Not that I know of, though chelating a real whole lot for a long time might help. The damage is readily apparent if it happens. Andy . . . . . . .. . . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 >This type of treatment may be a bit of a shot in the dark like a lot of treatments, helping a few who really need it, doing nothing for most, and harming some. If we only knew exactly what was going on with a given child, we might be able to choose treatments more rationally. > Ken Sokolski Ken hit the nail on the head here. What we need to do is get more detailed and dispassionate reporting of what happens, both good and bad, with assorted treatments and who it happens to so we can try to figure out the proper " indications and contraindications " in doctorspeak, which is how to tell which kids will benefit and which will get hurt so there is a rational basis to prescribe. Andy. . . .. . . . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 > Hi Andy, > I agree with you and understand your reasoning however I wonder if benefits from I.V. glutathione reported by Bradstreet, Kartzinel and others have to do with dopamine activation and not with increasing body stores of glutathione. Well, they HAVE to be due to something other than increased body stores since an IV doesn't increase them significantly. > If you look up research on Parkinson's Disease, I.V. glutathione is being used to boost dopamine and improvements in motor aspects of the illness have been noted following an infusion. Yup. And if you talk to health care providers who actually have used this treatment they do NOT see what Permutter reports happening with their patients. >Since autism is also associated with abnormalities in dopamine, this might be the mechanism of some transient improvements noted in autistic patients. Could be. In which case DOPA, selegiline and bromocriptine should be great treatments for at least that subset of auties who respond to glutathione injections. Anyone know if any of these have been tried? >I have no knowledge regarding the possible dangers of such a treatment. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 > I don't know if any of these have been tried. Mostly what has been tried are > dopamine blockers such as risperidone, olanzapine, and quetiapine. > Ken Yes, and since they are often beneficial it does make one wonder about things that increase dopamine. Though I am not trying to take sides on that particular theory of what the glutathione might be doing. An Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 My son reacted negatively to the IV, and I am not certain that there was anything in particular that made the doc prescribe it on the first visit. My son was hyper for 2-3 weeks, and developed senstivity to tags in clothing. The hyperactivity is now going away after 2 rounds, but the tag intolerance is not. It bothered me even more because the doc said my son would be much calmer for the next week do to the IV. They must do it all the time because the IV hangers are in their patient rooms. Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2003 Report Share Posted July 3, 2003 I received IV glutathione without an adverse reaction and a very noticeable improvement that seemed linked to it. It isn't clear whether I got the improvement from the glutathione or the vitamins, but if I remember correctly the IV was only C, B complex and glutathione. I was already taking C and B orally anyway. I had the IV beween my first and second round of chelation. After my first round of chelation with DMSA, I felt no different, but the metallic taste that had gotten really irritating went away and I had a goiter that shrank noticeably. I chelated all wrong by the way, with 100mg DMSA three times a day while I still had one amalgam in my mouth. The Thursday before I started round two, I got the IV. I felt much more tired than usual that day and back to my usual level of tiredness the next day. On Saturday evening I started round 2 with 100mg dmsa. About one hour after that dose about 50% of the tiredness and general crappy feeling that I had been feeling for the previous 3-5 years went away. It was like someone flipped on a switch. It did occur to me that the improvement was just from the DMSA, but if it were I think I would have had that improvement on any of the doses I took during the first round. I continued to get the IV's 4 to 5 more times. I never got that much improvement from them again. They continued to make me quite tired the day I received them. It only made a very noticeable improvment in conjunction with the DMSA that 1st time. A few rounds later I started chelating with DMSA on Andy's schedule, but I didn't get that last amalgam out for a few more months. That 50% improvement was pretty much permanent until I started ALA 6 months later. The ALA caused me to decline right back to where I was before taking DMSA. I eventually added enough liver support to be able to tolerate ALA and regained the improvement. I am not recommending that anyone do what I did. I only wanted to report my experience. I never knew Andy advised against IV glutathione when I did it. I knew that he advised not to chelate with an amalgam in, but I couldn't stand that metallic taste. I couldn't even eat and I felt like I had to do something. When I had such an improvement from chelating and it continued to make me feel better, I couldn't stop. I was still in the process of investigating what to do with that last amalgam since it was a tricky dental situation. I sure wish the other 50% improvement would happen as fast as the first 50%. Trudeau Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 Oral absorption of vitamin C is limited. So it depends a lot on how much C was in the iv. You can only get a body inventory of 2 or 3 grams from oral dosing so if you got 20 or 50 grams of it you may well have benefitted from the C. Almost everyone who gets a lot of vitamin C iv feels better from it. > I received IV glutathione without an adverse reaction and a very > noticeable improvement that seemed linked to it. It isn't clear > whether I got the improvement from the glutathione or the vitamins, > but if I remember correctly the IV was only C, B complex and > glutathione. I was already taking C and B orally anyway. > > I had the IV beween my first and second round of chelation. After my > first round of chelation with DMSA, I felt no different, but the > metallic taste that had gotten really irritating went away and I had > a goiter that shrank noticeably. I chelated all wrong by the way, > with 100mg DMSA three times a day while I still had one amalgam in my > mouth. > > The Thursday before I started round two, I got the IV. I felt much > more tired than usual that day and back to my usual level of > tiredness the next day. On Saturday evening I started round 2 with > 100mg dmsa. About one hour after that dose about 50% of the > tiredness and general crappy feeling that I had been feeling for the > previous 3-5 years went away. It was like someone flipped on a > switch. > > It did occur to me that the improvement was just from the DMSA, but > if it were I think I would have had that improvement on any of the > doses I took during the first round. > > I continued to get the IV's 4 to 5 more times. I never got that much > improvement from them again. They continued to make me quite tired > the day I received them. It only made a very noticeable improvment > in conjunction with the DMSA that 1st time. > > A few rounds later I started chelating with DMSA on Andy's schedule, > but I didn't get that last amalgam out for a few more months. > > That 50% improvement was pretty much permanent until I started ALA 6 > months later. The ALA caused me to decline right back to where I was > before taking DMSA. I eventually added enough liver support to be > able to tolerate ALA and regained the improvement. > > I am not recommending that anyone do what I did. I only wanted to > report my experience. I never knew Andy advised against IV > glutathione when I did it. I knew that he advised not to chelate > with an amalgam in, but I couldn't stand that metallic taste. I > couldn't even eat and I felt like I had to do something. When I had > such an improvement from chelating and it continued to make me feel > better, I couldn't stop. I was still in the process of investigating > what to do with that last amalgam since it was a tricky dental > situation. > > I sure wish the other 50% improvement would happen as fast as the > first 50%. > > Juli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2003 Report Share Posted July 4, 2003 > Oral absorption of vitamin C is limited. So it depends a lot on how > much C was in the iv. You can only get a body inventory of 2 or 3 > grams from oral dosing so if you got 20 or 50 grams of it you may well > have benefitted from the C. Almost everyone who gets a lot of vitamin > C iv feels better from it. It really isn't clear to me what I benefited from, but I assumed it wasn't the C because I thought I would feel better right away from that, not later. I forgot that there was also magnesium in the IV, which I was also taking lots of orally for years before the IV. Whatever it was wasn't a direct benefit. I felt worse the day of the IV then two days later when I chelated having had the IV seemed to potentiate the chelation. Trudeau Quote Link to comment Share on other sites More sharing options...
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