Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 It might help us give you some things to look at if you said what specific chelation medicine, dosage and schedule you were using and if you changed anything in early June (since you stated he was doing well until that time). Did you add ALA at that time? or something else new? > By mid June he started changing, not able to focus and not as cooperative. > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were > coming out and the his nutrient level was fine. Did the doctor run tests to check mineral levels? liver and kidney function? Is there a particular time of day your son's symptoms become worse? > >>He now takes > >C 1000mg calcium 600mg Magnesium 600mg > E 400iu Flax seed 1000mg FOS 750 mg > CQ10 200 mg. Enzmaid 3 Culturelle 5 > primal defense 2 Transfer Factor 3 codliver 3 > zinc 100 mg p5p 150 mg Bio-cidin 6 drops > Are any of these new since June? Possible allergy or negative reaction to any of these? Three that stick out to me are the Culturelle -- isn't that made from milk products (problem if your kid can't handle milk) and FOS since it feeds some pathogenic bacteria and could be leading a pathogen to grow out of control IF your son has one of the ones FOS feeds. Also the zinc you listed is an awfully high dosage for your child's size. Sometimes too much zinc can cause problems like hyperactivity and volatility. Not knowing everything you've been through or done, my gut feeling is to take him off of everything for a few weeks and then add things back in gradually to make sure he's not reacting to anything. > > My Doctor prescribed Nystatin 9/1/01(30 days), then 10/01/01 Diflucan (30 > days) and then 12/01/01 told me he had clostriddia and wanted to give him > Vancomyicin. I did not give him Vancomyicin. I've been rotating > anti-fungals such as garlic, ginger, olive leaf etc. If he's been on straight anti-fungals for quite awhile, perhaps taking a break might help his body catch up. Sometimes too much cleansing can be hard on the body and it just needs a rest. Sometimes dropping everything you're doing and starting over again with something totally different can turn things around. In most cases, there is not long-term damage or hopeless immune system problems though sometimes it seems like it. I'm sure you'll get some good ideas from the folks on this list who have been through similar things if you'll try to remember and post as much as you can think of that could be pertinent. Best wishes, Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 What's your son's age and weight? What schedule and dosage did you have your son on for chelation? S On Mon, 07 January 2002, coakley948@... wrote: > > <html><body> > > > <tt> > My son was flying high and now he has crashed and is still in the wreckage.<BR> > <BR> > My son started chelation 1/04/01 & nbsp; with Dr. Hicks (New Dan Doc.in Chicago <BR> > using Dan protocal). & nbsp; He was a mess for the first 21/2 months and then <BR> > between 3/20-6/05/01 & nbsp; he was doing excellent. & nbsp; Great eye contact, focused and <BR> > learning at a rapid rate. & nbsp; He was taking at the time<BR> > Nystatin 1/1/01-05/01/01<BR> > Calcium 900mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nb\ sp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; <BR> > Magneseium 150 mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; <BR> > Zinc 100 mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;\ & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; <BR> > E 1000iu<BR> > C 3000mg<BR> > Flax seed<BR> > 3 cod liver<BR> > Culturelle<BR> > Multi vitamin<BR> > By mid June he started changing, not able to focus and not as cooperative. & nbsp; <BR> > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were <BR> > coming out and the his nutrient level was fine. & nbsp; By 9/1/01 my son was crying <BR> > and totally out of control. & nbsp; I stopped chelation and started rotating anti <BR> > fungals. & nbsp; These are the tests and results that are out of range.<BR> > Great Smokies<BR> > & nbsp; & nbsp; & nbsp; Amino Acid- Essentials are low, except Taurine and Arginine<BR> > & nbsp; & nbsp; & nbsp; Comp. Digestive Stool Anal.- Haemolytic Escherichia coli & nbsp; 2+<BR> > Great Plains & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & n\ bsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Range<BR> > & nbsp; & nbsp; & nbsp; 3-indoleacetic & nbsp; 41.43 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 0-10<BR> > & nbsp; & nbsp; & nbsp; kynurenic & nbsp; & nbsp; 5.12 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 0-2<BR> > & nbsp; & nbsp; & nbsp; suberic 3.44 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbs\ p; & nbsp; & nbsp; 0-2<BR> > & nbsp; & nbsp; & nbsp; ascorbic & nbsp; 3353.77 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 10-200<BR> > & nbsp; & nbsp; & nbsp; succinic & nbsp; 23.54 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 0-20<BR> > & nbsp; & nbsp; & nbsp; citric & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 603.05 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 20-200<BR> > & nbsp; & nbsp; & nbsp; oxalic & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 158 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; 0-100<BR> > <BR> > He now takes<BR> > C 1000mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; calcium & nbsp; & nbsp; 600mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Magnesium & nbsp; 600mg<BR> > E 400iu & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Flax seed & nbsp; 1000mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; FOS & nbsp; 750 mg<BR> > CQ10 200 mg. & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; Enzmaid & nbsp; 3 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & \ nbsp; & nbsp; & nbsp; & nbsp; Culturelle 5<BR> > primal defense 2 & nbsp; & nbsp; & nbsp; Transfer Factor 3 & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; codliver 3<BR> > zinc 100 mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; p5p 150 mg & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp; & nbsp;\ & nbsp; & nbsp; & nbsp; & nbsp; Bio-cidin 6 drops<BR> > <BR> > <BR> > I did IV Glutathione 12/4/01 it helped language, but he still can't focus and <BR> > the stimming and sounds effects are not improving. & nbsp; 1/5/02 started Toueff. & nbsp; <BR> > I've tried alot more supplements but there are too many to list.<BR> > <BR> > My Doctor prescribed Nystatin & nbsp; 9/1/01(30 days), then 10/01/01 Diflucan (30 <BR> > days) and then 12/01/01 told me he had clostriddia and wanted to give him <BR> > Vancomyicin. & nbsp; I did not give him Vancomyicin. & nbsp; I've been rotating <BR> > anti-fungals such as garlic, ginger, olive leaf etc. & nbsp; My Doctor does not have <BR> > the knowledge nor experience to handle me son's issues.<BR> > <BR> > Have I destroyed my son's immune system so that it just can't function? & nbsp; How <BR> > do I get him back on track? & nbsp; What am I doing wrong? & nbsp; & nbsp; <BR> > <BR> > Diane<BR> > Trevor 4 3/4 & nbsp; 48lbs.<BR> > <BR> > <BR> > <BR> > <BR> > <BR> > <BR> > </tt> > > <br> > > <!-- |**|begin egp html banner|**| --> > > <table border=0 cellspacing=0 cellpadding=2> > <tr bgcolor=#FFFFCC> > <td align=center><font size= " -1 " color=#003399><b> Sponsor</b></font></td> > </tr> > <tr bgcolor=#FFFFFF> > <td align=center width=470><a href= " http://rd./M=210672.1513963.3091383.1442549/D=egroupweb/S=1705061\ 616:HM/A=655208/R=0/*http://www.prostateinfo.com/piya " ><img src= " http://us.a1.yimg.com/us.yimg.com/a/as/astrazeneca/a3.gif " width= " 468 " height= " 60 " border= " 0 " ></a></td> > </tr> > <tr><td><img alt= " " width=1 height=1 src= " http://us.adserver./l?M=210672.1513963.3091383.1442549/D=egroupmai\ l/S=1705061616:HM/A=655208/rand=915939536 " ></td></tr> > </table> > > <!-- |**|end egp html banner|**| --> > > > <br> > <tt> > =======================================================<BR> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2002 Report Share Posted January 7, 2002 I dont have any answer but I have a few questions. hopefully it will help others help you coakley948@... wrote: > My son was flying high and now he has crashed and is still in the wreckage. > > My son started chelation 1/04/01 with Dr. Hicks (New Dan Doc.in Chicago > using Dan protocal). He was a mess for the first 21/2 months and then > between 3/20-6/05/01 he was doing excellent. Great eye contact, focused and > learning at a rapid rate. > > By mid June he started changing, not able to focus and not as cooperative. > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were > coming out and the his nutrient level was fine. DId you introduce ALA at this time? > By 9/1/01 my son was crying > and totally out of control. I stopped chelation and started rotating anti > fungals. > I did IV Glutathione 12/4/01 it helped language, but he still can't focus and > the stimming and sounds effects are not improving. 1/5/02 started Toueff. > I've tried alot more supplements but there are too many to list. > Have I destroyed my son's immune system so that it just can't function? How > do I get him back on track? What am I doing wrong? > > Diane > Trevor 4 3/4 48lbs. > If I understand you right you have stopped the chelation, correct? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 It sounds like you need to address all the bacterial infections. Can you get a test to see exactly what the Clostridia will respond too and the ecoli too? My son went through this when he was on too high a dose of DMSA. major regression. We finally got all the yeast, Giardia ans Kleibsiella under control and also took soy out of his diet. he is better now and doing low dose chelation now. Could you tell me what Toueff is? Good luck. it will get better. you havent ruined his immune system. karen w Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Please be so kind as to re-post this with the following relevant information added: administration schedule and dosage for chelators, frequency of administration of vitamins, whether the aminos are in urine or plasma (and what medium any other tests are in) Hair element analysis if you have it, and RBC elements if you have it. He may be a " low sulfur " person. If so he will benefit greatly from being fed a high sulfur diet and sulfury supplements. Dairy, eggs, some beans, broccoli cabbage cauliflower asparagus turnips rutabagas onions and garlic are good dietary sulfur sources. His sulfur level can easily be determined by a laboratory test - plasma cysteine at Great Smokies. If you don't want to do it by test, I'd suggest a few days on a high sulfur diet, a few on a lower sulfur diet, and flip back and forth until you know which one works for him. Andy > My son was flying high and now he has crashed and is still in the wreckage. > > My son started chelation 1/04/01 with Dr. Hicks (New Dan Doc.in Chicago > using Dan protocal). He was a mess for the first 21/2 months and then > between 3/20-6/05/01 he was doing excellent. Great eye contact, focused and > learning at a rapid rate. He was taking at the time > Nystatin 1/1/01-05/01/01 > Calcium 900mg > Magneseium 150 mg > Zinc 100 mg > E 1000iu > C 3000mg > Flax seed > 3 cod liver > Culturelle > Multi vitamin > By mid June he started changing, not able to focus and not as cooperative. > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were > coming out and the his nutrient level was fine. By 9/1/01 my son was crying > and totally out of control. I stopped chelation and started rotating anti > fungals. These are the tests and results that are out of range. > Great Smokies > Amino Acid- Essentials are low, except Taurine and Arginine > Comp. Digestive Stool Anal.- Haemolytic Escherichia coli 2+ > Great Plains Range > 3-indoleacetic 41.43 0-10 > kynurenic 5.12 0-2 > suberic 3.44 0-2 > ascorbic 3353.77 10-200 This is vitamin C. You are feeding it to him so it ought to be high. > succinic 23.54 0-20 > citric 603.05 20-200 > oxalic 158 0-100 > > He now takes > C 1000mg calcium 600mg Magnesium 600mg > E 400iu Flax seed 1000mg FOS 750 mg > CQ10 200 mg. Enzmaid 3 Culturelle 5 > primal defense 2 Transfer Factor 3 codliver 3 > zinc 100 mg p5p 150 mg Bio-cidin 6 drops > > > I did IV Glutathione 12/4/01 it helped language, but he still can't focus and > the stimming and sounds effects are not improving. 1/5/02 started Toueff. > I've tried alot more supplements but there are too many to list. > > My Doctor prescribed Nystatin 9/1/01(30 days), then 10/01/01 Diflucan (30 > days) and then 12/01/01 told me he had clostriddia and wanted to give him > Vancomyicin. I did not give him Vancomyicin. I've been rotating > anti-fungals such as garlic, ginger, olive leaf etc. My Doctor does not have > the knowledge nor experience to handle me son's issues. > > Have I destroyed my son's immune system so that it just can't function? How > do I get him back on track? What am I doing wrong? > > Diane > Trevor 4 3/4 48lbs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi, The FOS could be feeding the clostridium and a few other gut pathogens. This has been reported a few times by parents on this list, I think. I also checked with a local compounding pharmacist. He raved about the wonderfulness of FOS, but one of his assistants confided that there was a small but substantial percentage of clients who had terrible effects from it. Someone recently reported having some trouble with Primal Defense. They mentioned that it contained chlorella. My 2-year-old bottle doesn't have this listed, just oat, barley, kamut(wheat), and alfalfa grasses. I don't know if there is an allergic response to the grass portion of a grain. The probiotic portion of this product looks ok. The phytosterol/sterolins are pretty active compounds. There is another sterol/sterolin product called Moducare that had a really good effect on someone I know with MCS. Normalized seizure activity in response to chemical exposure. It is supposed to have effects on the immune system but none of these " systems " are isolated. I've been playing with beta-sitosterol and my husband with sugar handling problems had a dramatic stop to the insane volumes of liquids he was drinking (and having to pee in the night). Our recyclables went to 1/3. My step daughter with polycystic ovaries had a dramatic decrease in unwanted hair growth. I have no idea what this means for your son, just that these are pretty active compounds and you might want to look further into it. Most companies answer questions. Brands and batches of supplements are not interchangeable. They vary a lot. Any of them might have some food substances which your child is allergic to like the soy in E or the corn(?) in most C, etc. There are some contaminates in many supplements. Most of the vitamins are created not extracted, there is a manufacturing process of many steps. I had a lot of trouble with p5p. When we hit on the right brand, my son did not projectile vomit it and it seemed to help. Before, when I shoppped for minerals I would see the mineral name. Now I have to look at what it's chelated with and the binders. If there were some way to do it, I would check the particle size. We're still playing with all of this and the variations in supplements are hugh. Most relatively healthy people don't notice any of this but someone having problems really needs to take a hard look at all these issues. There's the possible rancidity and mercury contamination issue with some cod liver oils and some kids just can't handle certain oils and fats properly until other things are straightened out. Our experience is that all the supplements and diet changes had effects (for better or worse) on things other than the problem I was working on. I don't have any answers, just things to look at a bit harder. coakley948@... wrote: > My son was flying high and now he has crashed and is still in the wreckage. > > My son started chelation 1/04/01 with Dr. Hicks (New Dan Doc.in Chicago > using Dan protocal). He was a mess for the first 21/2 months and then > between 3/20-6/05/01 he was doing excellent. Great eye contact, focused and > learning at a rapid rate. He was taking at the time > Nystatin 1/1/01-05/01/01 > Calcium 900mg > Magneseium 150 mg > Zinc 100 mg > E 1000iu > C 3000mg > Flax seed > 3 cod liver > Culturelle > Multi vitamin > By mid June he started changing, not able to focus and not as cooperative. > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were > coming out and the his nutrient level was fine. By 9/1/01 my son was crying > and totally out of control. I stopped chelation and started rotating anti > fungals. These are the tests and results that are out of range. > Great Smokies > Amino Acid- Essentials are low, except Taurine and Arginine > Comp. Digestive Stool Anal.- Haemolytic Escherichia coli 2+ > Great Plains Range > 3-indoleacetic 41.43 0-10 > kynurenic 5.12 0-2 > suberic 3.44 0-2 > ascorbic 3353.77 10-200 > succinic 23.54 0-20 > citric 603.05 20-200 > oxalic 158 0-100 > > He now takes > C 1000mg calcium 600mg Magnesium 600mg > E 400iu Flax seed 1000mg FOS 750 mg > CQ10 200 mg. Enzmaid 3 Culturelle 5 > primal defense 2 Transfer Factor 3 codliver 3 > zinc 100 mg p5p 150 mg Bio-cidin 6 drops > > I did IV Glutathione 12/4/01 it helped language, but he still can't focus and > the stimming and sounds effects are not improving. 1/5/02 started Toueff. > I've tried alot more supplements but there are too many to list. > > My Doctor prescribed Nystatin 9/1/01(30 days), then 10/01/01 Diflucan (30 > days) and then 12/01/01 told me he had clostriddia and wanted to give him > Vancomyicin. I did not give him Vancomyicin. I've been rotating > anti-fungals such as garlic, ginger, olive leaf etc. My Doctor does not have > the knowledge nor experience to handle me son's issues. > > Have I destroyed my son's immune system so that it just can't function? How > do I get him back on track? What am I doing wrong? > > Diane > Trevor 4 3/4 48lbs. > > > > > ======================================================= > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 In a message dated 1/9/02 9:04:03 AM Pacific Standard Time, janetm@... writes: > It may be the Culturelle. My friend's son, age 7, was on Culturelle > to help treat yeast. At first, she saw wonderful improvement and was > so encouraged, but after 1 1/2 to 2 weeks he started declining. She > actually talked to the chemist who does the formulation and he told > her that there is casein in Culturelle. Your story just sounded so > familiar. Hope this helps. Janet As I said, we're having a similar situation with our son. We've been using Culturelle for a very long time. I do have to say that my son is the most sensitive kid in the world to everything and he tolerates this well. We actually ran out of Culturelle a week ago and I'm waiting for more. I haven't seen any changes so I wouldn't suspect the Culturelle. After someone on the list or the abmd list suggested it could be bowel problems like an impaction, I'm seriously considering this in our case. Hunter has been straining to go to the bathroom and just seems to be in pain. He's been taking his pants and pajama pants off a lot lately which makes me think he doesn't like having anything constricting on because it hurts his stomach. I gave him 3 oz. of Citroma from Walmart and will see what happens. Jo Representative for Unlocking Autism in South Carolina www.unlockingautism.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2002 Report Share Posted January 9, 2002 It may be the Culturelle. My friend's son, age 7, was on Culturelle to help treat yeast. At first, she saw wonderful improvement and was so encouraged, but after 1 1/2 to 2 weeks he started declining. She actually talked to the chemist who does the formulation and he told her that there is casein in Culturelle. Your story just sounded so familiar. Hope this helps. Janet > My son was flying high and now he has crashed and is still in the wreckage. > > My son started chelation 1/04/01 with Dr. Hicks (New Dan Doc.in Chicago > using Dan protocal). He was a mess for the first 21/2 months and then > between 3/20-6/05/01 he was doing excellent. Great eye contact, focused and > learning at a rapid rate. He was taking at the time > Nystatin 1/1/01-05/01/01 > Calcium 900mg > Magneseium 150 mg > Zinc 100 mg > E 1000iu > C 3000mg > Flax seed > 3 cod liver > Culturelle > Multi vitamin > By mid June he started changing, not able to focus and not as cooperative. > My doctor kept reassuring me Jun.-Aug. that it was the toxic metals were > coming out and the his nutrient level was fine. By 9/1/01 my son was crying > and totally out of control. I stopped chelation and started rotating anti > fungals. These are the tests and results that are out of range. > Great Smokies > Amino Acid- Essentials are low, except Taurine and Arginine > Comp. Digestive Stool Anal.- Haemolytic Escherichia coli 2+ > Great Plains Range > 3-indoleacetic 41.43 0-10 > kynurenic 5.12 0-2 > suberic 3.44 0-2 > ascorbic 3353.77 10-200 > succinic 23.54 0-20 > citric 603.05 20-200 > oxalic 158 0-100 > > He now takes > C 1000mg calcium 600mg Magnesium 600mg > E 400iu Flax seed 1000mg FOS 750 mg > CQ10 200 mg. Enzmaid 3 Culturelle 5 > primal defense 2 Transfer Factor 3 codliver 3 > zinc 100 mg p5p 150 mg Bio-cidin 6 drops > > > I did IV Glutathione 12/4/01 it helped language, but he still can't focus and > the stimming and sounds effects are not improving. 1/5/02 started Toueff. > I've tried alot more supplements but there are too many to list. > > My Doctor prescribed Nystatin 9/1/01(30 days), then 10/01/01 Diflucan (30 > days) and then 12/01/01 told me he had clostriddia and wanted to give him > Vancomyicin. I did not give him Vancomyicin. I've been rotating > anti-fungals such as garlic, ginger, olive leaf etc. My Doctor does not have > the knowledge nor experience to handle me son's issues. > > Have I destroyed my son's immune system so that it just can't function? How > do I get him back on track? What am I doing wrong? > > Diane > Trevor 4 3/4 48lbs. Quote Link to comment Share on other sites More sharing options...
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