Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 This may not be as bad at it appears on the surface. I can share that both my son and I had temporary periods of visual disturbance off and on throughout the chelation process. His was more obvious. He did not have the condition your daughter has but prior to chelation had extreme difficulty with getting his eyes to converge/work together for depth perception and in tracking things, especially with his left eye. He also had changing blind spots and periods where he couldn't see something that was right in front of him. These problems had subsided some prior to chelation and returned for brief periods during the process. They've also returned very briefly a few times during other periods where his body was experiencing immune stress or clearing out something (ie: virus). While I'm sure redistribution could occur and affect something this dramatically, I have seen so many cases of temporary symptom worsening during the process to lean more towards the possibility that a system that is already weak would temporarily weaken when the body is working on other things or stressed. Either way, concentrating your efforts on reducing the possibility of over-stressing your child's body during any sort of treatment would be key here. Using a much more gentle (lower dose), consistent (every 3-4 hours) protocol would be a good start and probably giving her longer between cycles. I'd also be very careful to remineralize after each round. I personally wouldn't add a bunch of supplements since some kids can be extremely reactive to the supplements as well causing a further overtaxing of her system. If you do add supplements, I'd suggest doing it very slowly, one at a time, giving at least several days before adding additional ones. You might also want to read up on Dr. Megson's Cod Liver Oil protocol. It's had some amazing results in kids with visual disturbances. Gaylen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 , I don't mean to sound harsh here, I am sure you are very concerned about your daughter. However, 50 mg of DMSA once a day dosing is insane. Have you read the files section of this e-list and specifically Andy Cutler's recommendations for dosing amounts and schedule?? If not, you need to. You need to take control of what you are doing with your daughter's treatment and not depend on some " specialist " to take care of all the details for you. I think you need to stop this doctor's " protocol " right away. I hope some people more knowledgable than I will jump in with suggestions about some supplements to help reduce the potential damage here. I suspect some vitamin C, B's, etc. may be in order. --Lissy [ ] VERY URGENT - Andy please - 5 yr old reaction dmsa Hello Andy, sorry to bother on a sunday. My 5 year old ASD girl (30lb) was= put by a " specialist " on dmsa for heavy metal treatment. Her great plains mineralog= ram (hair) showed middle high mercury, tin, nickel, antimony. His protocol was 50mg dmsa once a day during 3 days and 11 off. We have do= ne 2 cycles and my little one has lost her pain sensitivity (which she had recoved 3 ye= ars ago through diet) and is losing sight. She was born with a congenital nystagmus which = means her eyes move from side to side and has trouble focusing, but she could find us at a= distance of aprox 50-60 ft and now 10ft from her she cannot see us. Night vision is eve= n worse. I´m afraid the mercury has redeposited in her optic nerve or worse? Language improved greatly towards the end of the first cycle but went back = again after the 2nd dose and has not improved since. Tolerance is also going down. We are scheduled to start a 3rd round of dmsa tomorrow, but don´t know what= to do. Should I just give selenium to try to minimize the damage or continue with = a different protocol to get the metals out? Should we continue to chelate or not? What = would happen if we do nothing, would her eyesight recover? She´s relatively high functi= oning and would hate to have her suffer damage on our efforts to get her better! I could no= t forgive myself if she goes blind on this! Please advise. Thank you. , mom to 5 ASD. ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 Could not agree more, I usually am very careful in checking things for my d= aughter but was caught in the expert web and took things for the first time at face val= ue. I KNOW I have to stop, and yes I´ve spent all weekend reading, that´s the reason for= my post. Thanks. No harsh feelings, just a desperate cry for help. . > , > > I don't mean to sound harsh here, I am sure you are very concerned about = your daughter. > However, 50 mg of DMSA once a day dosing is insane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 I would definitely change protocols, consider ALA and start Andy's every three hours - around the clock - for at least three days when it can best be done. [ ] Re: VERY URGENT - Andy please - 5 yr old reaction dmsa Could not agree more, I usually am very careful in checking things for my d= aughter but was caught in the expert web and took things for the first time at face val= ue. I KNOW I have to stop, and yes I´ve spent all weekend reading, that´s the reason for= my post. Thanks. No harsh feelings, just a desperate cry for help. . > , > > I don't mean to sound harsh here, I am sure you are very concerned about = your daughter. > However, 50 mg of DMSA once a day dosing is insane. ======================================================= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2004 Report Share Posted August 29, 2004 , One well-known cause of nystagmus is low thiamine. Medline brings up 55 articles on this association which I studied at length a number of years ago when a friend's grandchild acquired nystagmus after her first immunizations.. Thiamine is a sulfur compound that enhances the endocytic pathway which helps cells recycle protein and sulfur in particular. There are several articles below which suggest that thiamine in a derivative form participates in thiol disulfide exchange, a process which is extremely important to the function of the kidneys in regulating body sulfur supplies. If thiamin derivatives for a disulfide molecule, then it is likely that this disulfide form could interact with DMSA. We probably don't know enough to know if it is the derivative of thiamine that relates to nystagmus or thiamine itself. Even so, if your child was just borderline on being deficient, and this whalloping dose of DMSA went after that scarce commodity, it might have been just enough to tweak her over the edge back into deficiency. Speech is also a problem in severe thiamine deficiency, creating a condition called Wernicke's encephalopathy...something that happens with alcoholism A LOT. Fortunately, IF thiamine is the issue here, then giving her thiamine should resolve the problem very quickly. Another little perk is that thiamine (probably by increasing endocytosis) helps chelation, as an article below reports. Thiamine is really important for the function of lysosomes. They are the organelle of the cell where mercury collects after a few days after exposure, and there it gets royally stuck, and it is my opinion that this slow-down of sulfur recycling in the kidney is one of the worst consequences of mercury toxicity. I think there is a good chance that DMSA meets mercury in the lysosome of cells after the molecule has been endocytosed into cells with extremely rapid membrane turnover like macrophages (such as the liver Kupffer cells) and kidney tubule cells. Fortunately, these are the same cells that would have grabbed up the mercury and gotten it out of circulation pretty quickly after exposure. Any time you have a period of catabolism (rapid weight loss, for instance) the demands on thiamine go way up as cells try to recycle all that the body is breaking down, so this can be behind the onset of thiamine deficiency, as was the case in the report below of someone who had experience weight loss before surgery.. It is not always " diet " that causes thiamine to become deficient. Of course, you may have heard of Derrick Lonsdale's work with TTFD, a thiamine-related compound. Some DAN! doctors have reported that when used at the same time as a chelating agent, that it enhanced chelation, even though the molecule itself is not a chelator. Makes sense, actually. I've put two abstracts from studies that Dr. Lonsdale has written, one that is hot off the press. (Actually, epublished early!) Hope this helps! PS. , if your daughter's nystagmus was congenital, there is a chance that you were thiamine deficient during pregnancy. Were you a mom who got nauseous and threw up a lot during pregnancy? That could do it. If this applies, then when you get the thiamine to help your daughter, why don't you try some, too, and see what might change for the better! 343fc748.jpg Thiamine Histochem J. 1996 Mar;28(3):217-25. Related Articles, Links Histochemical localization of autometallographically detectable mercury in tissues of the immune system from mice exposed to mercuric chloride. Christensen MM. Institute of Neurobiology, University of Aarhus, Denmark. The distribution of mercury in the spleen, liver, lymph nodes, thymus and bone marrow was studied by autometallography in mice exposed to mercuric chloride intraperitoneally. Application of immunofluorescence histochemistry and an autometallographic silver amplification method was employed to the same tissue section. Mercury was not only detected in macrophages marked by the antibody M1/70 but also in macrophage-like cells, which were either autofluorescent or devoid of fluorescent signals. These two cell types were identified as macrophages at the electron microscopical level. Autometallographically stained macrophages were observed in the spleen, lymph nodes, thymus and in Kupffer cells of the liver. Furthermore, mercury was observed in endothelial cells. No obvious pathological disturbances were observed at light and electron microscopical level. At the subcellular level mercury was localized in lysosomes of macrophages and endothelial cells. PMID: 8735289 [PubMed - indexed for MEDLINE] Ann Fr Anesth Reanim. 2001 Jan;20(1):40-3. Related Articles, Links [Click here to read] [Postoperative encephalopathies: thiamine deficiency, an unrecognized etiology] [Article in French] Vidal S, Andrianjatovo JJ, Dubau B, Winnock S, Maurette P. Departement d'anesthesie-reanimation III, CHU Pellegrin, 33076 Bordeaux, France. We report the case of a patient who experienced a postoperative Wernicke encephalopathy 8 days after a left hepatectomy performed for metastasis related to a rectal cancer. During the six months before surgery the patient lost 10 kg of weight (15%). [catabolism increases thiamine deficiency-sco] Moreover, in the postoperative period the patient received exclusively 5% dextrose solution intravenously. On the 8th postoperative day, an alteration of consciousness, a vertical nystagmus and an ataxia led to consider the diagnosis of thiamine deficiency that was then established by the decrease in the transcetolase activity of the red blood cells. {a test which confirms thiamine deficiency] Vitamin B1 [thiamine] supply improved the clinical status rapidly and completely. [The good news!] This observation allows to review aetiologies and clinical forms of thiamine shortage. In addition, it stresses the detection of exposed patients and the prevention methods. Publication Types: * Case Reports PMID: 11234577 [PubMed - indexed for MEDLINE] Hum Exp Toxicol. 2000 Sep;19(9):523-8. Related Articles, Links [Click here to read] Effect of thiamine on the cadmium-chelating capacity of thiol compounds. Tandon SK, Prasad S. Industrial Toxicology Research Centre, Lucknow, India. The influence of thiamine on the efficacy of meso-2,3-dimercaptosuccinic acid (DMSA), diethyldimercapto succinate (DEDMS), alpha mercapto-beta-(2-furyl) acrylic acid (MFA) and alpha-mercapto-beta-(2-thienyl) acrylic acid (MTA) to mobilize cadmium and reverse cadmium-induced biochemical alterations was investigated in cadmium-exposed rats. The thiamine coadministration enhanced the efficacy of MFA and MTA in reducing hepatic and renal burden of cadmium and that of DMSA and DEDMS in mobilizing hepatic cadmium. It also improved the efficacy of DMSA, DEDMS and MFA in reversing the cadmium-induced increase in urinary alkaline phosphatase and aspartate and alanine amino transaminases. The combined treatment with thiamine and DMSA or MFA restricted the urinary loss of zinc and that with thiamine and DEDMS reduced the loss of fecal copper, a general effect of chelation. In conclusion, the administration of thiamine during chelation therapy in cadmium poisoning may be beneficial and more effective than thiol chelating agents alone, which needs to be confirmed in humans. PMID: 11204555 [PubMed - indexed for MEDLINE] Neuro Endocrinol Lett. 2002 Aug;23(4):303-8. Related Articles, Links Treatment of autism spectrum children with thiamine tetrahydrofurfuryl disulfide: a pilot study. Lonsdale D, Shamberger RJ, Audhya T. Preventive Medicine Group, 24700 Center Ridge Road, Westlake, OH 44145, USA. dlonsdale@... OBJECTIVES: In a Pilot Study, the clinical and biochemical effects of thiamine tetrahydrofurfuryl disulfide (TTFD) on autistic spectrum children were investigated. SUBJECTS AND METHODS: Ten children were studied. Diagnosis was confirmed through the use of form E2, a computer assessed symptom score. For practical reasons, TTFD was administered twice daily for two months in the form of rectal suppositories, each containing 50 mg of TTFD. Symptomatic responses were determined through the use of the computer assessed Autism Treatment Evaluation Checklist (ATEC) forms. The erythrocyte transketolase (TKA) and thiamine pyrophosphate effect (TPPE), were measured at outset and on completion of the study to document intracellular thiamine deficiency. Urines from patients were examined at outset, after 30 days and after 60 days of treatment and the concentrations of SH-reactive metals, total protein, sulfate, sulfite, thiosulfate and thiocyanate were determined. The concentrations of metals in hair were also determined. RESULTS: At the beginning of the study thiamine deficiency was observed in 3 out of the 10 patients. Out of 10 patients, 6 had initial urine samples containing arsenic in greater concentration than healthy controls. Traces of mercury were seen in urines from all of these autistic children. Following administration of TTFD an increase in cadmium was seen in 2 children and in lead in one child. Nickel was increased in the urine of one patient during treatment. Sulfur metabolites in urine did not differ from those measured in healthy children. CONCLUSIONS: Thiamine tetrahydrofurfuryl disulfide appears to have a beneficial clinical effect on some autistic children, since 8 of the 10 children improved clinically. We obtained evidence of an association of this increasingly occurring disease with presence of urinary SH-reactive metals, arsenic in particular. Publication Types: * Clinical Trial PMID: 12195231 [PubMed - indexed for MEDLINE] Med Sci Monit. 2004 Aug 20;10(9):RA199-RA203. [Epub ahead of print] Related Articles, Links Thiamine tetrahydrofurfuryl disulfide: a little known therapeutic agent. Lonsdale D. Preventive Medicine Group, Westlake, Ohio,U.S.A. Thiamine tetrahydrofurfuryl disulfide (TTFD) is the synthetic counterpart of allithiamine, occurring naturally in garlic. Allithiamine was discovered in Japan in 1951. Its extensive research was reported by a group known as the Vitamin B Research Committee of Japan, and given this name because of its existence in the bulbs of many of the allium species of plants. It was found to be a disulfide derivative of thiamine, produced as a result of enzymatic action on the thiamine molecule in garlic bulbs when the bulb is cut or crushed. Subsequent experimental work in both animals and human subjects revealed that its metabolic effect was much more powerful than the thiamine from which it was derived. Japanese investigators created a number of synthetic forms and investigated their use in a number of human disease conditions. Although some derivatives have been synthesized without a disulfide bond in the molecule, these investigators emphasized that the disulfide was an extremely important part of its biologic action and TTFD is the most modern of the disulfide derivatives. Because at least part of its beneficial effects are the same as water soluble thiamine salts, this review deals first with the clinical uses of thiamine (vitamin B1) in medicine. PMID: 15328496 [PubMed - as supplied by publisher] At 04:41 PM 8/29/2004 +0000, you wrote: >Hello Andy, sorry to bother on a sunday. My 5 year old ASD girl (30lb) was= > > put by a > " specialist " on dmsa for heavy metal treatment. Her great plains mineralog= > >ram (hair) >showed middle high mercury, tin, nickel, antimony. > >His protocol was 50mg dmsa once a day during 3 days and 11 off. We have do= > >ne 2 cycles >and my little one has lost her pain sensitivity (which she had recoved 3 ye= > >ars ago through >diet) and is losing sight. She was born with a congenital nystagmus which = > >means her eyes >move from side to side and has trouble focusing, but she could find us at a= > > distance of >aprox 50-60 ft and now 10ft from her she cannot see us. Night vision is eve= > >n worse. I´m >afraid the mercury has redeposited in her optic nerve or worse? > >Language improved greatly towards the end of the first cycle but went back = > >again after the >2nd dose and has not improved since. Tolerance is also going down. > >We are scheduled to start a 3rd round of dmsa tomorrow, but don´t know what= > > to do. >Should I just give selenium to try to minimize the damage or continue with = > >a different >protocol to get the metals out? Should we continue to chelate or not? What = > >would happen >if we do nothing, would her eyesight recover? She´s relatively high functi= > >oning and would >hate to have her suffer damage on our efforts to get her better! I could no= > >t forgive myself >if she goes blind on this! > >Please advise. Thank you. > >, mom to 5 ASD. > > > > >======================================================= > Quote Link to comment Share on other sites More sharing options...
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