Guest guest Posted June 10, 2006 Report Share Posted June 10, 2006 Not Kristy, but are you saying all B-12 disorders can be corrected in that way? It might be a different issue with the child if the mother has a b-12 metabolism disorder, as my friend does. Dr. Goldberg makes sense to me in saying that the metabolic issue is secondary to the autoimmune issue (therefore correct the problem where it originates), but there could be kids that have inherited a parent's b-12 disorder too. This is the real reason my friend's child responded so amazingly to b-12 shots (in her opinion). He does well on hydroxy or methyl, so he probably does not have a methylation defect per se, but an inherited b-12 disorder. He is going through genetic tests to verify. He might not be the only child out there like this. I saw a re-run on discovery health recently (mystery diagnosis) about a boy who was assumed to have autism with seizures. His mom was learning about the GF/CF diet, when she wondered if he might have inherited her celiac's disease. He tested positive, they removed gluten only, did nothing else and he became completely normal. The doctors said he was hard to diagnose as he had an unusual presentation of celiacs (it made him appear autistic w/seizures). My friend's son seems to be this way with his b-12 problems, but this is certainly not the case with every child with autism taking b-12. - Lori <lbharris@...> wrote: Wouldn't excessively high B12 on your child's bloodwork be contra-indicated to giving them more? When does it become toxic? Isn't it better to get their bodies healthy so that they can absorb it properly thorough food and basic OTC supplementation? Just by humble opinion and one from a Mom who's kid's was sky high and is now normal. Lori RE: Re: Opinion on recent posts/Rhoda Rhoda, I, too, need B12 shots, but the B12 shots I get are different than the ones Dr. Neubrander uses. I am definitely interested in more info on this, if you have any. My son, too, tested off-the-charts high for B12. Kristy Rhoda Boyd <rboyd@...> wrote: For example, information from this group makes me wonder if B-12 plays a larger role with my son than others. His levels were through the roof at two years old and have never been tested again. I have a B-12 absorption problem and have to get shots so maybe there is something to that. I need to research all of that a little more. We Made Changes Your email is all new. Learn More Share Feedback Recent Activity 6 New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 But .maybe the B12 disorder that seems to be inherited is simply a symptom of an inherited immune disorder - from parent to child? Thqat immune dysfunction is likely as Dr Goldberg often states have a genetic component! _____ From: [mailto: ] On Behalf Of Rob or Sunseri Sent: Sunday, June 11, 2006 6:34 AM Subject: RE: Re: Opinion on recent posts/Lori Not Kristy, but are you saying all B-12 disorders can be corrected in that way? It might be a different issue with the child if the mother has a b-12 metabolism disorder, as my friend does. Dr. Goldberg makes sense to me in saying that the metabolic issue is secondary to the autoimmune issue (therefore correct the problem where it originates), but there could be kids that have inherited a parent's b-12 disorder too. This is the real reason my friend's child responded so amazingly to b-12 shots (in her opinion). He does well on hydroxy or methyl, so he probably does not have a methylation defect per se, but an inherited b-12 disorder. He is going through genetic tests to verify. He might not be the only child out there like this. I saw a re-run on discovery health recently (mystery diagnosis) about a boy who was assumed to have autism with seizures. His mom was learning about the GF/CF diet, when she wondered if he might have inherited her celiac's disease. He tested positive, they removed gluten only, did nothing else and he became completely normal. The doctors said he was hard to diagnose as he had an unusual presentation of celiacs (it made him appear autistic w/seizures). My friend's son seems to be this way with his b-12 problems, but this is certainly not the case with every child with autism taking b-12. - Lori <lbharriscogeco (DOT) <mailto:lbharris%40cogeco.ca> ca> wrote: Wouldn't excessively high B12 on your child's bloodwork be contra-indicated to giving them more? When does it become toxic? Isn't it better to get their bodies healthy so that they can absorb it properly thorough food and basic OTC supplementation? Just by humble opinion and one from a Mom who's kid's was sky high and is now normal. Lori RE: Re: Opinion on recent posts/Rhoda Rhoda, I, too, need B12 shots, but the B12 shots I get are different than the ones Dr. Neubrander uses. I am definitely interested in more info on this, if you have any. My son, too, tested off-the-charts high for B12. Kristy Rhoda Boyd <rboydcyberus (DOT) <mailto:rboyd%40cyberus.ca> ca> wrote: For example, information from this group makes me wonder if B-12 plays a larger role with my son than others. His levels were through the roof at two years old and have never been tested again. I have a B-12 absorption problem and have to get shots so maybe there is something to that. I need to research all of that a little more. We Made Changes Your email is all new. Learn More Share Feedback Recent Activity 6 New Members Visit Your Group Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2006 Report Share Posted June 11, 2006 Hi, all. I just want to make some comments on the B12 issue. As you may know, the methylation cycle uses B12 in the methylcobalamin form. Many of the children with autism as well as (it is beginning to appear) many of the adults with chronic fatigue syndrome are either unable to convert other forms of B12 to methylcobalamin, or they are unable to recycle methylcobalamin to use it again, as is normal. If they are unable to convert, they may supplement B12 and test high in it, but they are not able to utilize it as methylcobalamin. The same can happen with folate, which can show up as high Figlu in a urinary organic acids test, indicating that even though there is a lot of folate in the body, it cannot be converted to the active forms for use. Whethter these things occur depends on the particular genetic polymorphisms that the person has. Glutathione is required to convert other forms of B12 to methylcobalamin, and many people with autism and CFS are depleted in glutathione. The enzymes methionine synthase and methionine synthase reductase need to be operating properly in order to utilize and recycle methylcobalamin. Many of the people with autism or CFS have polymorphisms in these enzymes. In these cases, supplementing with methylcobalamin (subcutaneous is best, because it is released more slowly into the blood) has helped quite a few. Depending on the particular combination of polymorphisms that is present in the person, they may need other supplements as well, such as active forms of folate or trimethylglycine or others. This is the basis for the major gains in treatment that have been made by the DAN! project and by Dr. Amy Yasko. I think there are still unresolved issues, but this approach really has helped many. I realize that the approach involves supporting the immune system, and the immune system is certainly involved in these disorders, but I think it is important to consider that this may be a downstream effect in the pathogenesis in many cases. The reason is that both glutathione depletion and a block in the folate metabolism will cause immune dysfunction, particularly in the cell- mediated part of the immune response, which is necessary to fight viruses, intracellular bacteria and yeasts. Glutathione depletion has been shown by a lot of published research to interfere with proper T cell function. A correct folate metabolism is necessary to make new DNA, RNA and thymidine, which are needed to make new cells, as normally occurs when the lymphocytes proliferate (clone themselves) in response to a viral (or other) infection. The methylation cycle and the folate metabolism are linked, so that when there is a block in the methylation cycle, there is also a block in the folate metabolism. I would encourage people to consider these possibilities. Rich > For example, information from this group makes me wonder if B-12 plays a > larger role with my son than others. His levels were through the roof at > two > years old and have never been tested again. I have a B-12 absorption > problem > and have to get shots so maybe there is something to that. I need to > research all of that a little more. > > We Made Changes > Your email is all new. > Learn More > > Share Feedback > > Recent Activity > > 6 > New Members > > Visit Your Group > Quote Link to comment Share on other sites More sharing options...
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