Re: B-12/ Dawn/Kathy-optic atrophy

[Guest guest]

I'm glad you posted this, Kathy. I've read this alot since yesterday, and wasn't sure how it pertained to Maddie, as all of the websites only mentioned LOW levels of b-12 in the blood. I couldn't find anything mentioning that it could be a type of deficiency because the body couldn't get it where it needed to go.

I'm interested in this DAN philosophy- is there a web-site? When you said subcutaneously, are you referring to the injections?

Maddie also has optic nerve atrophy, which I discovered yesterday can be a result of high levels of b-12. Possibly one more piece of the puzzle for Maddie.

Holly

Thanks Kathy-

Re: Increased b-12 in blood/ lab level?holly and carrie

has always had a big liver since birth actually. Dr.cohen decided to biopsy it when she had her muscle biopsy done. It showed fibrosis and some cirrhosis. she has bone marrow failure and has recieved blood transfusions since birth. They are not sure if the excess iron from these has caused the damage or if it is mainly mito and the excess iron secondary. They have done every test none to mankind on her. B12 can cause anemia and I believe primarily that is why it was done-we are still looking for an answer to her anemia. anyways it is a simple blood test and until I found that link today, I never knew why she may have an elevated b12 level. I will be talking to her hem/onc next week about it. If your met. doc has some good reasoning behind it Holly please let me know.If I get any further info I too will pass it along. I am very concerned because my undiagnosed daughter Molly (soft signs) has this high level of b12 too-liver damage??? DawnPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

Hi, Dawn and Holly -

One website is www.drneubrander.com. He is the methyl-B12 guru. The website talks about his protocol, and how to prescribe and administer the shots (subcutaneous injections). Look at www.AutismResearchInstitute.com for info about the DAN! (Defeat Autism Now) protocol. The main message is that autism can be treatable (no one is talking about a cure) with biomedical management. One book to read about the biomedical management approach is "Children With Starving Brains" by Dr. Jacquelyn McCandless.

Kathy

Re: Increased b-12 in blood/ lab level?holly and carrie

has always had a big liver since birth actually. Dr.cohen decided to biopsy it when she had her muscle biopsy done. It showed fibrosis and some cirrhosis. she has bone marrow failure and has recieved blood transfusions since birth. They are not sure if the excess iron from these has caused the damage or if it is mainly mito and the excess iron secondary. They have done every test none to mankind on her. B12 can cause anemia and I believe primarily that is why it was done-we are still looking for an answer to her anemia. anyways it is a simple blood test and until I found that link today, I never knew why she may have an elevated b12 level. I will be talking to her hem/onc next week about it. If your met. doc has some good reasoning behind it Holly please let me know.If I get any further info I too will pass it along. I am very concerned because my undiagnosed daughter Molly (soft signs) has this high level of b12 too-liver damage??? DawnPlease contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.