B-12/ Dawn

[Guest guest]

That's somewhat frustrating that Cohen didn't know why the b-12 was elevated. Did he ever say that the elevated b-12 could mean a b-12 deficiency (that the b-12 isn't being absorbed for whatever reason?) I can't find anything (aside from the link you sent and a couple other sites with little info.) on ELEVATED b-12. I'm just wondering if her body is not absorbing it, if she's considered deficient? (Even though the blood level is high.)

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.

[Guest guest]

I'm going to give this elevated B12 issue a try, from another perspective -

My 5 year old son has autism, and we have been using a biomedical protocol called DAN with great success (he is very verbal, cognitively above age level, and will be mainstreamed in kindergarten this year). The mito cocktail is part of the advanced DAN protocol. He is severely Carnitine deficient (total 9, free 7) and responded beautifully to Carnitine, CoQ10 and fatty acid supplements (able to run, ride a bike, tone, strength and stamina improved). My 12 year old multiply disabled daughter and I are both Carnitine deficient as well, and we are awaiting a mito appointment this summer, so we don't know what we have (if anything).

His serum B12 was >2000. The DAN philosophy is that testing B12 is meaningless - that an elevated level in an individual child probably means that the B12 is extracellular and nonfunctional, and is unable to be transported into the cell where it can do its work. It accumulates extracellularly and shows up in lab tests as a high level. The common form of B12 used therapeutically is cyanocobalamin, usually used IM (intramuscularly) or po. A relatively new therapy in DAN is the use of subcutaneous METHYLcobalamin (M-B12), which is the more biologically active form. In research trials by Dan doc Dr. Neubrander, 90% of kids who tried it had positive effects. We have been giving my son M-B12 2 times a week for 4 months now, with sustained improvement in language and social skills (and some negatives as well - more hyper).

The point is - very elevated serum B12 probably means that what you have is not working, for the reasons above.

I hope that this was okay to post. I am amazed by all of the overlap between mito symptoms and management and autism. In my kid it may be that his autism is secondary to a mito problem - I wonder whether some of the others (the kids with normal tone and motor skills and autism) have acquired mito issues.

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.