Hi Anne, Re: thiamine responsive PDH

[Guest guest]

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> Oh Anita, I think I have hope again!

I am very anxious to find out my results and will ask my doc about

testing the serum v functional levels, she is out of town this week

at a healing foods conference she is excited about so I will have to

wait. I think they will send out to Quest Diagnostics, usually where

they go.>

Regarding the B-12, we tried cyanocobalamin in powder and pill and

the methylcobalamin in pill from a very good source which seemed to

aggrevate my neuropathy so went to the methylcobalamin injection

taken with folic acid, I at first got relief in my hands but within a

couple days developed the large welts at the site. They had seen it

once before in a patient with heavy metal toxicity but my heavy

metals thankfully are normal so that is not the answer. She is re-

testing me for methylmalonic aciduria which would prevent b-12

absorption to see if there is anything there. My daughter at one

time had methylmalonic aciduria.

>

I have recently switched to Q-gel and found it to be helpful, I just

need to take a bit more I think. I also take carnitor, all one

nutritional for calcium/ magnesium/ a separate b-50, neurontin,

vitamin C, vitamin E. and potassium for resent low levels.>

>

I saw a very good nutritionist a few years ago who recommended

liberal amounts of organic butter and coconut oil for my daughter and

as a household we have switched to that as our primary oil. Do you

take coconut because it is a medium chain oil?

I do do well on nuts also, very interesting. >

I have such high hopes that this will finally be the answer and I

will get some relief, do you have any problems with low levels of

amino acids?

My doctor did suggest the alpha lipoic acid this last visit, did you

start on iv with that or just take the prescription. My doctor gave

me the pharmacy information Stanford has on it and it suggests iv to

begin for 2 weeks. Then 200-600 mg 3x a day. Is this close to the

amount you take.

So glad you have gotten some relief yourself, I understand about

posting from another doctor, maybe I could just have my doctor call

yours. I would be happy to e-mail you off the forum, I didn't pick

that up the first time, sorry. Feel free to e-mail be back on my

private e-mail. I am so grateful for your knowledge. Thank you for

the prayer, I am thinking my daughter could benefit from further

investigation, she has a gluten intolerance and I see some reactions

to too many carbs, getting her to eat other things is difficult

though.

Anne