Hi Anne, Re: thiamine responsive PDH

[Guest guest]

Hi Anne, I'm so glad you have some hope again. I believe that

hope is the only things that gets us all through from day to day.

<<> 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. >>

WOW, she sounds like MY kind of doc and one who will probably

have more access to the nutritional kind of testing (AND mind

set) that is neded, especially for this kind if mito .

Unfortunately, Quest doesn't do functional B vitamins tests, but

even straight serum levels might be VERY helpful, especially if

they show them to be low. I just think a serum level test may not

be sensitive enough to show the entire picture and " normal "

serum level result may not accurately reflect low FUNCTIONAL

levels if vitamin metabolism is seriously impaired. I know of a

few labs that do the functinal testing if you need further info on

function al levels. Some insurance companies pay, especailly (I

think) if the doc would write a letter of medical necessity.

< 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.

> > >>

Glad that your heavy metals are OK!

I was unclear before. I'm prety sure I remember reading this and

I can't remember which, but in the INJECTION form of B12, I

have read that people are more likely to get a reaction from ONE

of the two choices: cyanocobalamin or methycobalamin. What I

meant is that you have two forms you could try if you are getting a

reaction so you would know if it's B12 that the reaction is to , or

just the form. I could NOT get my B12 level up until I had my

cobalt (a mineral) level tested (OFF the chart low) and started

taking Dolisos Homeopathic Oligo cobalt. It really helped.

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

just

> need to take a bit more I think.>>

Glad the Q gel is working!

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

neurontin,

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

I need HUGE amount more magnesium than calcium. I have

also found that, for me Ester-C (the alkaline form of vitamin C )

works much better than ascorbic acid (the acid form). I think this

might be because higher than normal levels of lactic acid might

make the body already acidic enough.

<<> >

> 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?>>

That sounds great. Your mind set (of seeing a nutritionist) and

mine seem very in line with each other. I take the oils that I take

because I'm on " as close to a ketogenic diet as I can " and those

oils are the ONLY oils that I can tolerate. I used to do really well

on omega 3-6-9- fatty acids, but lately they make me sicker.

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

I agree!

<<

> 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? >>

I had the usual amino acid profile done again last summer

(before I really got ALL the way onto my " current regime " ) and the

results were mostly very low, with a couple that were super high!

Taurine (seizures and nervous system) and methionine

(Kidneys/liver) are the two I need to regularly supplement

<<>

> 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.>>

Oral. I am SO sentive to EVERYTHING that, for me, I think an IV of

ANYTHING is potentially dangerous. Are you also sentivei to

drugs, even OCR and anaesthesia?

<<>

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

about

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

call

> yours.>>

Thanks! I don't have a mito doc, just an enlightened and

openminded family doc who really listens well and KNOWS me.

I basically did all the work myself and diagnosed myself. THEN

I brought her the info to read, I requested the tests and things

eventually all came together. She has seen thiamine injections

bring me almost literally " back to life " several times and that

really helped make her listen.

I may eventually see the one mito doc experienced in treating t.r.

PDH. However, I'm not sure what benefit I would get from seeing

him, as I have no children, no famliy connections to worry about

and I was already doing almost everything on his protocol for a

long time before I ever got diagnosed (or even knew about mito

and knew what his protocol WAS. I have been lucky enough to

have found a few other other helpful nutritional supplements

(manganese, homeopathic silicea 6X) that are now being

sucessfully tried by " the others " . I based my supplements soley

on using what I thought would be the appropriate natural

healing Rx for my symptoms and observed the results over many

years. I have a fairly strong background in natural

healing/nutrition, SO I'M NOT RECOMMENDING THIS

APPROACH TO OTHER PEOPLE and NOT recommending

those particular added supplements.

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

> private e-mail.>.

For now let's keep it public, if that's OK. I'm hoping that if there

are " others like us " lurking or eventually searching the archives ,

some of this knowledge might be helpful . Once I hear back from

the other mom, I'll see how public she wants to be.

<>

Yhanks, but I'm just passing " info torch " on to you. Have my own

" stake " in this too, beside the fact that I really care about you and

your daughter. The larger pool of t.r. PDH families we can find

(ESPECIALLY ADULTS!), the better chance we have of

discovering info that may help us all.

<

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.>>

Yes, I understand. Eating low carb isn't much fun, until, if it's the

right thing for the body, you begin to feel so much better you just

don't care.

I will post (or e-mail) the info you requested just as soon as I

hear back from the mom.

If you think of anything else I may be able to help with, please dn't

hesitate to ask.

Prayers for you and your daughter.

Anita