How much VITAMIN B6 is REALLY too much?!?

[Guest guest]

Hello my fellow CMTers! I hope this finds you well and having a great

summer:

Please Help! I am confused on the whole B6 issue.

Several years ago, I was told by my neurologist and advised by

several CMT agencies & articles that Vit. B6 can be (IS) a NEURO-TOXIN

for people with CMT, such as myself, and should be avoided in most

multi-vitamins & supplements. Apparently we get enough in our normal

diet to get what we need. However, most vit's put in ALOT of B6 in for it's

supposedly aiding in " energy & stamina " for " normal " individuals.

The last time I saw my neuro, he convinced me to buy an

expensive supplement called " PURE ENCAPSULATIONS: UltraNutrient:advanced

antioxidants & phytonutrients " that contains all of the vitamins,minerals &

other supplements (like ALA, CoQ10, turmeric, folic acid,along with others I was

taking separately) mixed together in convenient capsules.

I had been PURPOSELY AVOIDING ANYTHING WITH extra B6 in it,

which takes LOTS of label reading. A daily serving of 6 of these

capsules contains 25 mg, or 1,250% RDA of Vit B6. I asked my neuro

about that, and he said it was only a concern if it were 100mg or more

B6 (a true " mega-dose " ), so I bought several bottles.

After taking them for almost 3 months, I have had severely

increased weakness, more decreased muscle tone, increased balance &

stability problems (lots more falls), severely decreased stamina, extra

tiredness & was wanting to sleep MUCH more. COINCIDENCE? Perhaps.

I stopped taking them about a week ago (since they were the

only thing new in my daily routine), and I see my neuro tomorrow for a

check-up and hopefully a refund on the 3 bottles I have not opened!

So, my questions are:

***Is ANY AMOUNT at all of extra B6 taken in supplement form really safe for us

CMTers & others with neuropathies?

***Should I just go back to avoiding B6 altogether & not take a chance, knowing

it has been proven to be a neuro-toxin & detrimental to CMT patients?

I thank you and appreciate your time & patience with my paranoia(??) and look

forward to getting some helpful & knowledgable replies. You can reach me

personally at watersholly@... or I do receive the Digest letter each

day.

I look forward to hearing from you!

Thanks and may God Bless you!

Holly Waters

Corpus Christi, TX

Age 44

[Guest guest]

Holly,

In 2004, CMT expert Dr. Gareth Parry, advised this on this.(see below) I have

this in our Files, and there is another article there as well you may want to

read. Any Dr. that is pushing a product on a patient usually has some financial

incentive to do so, and does not understand the implications of CMT. Buyer

beware! If this " nutrient capsule " has made you feel worse, I'd recommend you

stop taking it and refuse to continue with it. We want to feel better, not

worse!

Gretchen

Vitamin B6 Use: by Gareth J. Parry, M.D.

The RDA (recommended daily allowance) of vitamin B6 is 2 mg and the

MDR (minimum daily requirement is 0.1-0.2 mg). The amount in a typical

multivitamin is 5 mg although many have 10 mg and, obviously, some

have 8 mg. There are several products available over the counter that

contain 20 mg.

All the research that has been done indicates that all of these doses

are safe for normal people and I am not concerned for my CMT patients

at these doses. Larger dose tablets can be found - there used to be a

500 mg tablet!

In our studies, the lowest dose that we found to be definitely toxic

to nerves was 500 mg daily; we had one patient who was adamant that

she was taking only 200 mg daily who developed nerve damage although

she was also taking a lot of B6-rich foods. One doctor in London,

England claims that 50 mg daily can be toxic to the nerves but no one

else has been able to show that.

In summary, I tell my patients under no circumstances should they

take more than 20 mg daily and I prefer them to take no more than 10

mg daily. 8 mg daily is certainly safe.

Gareth J. Parry

Department of Neurology

University of Minnesota

612 624 6145 (Phone)

612 626 2131 (FAX)