Glyconutrients-anyone use these?

July 14, 2004

I was wondering what peoples' experiences were with glyconutrients?

A friend is convinced they will work for us because a family in

Florida has seen amazing success in their Mito child while using

these products. ambrotose is one product recommended as well as

Impact. If any one knows much about this issue I would appreciat

eyour take on it. The family in Florida has seen increased energy,

no heat intolerence, no stroke migraines, and more since their son

has been on it the past 4 years. Insurance won't pay for it and it

sounds kind of expensive but I was wondering if it might help the

girls.

Darla

July 15, 2004

darla,

i have no personal experience with the glyconutrients, just that we

too are " looking " into having our 4.5 year old daughter (leighs) try

them. i have a family friend who lives in atlanta, who knows of a

young boy with mito that has also seen success while taking them.

i've received lots of info from the ambrotose company, which is all

positive, obviously b/c they want to sell their product.

i asked dr. cohen and he said we could try, but not to expect any

miracle. my daughter did not see any positive results from being on

the mito cocktail, so i do not have high hopes.

right now, our pediatrician was trying to contact the company to see

if she could receive some samples to get us started, b/c it is

expensive.

so, i'm not sure what will happen and if we will try. if you do,

keep me updated, as i will you.

take care,

bethany

mom to brennan 7, palmer & anna grace (leighs) 4

> I was wondering what peoples' experiences were with

glyconutrients?

> A friend is convinced they will work for us because a family in

> Florida has seen amazing success in their Mito child while using

> these products. ambrotose is one product recommended as well as

> Impact. If any one knows much about this issue I would appreciat

> eyour take on it. The family in Florida has seen increased

energy,

> no heat intolerence, no stroke migraines, and more since their son

> has been on it the past 4 years. Insurance won't pay for it and

it

> sounds kind of expensive but I was wondering if it might help the

> girls.

>

> Darla

July 15, 2004

Dear Darla,

' My 7 year old Leanna was on them 2 months ago. They are very expensive

but of course if they made a difference they would have been worth a try. I

was pushed so hard and told this was the miracle for her and the seller's

were so sure it would save her life. They did nothing for her except to

cause her severe gas, diarrhea and stomach upset. It was a huge regimen from

ambrotose (high doses is what they wanted) glycentials, gummies, plus, and

ambrotose AO. I tried my best and she lasted about 6 weeks or so. The

company told me she had to try them for at least 3 months to be sure they

were given a fair trial. The trouble they caused Leanna was not worth it to

me. I was told of a little girl with mito that had miracles happen to her

from them. I kept asking to be put in contact with this mito mom, but I

never was put in contact with her. I figured that if I was a mito mom and

found something that caused such miracles in my child, I would be personally

contacting all the parents on the mito group to share with them my

discovery. I could not understand why she never did that. This Florida

family you mentioned, did you hear this from the company or did you actually

contact them yourself. I would have been shouting it out from hilltops if I

found a miracle drug, especially knowing what all of us parents go through.

Anyways, that has been my experience. The company was considerate enough to

refund all of my money when Leanna had such bad results.It was almost $400

for a 2 months supply. Dr. Boles told me that I could try them but not to

expect any miracles. He was right.

Good luck,

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) & Leanna

with same disease.

Samya's Memorial Site: www.Samya.org

Email: Suhad1970@...

Alt Email: Suhad@...

AiM Chat: Suhad1970