Glyconutrients & DMG

[Guest guest]

Darla,

I myself tried ambrotose years ago when I had chronic fatigue, and it did

nothing for me. I have had plently of people trying to sell them to me

since for our son . I have to agree with Suhad Haddad - has anyone

ever spoken directly (preferably face to face) with a family with a mito

child who has had significant sustained success with these products? I am

sure the hear say and second hand information is fuelled by the organization

that is trying to sell the product. Likewise, if my mito child had had

major success with a product, I would be making every effort to tell others

in the same situation about it.

A product that did make a big difference to 's quality of life that I

have spoken about on this group many times in the past is DMG -

dimythelglycine (check out www.kirkmanlabs.com ) Others on this list have

tried it, some with some success and others with no benefit at all. In the

last 6 months it's effectiveness for has not been evident, as he has

regressed significantly.

Regards,

& Savage ( - 8yrs - complex IV mito - Australia)

Message: 17

Date: Thu, 15 Jul 2004 18:20:34 -0700

Subject: RE: Glyconutrients-anyone use these?

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

Glyconutrients-anyone use these?

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