glyconutrients

[Guest guest]

has anyone tried glyconutrients?

just received some info in the mail, and wanted to see if anyone has

first hand experience?

thanks,

bethany

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

[Guest guest]

Dear Bethany,

Funny you should ask. We have been going

back and forth on this for 3 months. Finally, we started Leanna on them about 2

weeks ago. I heard about them from a Christian friend that kept bugging me. I

am real skeptical about them. I am in contact with a nurse practitioner that is

guiding me through and we decided to try them. Dr. Boles told me that he did

not think they would make a difference, but would not hurt. We are desperate

and decided to try them. Expensive they are!! That turned me off because I was

afraid it might be a marketing scheme to rip off desperate parents. We figured

if it does not work, we only lost money and effort on Leanna’s part in

taking them. I added them to her mito

cocktail, poor baby like she needs more crap to swallow. I have been waiting to

see if they make a difference and hoping to share some good news with all of

you. I was told that you have to be on them at least 4 months to see any

diference so we committed to that. If they do nothing, at least we tried. I did

not like in the beginning that the company rep came off very strong. They seem

to think they can cure everything and are Too positive about them. In the

beginning I was so mad and yet broke down and put down the money. I was

wondering myself why I had not heard any mention from the mito group. Supposedly, they tell me there is

a little girl with mito

that had miracles happen to her from the glycoproteins. When I read the story,

I thought, “ if this is true, and this mom knows what we go through, why

doesn’t she inform all of us,” I asked the rep that I deal with to

get a hold of her. I want to talk to her. So far, I have not been given the contact.

If I had what happened to her happen to me , I would be shouting it everywhere

and to all mito

parents. I also do not like that they have sooo many products and want you on

all of them. Leanna is on ambrotose, glyucentials, gummies, plus ambrotose AO

and now the rep want s to add more. No more no way. How much can my 7 year old’s

body take? Leanna takes stuff all day long. I will try to keep you all posted

on it from my experience. Leanna was on it for about 2 -3 weeks and then got a

stomach flu last week with diarreah. She was IV’d at the ER for one day

and better now. I stopped all of the stuff for 5 days and now today am

restarting. I am skeptical, and yet desperate. The doctors have given us no

better alternatives.

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

From: bethanycarol

Sent: Tuesday, May 11, 2004 10:44

AM

To: Mito

Subject: glyconutrients

has anyone tried glyconutrients?

just received some info in the mail, and wanted to

see if anyone has

first hand experience?

thanks,

bethany

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

4

Please

contact mito-owner with any problems or questions.

[Guest guest]

I had a representative give me a call the other day regarding these

products. I told her I would look into it btu would not guarantee anything.

So now I am interested to see if these work or not. I already spend a

fortune on vitamins and meds now. Let me know if they work for u

Jenn

_________________________________________________________________

FREE pop-up blocking with the new MSN Toolbar – get it now!

http://toolbar.msn.com/go/onm00200415ave/direct/01/