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We use some of the mannatech products. Our cf nutritionist has said that our

son's vitamin levels look good and everything, so she has encouraged us to keep

using them. We have talked personally with some families with children with CF

who have used the products and had great success. I have also talked to one

person in his 20s who tried them and didn't have much success. He is also very,

very sick so that could have contributed. Anyway, mannarelief is planning to

start a study specific to children 6 and older with CF. They provide the

products for 1 year at no cost and the family has to fill out a weekly or

monthly thing. They work with a dr on their staff and I think also with your

child's dr. My son is not old enough for the study or we would definitely try

it. My friend is trying it. Her little boy is 8 or 9. She talked with our doctor

about it and he gave it his blessing. Obviously its not a cure, but if there is

something out there that would improve the quality of life for people with CF I

think it is worth a try. The one downfall I see is that it is so darn expensive!

Anyway, hope this info helps you as you make your decision.

Amy

Does anybody know about mannarelief.org ?

A few months ago a non cf woman, I think she was one of their sells

people, wrote to me. At the time I was highly offended, I felt she

was a predator, I really did, but at that time I was very vulnerable,

too. At any rate are their claims true or is it just another way of

getting vulnerable people like me sucked in. Actually, their web

site is sort of scary, it reminds me of some sort of cult, I do not

know why I get that feeling, I hope I'm wrong. Any comments would be

appreciated...

mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf