Glyconutrients...

[ErinsMommy]

I was unsure about this when I first heard it. I first heard about them shortly after Erin was born but doctors... nurses... didn't know anything about it really and I knew that scientists were looking more into it. Now it is posted on cysticfibrosis.com

81 out of 95 respondents to the survey (85.3%) indicated a change in clinical symptoms after the introduction of glyconutritionals into their diet. 72.5% reported improved lung symptoms, and 81.1% reported improved digestive symptoms - this is very significant, since these are the two areas of most concern with CF patients.


Is anybody using them... what are your opinions on it?

 

[anonymous]

What is it? I never heard of it.

 

[anonymous]

Lindsay,

There was a huge thread done on this a while back. Personally, I have started doing them and I truly feel that they have saved my life. I feel it is the reason that I am currently off oxygen which i haven't been off of for over a year. If you want to email me about it we can chat. There are a lot of people that are against them. It is definitley a personal decision. I didn't really have much to lose so I thought what the heck and it really does seem to help. I can tell when I haven't had them. If you can't find the thread let me know and I will try to find it for you. It is definitely a big debate. Good Luck<img src="i/expressions/face-icon-small-smile.gif" border="0">

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Loving ben and cambree
Emilee

 

[anonymous]

I paid the fortune they cost and took Ambrotose and others for 3 months. I didn't feel any different, still needed IV's and sinus surgery and now have bronchiectasis. They say I should have paid to continue taking them for longer. I also wonder when a company rep said that a family with 3 CF kids began taking it and the kids now have no med's or therapy. I feel they pray on vulnerable people who are willing to try anything. If it was soo good, if it was cheaper more could afford it and they would still make a fortune. Why so expensive!!
Good luck to anyone who it works for but I don't think it will stop the progression of the disease. Believe me when I say Iwanted it to work sooo much but I can't say it helped a bit.
Sorry

 

[ehtansky21]

My 18 month old has been on these products since being in the womb. We actually are provided the products through Mannarelief which makes the cost a lot less, since his diagnosis in December. They have specific products set up for cfers. We have seen such a change in his bowel movements and energy since starting on the products that Mannarelief is providing. Please e-mail me...I have lots of hints on the easiest ways to administer it and what to watch for to make sure Erin is getting enough or not too much and how to get in touch with Mannarelief
heleadsmyway@cox.net

 

[anonymous]

will someone tell me more about this? What is it? Who makes it? How do you take it? What is the purpose? Very interested. Thanks!

 

[anonymous]

Hello

This is my first time chatting. My name is Mayra and my 2 year old daughter Emma has CF. Emma has a hard time gaining weight. She takes Creon-5 enzymes and Zantac. I'm very interested in learning more about the Glyconutrients. I couln't find the last thread on this through.

Can you give me more info. Thank you so much!

 

[CFHockeyMom]

Here's what CFF has to say about them...

<a target=new class=ftalternatingbarlinklarge href="http://www.cff.org/news/consumer_alerts/index.cfm?ID=5293&blnShowBack=False&idContentType=1207">CFF and Glyconutrients</a>

I'm suspicious. Perhaps if there were any more data other than their own testimonials. Here's a link to a discussion that took place here some time ago...

<a target=new class=ftalternatingbarlinklarge href="http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=3138&FTVAR_MSGDBTABLE=">Previous gluconutrients thread</a>