glyconutrients

[CFlat]

Has anyone used glyconutrients or is it just a fad? If so what has been your experience and how old do you have to be? Just looking for some insight, I have not heard anything about this until I came across the website.

Thank you,
Chuck

Avery 20 mo. w/cf
Rhett 3 mo. carrier

 

[anonymous]

I heard its a big hoax. I actually just recieved an email yesturday on it. I can send it to you if you give me your email address. Mine is sam001@charter.net. If you'd rather not post yours you can email me and I'll forward it to you. Becky in mich

 

[Mockingbird]

Glyconutrients have been around for a long time. They're nothing new. Some people report having better health after taking them, but they are nowhere near the miracle pill they claim to be. I say, if they're not that expensive, then talk to your doctor and try them out. If I remember right, though, they are expensive, though, so it might not be worth it, especially if insurance doesn't cover them.

Jarod
22 w/cf

 

[anonymous]

I tried them for awhile with no benefit but a huge dent in my finances. They say they have many people with Cf who began taking it and no longer need any medication/treatment. there cf has just gone!!. Same old same old - if it's so good why does it cost a bloody fortune and why is it multi level marketing. Of course people are going to push something they make money out of. If I came up with something soo beneficial to people with a life threatening illness and would shout from the rooftops and make it affordable. PILE OF HOGWASH, tHATS WHAT i THINKS!!

 

[seasprite]

"Glyconutrients" are pretty much the same as sugar pills -- that is, if they seem to work, it is because of the placebo effect. All the sugars that your body needs are easily obtained from the carbohydrates you get in plant foods. Please do not waste your money on sugar-based supplements.

Bambi Young, PhD (biochemistry), mom of Jordan, 16 w cf

 

[anonymous]

Thank you for bringing up this topic. We have a little 7 week old bub who was diagnosed with CF a few weeks ago. Since then I have been researching everything & have just started researching these and must admit are a little sucked in by how wonderful they sound. Obviously good nutrition plays a big part in staying healthy, but it seems there must be alot of money to be made in selling this product which is a bit of a worry as you must wonder where their interests lie. Becky if you wouldn't mind, could you please email me the info you have to thedons@bigpond.com

Thanking You
Donna - Sydney Australia
Saxon 7 weeks old wcf

 

[anonymous]

How long were you on glyconutrients?

 

[anonymous]

Hi my name is Rebecca.

I've been taking glyconutrients for almost 4 years and the do make a difference, a huge difference if given enough time and product.

MannaRelief (www.mannarelief.org) is a non-profit organization that help medically fragile children recieve glyconutrients at a reduced cost. Without MannaRelief I would have never been able to take glyconutrients.

I made a website about my life with CF - www.freewebs.com/cflife

Right now I'm working on getting my own domain and putting a website up with all my CF info (what exactly I do for my CF).

I'm spreading the good news of hope and help!

Rebecca Elias
chooselife828@gmail.com
(204)325-5518

 

[Allie]

Glyconutrients are a scam, people, sugar is not going to make you better. think about this logically. Trust me, even logical people have been sucked in, but don;t be one.

 

[anonymous]

This is a total scam. Be careful of anyone responding as a so called CF patient. You never know who is behind the type. Cf patient is bogus

 

[Ratatosk]

Saw on another website, they were targeting families of people who had ALS. Scam, preying on people looking for hope when diagnosed with a disease.

 

[Ratatosk]

Here's the link regarding from the CFF site on consumer alerts.

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/news/consumer_alerts/index.cfm?ID=7033&blnShowBack=True&idContentType=1207">http://www.cff.org/news/consum...rue&idContentType=1207</a>

 

[anonymous]

Its not a scam. I'm familiar with it as I've taken up for like 8 months. Do they work? I think they've helped some. From what I hear it can take a long time to work. Its like rebuilding your immune system. I may or may not continue after a couple more months. I would really like to see more improvement from my respitory system. What I can pretty much guarantee is that you will see digestive improvment. I'm down from 5 ultrase with meals to only 1.

They do recommend for cf that you take other mannatech products, such as Plus (which contains L-arginine) and manna cleanse (good for the colon and digestion) as well as Phytonutrients which are a great way to supplement fresh veggies at their healthiest state.

Anyway, my verdicts not out on the products, but I definitely don't think its a scam. It has worked for lots of other people, especially so with other diseases. They never claim to do anything for ALS. Whatever site, that came from it was totally bogus. I do know people who have improved ms symptoms and some who have been cured of cancer.

John

 

[anonymous]

John,

"I do know people who have improved ms symptoms and some who have been cured of cancer" - give me a break!!! SCAM SCAM SCAM Call the National Enquirer if they have been cured of cancer because of a sugar pill, because that is huge news. Heck forget the National Enquirer, call the CBS Evening News with Katie Couric - I'm sure she would love to do a story on your friend that was cured of cancer. BTW, do you work for Mannatech?

 

[anonymous]

"John" the post was on healthboards. Someone was inquiring for a friend of the family who had ALS. Apparently a family member was told it could help them, possibly cure them. Liza aka ratatosk

 

[anonymous]

CFF Consumer Alert update:

<a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/news/consumer_alerts/index.cfm?ID=7033&blnShowBack=True&idContentType=1207">http://www.cff.org/news/consum...rue&idContentType=1207</a>

 

[anonymous]

I also know doctors who recommend glyconutrients. The only reason for the consumer alert is because glyconutrients have not been approved by the FDA. The CF foundation is going to say that about any unconventional therapy. They have to say that sort of thing to protect themselves. Besides, I don't thing the FDA bothers with things that aren't drugs.

I'm sure in some news outlets have done stories on glyconutrients.

I'm sorry about the person who as told to take glyconutrients for ALS, but glyconturients are sold through multilevel marketing so you can't control what one salesperson says.

Almost everyone who uses glyconutrients can sell them. I would recommend them for people to try, if they have the money, but as yet, I have sold zero, and am not interested in selling at this point.

This is just my experience with the stuff, I'm not trying to scam anyone. So friends told me about them so I tried.

John 26w/cf

 

[anonymous]

Here's more of what I know about glyconutrients and cf:

Most of the stories I hear of success involved teens and children with cf. I believe I have only heard of 1 adult with significant improvement in FEV1 from taking glyconutrients. His name is Andrew Desjardins. You can google him and find out more about him. I think Desjardins FEV1 improvment was something like 10-12 percent.

I think it is more effective in children because in most cases cf is less severe and in many cases the bacteria, such as pa, has yet to colonize in the lungs. That being said, I do believe the stuff probably benefits the immune sytem and will make a child more healthy going into adulthood. I know I would like to have tried them as a teen especially since they are available to children under 18 at a very reduced cost, through manna relief.


John

 

[anonymous]

I had not read the new cf consumer alert on glyconutrients. Thank you for posting it. This is a much more thorough statement than the previous one issued about a year ago.

John