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perc500
03-08-2007, 10:50 AM
Hello I am new here. I think we all need as much information as possible
I have been on prednisone for a year or more. I went all the way up to 50mg daily and now I am down to 5mg I had gained my weight back and felt better on high doses. now I fell pretty good except for the swelling and pain... I was thinking about taking something other then what I have been taking. It is time to get off the prednisone... Has anyone had success with Glyconutrients????? Has anyone had sucess with natural type medication or vitamin's??

eefell
03-08-2007, 06:01 PM
I had someone approach me a couple of weeks ago about Glyconutrients. I'm going to talk to my Dr. about it. Do you know anyone who has had success with them?

MARYCAIN
03-08-2007, 07:16 PM
Guys, if anyone approachs you offering to sell you "glyconutrients" - this is a scam. Please don't waste your money. The company that markets these products, Mannatech, is under investigation by a half dozen states and the Federal Trade Commission, and is the subject of class-action lawsuits in Australia, the UK and Canada. The
"glyconutrients" are nothing more than sugars, and if you are eating a healthy and balanced diet with plenty of fruits and vegetables, you are getting all the natural sugars you need in your diet. There is no valid medical research showing that these products have any beneficial effect at all. The "doctor" who promotes these products is employed by the company that makes them.

Please do not get the impression that I am against alternative or "natural" medicine - I am all in favor of it. Unfortunately, for every legitimate alternative therapy, there are a dozen scams trying to take advantage of people's desperate need. It's despicable and gives the entire concept of alternative medicine a bad name. That's why it's so important to do your research. There are many legitimate and useful complementary therapies. But there is no miracle cure for lupus, and anyone who promises one is lying. There are many therapies which can help you manage your symptoms and have a better quality of life - they cannot cure the disease.

Your basic common sense is your best defense against a health care scam. If a product claims to cure every disease known to man, or says it will cure a disease in a short period of time with absolutely no side effects, or that it is "100% natural drug free" - steer clear - all these are warning bells. A product that sounds too good to be true usually is too good to be true. And there are dozens of "fraud" products on the internet, mostly targeting diseases where modern medicine doesn't have much to offer. So you may have to do a lot of research to separate the legitimate products from the scams.

eefell
03-08-2007, 07:50 PM
That's pretty interesting info. The guy that told me about it has a 2 year old with cancer and they've seen a big improvement in her condition since she's been taking them. That made me very interested in it. We've known him for about 10 years and he's pretty trustworthy. Where did you find your info. I'd like to do some more research on it.

Thanks again !

MARYCAIN
03-08-2007, 09:09 PM
Just do a websearch for "Mannatech" and you will come up lot of information. There are other companies which have jumped on the glyconutrient wagon, but Mannatech was the original marketer.

You can find information on the "Quackwatch" website - http://www.quackwatch.org/index.html

The National Council against Health Care Fraud (www.ncahf.org) has sixteen articles about Mannatech.

Mannatech is being sued in California because some of its promotional materials included the photo of a child it claimed was helped by the use of Mannatech products, even though the child had actually died. You can read the complaint at
http://www.mlmwatch.org/04C/Mannatech/complaint.html

There's quite a bit more information available, but I think the fact that when you google "Mannatech" it offers you a choice of "mannatech fraud" and "mannatech scam" to narrow your search results pretty much shows the company's reputation. Here is some information specifically about glyconutrients from the U.C. Berkeley Wellness Letter, an impartial and well-respected review of dietary supplements.

Glyconutrients

Claims, Benefits: Enhances the immune system, and treats a wide range of medical conditions, from diabetes and high cholesterol to psoriasis, and multiple sclerosis.

Bottom Line: There’s no convincing evidence to support the claims.

Full Article, Wellness Letter, January 2006:

Q. Can so-called “glyconutrients” boost immunity and cure illness, as claimed?

A. There’s no convincing evidence that these supplements enhance the immune system, let alone fight AIDS, colitis, diabetes, high cholesterol, psoriasis, multiple sclerosis, or any other medical condition.

Sold primarily by the supplement manufacturer Mannatech under the product line Ambrotose, glyconutrients contain eight monosaccharides (that is, simple carbohydrates, or sugars). Mannatech alleges that because of soil depletion and overprocessing, our diets are lacking in all but two—glucose and galactose—of these sugars.

You may be surprised to know that sugars are not just “empty” calories but do, in fact, play an essential role in many biological functions, including cell-to-cell communication and immunity. There’s actually an emerging and important field of science, called glycobiology, which explores the function of carbohydrates in health and disease. But glyconutrient marketers take a big leap when they say that consuming sugars in supplements has health benefits.

First, we are not deficient in any sugars. Our bodies are able to convert the sugars in foods (such as fruits and vegetables) from one form to the other forms as needed. There is no evidence that toxins, stress, drugs, or other factors interfere with the conversion process, as the marketers claim. Nor is there evidence that relying on our bodies to create the sugars instead of ingesting them in food or supplements causes any problems.

Marketers provide long lists of studies that supposedly support the use of glyconutrients for all kinds of medical conditions, as well as for general health. But these are unpublished conference presentations, anecdotes, and lab or animal studies, or they are from obscure journals of questionable reputation. We could find no well-designed research showing health benefits of glyconutrient supplements. Don’t waste your money on these expensive products.

Keep in mind: Glyconutrients are sold primarily via multilevel marketing. If you buy the product, you can become a distributor and then sell it to your friends and relatives, who sell it to their friends, etc., with profits passing up to the top of the pyramid, at least in theory. Such marketing often involves questionable practices and dubious health claims. Indeed, Mannatech is being sued by investors on such charges.

UC Berkeley Wellness Letter, January 2006

_________________________________________--

As I mentioned, there's a lot more information out there. And while I don't want to discount your friends' experience, if his child had cancer I assume she underwent conventional treatment too. So is it possible that his child went into remission and her health improved regardless of these products?

Edited to add: If you can locate it in your public library, I would recomend reading a May 9, 2005, article in "Barron'" detailing numerous allegations against Mannatech, which caused its stock value to decline sharply and led to several invester lawsuits against the company.

Missy
03-08-2007, 10:16 PM
I am wholeheartedly in agreeance with MaryCain.

If you are interested in natural/alternative therapies, please consider acupuncture and seeing a licensed Naturopathic Physician. Your insurance might even cover it in some states! Any good Naturpath will be happy you are using both Western and alternative therapies to control Lupus.

Before taking supplements, consult a naturopath. They can help sort out the vitamin, herbs, and supplement questions. I always also told my Western docs what supplements I was taking.

Good Luck!

perc500
03-15-2007, 07:45 PM
So after looking at this post go ahead and post what type of Vit.. or
the success with natural remedies? Has anyone keep on a high
antioxidant diet?? or juices to help?