gluconutrients

ErinsMommy

New member
On http://www.cff.org they say that they have recognized glyconutrients, they are looking more into it and doing research to see if it is a possible cure for cystic fibrosis. It obviously says to not do anything without consulting the CF team working with you or your child. My daughter was born 6-19-05. She has been going through absolute hell since the day she was born. She's had surgery for a blocked bowel (meconium ileus), feeding tubes, IV's, you name it. I hope to god that they will figure out this glyconutrients fast so that if it is a cure... my little angel, Erin, will stop suffering, and won't be affected by this disease at all.
 
Hi I just recently started taking Ambrotrose which is a Mannatech product. I have had many difficulties this past year after having a baby and am willing to try anything. I recently talked with a mother who has had her baby on it since she was 4 months old. She is currently 7 years old and doing wonderfully. She does no nebulized treatments. Her mother swears by it. I am not a Dr. so you may want to do more research. The products are pretty expensive, but the mother I talked with told me that there is a hope program that her daughter is on through mannatech that helps with the costs. Something to that effect. I would research on their website, www.mannatech.com. I also read about a study that was done by Mannatech where they had CFers take Ambrotrose and they results were pretty astonishing. 81% showed a decrease in Sympomts. 85% in dietary and 71% in lung. I also heard of other people that have had really great turnarounds with this product. According to the mother that I talked to there is no toxicity level so that is why it cannot be FDA approved.
 

miesl

New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>lovingBenandCambree</b></i>According to the mother that I talked to there is no toxicity level so that is why it cannot be FDA approved.<hr></blockquote>

This is just not true. Everything has a toxicity level. Also, that's not why the FDA won't approve it. It won't be approved due to the lack of a scientifically sound, peer reviewed (so on and so forth...) clinical study.
 

anonymous

New member
I just stumbled on this message board when researching fructose compoundingtrying to find information out there about this mineral binding process in vitamins published by someone other then the company I have heard it from. however, I read someone mentioning vitamins are a waste of money and if they were of any use then why dr.'s or anyone's dr. recommending it. It has come to my attention by a book written by a doctor that most doctor's are only educated in pharmacuticals and not nutrition. nutritional classes are electives in their program whereas pharmacutical classes are required, so most dr. are ignorant inregards to nutritional supplements. If you want to check out this dr.'s years of supplement use youcan read his book "what your doctor doesn't know about nutrition may be killing you" by Dr. Strand.
 

anonymous

New member
Bambi,
I notice the word <i>biochemistry</i> in parenthasis after Phd. I would just like to inquire if you've ever heard of <u>Harper's Biochemistry</u>. This is a very reputable resource for wellness and medical issues on the biochemical level. Check out chapter 56 on Glycoproteins if you get a chance. In 1992 a very reputable doctor, Dr. Bill H. McAnalley, was doing a study on the aloe plant as a step in receiving his Phd. In this study he discovered that the aloe indeed did not contain any substance similar to cortisone or lidocaine. This perked his curiosity and made him study deeper into the heeling components of the Aloe Vera plant. He did various tests and they revealed no known healing compounds or proteins. Well the doctor continued to compile data and began to investigate the sugars in the Aloe Gel. The principal functional component that McAnalley discovered is a complex sugar or polysaccharide called Aloe polymannose, or acemannan. This complex sugar is a natural, non-toxic polysaccharide responsible for many of Aloe's health benefits. Now comes the tricky part, the doctor had to stabalize an acemannan preparation to maintain its potency even while exposed to air. The aloe gel loses its healing capability rapidly after being exposed to air. There was an enzyme that also dwelled in the aloe plant that would break down the healing capability of the plant. The doctor eliminated the activity of the enzyme and this stabalized the complex sugar, acemannan. After this the doctor was able to patent this product and a laboratory named, Carrington Laboratories, marketed the product as MANAPOL. This was the early start of glyconutrients. See I'm having dificulty in listening to people like you claim something like this to be snake oil. Dr. Bill McAnalley is a very well known and reputable professional with several very impressive crudentials. He has also patented 150 different products including this one and all of them are well researched and proven to work in a several different cases in treating illness's underlying condition at the cellular level. The truth is that you cannot receive all your needed sugars throug our daily diets. Only 2 of 8 essential monosaccharides are found in our everyday diet. Glyconutrients can fill the void of the missing 6 monosaccharides. In order for cells to communicate and respond properly to unwanted matter that enters the body all 8 monosaccharides are required. A man this reputable and wellknown in the medical field wouldn't create a farse or as you call it 'snake oil'. Just a little info on the validity of glyconutrient products: Mannatech is the largest supplier of glyconutritional products. Many people claim 'snake oil' to this company because it is indeed a Multi-level Marketing Company. Mannatech takes this approach to selling their products because the FDA has not approved Glyconutrients. All of the research that has been done shows us simply that glycobiology is real and the effects of the product are evident in many cases all over the world. Check out www.mannarelief.org , www.glycoscience.org, and if you'd like just GOOGLE glyconutrients and there will be over 200,000 resources, some containing valid research and data that proves the effectiveness of these products. I've been researching glyconutrients for the passed year and I was a skeptic too. All the evidence points towards the fact that when taken Glyconutrients will increase the immune system's response and make for better living and long term Wellness. Please if you respond would you try to give valid info for your reasons behind the whole 'snake oil' theory. This new technology is a breakthrough in the Wellness industry, which by the way is the next TRILLION dollar industry, and you must use the product before you can judge the effects on the quality of life. You also must know the history of the field before you are to quick to judge the associates and user's by claiming a 'snake oil' theory. I am in no way a medical professional or a clinical specialist, but I know valid data when I see it and studied the body in several A & P college courses and Nutritional classes. I hope you continue to post and respond to the info that I have given you.
Mannatech User and Associate,
Bob G.
 

anonymous

New member
Bambi,
I notice the word <i>biochemistry</i> in parenthasis after Phd. I would just like to inquire if you've ever heard of <u>Harper's Biochemistry</u>. This is a very reputable resource for wellness and medical issues on the biochemical level. Check out chapter 56 on Glycoproteins if you get a chance. In 1992 a very reputable doctor, Dr. Bill H. McAnalley, was doing a study on the aloe plant as a step in receiving his Phd. In this study he discovered that the aloe indeed did not contain any substance similar to cortisone or lidocaine. This perked his curiosity and made him study deeper into the heeling components of the Aloe Vera plant. He did various tests and they revealed no known healing compounds or proteins. Well the doctor continued to compile data and began to investigate the sugars in the Aloe Gel. The principal functional component that McAnalley discovered is a complex sugar or polysaccharide called Aloe polymannose, or acemannan. This complex sugar is a natural, non-toxic polysaccharide responsible for many of Aloe's health benefits. Now comes the tricky part, the doctor had to stabalize an acemannan preparation to maintain its potency even while exposed to air. The aloe gel loses its healing capability rapidly after being exposed to air. There was an enzyme that also dwelled in the aloe plant that would break down the healing capability of the plant. The doctor eliminated the activity of the enzyme and this stabalized the complex sugar, acemannan. After this the doctor was able to patent this product and a laboratory named, Carrington Laboratories, marketed the product as MANAPOL. This was the early start of glyconutrients. See I'm having dificulty in listening to people like you claim something like this to be snake oil. Dr. Bill McAnalley is a very well known and reputable professional with several very impressive crudentials. He has also patented 150 different products including this one and all of them are well researched and proven to work in a several different cases in treating illness's underlying condition at the cellular level. The truth is that you cannot receive all your needed sugars throug our daily diets. Only 2 of 8 essential monosaccharides are found in our everyday diet. Glyconutrients can fill the void of the missing 6 monosaccharides. In order for cells to communicate and respond properly to unwanted matter that enters the body all 8 monosaccharides are required. A man this reputable and wellknown in the medical field wouldn't create a farse or as you call it 'snake oil'. Just a little info on the validity of glyconutrient products: Mannatech is the largest supplier of glyconutritional products. Many people claim 'snake oil' to this company because it is indeed a Multi-level Marketing Company. Mannatech takes this approach to selling their products because the FDA has not approved Glyconutrients. All of the research that has been done shows us simply that glycobiology is real and the effects of the product are evident in many cases all over the world. Check out www.mannarelief.org , www.glycoscience.org, and if you'd like just GOOGLE glyconutrients and there will be over 200,000 resources, some containing valid research and data that proves the effectiveness of these products. I've been researching glyconutrients for the passed year and I was a skeptic too. All the evidence points towards the fact that when taken Glyconutrients will increase the immune system's response and make for better living and long term Wellness. Please if you respond would you try to give valid info for your reasons behind the whole 'snake oil' theory. This new technology is a breakthrough in the Wellness industry, which by the way is the next TRILLION dollar industry, and you must use the product before you can judge the effects on the quality of life. You also must know the history of the field before you are to quick to judge the associates and user's by claiming a 'snake oil' theory. I am in no way a medical professional or a clinical specialist, but I know valid data when I see it and studied the body in several A & P college courses and Nutritional classes. I hope you continue to post and respond to the info that I have given you.
Mannatech User and Associate,
Bob G.
 

miesl

New member
Ahhh, where to start.

>>He has also patented 150 different products including this one and all of them are well researched and proven to work in a several different cases in treating illness's underlying condition at the cellular level.

Ahh, but where is the study on THIS medication for THIS disease? Quite frankly, I don't give a rat's behind if this cures cancer. I want to know if it will help cystic fibrosis. You have no proof. Therefore it is all conjecture and supposition. This is not good science.

>>The truth is that you cannot receive all your needed sugars throug our daily diets. Only 2 of 8 essential monosaccharides are found in our everyday diet. Glyconutrients can fill the void of the missing 6 monosaccharides. In order for cells to communicate and respond properly to unwanted matter that enters the body all 8 monosaccharides are required.

And this is why our bodies manufacture them for us. If these were essential in the diet and we weren't getting them... we'd all be dead. Therefore, we must be able to synthesize them. Furthermore, this means that they aren't essential in the diet and you are bending the truth to the view you desire. This is not honest.

>>Just a little info on the validity of glyconutrient products: Mannatech is the largest supplier of glyconutritional products.

That should make me trust you MORE? That makes me trust you less. If this were the miracle you claimed, other people would be trying to get a bigger market share.

>>Many people claim 'snake oil' to this company because it is indeed a Multi-level Marketing Company.

Yes, because multi-level marketing just reeks of "scam."

>>Mannatech takes this approach to selling their products because the FDA has not approved Glyconutrients.

I still haven't gotten a good answer on the double-blind placebo trial yet. Plus, that statement alone makes your company sound like the little kid in the sandbox who throws sand in someone's face because they wouldn't let them use the shovel. "But moooooooom, he wouldn't let me use the shovel!" "Well that's no reason to do something you know you shouldn't"

>>All of the research that has been done shows us simply that glycobiology is real and the effects of the product are evident in many cases all over the world.

Poison is real too. Flushing your money down the toilet is also real. I'm not however suggesting that it's a good idea to try it. Just because something exists, doesn't mean it's a good idea. Please, stun me some more with your lovely logic. Case studies are inherantly flawed. They are the stepping stone to actual research, not the research itself.

>>Check out www.mannarelief.org , www.glycoscience.org, and if you'd like just GOOGLE glyconutrients and there will be over 200,000 resources, some containing valid research and data that proves the effectiveness of these products.

And if I already have and found the information to be sketchy at best, what am I to do then? Wait for the study that will never be done?

>>I've been researching glyconutrients for the passed year and I was a skeptic too.

You've got a bit of hook in your mouth now.

>>you must use the product before you can judge the effects on the quality of life.

So, by that logic... I should try hemlock and judge that it's a poison.

>> I am in no way a medical professional or a clinical specialist, but I know valid data when I see it and studied the body in several A & P college courses and Nutritional classes.

And that means that you know it's valid data? A few A&P courses? Right. Valid data = placebo controlled, double-blind study. Get me one of those and we'll talk.
 

anonymous

New member
For you the glass will always be half full.

Raise about $400 million for an independent double blind study and be part of the solution. It's up to you.

I've seen the products work wonders with CF children.

John
 

seasprite

New member
"The CF Foundation has previously invited Mannatech to submit a grant application so that a scientific clinical trial of glyconutrients in people with CF can be conducted. To date, Mannatech has not submitted an application. Therefore, the CF Foundation cannot responsibly recommend that people with CF use Mannatech products, or other glyconutrients."

So why is Mannatech not rushing to design a well-controlled study that could demonstrate the value of its products, when the CF Foundation would be willing to provide the necessary funding through its grants program?

The placebo effect can be very powerful. But the effects can be harmful, as well as helpful, even when "natural" supplements are involved. Some of us are unwilling to entrust the health of our loved ones to a product that has not been adequately tested and that makes no sense scientifically.

Bambi
 
All I can say and you can all put what you want about what I have to say is that I have had the fight of my life over the past year and a half. I decided to try these products due to the fact that at the rate that I was going I had nothing to lose. I have been on ambrotose for just about a month and I have never felt better. My oxygen saturation is almost to the point where I no longer need it and I actually go through the day playing with my baby without lugging oxygen around. It has been amazing. I hope that my PFTS have come up as well but if not I at least feel better and to me that is an amazing feat.

Emilee with 2 E's
 

seasprite

New member
Hi Emilee,

It's great that you are feeling so much better. I can totally relate to your trying the ambrotose if you felt you had nothing more to lose. But although your improvement could be due to the ambrotose, it could also reflect some other (coincidental) change in your life or even conceivably the power of suggestion. Please don't take that as a criticism. We're all much more suggestible than we think. Studies have consistently shown that about one-third of people get better when given a placebo (or fake treatment), even in cases of major illness.

That's why it's so important to test the ambrotose under well-controlled conditions -- so that other people with cf, who may have a great deal to lose, can make an informed choice about whether or not this is something likely to help them. Why do you suppose Mannatech seems unwilling to do such a test? Such a study should not take all that long if any therapeutic effects of the ambrotose are as swift and dramatic as you have experienced. And contrary to John's claim, a double-blind, controlled trial should <u>not</u> cost $400 million, but less than 1/100th that much. At any rate, the CF Foundation is willing to pay for it. It makes no sense for Mannatech not to take up the Foundation's offer unless it suspects that the results may not be in its favor.

But if the ambrotose seems to work for you, by all means keep taking it. And I hope your health will just keep getting better.


Bambi
 
Bambi,
I absoulutely agree with you that there should be a study done. I don't understand why it isn't being done. I am also leery that it is a fortune 500 company. As for the Placebo affect. I am well aware of what that is. I do have to say that if suggestion is the reason... I would have felt better at a much sooner time than just recently. As for coincidental changes, last year alone I went in the hospital 6 times and it wasn't until I started this that I have been ablet to stay out for such a long period of time. I can only go by experience in stating that it has helped me. I completely understand the skepticism. I to am quite a skeptic, but when things are starting to get a little mundane and it seems that nothing is going to get you out of the rut you have found yourself in you begin to look for other things that the medical professionals just don't talk too much about. My Dr. would tell me "well I just have to scratch my head. I don't know what else we can do for you." Comforting let me tell you. Thank you for the comments on my health. I do appreciate it. Good luck with your child as well.

Emilee
 

anonymous

New member
My son has been on the products for 1 year and we've wonderful results. Bambi-we respect your opinions but until you try them please understand they are helping some CFers. Our pulmonologist said they will not hurt you. If he had a child with CF he would definitely try them. He also said that they have passed the trials that show the side effects and they are safe.
 

miesl

New member
They may not *hurt* you but they might not help you. In which case, you are spending money on something that doesn't work, while you could be spending that money on something that WOULD.

The burden of proof is on the company. They are unwilling to apply for a CFF grant. This is HIGHLY suspicious. Most logical answer - they know they are selling something that has little to no effect, and they would lose whatever business they are getting now. If they KNEW they had a good product, they WOULD have this study done ASAP - since it would mean endosement from the CFF, and a heck of a lot more people buying product.

When there is a GOOD SCIENTIFIC study that proves effectiveness for CF patients, I'll give it a try.
 
I believe that if it wasn't working people would see that for themselves and be smart enough to quit taking the stuff. Those who do take it are not stupid and the effects that they see obviously are worth the money that they are spending or they wouldn't be taking them.
 

Emily65Roses

New member
Oh man. *sigh* Okay!
If you want to spend your money and take this stuff, fine. Good for you.
If you don't want to spend your money and take this stuff, fine. Good for you.
Are we done now?
 

seasprite

New member
To Anonymous posting at 6:32 AM,

I wonder if you could ask your pulmonologist what his source of information is regarding the safety of gylconutrients? I certainly haven't been able to find anything demonstrating safety in the peer-reviewed medical literature. And Mannatech itself has acknowledged that no studies have been done to document the safety or effectiveness of its products in anyone, much less in people with cystic fibrosis (see my earlier posts). Those who wish to take the risk of using untested dietary supplements are free to do so because Congress passed a law in 1994 that virtually gutted government regulatory power over these products. But, as <u>Consumer Reports</u> put it, "users are playing roulette with their bodies--and there's a chance they'll make a big mistake." Think of the young people who died after taking ephedra as a "natural" weight-contol supplement. Indeed, the May 2004 <u>Consumer Reports</u> identified 12 "natural" supplements that had already been identified by government and medical experts as being too dangerous to be on the market but that were still readily available both online and in retail stores, "including chaparral, comfrey, germander, and kava, all known or likely causes of liver failure".

Of course, there are always risks with any medication, even the ones that have passed regulatory screening. But with the medications my son does take, we can look at the published side-effects profile and decide whether the cost/benefit ratio is one we're willing to accept (Pulmozyme, yes; ibuprofen, no). We can't do that with the dietary supplements <u>because the manufacturers don't have to provide the relevant evidence, and most of them don't</u>. So the bottom line is, buyer beware.


Bambi
 

anonymous

New member
Bambi-Thank you for all of your opinions and research information. I get your point and maybe someday you will understand mine. Right now what we are doing is working beautifully and I have all of the confidence in the world in our physician. Our next appointment is in September, I'll make sure I ask him where he got his info.
 

anonymous

New member
I completely disagree with you. In this day and age we need certain glyco-nutrients in our body that is essential for healthy living. 90% of all prescription and other drugs just supress the symptoms when we are ill and does not find the cure to it. I would suggest you go to:

www.mannatech.com and www.glycoresearch.com before you tell others natural fruit and veg is enough. Sorry to disappoint u but it isn't. Especially since we do not know what we are eating nowadays with all the G.M food about.

I've heard from many sources that the Mannatech products have helped many people get better from being ill as we are indeed missing the right nutrients for our body in everyday life. Scientists have finally found the missing link. I urge you and others to look at the websites above.
 
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