gluconutrients

miesl

New member
Ahhh, it is nice to have another scientist around who agrees with me. I've looked at the glycoscience website before, and was throughly unconvinced.

Give me a double blind, placebo controlled study. Then we'll talk.
 

anonymous

New member
Thanks, Miesl. I don't remember seeing your posts before, but hope you'll keep contributing. Are you part of the cf community?

Shirley:

OK, I went to glycoscience.org and did a search for cystic fibrosis. The most relevant information I could find was a paper called "Glyconutritionals: Implications in Cystic Fibrosis". This was published in "GlycoScience and Nutrition", which purports to be a journal, but in fact appears to be little more than promotional material put out by Mannatech and its paid associates (real journals do not contain only one article per issue, with the same handful of people showing up as the authors on all the papers). Much of the research this paper cites was also published in "Glycoscience and Nutrition". The authors acknowledge that "there are, as yet, no studies in individuals with cystic fibrosis". What substantive citations the paper does provide either summarize the pathobiology of cystic fibrosis (nothing new) or refer to "numerous published studies [that] attest to the biological activities of mannans and other carbohydrates". No question about that. And the CFTR protein is, in fact, a glycoprotein (that is, a protein, with bits of sugar-based compounds attached to it), as are a great many other membrane proteins. So what? Where is the evidence that eating sugars different from the ones we already get in our food will have any impact on the glycosylation pattern of CFTR or any aspect of physiological function in cf? It sure isn't on the glycoscience.org website, as the authors themselves acknowledge. All I see is pure speculation, and not very compelling speculation, at that.

Furthermore, although you do not seem to be aware of it, Mannatech is, in fact, currently being sued for fraud and invasion of privacy by the mother of a Tay-Sachs child whose picture has been used without her consent and whose case history has been misrepresented in Mannatech promotions, despite her requests that these promotions be halted. The case was filed November 1, 2004, in the Superior Court of the County of Los Angeles. You can read the complaint at <a target=new class=ftalternatingbarlinklarge href="http://www.mlmwatch.org/04C/Mannatech/complaint.html">http://www.mlmwatch.org/04C/Mannatech/complaint.html</a>.

I suspect you sincerely believe that the products you are promoting will do people good. But I assure you the evidence really isn't there. (And yes, I am a scientist, as indicated in my first post on this strand.) There is a long history of people arguing that "it just makes sense" to take various dietary supplements to "boost our immune systems" or provide extra antioxidant power. That's what was said about high doses of various vitamins for decades. But now that the results of controlled trials have come in, it appears that, for most people, too much of even water-soluble vitamins can cause more harm than good.

Please try to remember that the people on this site (as well as on other sites dealing with chronic illnesses) are already overburdened with enormous medical expenses. They really can't afford to be sidetracked into taking expensive sugar supplements for which there is no evidence of effectiveness (or safety) in cf.

Sincerely,

Bambi, mom of Jordan, 16 w cf
 

anonymous

New member
Bambi -

Thanks for all of your insight. I must admit that my thinking was what harm can these sugar supplements do. If it helps my son eat better or get more nutrition then why not at least try it? It might end up being a waste of money if there are no improvements but I don't think it can hurt?

Mannatech is supposedly coming out with some "research" specific to CF later this summer. If and when this happens maybe we will give it a try. I was very leery about this company to begin with since they are just another pyramid marketing company - If these product are so revolutionary then why don't they have real research to back this up. There is more research on acupuncture then glyconutrients.
 

CFHockeyMom

New member
I agree with miesl! Why don't any of these "supplements" do a double blind, placebo controlled study? All they refer to is their own research and testimonials.

Our CF clinic repeatedly issues warnings to all of their patients to stay away from cures, supplements, etc. that have not been part of a double blind, placebo controlled study. I know it's tempting when you read the testimonials/"research" but honestly if it worked don't you think your Dr. (or at least someones Dr.) would prescribe it?

That said, it probably won't do any harm so if it makes you feel better, go ahead and try it.
 

anonymous

New member
To the original poster --

Yeah, you're right, there is reasonable research to support the use of accupuncture for the treatment of some kinds of pain. If you're tracking the research that Mannatech says it will be doing related to cf, please let us know when any results appear, so we can all check them out.

Thanks,

Bambi
 

miesl

New member
Bambi - I just don't tend to post very often (although, since I'm currently looking for work, I'm around a bit more often). My live-in boyfriend of two years is a CFer.

If/When Mannatech puts out some CF info, I'll read it. I read everything I can. I'm not dismissing the possibility out of hand. I just don't like how this company is portraying its products. Plus, this ( <a target=new class=ftalternatingbarlinklarge href="http://www.drweil.com/u/QA/QA326651/">http://www.drweil.com/u/QA/QA326651/</a> ) is interesting. It's a Q&A question posed to Dr. Weil about glyconutrients. This particular doctor LIKES to have people take a more natural approach to health, and he's advising people to be "triply suspicious" of the glyconutrients craze.

At worst, a supplement can do damage. In the middle, it'll just cost me lots of money for a placebo effect. Best case, it will do some actual good. I'm just not willing to risk the health of ANYONE to case A) or B) - CF meds are expensive enough as it is, just for the hope of finding a case C).

THAT is the duty of the people selling it. Hardcore, statistical evidence. I want a well designed study. I want double blind. I want to know what the placebo effect is. I want to read about the experimental conditions. I want to see it in a respectable peer-reviewed journal (AJM). Surely, if it is the breakthrough it is claimed to be, this shouldn't be a problem. Without these things, all there is are case studies, which are confounded by x and y other variables.

If I were to confound an experiment with excess variables when I was working in the lab, guess how much those results would be worth... Nothing. Without statistics, it's all speculation.

I don't speculate with my or my loved one's health.
 

anonymous

New member
Bambi,

After yesterday, I decided I wouldn't post anymore in this forum, because as I said I don't have a child with cf. I thought I should at least come back and state that fact and also see if you had replied to my post. I read your reply to me, and you bring up some valid points.

I went over to glycoscience.org as well and found the article you reviewed. I also found an article that addresses the "double-blind, plecebo controlled study" aspect as used with food or supplements, entitled, "Why are There so Few Double-Blind, Placebo-Controlled Studies on Natural Products?."

Unlike you, I am not a scientist, but it's important to me that you receive a response that is thorough and accurate; therefore, I've decided to turn it over to my husband, Hal, because, of the two of us, he is the one with the greater understanding of the science behind the products.

Please be patient. It will be a few days before he can get back to you via this forum.

Sincerely,
Shirley
 

anonymous

New member
I was the original mom that posted this so I wanted to let you know what my son's pulmonologist told me and what we've decided. The Dr. told us it WILL NOT hurt our son and if he was in our shoes why not try. We realize that it contains the 8 essential sugars that you can get from food. However, when appetite and food consumption is a problem we are turning to this. He also said that he had done extensive research on it and it is in the third trial. Maybe someday we will know more, for now we are going for it. I realize there are some of you that disagree and I respect your opionion, please respect mine. Because some of you have never tried it, I'll let you all know in a few months. Wish us luck since we are all hoping for something that will help our situation. We realize it is not a cure but we are hoping for increased appetite and weight gain.
 

anonymous

New member
I have my 4 year old on these products, through Mannarelief, which pays for most of them. The lady I got them through is Sharon Thomas, and she swears they helped her with MS. This is what she wrote:

Dear Jennifer,



Mannatech does not do double-blind placebo studies. They are very costly to do and they would then be denying part of the group access to the products that would help them. The Fisher Institute has dozen case studies involving a number of patients that were taking the glyconutrients and showed that they all got good results. They measured things like better digestion, thinner mucous, better quality of life, etc. I believe I sent you those studies already.



Your doctor (and my MS doctor) has not been trained in this are, so it is quite natural for them to be skeptical. There are a lot of papers written on glyconutrients. They are taught pharmaceutical drugs and surgery and they operate under Standard of Care guidelines. Since this is natural and not considered medicine, it doesnt fall into that classification. We believe it will become Standard of care sometime.



My doctor knows I am taking glyconutrients and she does see the good results. She now says, Youre doing great! Keep on doing what youre doing. For myself, I know I am better than I have been in 30 years. I will never stop taking my glyconutrients.



A web site your doctor can look at is www.glycoscience.org. It is color coded for lay people and medical people.



Im so glad Maya is on the products. Let me know how she does.



God Bless,



Sharon Thomas


I do not see a difference yet, my daughter is 4 and pretty healthy. I will let you know if she continues to culture staph. Thanks!

Jen
jenirein@yahoo.com
 

ehtansky21

New member
My recommendation to the original mom....
Get your son on the ambrotose ASAP. That is what will kick in his immune system and should help in warding off some of the yucky CF crap. Then start him on the sport. That has worked wonders on my 16 month old. We have not had to increase his enzymes for a while and he seems even more happy than he was before (which I did not think was possible). My only advice is, don't give it to him before naps or bedtime. It gives you an energy boost.
I put both the ambrotose and sport in plain yogurt with his ADEK liquid and he eats it great. Also yogurt and applesauce works well too. if you have any questions, i can try to help. my email is heleadsmyway@cox.net
Hope that helps,
ethan sky's mom
 

anonymous

New member
Hello everyone,

I stumbled onto this discussion purely by accident. Glad I did. I don't have CF; I have had Multiple Sclerosis for 5 years and heard about "Ambrotose" about 4 years ago. I didn't actually start trying it until 2 months ago. Like many of you, I am VERY hesitant about anyone coming to me with an unknown "cure-all". Someone with MS told me about Ambrotose 4 years back, my response was...(pat pat on the head)....."Okay, thanks I'll look into it"..... I have heard of and been told by many people about many things that will "do wonders for me". So I blew this one off too.

I heard about Ambrotose again after my cousin had a C-section and her incision was still open and infected a year later. After trying EVERYTHING, she tried Ambrotose. IT WORKED!!! It is now completely healed with no problems. That's when I decided, what the heck to I have to lose??

I have been Ambrotose for two months now, and I feel better than I can ever recall. My energy has returned and I have stopped taking other medications for my fatigue. I am a flight attendant, and now seem to outlast the rest of my crew....and they don't have MS!! :)

I am not a doctor, I am NOT a distributor, and I am VERY hesitant of holistic medicine....all I know is how I felt before and how I feel now. I will let you all decide for yourselves. Hope this helps.....take care everyone!

Jodie
 

anonymous

New member
Julie,

Sorry to veer off topic, but I'm wondering how you and your hubby keep the expenses down, especially on the Boost Plus shakes. This is one of the very few "foods" my son will gulp down. We buy the vanilla Boost Plus shakes because of the protein, fat, and calories. Have you found somewhere that you can buy them in bulk? I usually buy them at Target or Wal-Mart and they run around $1 a can. I'm guessing if your hubby has a bunch of these, it really adds up, right (tax deduction or not). Any suggestions?

Carey <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
S

SeasonsOfLove

Guest
Carey,

I laughed when you mentioned Boost - I have a funny little story. A few years ago, Colleen was on a Boost drink kick and it was really adding up - so I wrote to the company explaining how hard it was to buy so much Boost from a financial standpoint. When the firm wrote back, they enclosed a $1.00 off coupon! Coll & I had a good laugh over the coupon amount!

Take care everyone,
 

JazzysMom

New member
To Carey:
The Social Worker at my CF clinic recently gave me a whole bunch of coupons for $1.00 off 4 packs of Boost. She has also given me vouchers to get back $10.00 of my copay for my Ultrase enzymes next time I fill them. Be sure to ask what your office might have. They receive a lot from companies and if they dont have it, they can ask the representatives.
 

cfmomma

New member
we save money by buying the store brand. My son can't tell the difference, for all I know it may taste nasty. Buying in bulk like at a warehouse ,sam's, costco, etc.. helps. I don't know what I'd do without Boost, it has been a lifesaver!!!
 

anonymous

New member
Thanks for the replies, Kathy and Jazzy.

Kathy, I had a good laugh over your "big savings" coupon. <img src="i/expressions/face-icon-small-smile.gif" border="0"> They probably didn't read your letter and really grasp how MUCH Boost Coll was drinking. lol. $1? Woo Hoo!

Jazzy, thanks for the tip. We actually just switched clinics, so our next CF visit will be here in Las Vegas! I'll ask the social worker for tips/coupon ideas. We'll have to do the tax deduction thing this spring too. It adds up fast, doesn't it?

Thanks again for the tips....I'm on my way to mix up a cocktail of instant breakfast, milk, & Miralax now. mmmmm. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Cheers,

Carey
 

anonymous

New member
Bambi, I am interested in your position on another company called Melaleuca and their supplements. What do you know about them?
 

anonymous

New member
Bambi,

I am interested in your position on another company called Melaleuca and their supplements. What do you know about them? I have heard alot about fructose compounding and how it benefits people by getting the vitamins and minerals to the cells and would like your opinion.

sassy
 

seasprite

New member
Hi Sassy,

Interesting question, -- but before I saw your post, I had never heard of Melaleuca or fructose compounding. Fructose compounding does not come up at all when you do a Medline search (covers all the journals available through the National Library of Medicine) or a Google Scholar search. I went to the Melaleuca website and, but it didn't tell me much beyond the fact that it is marketing vitamin and mineral supplements "formulated with our revolutionary Fructose Compounding mineral delivery system designed to help improve the absorption of vital minerals". As someone trained in biochemistry, I can't imagine why fructose would improve absorption of minerals, which are pretty small and generally absorbed into cells without much effort. I would be open to checking out any research to the contrary if it were available. Unfortunately, the only thing on the Melaleuca website that might provide some evidence for the company's claims of superior absorption appears to be a booklet that you can't see if you're not willing to pay for it. Have you seen the booklet or any of the information in it? I'd be happy to check out any factual explanation that you've got.

Meanwhile, several things make me nervous about the company's approach to marketing. If what I've read on Google is accurate, sales involve a pyramid scheme, which seems to be a favored strategy for many suspect products. On the Melaleuca website, directly under the statement about the "revolutionary Fructose Compounding mineral delivery statement" is the disclaimer, "This statement has not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease." This disclaimer is a tip-off. Translated, it means, "We don't really have much evidence for what we just said." In addition, I can assure you that although Melaleuca makes a big deal about men and women needing different vitamin and mineral supplements, it just aint so. And the Meleuca supplements are outrageously expensive. Costco sells a good, well-balanced vitamin and mineral supplement (that appears to be more complete than what Melaleuca has to offer) at $9.99 for 350 tablets. Melaleuca's 30-day Vitality Pack costs more than twice as much for 1/10 the content.

I hope this helps. Let me know if you find out any more.

Bambi
 

JazzysMom

New member
My sister has tried all the Melaluca (sp?) products. She highly recomends the salve & ointment for everything. As far as vitamins, detergents etc. she would compare the quality to the same as what you can get over the counter. It is, however, suppose to be all natural &/or biodegradable etc. I also had a friend that was interested in becoming a salesman/representative for the company, but it takes time & other peoples sales to make the $$ they promise just like many other companies.
 
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