Don't Fall For the Snakeoil!

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Mike27

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Hi folks, I've had ALS since about '93 and I've seen just about every "cure" going.

Recently I've noticed a resurgence of Mannatech going around saying they have the new therapy in the form of vitamins or some nutritional supplement.

I'm here to tell you, don't fall for it! I've seen some PALS waste hundreds and hundreds of dollars on Mannatech, for nothing.

This is a pyramid scheme that will make all sorts of claims. If they come to you, simply ask them "Which medical standard published Mannatech's findings?" Answer? None!

These dirtbags prey on people at their most vulnerable moments.

Whew! That felt good!

Cheers all!
 

Al

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Thanks Mike for the information. We are all here to try to help each other and if someone thinks a scam is going on let it out. Most of us would eat dog dirt if someone said it would cure us. We need more ,been there ,done that, and it was bogus people to speak up. Just in the past week I have read on other posts 3 people that have undergone the controversial Dr. Houang (spelling?) treatment come out and say it's not working. $30 grand and it doesn't work. I'd be pretty upset. I'd be telling everyone about it. Maybe I'd feel foolish for falling for it but desperate times call for desperate measures. He has been doing it for quite a while now and the recipients of the therapy have been strangely silent. Now they are starting to speak. This dialogue is good. We need to know which therapies and trials are working or making us worse.
Keep up the good work.
 

fotiostzimas

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I can understand when PALS speak with enthusiasm,because I made mistakes too.I tried many things without positive results.I am upset that the older Pals and Cals didn’t warn me from the “SHARKS” until Rama and Dave opened my eyes.I’m thinking of those who will be diagnosed from now on.
Someone just diagnosed with ALS,the doctors will tell him that he has an incurably disease. He will read everywhere about this horrible illness.
Than somebody will tell him about ‘Eric is winning’, Dr.Lee, Kurosava, the holy man from Brazil, Dr Hager.. and all the others.
What do you think, he don’t belive them? I tell you he will. Than the next year he will find out, that they only made a fortune out of him.
Sorry, for making the prophet, but I am sure about them. I will be the happiest man on this world , if they proof to me that I’m a liar.
Geia hara
 

Mike27

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Hi guys,
Al, you're exactly right when you say "desparate times". Some of the salesmen (and women) I've dealt with rely on that to make a fortune.

I helped start the ALS Chapter here in Edmonton and a few of them tried to get on the board. I guess to get a foothold on a market. We figured out what their intentions were pretty quick and asked them to leave.

Fotiostzimas, I agree! I hope they make liars out of us!

Cheers!
 

PALS Mike

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I'm presently supplimenting my diet with Glyconutrients (since 11/11/2004).

They DO NOT promise a cure!
Never Have.
Glyconutrients provide the body with nutrients that are missing from our modern day diets.
There's a tonne of 3rd party Glycobiology research information out there supporting Mannatech's theories.

I gotta tell you...Since starting Glyconutrients, I've noticed quite a few POSITIVE changes in my overall health.
I won't lie...I've had some physical changes (walking slower, speech is more slurred) but...
I was diagnosed in June 02 and I'm COMPLETELY Med FREE!
and I feel great!

Anybody who's been diagnosed with a terrible disease wants that 'magical cure'...
There is no magical cure but time and change of lifestyle.
You hafta find what works for you.

You wanna talk Snakeoil, let's talk Riluzol...
 

fotiostzimas

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I don't know Riluzol,but I do know Rilutek.My doctor gave it to me , after I was diagnosed with ALS. I read about RILUTEK, that it would enlarge my life about 2-3 month. I took it for about 2,5 month. At that time I recognized, that the disease was proceeding faster and it was very bad for my immune system. So I decided to stop it.
RILUTEK for my person, is real "snakeoil".
My health incurance pays more than 500$ a month for RILUTEK. I told them , as long as I live, to give that money for ALS research.
Let's see what will happen.
Geia hara
 

PALS Mike

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Riluzol(e) and Rilutek is the same drug
 
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Mike27

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Re:

I'm presently supplimenting my diet with Glyconutrients (since 11/11/2004).

They DO NOT promise a cure!

Never Have.

Glyconutrients provide the body with nutrients that are missing from our modern day diets.

There's a tonne of 3rd party Glycobiology research information out there supporting Mannatech's theories.

I gotta tell you...Since starting Glyconutrients, I've noticed quite a few POSITIVE changes in my overall health.

I won't lie...I've had some physical changes (walking slower, speech is more slurred) but...
I was diagnosed in June 02 and I'm COMPLETELY Med FREE!
and I feel great!

Anybody who's been diagnosed with a terrible disease wants that 'magical cure'...
There is no magical cure but time and change of lifestyle.
You hafta find what works for you.

You wanna talk Snakeoil, let's talk Riluzol...
Oh please! Every website I’ve seen related to glyconutrients are the same…
They start with the “miracle” story and end with how to buy them (of course, they’re not prescribed or available in health food shops) AND, as always, the big opportunity to sell them to your friends! Can you say pyramid?

If you feel they work for you and you can afford it, great! But those of us who are a little wiser with our funds, won’t be fooled. What I am against is salesmen approaching people at their lowest point and making vast, miraculous claims.

BTW, which medical standard published Mannatech’s findings? Just wondering.
 
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fotiostzimas

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Don't get my wrong,
Research - yes
Clinical trials - yes
exchange - yes
enthusiasm - yes
experiments - yes
freedom of speech - yes

false hope - ?

Geia hara
 

fotiostzimas

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If they tell me,
the air I breathe, or the water I drink, or the food I eat , I need it,
I say yes,

If they say they can cure ALS, 'maybe', 'you can try', 'that's not sure', 'I don't promise anything', 'it's your decision',
I say Liar.

I will call them a liar until they proof to me, that I am a liar.

Geia hara
 

Mike27

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You’re right, PALSMike, I do have a problem with Mannatech. I watched them fleece a good PALS friend of much needed money. You’re also right that they don’t definitively claim a cure…but their wording is very attractive to one in dire needs.

For me, I have taken vitamins every day for 11 years, which was recommended by a Montreal Neurologist, and they’ve worked fine.

I think we’ll agree to disagree on this, I don’t wish to argue with you. Life’s too short!

BTW, your website is very cool! Despite the link to Mannatech…(little parting shot, can’t let a Calgarian get away without one!) :D

Cheers, mate!
 

dwight

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Stem Cell Research/ Glyconutrients/ Mannatech

I see now that in this forum there has been string of discussion re: Mannatech and glyconutrients, spearheaded in the negative corner by mike27, which explains his not replying to my post about his question re: new stem cell research. If you ignore something long enough, maybe it will go away ...

I request at the outset of this long message, from those who will choose to read it to the end, for your patience and objectivity, and thank you ...
in the interest of a balanced perspective.

So that you know who I am, I do not have ALS myself. A co-worker has been on longterm disability for several years with what he has been told is early ALS. I happened upon this forum while searching for information regarding the glycobiology of ALS. (Some of you might want to look down this road ...)

It is now known, although not currently widely known in the scientific and medical communities, that adding enough glyconutrients to one's diet causes the proliferation of endogenous (the body's own) stem cells. That means that your body begins to make lots of them. Research to validate this is presently underway and, as time moves forward, it will be known beyond the circle of those who are privileged enough to appreciate Mannatech for what it is.

Regarding the assertion that those in Mannatech are just out to sell something that doesn't work, it is immeasurably unfortunate that that has been Mike27's experience.

I do understand how the efforts of some sharing the message of Mannatech could be viewed as an attempt to make a quick buck on someone's misfortune ... (in my long experience with this company, that is not what is on the heart of the vast majority of people who are involved with Mannatech)

To that I would respond with an excerpt from my all time favorite poem, Desiderata:

Excerise caution in your business affairs, for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals and everywhere life is full of heroism. - Desiderata

The negative perspective of Mannatech displayed by mike27 is exacerbated by people who may have tried it but did not use enough of it for a long enough period of time and then proclaim to all who will listen that the stuff doesn't work.

Edmonton's former Chief of Staff of the Royal Alex Hospital (mid 1980's), Dr. Alex Omelchuk, who now travels extensively to lecture about Mannatech's glyconutrients, says this about those who are too quick to judge:

"Condemnation without investigation is the height of arrogance"

A recent past President of the Royal Society of Medicine, Dr. John Axford, focuses his research on the glycobiology of disease and hosts international, annual conferences of the world's top glycobiology researchers. Dr. Axford also travels internationally to speak for Mannatech, initiated by his request to the company to do so. Is he too, caught up in this menacing sales force called Mannatech?

The very first time any information about the role of 8 necessary biological sugars (glyco) appeared in a medical textbook was in 1996 - Harper's Biochemistry. The author of that information, a retired MD and PhD biochemistry professor from Toronto - Dr. Robert. K Murray - also travels extensively to lecture about Mannatech's technology, and openly admits to using it for himself and his family. Hmmmm.....

Hopefully one day before it is too late for you, Mike27 - and those you have deterred from doing their own investigation- the medical evidence you need to irrefutably validate the role and importance of glyconutrients will be presented to you from a more acceptable source.

All new science that was not at first understood by established medical dogma was first ridiculed, and then resisted, before being accepted as fact. Examples include handwashing to control spread of germs; the Pap smear; and Louis Pasteur's germ theory (ridiculous fiction, it was called) The list could go on ...

Yes the Mannatech glyconutrients can be expensive, especially if you don't share the message with others, and with ALS you would likely need to take a lot of it - long enough to make a difference.

To be clear, in no way, shape, or form do I imply a cure for ALS or any other disease.

Let me point out that the drug industry so many are pinning their desperate hopes on is unabashedly profit motivated. Consider this statement, from the Medical Technology Stock Letter, about a glycobiology research biotech company: (This statement is in response to a question about how the company is able to post such high profits) GENZYME's primary business strategy is to provide expensive products for rare diseases.

If you were to listen to Dr. McDaniel's presentation on <www.glycoradio.com> today Saturday, April 30/05 (it was late getting going Thursday by about 50 minutes) you will hear him talk towards the close, about a major glyconutrient research project by - I believe he said it was a neurologist, and at a top US university - I will have to listen more closely about that today starting at 11 PST on glycoradio to be sure.

Mike27, I do not expect that adding my words to the discussion would make a difference to someone like yourself with a mind already made up that Mannatechers are a nefarious bunch.

Nevertheless, I extend to you an invitation - since I too live in Edmonton - to step outside of your box to meet with me, on your terms. Perhaps, if you will allow yourself, you will tentatively begin to realize even the slightest possibility that - just maybe - there is another perspective to Mannatech and that you have missed seeing it in your haste to discredit it.

Anyone who wants to do their own investigation about a health technology that could make a difference, please contact me. I don't expect you to take my word for it, and I would encourage you to due your own due diligence.

Enough said.


Dwight Wells
Edmonton, Alberta
 

dwight

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Stem cells/Glyconutrients/ Mannatech (cont.)

Yes the Mannatech glyconutrients can be expensive, especially if you don't share the message with others, and with ALS you would likely need to take a lot of it - long enough to make a difference.

To be clear, in no way, shape, or form do I imply a cure for ALS or any other disease.

Let me point out that the drug industry so many are pinning their desperate hopes on is unabashedly profit motivated. Consider this statement, from the Medical Technology Stock Letter, about a glycobiology research biotech company: (This statement is in response to a question about how the company is able to post such high profits) GENZYME's primary business strategy is to provide expensive products for rare diseases.

If you were to listen to Dr. McDaniel's presentation on <www.glycoradio.com> today Saturday, April 30/05 (it was late getting going Thursday by about 50 minutes) you will hear him talk towards the close, about a major glyconutrient research project by - I believe he said it was a neurologist, and at a top US university - I will have to listen more closely about that today starting at 11 PST on glycoradio to be sure.

Mike27, I do not expect that adding my words to the discussion would make a difference to someone like yourself with a mind already made up that Mannatechers are a nefarious bunch.

Nevertheless, I extend to you an invitation - since I too live in Edmonton - to step outside of your box to meet with me, on your terms. Perhaps, if you will allow yourself, you will tentatively begin to realize even the slightest possibility that - just maybe - there is another perspective to this Mannatech menace, and that you have missed seeing it in your haste to discredit it.

Anyone who wants to do their own investigation about a health technology that could make a difference, please contact me. I don't expect you to take my word for it, and I would encourage you to due your own due diligence.

Enough said.


Dwight Wells
Edmonton, Alberta
 

mannco74

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Fire fighter

Nice to have another fire fighter. Dwight. You bring so much more to the fund raisers. When were you diagnosed? I know a former police man from Edmonton, Don and his friends added greatly to the walk. You will probably see Mike there.
 

Mike27

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Hi Dwight;
Haven’t been on this site for a few days which is why I didn’t reply to your research query. I’m not ignoring you.

I’ll start by giving one of your quotes:
"Condemnation without investigation is the height of arrogance"
Yet, here you are condemning my view! Hmmm..

Your post is very good! chock full of quotes, snide little shots at me and the claims!…now you say that Mannatech can rebuild stem cells?

Dwight:
adding enough glyconutrients to one's diet causes the proliferation of endogenous (the body's own) stem cells. That means that your body begins to make lots of them.
I would ask why hasn’t this been released to the general public? Or is it for those who, as you say:

Dwight:
are privileged enough to appreciate Mannatech for what it is.
As for Dr. Omelchuk, Dr. Axford and Dr. Murray, who pays their fees? Would it be…Mannatech? Perhaps Dwight could enlighten me.

You also state:

Dwight:
Yes the Mannatech glyconutrients can be expensive, especially if you don't share the message with others, and with ALS you would likely need to take a lot of it - long enough to make a difference.
What? “especially if you don’t share the message with others”, can I gather from this that if I get on board with Mannatech, and become a sales rep, I can cut the cost of my glyconutrients? Am I accurate or do you mean something else altogether? Please clarify.

Dwight:
I extend to you an invitation - since I too live in Edmonton - to step outside of your box to meet with me, on your terms. Perhaps, if you will allow yourself, you will tentatively begin to realize even the slightest possibility that - just maybe - there is another perspective to this Mannatech menace, and that you have missed seeing it in your haste to discredit it.
Yeeeah, that’s gonna happen! Thanks Dwight, you’re probably a very nice man (despite the numerous insults you sling) but I think I’ll take my medical advice from a neurologist, not a salesman.

Hopefully I’ll see you at The Walk For ALS in June, as a fundraiser, not a salesman prowling for clients.

Cheers!
 
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