Re: Alternative Treatments / Mannatech

[Guest guest]

I'm going to go out on a limb here and respond to and Wendi's

posts. But first, I want to say I'm a normal, sane person with an

avid inquiring nature, keeps an open mind, positive attitude and

healthy skeptism.

In a recent private email, Torsten said he'd vouch for the sane part

if anyone questioned who this person was suddenly popping up on CF

Parents list. I've known Torsten several years (in fact we've mailed

sand back and forth because his wife and I are probably the only

people whose hobby is collecting sand from around the world!).

Anyway, wrote that she checked out Mannatech's site and

decided it was bs because the company is a multi-level marketing

company. And she decided if their claims were true then we'd all be

using Mannatech's products and all CF problems would be solved.

First, I want to say I've *never* used or bought Mannatech's products,

and I've never belonged to any MLM organization.

However, I have gone to the Mannatech site and printed out their

product information so I could look at it more closely. I wonder if

did the same before writing her response to Wendi?

If had done her CF homework, then she might be a lot more

enthusiastic about the ingredients listed in Mannatech's products.

Note: I did not say " more enthusiastic about Mannatech's products, " I

said " the ingredients listed in Mannatech's products " because I am not

writing this email to promote the use of any " product. "

Rather, I'm writing to encourage you to familiarize yourself with the

exciting studies being conducted at respected major universities and

research facilities around the world.

And I also urge you to take a good, long look at your currents methods

of caring for our CF children, and ask " Is this working? " If not, then

you've got a lot of learning to do. It's too easy to fall into that

comfortable mode believing that " If my doctor doesn't recommend it, or

doesn't know about it, then it probably doesn't work. "

That's BS. And that's what 's BS barometer should be telling

her.

Okay, back to Mannatech's products, specifically, let's first look at

the Phyt-Aloe. If you read the ingredients, why would you think this

product isn't helpful to health? One Phyt-Aloe capsule contains:

--Phyt-Aloe complex (490 mg.:

Broccoli

Brussel sprout

cabbage

carrot

cauliflower

garlic

kale

onion

tomato

turnip

papaya

pineapple

--Ambrotose ® complex (50 mg.)

Naturally occuring plant saccharides including freeze-dried aloe vera

inner leaf gel extract-Manapol ® powder.

The Phyt-Aloe complex is a beautiful listing of some of *the* most

nutritiously beneficial vegetables and fruits known to us. Why would

anyone think this is bad?

Papaya and pineapple are rich in magnesium--and enzymes that help

digestion. Tomato is rich in lutein and antioxidants. Carrot is high

in vitamin A and beta carotene. Kale is high in magnesium and

antioxidants. Garlic is a powerful natural antibiotic and possesses

blood-thinning capabilities so it's useful for problems associated

with the heart. Broccoli, brussel sprouts, cabbage, garlic and onion

are all high in sulfur and antioxidants.

Did you know that it is the sulfur bond on the CFTR that misfolds, and

there is anecdotal evidence that a diet high in sulfur-rich foods

ameliorates effects seen in CF?

A mother by the name of Estelle Nash, living in Australia, studied to

become a Naturopath solely to help her three children with CF. She

devised a diet rich in foods containing sulfur and omega-3 essential

fatty acids. Her son Murray, whose health was the worst, credits that

he is alive and well today thanks to his mom. She juiced brussel

sprouts and had him drink it daily; Murray's health improved to the

point he is medication-free. And even though it took the longest to

clear up, his digital clubbing went away. At last account, Murray is

still in good health (he's in his 40's).

Last January, after we got sputum results showing my son was suddenly

culturing Stenotrophomonas maltophilia and Aspergillus fumigatus, I

was scared enough to try just about anything to " fix " him. His doctor

decided not to treat these two organisms, and I knew that I didn't

want to treat them with steroids and harsh antibiotics.

So, I spent nearly 16 hours a day for three days studying and learning

as much as I could about what a healthy body needed and studying

alternative therapies. Thank God I belong to a couple caring, focused

CF research groups--of which Torsten is also a member. And thank God,

my son trusted me to light the way.

Within a couple days I started on a diet rich brussel sprouts

(his roommates attested that he ate brussel sprouts at least three

times a week; they'd come home and smell them cooking!). He started

drinking Langers Cranberry-Grape juice. This is a 100% juice, no

sugar, and it has magnesium, coenzyme Q10, and grapeseed extract

added.

I also did A LOT of research about magnesium deficiency and

hypothesized that my son was magnesium deficient. When there is

magnesium deficiency, the body is more acidic and bacteria and fungus

thrives in an acidic environment. Research has noted that CF lungs are

more acidic than normal lungs.

I questioned his doctor about magnesium deficiency, but he pretty well

shot me down. But I persevered in my research and discovered that two

medications -- aminoglycoside antibiotics such as Tobramycin and

albuterol -- depletes magnesium. If fact, one hour after inhaling

albuterol your magnesium levels fail to return to pretreatment levels.

was taking a biology class last spring and needed a research

topic so he chose himself. His hypothesis was that supplementing with

magnesium AND doing tea tree essential oil steam inhalations would

kill off the aspergillus in his lungs.

April 10, he had another sputum culture and this showed *no* S.

maltophilia, *no* aspergillus -- and his mucoid form of PA was not

sensitive to all antibiotics for the first time. Additionally,

had gained weight, he was no longer pale, and tired. He'd regained his

energy, stamina -- AND, yes believe it -- his digital clubbing and

nailbed color had improved.

feels the following helped him:

--Magnesium, which balanced the pH in his lungs, making it a more

inhospitable environment to bugs

--MSM, a naturally occuring sulfur

--Supplements, foods and beverages rich in omega-3 essential fatty

acids, flavonoids, and sulfur

--Essential oil inhalations (this is *not* the same as nebulizer

treatments!)

Back to Mannatech's Phyt-Aloe. Personally, I wouldn't have a problem

giving this supplement to my son or recommending it to others. But,

why would someone spend $35.50 for the capsules, or $44.00 for the

powder? One reason is if they don't like eating those foods listed

above. Or if they want to see enhanced health benefits by eating the

foods AND taking the supplements.

In my humble opinion, the may very well produce excellent healthful

benefits for people with CF. In any case it wouldn't harm unless you

happen to be allergic to one or more of the ingredients.

One other thing is the aloe vera that Mannatech touts. You've no doubt

heard of aloe's benefits for burns. Some people keep an aloe plant in

their kitchen just in case of burns. We've always kept some aloe vera

sunburn gel in the refrigerator because it feels so wonderful and

soothes a sunburn. But yes, you can ingest aloe -- and why is it

helpful? Because of its anti-inflammatory properties.

And if you know anything at all about CF, then you know the very

harmful effects of inflammation and that the ongoing goal in CF

research is to find ways to stop inflammation! By goodness, why do you

think there is so much hoopla over the beauty of Zithromax? It's

because it reduces those harmful inflammatory effects seen in CF!

Most of us think about only CF and lung inflammation. How many of you

pay attention to intestinal inflammation -- or do you believe that as

long as you give your child enzymes then intestinal inflammation isn't

a problem?

Wendi mentioned another Mannatech product, but I don't have an opinon

on it (aren't you happy!) simply because the ingredient label is

obscure; they don't really say what's in it.

However, I looked at another product called Glycentials, which appears

to be Mannatech's version of a vitamin/mineral tablet. As someone who

has always given her children a multivitamin/mineral since babyhood,

and has studied health and wellness FOR YEARS -- I will tell you that

I'm impressed with the Glycentials. They obviously did their homework

and put a lot of conscientious thought into human physiology and

cellular mechanics. The cost is prohibitive though, $44.00 for 120

tablets and they recommend taking two tablets, twice a day. Ouch.

My son currently takes many of the things listed in the Glycentials,

with the exception of aloe. But who knows... maybe we'll add that if

ever we see the need. Until then, I'm happy with the plan currently

working for him. He's actually taking more natural supplments than he

is " CF " meds!

Bottom line: like Torsten said it's too bad Mannatech is an MLM.

People won't take the time to seriously consider the benefits of the

ingredients in their products.

And yes -- glycoproteins, saccarides -- this is all very hot research

stuff right now. There are international conferences devoted to

researching glycoproteins so it's not some buzzword that some crazy

MLM made up to impress you.

If you knew someone that sold Mannatech and would give me a great

discount, then I'd probably buy it to give , because let's face

it, no one is going to remember to eat brussel sprouts, broccoli,

cabbage, and carrots every day unless they've got a mom putting it on

the table in front of them. And I think that's why was so

healthy growing up -- we grew most of our own vegetables and had

plenty on the table every single day.

Kim

Mom to 23 with asthma and CF and , 20 with asthma no CF

I have been reading the posts about herbs and alternative

treatments. Has anyone tried, or heard of the Mannatech line of

products? They specialize in glyconutrients. I had a gentleman at the

company I work for approach me about these products. He then put me in

touch with a CF mother in Texas, who absolutely swore by these

products. Because of this line of products, her daughter no longer

need enzymes or CPT and all in all CF was no longer a part of their

daily lives. I was a little weary, this sounded too good to be true

and like a heck of a sales pitch to me. The products are fairly

expensive (in my opinion). The woman in Texas said to stick with it a

year and you should see amazing results. Does anyone know anything

about these products? The products he suggested for my daughter

was, ambrotose and phytaloe.

Thanks!

Wendi mom to Peyton 2 yrs wcf

[Guest guest]

Hi Kim,

WOW, what a message! Compared to Ron's usual diatribe about Mannatech

this was Fine Arts.

But maybe I should clarify something for the newbies. Kim is " in the

business " for 23 years, she has quite a brain and since her kids are

grown up she has the time to bring it to good use. So don't feel

desperate if you found it confusing. What I do often with Kim's

messages is to print them out and read them on a rainy Sunday

afternoon with a large pot of tea beside me.

Thanks Kim for taking the time to put these info about healthy

supplements together.

Peace

Torsten

[Guest guest]

Torsten wrote:

>What I do often with Kim's

>messages is to print them out and read them on a rainy Sunday

>afternoon with a large pot of tea beside me.

I usually print them out and read them with a bottle of wine!

But you are so much more civilized than I am Torsten!

-Lenora

P.S. I am confused (so what's new) Ron mentioned that the moderator

of the cfparents list is a Mannatech representative, but I thought

you were the moderator, Torsten. I don't care, really, I like the

list and I think diversity is the key to our success, but I was

curious.

--

http://www.lenoradegen.com

CYSTIC FIBROSIS AWARENESS WEEK is OCTOBER 13 - 19, 2002!

[Guest guest]

Torsten wrote:

>What I do often with Kim's

>messages is to print them out and read them on a rainy Sunday

>afternoon with a large pot of tea beside me.

I usually print them out and read them with a bottle of wine!

But you are so much more civilized than I am Torsten!

-Lenora

P.S. I am confused (so what's new) Ron mentioned that the moderator

of the cfparents list is a Mannatech representative, but I thought

you were the moderator, Torsten. I don't care, really, I like the

list and I think diversity is the key to our success, but I was

curious.

--

http://www.lenoradegen.com

CYSTIC FIBROSIS AWARENESS WEEK is OCTOBER 13 - 19, 2002!

[Guest guest]

Torsten wrote:

>What I do often with Kim's

>messages is to print them out and read them on a rainy Sunday

>afternoon with a large pot of tea beside me.

I usually print them out and read them with a bottle of wine!

But you are so much more civilized than I am Torsten!

-Lenora

P.S. I am confused (so what's new) Ron mentioned that the moderator

of the cfparents list is a Mannatech representative, but I thought

you were the moderator, Torsten. I don't care, really, I like the

list and I think diversity is the key to our success, but I was

curious.

--

http://www.lenoradegen.com

CYSTIC FIBROSIS AWARENESS WEEK is OCTOBER 13 - 19, 2002!