Re: Does anybody know about mannarelief.org ?

[Guest guest]

They are planning a study of glyconutrients I think is what they call

them.They are trying to see if it improves cf'ers health thru nutrition and

maintaining certain levels of nutrients in the body so less need for extra

supplements.BeckyB

[Guest guest]

We are doing this and we have noted good results with Pattimae (2 wcf) so far.

I was also skeptical when approached with this by some friends when she was

first dxed. It took me two years to finally decided to try the products. If

you want you may email me in private and I'll try to answer any questions that

you may have. And no, I don't sell the stuff.

Dawn mom of 4, 7 and under, the youngest wcf

Does anybody know about mannarelief.org ?

A few months ago a non cf woman, I think she was one of their sells

people, wrote to me. At the time I was highly offended, I felt she

was a predator, I really did, but at that time I was very vulnerable,

too. At any rate are their claims true or is it just another way of

getting vulnerable people like me sucked in. Actually, their web

site is sort of scary, it reminds me of some sort of cult, I do not

know why I get that feeling, I hope I'm wrong. Any comments would be

appreciated...

mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf

[Guest guest]

Still don't know the answer to these questions. I have, though,

finally enrolled in one of their studies. I hope he gets

accepted. It's hard because we have had our hopes up so many times

only to be awakened to the fact that we are " prey " . We would find a

million dollars if we needed in order to buy health for our children,

but to think that some people would actually take advantage of this

is so frightening.

At least the study will finally clear up scientifically if there is

benefit in their products and I commend them for doing this.

Also, of course, it will provide the nutrients, etc. for free, which

is right up my alley!

Lenora

>A few months ago a non cf woman, I think she was one of their sells

>people, wrote to me. At the time I was highly offended, I felt she

>was a predator, I really did, but at that time I was very vulnerable,

>too. At any rate are their claims true or is it just another way of

>getting vulnerable people like me sucked in. Actually, their web

>site is sort of scary, it reminds me of some sort of cult, I do not

>know why I get that feeling, I hope I'm wrong. Any comments would be

>appreciated...

>

>

> mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf

>

>

[Guest guest]

,

Mannarelief.org is a non-profit organization that provides the

Mannatech supplements to children with serious health conditions and

to children who are orphans. In order for the child to receive the

supplements, a $120 per month sponsorship is paid, with a six month

commitment to the program. (This is way, WAY less than the retail

cost of the supplements that they provide.)

Mannatech is the company that sells the supplements that Mannarelief

provides in its program. The woman who contacted you was almost

surely a Mannatech representative, not a Mannarelief rep. To see

info about the products, see http://www.mannapages.com and to see the

mannarelief site, see http://www.mannarelief.org

I am an associate, but haven't made any money selling the products.

Guess I'm just not cultish enough! Many of the associates believe

fervently in the products they are selling, so they do often come off

as sounding a little frenzied. Many of them also use the

word " awesome " frequently, which in itself makes me a little uneasy.

My five year old son with cf is taking supplements from Mannatech.

(He takes Ambrotose, Phytaloe, Glycobears, Sport, and Mannacleanse.)

The one thing that has improved greatly with him is his digestion

since taking Mannacleanse. He takes three of the Mannacleanse pills

each day. Before taking them, he was taking 4 to 5 Pancrease MT4

capsules with meals and snacks, and sometimes still had loose

stools. Now he takes two Pancrease MT4 capsules with meals and

snacks, and his stools are perfect. He still coughs, he still has

cf, he still has nasal allergies, he still asks ten-thousand

questions each day, but his digestion is much better than before

taking the supplements.

My son's cf doctor knows he's taking these supplements. The

nutritionist at the cf clinic has a product information sheet for

each supplement that my son is taking. They have no objections to

him taking mannatech products. Consult your child's doctor before

buying anything. The mannatech website has product info sheets that

you can print out and take to the doctor to review. If your child

takes ADEKs or another high-potency vitamin supplement for cf, make

sure the doctor reads the product information sheet for Glycobears

before letting your child have it - it has Vitamin A in it. You

don't want to overload your kid by giving two vitamin pills that

duplicate ingredients.

If your child is having digestion or weight-gain problems, it might

be worth it to try the Mannacleanse pills (if your child can swallow

pills.) I have heard that other people have had tremendous results

with the other supplements, too, but we haven't seen this in our son,

so the Mannacleanse is the only product that I can vouch for.

There are probably several Mannatech representatives on this list

that can sell the supplements to you, or you can buy them directly

from the Mannatech website without going through a rep. Also, there

are often mannatech supplements available on Ebay, if you are

inclined to go that route. I am skittish about feeding my kid

anything that was purchased through an auction, but I just wanted to

let you know that this is an option.

You are right to be skeptical, especially when someone approaches you

through email to sell you something!

Like I said, I'm an associate, but I don't think I'm in a cult or

anything. (But then, if I were, I wouldn't know that I was, would

I??? Maybe I am...??? Maybe it is some sort of poop-checking cult?

I have noticed that I am preoccupied with the form, color, and

consistancy of my kid's stools... perhaps this is the angle I should

use to get on Oprah?)

Okay, I am getting a little giddy now - it's very early in the

morning as I write this.

I guess the short answer is yes, the woman may have been a predator,

but yes, some of the claims may be true, and no, as far as I can

tell, I'm not in any sort of cult (but if I am in a cult, I am not

objective enough to determine it.)

Have a good day!

~

mommy to 3, 1 with cf

> A few months ago a non cf woman, I think she was one of their sells

> people, wrote to me. At the time I was highly offended, I felt she

> was a predator, I really did, but at that time I was very

vulnerable,

> too. At any rate are their claims true or is it just another way

of

> getting vulnerable people like me sucked in. Actually, their web

> site is sort of scary, it reminds me of some sort of cult, I do not

> know why I get that feeling, I hope I'm wrong. Any comments would

be

> appreciated...

>

>

> mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf

[Guest guest]

Hi,

There was a guy from this company who didn't know anything about CF and was very

confrontational and pushy on a board a few months ago. It was weird and

annoying. I am usually one to be interested in alternative meds/ herbal things

but this guy left a very bad impression on me of himself and the company. His

posts had a very predatory feeling to them. I have stayed away from the company

because of this.

Does anybody know about mannarelief.org ?

A few months ago a non cf woman, I think she was one of their sells

people, wrote to me. At the time I was highly offended, I felt she

was a predator, I really did, but at that time I was very vulnerable,

too. At any rate are their claims true or is it just another way of

getting vulnerable people like me sucked in. Actually, their web

site is sort of scary, it reminds me of some sort of cult, I do not

know why I get that feeling, I hope I'm wrong. Any comments would be

appreciated...

mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf

[Guest guest]

Lenora and others interested in Mannatech and MannaRelief...

You might want to join a Yahoogroups list (it's small and not overly

active so don't worry about an overflowing mail box) called CF/Manna.

Desjardins started the CF/Manna group in January as a way for

those of us interested in discussing glyconutrients to have a forum.

, a 27 (28?) young man with CF, has been using Mannatech's

products for one year now and with amazing results.

You have to be approved to join the CF/Manna list -- he does this to

keep out Mannatech sales associates who know nothing about CF but are

only looking for customers. The list is for people with CF (or parents

of children with CF) who are interested in learning the science behind

how and why the products work, how to purchase or participate in

MannaRelief (or the studies), dosing, tracking improvements, etc.

is a kind, energetic, helpful person who has seen his health

turn around so remarkably that he's now devoted his time traveling

the country to helping others. Remarkable since only one year ago he

was ready to list himself for transplant.

We all know that not ALL medicines, supplements, foods, treatments,

therapies, etc. work for everyone. But if even one more person with CF

can be spared because of these products, then they're worth it.

Kim

> Still don't know the answer to these questions. I have, though,

> finally enrolled in one of their studies. I hope he gets

> accepted. It's hard because we have had our hopes up so many times

> only to be awakened to the fact that we are " prey " . We would find a

> million dollars if we needed in order to buy health for our

children,

> but to think that some people would actually take advantage of this

> is so frightening.

> At least the study will finally clear up scientifically if there is

> benefit in their products and I commend them for doing this.

> Also, of course, it will provide the nutrients, etc. for free, which

> is right up my alley!

> Lenora

>

> >A few months ago a non cf woman, I think she was one of their sells

> >people, wrote to me. At the time I was highly offended, I felt she

> >was a predator, I really did, but at that time I was very

vulnerable,

> >too. At any rate are their claims true or is it just another way

of

> >getting vulnerable people like me sucked in. Actually, their web

> >site is sort of scary, it reminds me of some sort of cult, I do not

> >know why I get that feeling, I hope I'm wrong. Any comments would

be

> >appreciated...

> >

> >

> > mom of a 9 wcf, Venanzio 6 nocf and Pepe 3 nocf

> >

> >

[Guest guest]

Thank you very much, , for your very clarifying, non-biased,

objective response. I certainly enjoy discussing all the

alternatives, as far as we can maintain a good level of respect and

objectiveness.

As a matter of fact, I applied for the Mannarelief program, on behalf

of my son Agustin, 2yo wcf, and we'll be receiving our 1st. shipment

shortly. As we're in Buenos Aires, and Mannarelief does not handle

int'l shipments, we've been lucky enough to have a friend who lives

in the Brooklyn area, to whom the products have been shipped.

Hopefully today, my friend will give in the prods to a pilot, who is

now in Manhattan, and will bring them home this comning weekend.

I'm a little anxious about this stuff, especially about

Mannacleanse. I will post our results to the CF Parents list,

whatever the results are, if you find it OK. I will wait a couple of

weeks, or even longer, in order to have some fairly good info.

Agustin is currently on 1/2 to one Creon 10,000 per meal, depending

on their fat/protein contents. His stools are sometimes perfect, and

not as good for the rest of the time. He's cultured SA, no PA so

far, and his lung function is quite good. He does have some

occasional cough, and will be put on a 10-day course of

clarithromycin, starting today. We had visit with CF Doc last

evening.

BTW, his cough came back right after he started his kindergarten,

early March here in the Southern Hemisphere -- where seasons are

right the oppostite.

Hugs to all,

mom of Agusin

Buenos Aires, Argentina

(most of the time in Lurkerdom...)

> ,

>

> Mannarelief.org is a non-profit organization that provides the

> Mannatech supplements to children with serious health conditions

and

> to children who are orphans. In order for the child to receive the

> supplements, a $120 per month sponsorship is paid, with a six month

> commitment to the program. (This is way, WAY less than the retail

> cost of the supplements that they provide.)

> Mannatech is the company that sells the supplements that

Mannarelief

> provides in its program. The woman who contacted you was almost

> surely a Mannatech representative, not a Mannarelief rep. To see

> info about the products, see http://www.mannapages.com and to see

the

> mannarelief site, see http://www.mannarelief.org

> I am an associate, but haven't made any money selling the

products.

> Guess I'm just not cultish enough! Many of the associates

believe

> fervently in the products they are selling, so they do often come

off

> as sounding a little frenzied. Many of them also use the

> word " awesome " frequently, which in itself makes me a little

uneasy.

> My five year old son with cf is taking supplements from Mannatech.

> (He takes Ambrotose, Phytaloe, Glycobears, Sport, and

Mannacleanse.)

> The one thing that has improved greatly with him is his digestion

> since taking Mannacleanse. He takes three of the Mannacleanse

pills

> each day. Before taking them, he was taking 4 to 5 Pancrease MT4

> capsules with meals and snacks, and sometimes still had loose

> stools. Now he takes two Pancrease MT4 capsules with meals and

> snacks, and his stools are perfect. He still coughs, he still has

> cf, he still has nasal allergies, he still asks ten-thousand

> questions each day, but his digestion is much better than before

> taking the supplements.

> My son's cf doctor knows he's taking these supplements. The

> nutritionist at the cf clinic has a product information sheet for

> each supplement that my son is taking. They have no objections to

> him taking mannatech products. Consult your child's doctor before

> buying anything. The mannatech website has product info sheets

that

> you can print out and take to the doctor to review. If your child

> takes ADEKs or another high-potency vitamin supplement for cf, make

> sure the doctor reads the product information sheet for Glycobears

> before letting your child have it - it has Vitamin A in it. You

> don't want to overload your kid by giving two vitamin pills that

> duplicate ingredients.

> If your child is having digestion or weight-gain problems, it might

> be worth it to try the Mannacleanse pills (if your child can

swallow

> pills.) I have heard that other people have had tremendous results

> with the other supplements, too, but we haven't seen this in our

son,

> so the Mannacleanse is the only product that I can vouch for.

> There are probably several Mannatech representatives on this list

> that can sell the supplements to you, or you can buy them directly

> from the Mannatech website without going through a rep. Also,

there

> are often mannatech supplements available on Ebay, if you are

> inclined to go that route. I am skittish about feeding my kid

> anything that was purchased through an auction, but I just wanted

to

> let you know that this is an option.

> You are right to be skeptical, especially when someone approaches

you

> through email to sell you something!

> Like I said, I'm an associate, but I don't think I'm in a cult or

> anything. (But then, if I were, I wouldn't know that I was, would

> I??? Maybe I am...??? Maybe it is some sort of poop-checking

cult?

> I have noticed that I am preoccupied with the form, color, and

> consistancy of my kid's stools... perhaps this is the angle I

should

> use to get on Oprah?)

> Okay, I am getting a little giddy now - it's very early in the

> morning as I write this.

> I guess the short answer is yes, the woman may have been a

predator,

> but yes, some of the claims may be true, and no, as far as I can

> tell, I'm not in any sort of cult (but if I am in a cult, I am not

> objective enough to determine it.)

>

> Have a good day!

>

> ~

> mommy to 3, 1 with cf

>