Re: Magnesium (Go Girl)

[Guest guest]

AWESOME! I'll definitely make a list of these things and present it

to them. Would print it out but think I should probably edit a

little!! Don't want to get their hackles up too much. However this

makes me wonder where they've been. They're an accredited CF center

and should know these things. What sort of document or something

from a doctor could I show them? Does the NIH have a site or

anything published on this? I believe you and what you're saying

makes terrific sense to me but Abby's doctors need to know about this

if I plan to do it and if it's this " for real " then they REALLY need

to know about it anyway - for their other CF patients.

Thanks Kim,

Joe

[Guest guest]

Hey Joe,

I used to live in Gainesville, and U of F has a really good med

school. My mom was a cardiac ICU nurse at Shands while my dad finished

his bachelors and masters degrees at U of F. Dad still sends me

articles from his alumni newsletter whenever he finds something

they're studying about CF.

But just because Shands has an " accredited " CF Center doesn't mean

they know everything. Accredited by whom -- the CFF, AHA or JCAHO? CF

Centers are at the whim of the CFF because the CFF funds them.

So, if you want broader prospectives, you often have to look outside.

I am *not* saying that the people who work at CF Centers don't care --

I *am* saying often their hands are tied. They must follow CFF rules

and regs or risk losing CFF funding. (Well, okay, and sometimes there

are doctors and other staff who just don't care to have parents

showing signs of intelligence...)

Which is a big part of the reason my son's pulmonary doctor finally

threw up his hands and walked away as director of our CF Center and

opened his own private practice.

Five years later, the CFF CEO had the nerve to bad-mouth our doctor to

my face -- carping about how our doctor left the Center so they had to

find a new director, and carping because some of the patients left the

Center to follow the doc into private practice. Like gee, how dare our

doctor follow his convictions, and how dare patients make a choice in

CF care.)

Did you know that just because your child has CF doesn't mean you MUST

attend a CF Center? You're free to go wherever you want to go for

care. You can find good pediatric pulmonologists, gastroenterologists,

pediatricians, allergists, ENTs, nutritionists, etc. and work

alongside them -- teaching each other about CF.

Good doctors exist outside of " accredited " CF Centers, and any good

doctor should rise to the occasion to work with patients and family.

The nice thing of not going to a CF Center is not being exposed to a

concentrated roomful of bacteria. Once we left the CF Center, my son

stopped getting sick. When we used to go to clinic, he'd come home and

within 48-hours ended up on antibiotics. But that stopped once we

started seeing his doctor in private practice.

Kim

AWESOME! I'll definitely make a list of these things and present it

to them. Would print it out but think I should probably edit a

little!! Don't want to get their hackles up too much. However this

makes me wonder where they've been. They're an accredited CF center

and should know these things. What sort of document or something

from a doctor could I show them? Does the NIH have a site or

anything published on this? I believe you and what you're saying

makes terrific sense to me but Abby's doctors need to know about

this if I plan to do it and if it's this " for real " then they REALLY

need to know about it anyway - for their other CF patients.

Thanks Kim,

Joe

[Guest guest]

Oops, I got carried away and completely forgot to respond to your

request.

Can you remind me which magnesium info I already sent you? (Did I

privately send you anything?). I've been working on a paper

to submit these findings to CF specialists; some stuff I've already

sent to doctors that requested info.

It's interesting that doctors most willing to listen -- and most

comprehending of the implications of magnesium deficiency once they

read the evidence -- are doctors *not* affiliated with CF. I'm not

sure why.

For starters, here's the NIH website. This is an ebook that you can

print out to read all about magnesium. Additionally, since January

2001, I've collected about a gazillion research abstracts, articles,

and web sites. (Probably a lot more than what your doctor has

collected about magnesium.)

http://www.nal.usda.gov/fnic/etext/000105.html

From this link, you can also read about other elemental minerals and

vitamins. I really recommend this site.

Please keep in mind this ebook is not specific to CF -- but that

doesn't diminish its value. Using what you know about CF symptoms, you

should be able to put the puzzle pieces together, especially in terms

of bone health and inflammation.

I've long believed that one reason many CF medical caregivers, parents

of pwcf, and pwcf have trouble accepting " new " information is that

they want to see the words " cystic fibrosis " specifcally attached to

the info. That's a very dangerous, narrow-focused stance to take.

What I mean is, Abby isn't CF -- she's a little girl with a disease

that causes a myriad of problems that are often seen in the non-CF

population. So why constantly reinvent the wheel? Often when you

research other diseases, deficiencies, etc., you find tried and true

ways to solve some of the problems seen in CF.

Again, take note of all the glitzy pharmaceutical ads on TV and in

magazines. Products intended to alleviate depression, anxiety,

headaches, muscle soreness, migraines, insomnia, arthritis, asthma,

osteoporosis, diabetes, PMS, reflux, indigestion, high cholesterol,

hypertension, impotence, hair loss...

Did you know that one of the ingredients in Pepcid Complete is

magnesium? And Milk of Magnesia is magnesium. And guess what's in that

new little purple pill, Nexum? Yep, it's a form of magnesium.

Just knowing that magnesium is a factor in over 300 enzymatic actions

of the body, is the fourth most abundant mineral in the body, and the

second most abundation cation in the body -- and knowing that studies

show Americans aren't getting even the minimum daily requirement of

magnesium -- wouldn't you rather give your body what's it's missing

instead of taking a med that only treats symptoms but does nothing to

correct the problem?

But again, not all magnesiums are created equal, and even a lot of

doctors don't know this... yet.

Kim

[Guest guest]

Kim,

That is exactly what we did, we went elsewhere. We went to the a CF

center here in Memphis only once, I hope and pray to God that I never

have to place a foot in there, we had THE WORST EXPERIENCE in that

place. I feel for those who settle so short or who may not know that

you do have a choice, even if you have to fight it. It makes a lot

of sense what you are saying now. I blamed it on the doc who saw

a, I still do, but I did not make the connection between the

cystic fibrosis foundation and the poor care that we received, very

sad, indeed. Boy that man made sure we signed those papers for the

foundation before we left, very little information, otherwise.

Love,

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

>

> AWESOME! I'll definitely make a list of these things and present

it

> to them. Would print it out but think I should probably edit a

> little!! Don't want to get their hackles up too much. However this

> makes me wonder where they've been. They're an accredited CF

center

> and should know these things. What sort of document or something

> from a doctor could I show them? Does the NIH have a site or

> anything published on this? I believe you and what you're saying

> makes terrific sense to me but Abby's doctors need to know about

> this if I plan to do it and if it's this " for real " then they

REALLY

> need to know about it anyway - for their other CF patients.

>

> Thanks Kim,

>

> Joe