Re: Kim/question about Magnesium

[Guest guest]

Hi ,

It's really too bad will only take what the doctor prescribes,

but it's understandable too. No one likes admitting they have a

chronic illness, and taking daily meds is a constant reminder of our

vulnerability. But she's doing herself more harm by relying only on

ADEKs to get her vitamins. ADEKs isn't a complete product. (Even if

she didn't have CF, I'd recommend a daily multivitamin/mineral.)

Ang is such a pretty young lady, and she can help herself stay that

way a lot longer by taking care of her bones. Magnesium will do that

for her. By taking only calcium tablets she's doing more harm to her

body, both in terms of bone loss and inflammation.

It's criminal that doctors are so ignorant about the need for

magnesium, while pushing calcium. Good Lord, the information is even

published by the NIH in eBook form on a USDA site at

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

Early last fall, I talked to a 52-year old woman who said her doctor

said she had about 3-4 months to live, so he sent her to another

doctor for pain management because (he said) there was nothing left to

do. They put her on oxygen, albuterol, high pain meds and sent her

home. She doesn't have CF -- she has severe osteoporosis and anklosing

spondylitis with an 18-degree curvature in her neck (Hal also has

anklosing spondylitis).

The woman said her doctor had her on 1,100 mg. a day of calcium. I

asked how much magnesium and she said none.

I was stunned. How could it be that doctors would miss this? This

woman has endured so many surgeries -- over the years she's had her

spine broken and fused, has been written up in medical journals, and

has been poked, prodded and paraded naked before med students and

professors.

So I talked to her about the importance of magnesium and our success

with it. Then I emailed her all the info I had on magnesium,

osteoporosis, inflammation, and pain and she took it to the pain

doctor.

But first, she talked to her pharmacist about Solgar magnesium

glycinate, and he told her that he and his wife both take it and he

would order some for her. Then she went to her pain doctor, but he

argued with her saying magnesium wasn't necessary.

She has a law degree and as you can imagine, is persuasive and firm.

She insisted he call her pharmacist; she said the doctor was very smug

and finally agreed to call just to get her out of his office. He spent

30 minutes on the phone with the pharmacist " getting educated. " When

he got off the phone, he apologized to her and wrote a prescription

for 600 mg. a day of Solgar magnesium glycinate!

You don't need a prescription, but by him writing her one she can get

her insurance to cover it (she has an awesome insurance plan). Since

then, she no longer has nightly insomnia and has been able to lower

her pain med doses and need for O2.

Nest, she contacted her former doctor, now retired from the University

of Kentucky, and grilled him about magnesium and why he'd never had

her take it. She said he asked lots of questions and requested the

info I sent her. A few days later he called her, apologized, said they

didn't know these things " back then, " and told her to thank me for

him. How bizarre is that? The really funny thing is that now I'm an

Honorary Kentucky Colonel (the 4th graders call me Colonel Payne

when I have to get stern with them!).

Back to : Since I read CF Parents from the web site (I don't get

individual emails) I can't forward or copy your letter to

because 's email address won't show up. So write me personally

with with 's email address, then I'll copy your letter to him

and include her email. I don't know how prompt he'll be, but it never

hurts to ask.

Meantime, you might share with that when got the

Jan. 2001 culture results showing aspergillus and S. maltophilia, he

was scared enough to try anything. Despite the fact he's very

creative, he's also very logical. So when we discussed the course of

treatment I proposed it made sense to him and he was very agreeable to

trying it.

Believe me, I know how blessed I am that has always been

compliant, never rebellious about treatments and meds. And I don't

take for granted the trust he places in me. As he's gotten older,

he also does some research on his own -- like putting himself on

biotin a few months ago. Though that was more a vanity thing because

he was concerned about his receeding hairline. But biotin (vitamin H)

is a cofactor in how the body utilizes essential fatty acids. And

since studies show pwcf do not convert EPA to DHA (omega-3 essential

fatty acids), thus are low in DHA, then taking biotin is probably a

very good choice for him, especially since he doesn't like eggs, and

that's where biotin is richest.

In fact, at the time of the aspergillus/S. maltophilia culture, he was

enrolled in a life biology course at Loyola and needed to write a

paper over some subject, so he decided to use the experience he was

going through. He hypothesized that taking magnesium supplements and

inhaling tea tree essential oil would erradicate aspergillus. He was

pleased that it worked, but was stunned that his culture also showed

the S. maltophilia was gone, and also surprised to see his mucoid Pa

had regained sensitivities.

We decided that the tea tree inhalations must have altered the cell

membrane of the mucoid Pa, making it now sensitive to the antibiotics.

A couple weeks later, I found an abstract showing that tea tree

essential oil alters staph cell membranes. Now it's lovely to have

these other abstracts linking magnesium and antibiotic sensitivity.

hasn't gone through the extent of sinus surgeries that

has -- he's only had two polyps surgeries. And he's not been on IVs

like she has (I recall her numerous sinus infections only responded to

IVs, not oral antibiotics). But still, has developed white coat

syndrome. He is *very* uncomfortable in ERs, doctor's offices, etc. so

he'll do anything he can to avoid those situations.

I think it's so important to never underestimate the damage to a

child's psyche whenever they must go to the hospital. Perhaps

is feeling some of those things: thinking if she only does bare

minimum of whatever the doctor requires -- then she can walk on the

edge between denying her chronic illness and staying healthy.

Kim

Hi Kim,

I just told about the mg and asked if she would take it if I

got some for her. She said no. She won't take anything that the

doctor doesn't prescribe. So I was wondering if you could get

to write her and tell her how it helped him and everything? It

probably won't make a difference but it's worth a try. She cultures

Maltophilia and Staph and sometimes aspergillus and I still think she

has pseudo in there somewhere even though it hasn't shown up in her

cultures for years. She is on albuterol and Tobi and I can't remember

if she is on any of those other meds you said deplete mg. She does

take calcium citrate which the nutritionist recommended since she

doesn't drink milk. along with ADEKs, those are her only vitamins

because that is what the doctor recommends. Maybe you could send

this on to ? Her email addy is AngLeigh@i... and he doesn't need

to talk down to her, shes 19.

Thanks in advance, I really think the Mg sounds like a great idea.

But she won't listen to me, I am just her mom, you know the feeling?

love,