Re: Attn Kim Payne- Nutrition 101

[Guest guest]

Hi Debi,

Freaky coincidence to find your note. I was up late the other night

going over magnesium papers, and I thought of you and wondered if you

ever picked up some magnesium for IBS. Grandma Bev's pharmacy now

carries the Solgar magnesium glycinate at the best price around. I

can't even begin to tell you what a miracle that particular magnesium

has been for quieting the IBS that stayed with me after surgery in

March 2001. I still think of your phone call and how much it helped

commiserating with someone who understood my ordeal.

I also understand time constraints. Most parents on this list have

little ones and are pressed for time. I sure remember those days. As

much as I've always been interested in all things medical, there

simply were too few hours available between working, going to school,

caring for the kids and their activities, housework, handling all the

finances, bookkeeping and payroll for the house and farm, feeding

farmhands (and listening to their young lovelife woes!), and stepping

in to help milk the cows some weekends and during wheat harvest.

(I sure was better organized back then, though!)

After my divorce in 1998, going off to college six months

later, and finishing the Savory Solutions cookbook, I had more time

to devote to researching CF in between going back to work and picking

up some grad classes. But it wasn't until graduated high

school in 2001 and I moved to Chicago and took a sabbatical that I

really had the time I needed to devote to my own medical interests.

And the timing all played out because that's when most needed

the information. Fear was my biggest motivation since we received

word that he cultured S. maltophilia AND aspergillus, yet his doctor

wasn't going to treat them.

We took matters into our own hands. I researched and he willingly

played guinea pig. It worked for us and he is doing so well now.

Prior to this, for three years his had doctor brushed aside my

concerns that was slipping. His PFTs slowing kept falling, he

was pale, low muscle mass, lost weight easily, fatigued easily yet

still burned the candle on both ends.

But very shortly after started a supplement and diet regimine

we chose, even his three roommates were amazed at the difference in

his appearance and stamina. But the very best news was that we

erradicated the S. maltophilia and aspergillus, and his mucoid PA

became resistant to all antibiotics, and with continued therapy, a

few months later he even failed to culture mucoid PA (knock wood, he

hasn't seen a doctor in one year).

I'm a cause-and-effect type person. I always have to know how and why

in order to understand ANYTHING (that's why I'm so bad at math -- all

my teachers used to tell me, " You don't need to know why, just do it

this way! " ). Because I know my learning style, I knew I needed to

start at the beginning, the basics of what the body needs to ensure

health.

I went to http://www.healthwell.com. They put everything into easily

understood terms. I brushed up on what I knew about amino acids,

vitamins and minerals. I'd been a member of Gould's alternative

med CF list (Crataegus) since it began in August 2000. The sharing of

information and support for research was invaluable. I'd find

something, take it to the group and say, " Look at this, do I

understand this right? This is what I think, does it make sense? "

That type of sharing of information is exciting and gratifying,

especially when you see your child's health do a 180. It's empowering

to know that we, the parents and pwcf, do have more control over our

health status. Just because there is a CF specialist involved does

NOT mean that specialist knows everything or even stays current. And

God help us, we know that 95% of doctors have very, very little

knowledge of nutrition and can't remember the basics of human biology!

I think if one more person tells me that their doctor says magnesium

isn't important, I'll probably blow a gasket. Magnesium is the fourth

most abundant mineral in the body and the second most crucial

intracellular cation. It's responsible for over 300 enzymatic actions

in the body. Just pick up any magazine and flip through the ads for

medications: diabetes, arthritis, insomnia, depression, osteoporosis,

high blood pressure, high cholesterol, muscle aches, joint pain, PMS,

gall stones, kidney stones, seizures, attention deficeit disorder,

snoring, teeth grinding, yada, yada, yada... the list goes on and all

can be traced back to a deficiency of magnesium. But instead, doctors

prescribe meds to ameliorate symptoms instead of going to the root to

correct the problem. And most of these meds turn around and further

deplete the body of magnesium.

One document everyone should read is the USDA's ebook on magnesium.

http://www.nal.usda.gov/fnic/etext/000105.html It's an eye-opener

and will tick you off, especially if your doctor has already told

you " people aren't that deficient in magnesium. " And it will make you

wonder why the blazes your doctor isn't keeping up with research.

Just because his/her schedule is overloaded is no excuse. 's

doctor used to devote every Tuesday to research after making morning

rounds. He stopped when he went into private practice. Why? Probably

a time management thing, but to the detriment of his patients. Back

in April 1999, I was the one that went to him to request go on

daily Zithromax. This was way before the CFF got wind of Zithromax

and started their own studies. I shudder to think of the damage had

we waited the three years for the CFF to get off their fannies to

announce Zithromax prophalatically was a good thing when you've

already cultured PA.

Another good info source is PubMed. This is where you can research

medical abstracts, and sometimes access the full article. If you've

not read these types of documents before, don't get discouraged. Soon

the language will become familiar to you. If it helps, start by

reading the " conclusion " of a study first, then go back to read the

beginning. Some abstracts are poorly written, so after a while you'll

learn which don't have merit simply because it was a poor study.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi

Also, keep in mind that CF is a disease with many manifestations.

While there is a lot of information in PubMed and on the Internet

about CF, you're going to have better luck searching for ways to

correct the various symptoms of CF. In other words, if you read an

article that says this herb or that supplement works for certain

things, but it doesn't specifically say " CF, " don't give up on it.

That's why it's important for all of us to understand the physiology

and biology of our own bodies!

For example, once you understand that CF isn't the only condition

where there's an overproduction of respiratory mucus, then you can

look at the why's and how's and what works to relieve it. Mucus is

overproduced whenever there's inflammation, as seen in asthma. So,

how do you squelch the inflammation? You can avoid certain foods, eat

and drink certain other foods, and to ensure the lungs don't become

acidic, make sure you're getting magnesium.

I have some MS Word documents that I wrote over a year ago,

explaining some of the food choices that are best for pwcf. I think

attachments aren't allowed in CF Parents, and I think Torsten

disabled the ability for us to put these in the files section because

someone was sneaking in there to post links to porn. But if you write

to me privately at paynekimj@... then I'll send the documents

to you (and yes, Bev, I know I keep meaning to send them to you and

Lois!).

I can't believe I got on my soapbox so early this morning and with

only one cup of coffee. With my second cup, I'll really be dangerous!

Kim

Hi Kim-

It's Debi Montana. Hope all is well with you and yours. I have

recently joined cfparents and have been enjoying it immensely.

I have noticed that there have been quite a few conversations about

nutrition and supplements etc. recently. I don't know how other

people feel, but even though I try hard to keep up with things and

constantly keep a notepad by my computer, I sometimes get confused

with all of the info. I start out with the best of intentions and

before I know it I am lost in a sea of information and I haven't

really done anything!

Since you are SO well informed, I wondered if you would mind citing

a particularly good source for beginners to learn about what

vitamins, minerals, substances etc. are needed/helpful etc for people

with cf and why. I have some basic information, but I am genuinely

in awe of people like you and many others on the list who are so

informed and pro-active in this area.

If you could post a basic list of necessary substances and a book

or website that would get newbies started it would be fabulous!

Thanks,

Debi