Re: Joint pain in Cody (long)

March 16, 2003

When someone complains of joint pain, one of the best things you can

do is look to the diet and assess the amount of inflammation going on

in the body.

If the diet is high low in omega 3 essential fatty acids, aches and

pains are more common because low omega 3 goes hand in hand with

inflammation.

The speediest way to correct the imbalance is remove inflammatory

foods from the diet: any food, condiment or beverage containing

these oils: corn, cottonseed, sunflower, safflower, peanut, soybean,

etc.

If the oils says " high oleic " safflower or " high oleic " sunflower then

it is okay. But the only oils you really should use are olive, canola

(or rapeseed).

It takes courage to go into your kitchen and read the ingredient

labels of the boxes and bottles in your cupboards, pantry, bread box,

refrigerator and freezer.

If you sincerely want to change your health or that of your loved

ones, then you have to change your food choices. You'll have to stop

relying on fast food and processed food and eat more fresh foods. No

more foods that say hydrogenated fats, no more margarine unless it's

made only from olive or canola oil.

Once you get the inflammation under control, then you can allow the

bad foods back into your diet -- just use them as treats. No one wants

to permanently give up Oreos, I know I don't! But it's amazing how

after a while you get into the mindset that you don't want the pain or

fatigue so you don't miss the Oreos and Chips Ahoy (homemade chocolate

chip cookies taste much better anyway!).

You may also want to take a DHA supplement. DHA is an omega 3

essential fatty acid (EFA) and was the EFA studied by the two CF

researchers that showed supplementing with high doses corrected CF.

The CFF started a study then lost interest, or perhaps just figured no

one can make money off of taking a supplement that is already

available over-the-counter.

I know one mom who gives her 16-yr. old teen son with CF 1.5 grams of

DHA a day. His PFTs have gone up over 20%. The study rule of thumb was

1 gram of DHA per kg of body weight. (That means my son would need

74-75 grams per day. That would get expensive!)

Don't run off to buy fish oil capsules because if you read the labels,

you'll find many fish oil capsules contain omega 9, 6, and 3 and often

the omega 3 is the lowest ingredient in the product. Omega 9

contributes to inflammation.

For those of you like me who are on tight budgets, GNC makes a good

DHA. They have two types.

1) DHA 250 (contains 250 mg. DHA and 100 mg. EPA)

2) DHA Goldminds (contains 200 mg. DHA)

Our family takes #1 (above), but does have the other type and

takes it instead of #1 (above) when he has an exacerbation. I take 1-2

DHA capsules a day.

My daughter -- who doesn't have CF but we suspect is a carrier --

takes 1 capsule per day, sometimes 2 if she remembers. She has

complained of knee pain off and on since 2nd grade (ironically, it

started a couple weeks after her dad broke his knee.) She's been

dancing since age 3. She's 20 now, and on Thursdays after teaching 8

back-to-back dance classes her knee flare ups if she doesn't remember

to take a DHA capusle and a magnesium supplement.

About 3 years ago I started awakening every morning with stiff,

painful achey hands and feet and my back. I started taking the GNC DHA

and it went away. I ran out of the DHA and the symptoms returned so I

started taking it again. Every time I stop, the symptoms return.

Remember, pwcf and carriers of cf are low in omega 3 essential fatty

acids (DHA). So if you really want to help your child, look to the

diet. Eat more fatty fish like salmon, tuna, mackerel, and herring. I

don't know many kids that will eat mackerel and herring... but tuna

and salmon are good choices -- and salmon and canned tuna have lower

mercury levels than most fish on the market (however, tuna steaks

often have high mercury).

You can get excess mercury out of your body by eating lots of

cilantro. We use cilantro in salsa, soups, and I make a pesto with

cilantro, basil, garlic, onion and tomato. Fresh basil has

anti-pseudomonal properties and garlic is a natural antibiotic.

Also, if your child (or you) has joint pain, diabetes, headaches,

muscle cramps, low lung function, frequent respiratory infections,

then you need to look at the amount of magnesium in your diet.

Additionally, your body will be low in magnesium if you or your child

are taking any of the following meds:

--Albuterol

--Prednisone

--Antidepressants

--Aminoglycoside antibiotics (like TOBI or tobramycin IV)

--Macrolides (i.e., Zithromax, Biaxin, a.k.a. azithromycin,

erythromycin, clarithromycin)

When magnesium is low, then calcium is pulled out of the bones and

teeth and deposits in the joints and cells contributing to

arthritis-like pain and inflammation. Did you know that most heart

disease is a direct result of inflammation and can be attenuated by

correcting the magnesium deficiency.

Just be sure not to give magnesium supplements within 2 hours of

taking antibiotics because the magnesium blocks the antibiotic.

Also, some magnesium forms work better than others. Magnesium oxide --

the kind found in nearly 100% of all multivitamin/mineral supplements

-- is actually the least bioavailable form.

Hospital emergency rooms often give magnesium sulfate by IV when

someone comes in with an asthma attack. They also give magnesium

sulfate by IV when a woman is in premature labor. Magnesium taurate is

sometimes given in the ER to people presenting with migraines.

For my son, daughter and I, we found that magnesium glycinate is the

best form for us. It is readily absorbed by the body and doesn't cause

loose stools like some magnesium can. I supplement with 500 mg. per

day -- not including what I get in foods. The US RDI for magnesium is

about 400-450 mg. for HEALTHY adults.

Some researchers and doctors feels this amount is way too low because

our diets are so high in processed foods. And remember RDI (used to be

called RDA) amounts are based upon healthy people, not chronically ill

or people recovering from illness or injury. The RDI is the minimum

amount of any nutrient necessary to prevent death, not maintain

health. And that's a big difference.

Many of you know that my son was able to get rid of aspergillus and

stenotrophomas maltophilia by correcting a magnesium deficiency.

Magnesium is a necessary alkaline mineral. Bacteria love acidic places

and CF lungs are more acidic than non-CF lungs.

If you ask your doctors about all this, I'm willing to bet 99.9% of

them will brush you off. But I hope you won't be discouraged. The

research is out there -- research has been there a long time and the

NIH even has very exacting research about this.

So please, if you are concerned about joint pain, muscle cramps,

osteoporosis, osteopenia, CF-related diabetes, depression, lung

infections, asthma, heart disease, seizure disorders, migraines,

severe allergies -- then please do not dismiss magnesium deficiencies.

It's simply too important to ignore.

Kim

Mom of (23 1/2 with cf and asthma) and (20 asthma no cf)

> My daughter has complained with her knee hurting off and on

> since she was 3. Every dr that I had mentioned it to like yours

just past it off. This lst time about 6 weeks ago we thought it was

> Leviquin but 2 weeks after being off of it they still hurt.

> went intothe hospital 2 weeks ago and at that time the I told the dr

> again that they were still hurting . ( I knew that joint pain is

> common with cfers to some extent) HE told us that when these kids

> have moreof a lung exaserbation(sp?) the infecton with also effect

> the joints. After just a few days on IV antibiotics her knees quit

> hurting.

>

> Dana 13 w/cf Philip 6 wo/cf

March 16, 2003

Thanks Deb, what a nice things to say and you don't know how much

it's appreciated -- especially right now! I'll take all hugs and

support I can get!

Tomorrow I'm taking over a 7th grade class (17 students). Their

teacher is moving up to take over the 8th-grade-class-from-hell (27

students). Their moving her in instead of me because she has 8th grade

teaching experience and this is their graduation year. I'm the lucky

one -- the 7th graders are supposedly respectful and have the highest

scores in the school. The 8th graders, with the exception of about 5

of them, seriously need hormone depletion therapy!!

If any of you have 7th graders (12, 13, 14 years old) I'd appreciate a

crash course into their mindset. What's important to this age group

(other than their friends, talking nonstop, and passing notes?). What

are the fads? This class is mostly Latino, a handful are Caucasion.

A couple weeks ago while working with kindergarten kids, I realized

just how badly I speak Spanish. For three days instead of telling one

young boy to " Please, sit " I was telling him to " Please, seven. "

Hey, laugh all you want, but in Spanish those two words DO sound

similar! HELP!!

To top this all off, suddenly after nearly a 7-month reprieve, my back

has gone out again! I feel like I have a machete wedged between my

spine and a cord of muscles. I ran out of my RX muscle relaxant and

I'm just miserable. The pain is so bad I can't sit long, which makes

grading 17 essays (due tomorrow) really hellish!

Kim

Mom of (23 1/2 with cf and asthma) and (20 asthma no cf)

> In a message dated 3/16/2003 9:29:09 AM Central Standard Time,

> kimpayne@c... writes:

>

> > Kim

> >

>

> I have been wondering where you have been!! It's nice to see you

back!! Deb A

>

March 16, 2003

Dear Kim ,

I am happy you have the job BUT, sure hope your health is up to it. That is

most important . But, Hopefully , you'll have your meds & it will relieve

the pain.

LOVE & HUGS,

BEV--grandmomBEV