Re: Tobi resistance / ***Very Important***

[Guest guest]

Last week, I wrote a reply to Joe's request for TOBI resistance, but

my computer ate my email when I tried to send it, and I just haven't

had the mindset to retype it all. But I believe the information is

too important to ignore.

As background info: my son participated in the TOBI studies from Oct.

1995 until the drug was approved in Dec. '97. He inhaled TOBI for 30

days, then off 30 days from Oct. to May, then the study phase would

close until the following Oct. and we'd start over again.

But once it was FDA approved, he went on it in Jan. '98, and stayed

on it again following the 30-day on/off protocal.

During this time, he continued getting positive Pa cultures. Sometime

in 1998, he cultured mucoid Pa.

From then on, whenever he had a sputum culture done the mucoid Pa

always showed up. But the nonmucoid Pa *only* showed up if the

culture was taken during the off-TOBI cycle. If the culture was taken

during the on-TOBI cycle, then the nonmucoid Pa didn't show up.

Here it is important to note that TOBI is in a class of antibiotics

known as aminoglycosides. Other aminoglycosides are gentamicin and

amikacin.

And it's interesting to note that from the very beginning, 's

*mucoid* Pa was resistant to tobramycin, gentamicin, and amikacin.

has never taken gentamicin and amikacin before, only tobramycin

(and TOBI). He has only had IV antibiotics twice.

In December 2001, 's sputum culture tested positive for

aspergillus and Stenotrophomonas maltophilia. He'd never cultured

them before, and it just seemed too odd to me that this fungus and

bacteria would show up together.

Some doctors and researchers believe the reason we're seeing an

increase in strange bugs in the lungs of pwcf, is because of long-

term antibiotic use. Sure, that's understandable, but I always felt

that answer was too easy.

That's when I honed in on magnesium and began researching it.

started taking magnesium at the end of January 2002 (less than 2

weeks after we got that dreaded sputum result).

On April 10, 2002 -- just about two months of taking daily magnesium

supplements -- went to the ER for an ankle injury, and we asked

the staff to do a sputum culture. A week later we got the results

showing that his mucoid Pa was now sensitive to all antibiotics. That

had never happened before.

On December 30, 2002 had another sputum culture and this time

the mucoid Pa was gone. That had never happened before.

Others whom I've recommended magnesium supplements, are now reporting

that since taking daily magnesium supplements, cultures are showing

sensitivity again to certain antibiotics.

One is a 15-yr. old boy who has three strains of Pa, which were all

resistant to tobramycin. But now his Pa is sensitive to tobramycin.

Another is a 38-yr. old man who previously had multiresistant Pa.

Now, his Pa is sensitive to 12 or 13 antibiotics.

Coincidence? Maybe. But maybe not.

A University of Seattle March 2003 study shows what I suspected all

along: pseudomonas grows favorably in a magnesium deficient

environment.

And a September 2002 study out of the University of Montana at

Bozeman shows that biofilm loses its viscosity in the presence of

magnesium, calcium, sodium and potassium.

But the most damning of all is a 1980 study by Nicas and Hancock that

confirms that pseudomonas grown in a magnesium deficient environment

becomes resistant to aminoglycoside antibiotics, which is reversable

by the addition of magnesium.

So, Joe asks what can you do to prevent antibiotic resistance? Take

your magnesium.

*DON'T* rely on your medical doctors to know about this information

right now. If you ask them, chances are they'll pooh-pooh the idea,

or become insulted that you're questioning their care, or pat you on

the head telling you not to worry.

*Don't* rely on blood tests to tell you your true magnesium levels.

Less than 1% of magnesium is found in the blood. Sixty percent is in

the bone, the rest is inside the cells. The only quick and painless

way to determine your level of deficiency is to test intracellularly -

- taking a scraping of cells under the tongue.

If you check blood levels and the results come back " in range, " then

you are low. If results come back " low out of range, " then studies

show that's when people with CF are dangerously low.

If you have any type of malabsorption (i.e., need enzymes) with your

CF, then chances are you are *not* getting enough magnesium from your

foods, even if your diet is the healthiest on the planet.

And if your children take the following meds, then their body is

depleted of magnesium:

albuterol

Xopenex

Theophylline

TOBI

Aminoglycosides such as tobramycin, gentamicin, etc.

Zithromax or other macrolides

Nearly all other antibiotics

Steroids, including prednisone

Antifungals (such as to treat aspergillus, candida, etc.)

The list isn't inclusive, there are other meds that deplete

magnesium. Caffiene (since it's a direuretic) will also deplete

magnesium (but I'm not giving up my morning coffee! I just take a

magnesium tablet with coffee!).

But before you rush out to buy magnesium, please understand these

important facts:

1. Not all magnesiums are created equal, and not all companies are

created equal. You want a good quality, highly absorbable product

that doesn't contain contaminates and won't cause diarrhea.

Some forms of magnesium at high doses can cause diarrhea or very

loose stools, which only means you'll loose more magnesium. So it's

best to avoid magnesium oxide (one study shows that's the least

bioavailable), magnesium citrate, magnesium gluconate, magnesium

sulfate, etc.

The one we use and I personally recommend because of our success with

it, is magnesium glycinate by Solgar. The magnesium is bound to

(chelated) the amino acid, glycine. This makes it better absorbed and

less likely to cause diarrhea. My son and I take 300 mg. a day, but

also get extra magnesium in our multivitamin/mineral tablets.

You can find Solgar magnesium chelate (magnesium glycinate) at Whole

Foods stores or go to Solgar.com to find other sources. The cheapest

place to get it is: http://www.houseofnutrition.com/m1.html

2) You should *never* take magnesium too close to taking an

antibiotic. The two compete for the same receptor site and the

antibiotic will lose. So, follow this guide:

Take magnesium 2 hours *after* antibiotics, or

Take magnesium 2-4 hours before macrolides, or

Take magnesium 6-7 hours before Cipro.

You can see the first option is the easiest.

Also, some people experience too much energy late at night if they

take magnesium after say, 5:00 - 7:00 pm. So it's a good idea to get

the magnesium early in the day.

My son takes 200 mg. magnesium glycinate at breatkfast and with all

other vitamins (our bodies biorhythms want vitamins early in the

morning anyway). Then he takes another 100 mg. magnesium with lunch.

This way he doesn't worry about it interfering with his late-night

Zithromax.

P.s. Joe, I noticed you said you were soaking nebs in vinegar. There

was talk about that several months ago. Vinegar is no longer the

recommended cleaning solution, but I can't remember why. There is a

product called Control III that is very effective for sanitizing

nebs. Also, I know how annoying that tubing condensation can be. I'm

always nagging to blow out the tubing. It's worse during humid

weather, and his Pari Pro Neb often creates more condensation than

his DeVilbiss, but I don't know why.

Kim

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

CF)

Does anyone know if there are any studies out there regarding

resistance to Tobi? We are treating our 9 mo.-old Abby with Tobi for

non-mucoid PA (her 2nd pos. culture) This is her 3rd round of Tobi

and I'm getting concerned about resistance. Does Tobi encourage the

formation of mucoid PA? I wonder if the PA " runs " from the Tobi and

what doesn't get killed speeds up the formation of the defense

mechanism of the biofilm shield. She doesn't, since she's a baby, do

a thorough job of inhaling the drug deeply although we make sure to

seal it well around her face and get as much as possible in her. I

feel like we should either pound it thoroughly with antibiotics or

either leave it alone. To make an example, if you sting something a

few times with a BB gun it's going to be harder to get a kill shot

with a rifle later. In the hospital they did a rotten job with the

Tobi - I just didn't know better at the time. Even with her IV tobra

and timentin - it was a week into her treatment before they got the

drug levels where they should be. And that was because I figured out

what they were doing and made them pull the sample at the correct

time. If anyone has info on this I'd appreciate it.

Joe (Dad of Kelsi, 6; Chloe, 2 and Abby 9mos.w/cf)

[Guest guest]

Judy,

Milk is a good source of magnesium as well as calcium, so perhaps

this is what helped your daughter.

My children were raised on a dairy farm, where we drank the milk

we " grew. " I skimmed the cream off the top and the kids drank raw

milk, with the blessing of their pediatrician.

I've often thought perhaps all that dairy is why did so much

better while living at home. And he did fine his first year in college

-- private dorm and excellent food at the University of Kansas -- but

when he transferred to Loyola U in Chicago, his health started

gradually declining. He complained all the time about the lousy food.

Dairy products were always a huge part of his diet. I know some people

say they can't eat dairy because it thickens their mucous, but we're

thankful this doesn't happen to .

He was able to get his health back on track once he started adding

certain supplements and eating foods high in sulfur, such as broccoli

and brussel sprouts and lots of garlic. He now takes more supplements

than prescription meds, and I'm happy about this because the

supplements actually correct defiencies and prevent illness, whereas

the meds only help symptoms, not correct problems.

Kim

Thank you Kim for this info my daughter is 19 1/2years and also has

been on Tobi since the trails, she was in the news in our town for

being the first on it. But she does not do it any more because she

found it harder to breath with it and she has been resistanced (?) to

many drugs. So she has not done it since Oct. and she is staying very

healthy, but I am always looking for healthier choices for her. So I

am going to get some mag. and see how it goes. She does go through a

gallon of whole milk in about 2 days plus cheese and healthy foods.

She was in a study on bone densisty in girls with CF and she has sooo

much good bone structure they where amazed.

Thank you being so informed.

judy