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

[Guest guest]

Kim - once again your knowledge amazes me. I love your posts they are so

informative. I read every word.

Rosemary in NY with 3 children (12, 10 and 6)

with CF. I have a dog named TOBI and

coined the phrase " BREATHE DAMMIT "

[Guest guest]

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

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

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]

Thank you Kim!

I saved this post!

Meg

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

> 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)

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>