Re: non-mucoid PA vs mucoid Pa

[Guest guest]

posted this same question in Crataegus and I am going to take

the liberty of copying what the responses where in that group. I

think that all of them are very important to all of us. Thank you

for bringing such an important issue.

" ,

Mucoid PA is PA that has created a " foam " around itself to protect

itself

from antibiotics. Tobi is inhaled tobramycin that can be effective

against

PA--less so with mucoid PA. The IV tobramycin is much more powerful,

of

course, than tobi. The only drawback I see is that docs always infuse

two

different drugs at the same time to reduce the possibility of

resistance.

When you just inhale tobi, you run the risk of developing

tobramycin-resistant PA.

george "

This I did not know, nice to learn, because a is taking

Zithromax...

" Well, to add to 's post may I suggest that AZM (Zithromax) has

shown to reduce the biofilm that surrounds PA making it more

vulnerable

to the TOBI. So, try the two together.

We're eliminated PA doing this but only once :-( and we acted quickly.

Good luck,

Lori "

And this is from Kim, hail to the Queen of Mg and tea tree oil, thank

you Kim!

" And to piggyback on to this discussion...

Remember, there are those 20-year old journal articles showing that

mucoid PA

developed during magnesium

deficiency, and also showed that during magnesium deficiency, PA

became

resistant to aminoglycoside

antibiotics (such as tobramycin and gentamicin). The problem is

compounded by

those very antibiotics, which

deplete magnesium in the first place.

At least that's what happened in our case. Once we corrected 's

Mg

deficiency, his mucoid PA became

sensitive to the aminoglycosides again. And continued Mg supplements

got rid of

the mucoid PA in his last

sputum culture. I know saw the same results -- his PA became

sensitive

again to many antibiotics once

he started supplementing Mg. And Terry's son experienced

similar results,

though he later became

resistant to tobra again.

Gosh, hard to believe it was last December when Bri had his last

sputum culture.

One year later, I wonder

what would show up now?

Kim "

I think all of this information is so crucial,

> Can someone tell me the difference between mucoid PA and non-mucoid

> PA or point me in a direction for some reading. As well as a site

> that explains Tobi as a drug regarding it's benefits and side

effects.

> Also, can PA be detected in a throat swab?

> Thanks

>

[Guest guest]

, you are an amazing mom. It's so hard to believe that a was so recently

diagnosed because

you so quickly picked up the torch to light the way to educate yourself and pass

your new knowledge

on to so many others.

You can't possibly know how pleased I am to learn that all the " alternative "

things we discuss on Crataegus

and CF Parents has helped a regain and maintain better health. Reading

success stories such as a's

make all those late nights spent pouring over medical abstracts and articles and

textbooks worthwhile!

Kim

--- " Palazola " <palazo_a@b...> wrote:

> posted this same question in Crataegus and I am going to take

> the liberty of copying what the responses where in that group. I

> think that all of them are very important to all of us. Thank you

> for bringing such an important issue.

>

> " ,

>

> Mucoid PA is PA that has created a " foam " around itself to protect

> itself

> from antibiotics. Tobi is inhaled tobramycin that can be effective

> against

> PA--less so with mucoid PA. The IV tobramycin is much more powerful,

> of

> course, than tobi. The only drawback I see is that docs always infuse

> two

> different drugs at the same time to reduce the possibility of

> resistance.

> When you just inhale tobi, you run the risk of developing

> tobramycin-resistant PA.

>

> george "

>

> This I did not know, nice to learn, because a is taking

> Zithromax...

>

> " Well, to add to 's post may I suggest that AZM (Zithromax) has

> shown to reduce the biofilm that surrounds PA making it more

> vulnerable

> to the TOBI. So, try the two together.

> We're eliminated PA doing this but only once :-( and we acted quickly.

>

> Good luck,

> Lori "

>

> And this is from Kim, hail to the Queen of Mg and tea tree oil, thank

> you Kim!

>

> " And to piggyback on to this discussion...

>

> Remember, there are those 20-year old journal articles showing that

> mucoid PA

> developed during magnesium

> deficiency, and also showed that during magnesium deficiency, PA

> became

> resistant to aminoglycoside

> antibiotics (such as tobramycin and gentamicin). The problem is

> compounded by

> those very antibiotics, which

> deplete magnesium in the first place.

>

> At least that's what happened in our case. Once we corrected 's

> Mg

> deficiency, his mucoid PA became

> sensitive to the aminoglycosides again. And continued Mg supplements

> got rid of

> the mucoid PA in his last

> sputum culture. I know saw the same results -- his PA became

> sensitive

> again to many antibiotics once

> he started supplementing Mg. And Terry's son experienced

> similar results,

> though he later became

> resistant to tobra again.

>

> Gosh, hard to believe it was last December when Bri had his last

> sputum culture.

> One year later, I wonder

> what would show up now?

>

> Kim "

>

> I think all of this information is so crucial,

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > Can someone tell me the difference between mucoid PA and non-mucoid

> > PA or point me in a direction for some reading. As well as a site

> > that explains Tobi as a drug regarding it's benefits and side

> effects.

> > Also, can PA be detected in a throat swab?

> > Thanks

> >

[Guest guest]

Kim,

I am so humble by your post. At diagnosis, still today, I just got,

have, the impression that MD's are shooting darts. So, why not learn

what else was outthere and then I found all of you! Crataegus and

Sharktank gave me control over this disease. I have my kids asking

for tea tree oil, a can explain to you Inositol and what it does

to the CFTR. She knows that if she takes her zithromax late, she

can't take Mg. I am not only educating myself but also educating

her.

For that I thank you! I have been truly inspired by all of you.

These two groups have given me the key to so much knowledge,

something that some of you did not have, not too long ago.

I am getting mushy here but I do mean it.

Thank you Kim for all that time spent to benefit , my beautiful

daughter and all the kids/adults out there!

> > > Can someone tell me the difference between mucoid PA and non-

mucoid

> > > PA or point me in a direction for some reading. As well as a

site

> > > that explains Tobi as a drug regarding it's benefits and side

> > effects.

> > > Also, can PA be detected in a throat swab?

> > > Thanks

> > >

[Guest guest]

Kim, and and (both) et. al. have saved lives every day and

have

given US the gift of sharing what they know. It is rather marvelous to see

you

lapping it all up--think you are right about doctors--if it's not darts,

it's the

classic " cook book " approach to cystic fibrosis--and yet we need them--and

we need us--and YOU!

Love to you, , Kim, , (s) both, , Torsten, ,

and ROSEMARY and on and on and on and on. . . . .

n Rojas

Re: non-mucoid PA vs mucoid Pa

>

> Kim,

>

> I am so humble by your post. At diagnosis, still today, I just got,

> have, the impression that MD's are shooting darts. So, why not learn

> what else was outthere and then I found all of you! Crataegus and

> Sharktank gave me control over this disease. I have my kids asking

> for tea tree oil, a can explain to you Inositol and what it does

> to the CFTR. She knows that if she takes her zithromax late, she

> can't take Mg. I am not only educating myself but also educating

> her.

> For that I thank you! I have been truly inspired by all of you.

> These two groups have given me the key to so much knowledge,

> something that some of you did not have, not too long ago.

> I am getting mushy here but I do mean it.

> Thank you Kim for all that time spent to benefit , my beautiful

> daughter and all the kids/adults out there!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > > > Can someone tell me the difference between mucoid PA and non-

> mucoid

> > > > PA or point me in a direction for some reading. As well as a

> site

> > > > that explains Tobi as a drug regarding it's benefits and side

> > > effects.

> > > > Also, can PA be detected in a throat swab?

> > > > Thanks

> > > >

>

>

>

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

> 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.

>

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

>

>

>

[Guest guest]

Yes, I feel very lucky to have a chance to know all the people from

Crataegus and Sharktank. Some incredible brains, that's for sure. I

like your " cookbook " approach, that's exactly right.

Thank you n!

(who's still waiting for your CF family fiction book ;-))

> > > > > Can someone tell me the difference between mucoid PA and

non-

> > mucoid

> > > > > PA or point me in a direction for some reading. As well as

a

> > site

> > > > > that explains Tobi as a drug regarding it's benefits and

side

> > > > effects.

> > > > > Also, can PA be detected in a throat swab?

> > > > > Thanks

> > > > >

> >

> >

> >

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

> > 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.

> >

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

> >

> >

> >