Re: Need common sense tips to reduce pseudomonas exposure

[Guest guest]

Maja,

That is what I was told also. That you may have " clean " cultures but that

just means the numbers are down as to be undetectable but there is still

some in there and it can flare up, this usually happens for us when

gets a cold or viral infection. More mucus seems to = more PA. But perhaps

the way they treat PA in Denmark or where ever that Dr. Hoiby is from they

do get rid of it, they treat it super aggressively, more so than any US docs

I've heard of are willing to do. My daughter hasn't cultured PA since 1997

but I think she does still probably have it, it seems to have changed into

stenotrophomonas maltopilia but I actually just think the S. Malto is

overgrowing it so it doesn't show up, just the steno and staph. I don't

really understand why she has staph when she never used to before when she

did culture positive for PA. I don't really understand any of this but

maybe some of you do!! She is on Tobi so maybe that is keeping the PA in

check. Recently when she has gotten sick it has seemed like it was the

staph causing the problems, we treat the staph with Augmentin duo and she

gets better. Its kind of a mystery.

take care,

M

mom of age 19 wcf and Nick age 21 nocf

Need common sense tips to reduce pseudomonas exposure

> Auch... I don't believe that! Are you saying that even

> when the culture is negative the cf people still have

> PA????

>

> Maia

> --- sparkysput15 wrote:

> > My understanding is Pseunomonas Aeruginosa, once

> > cultured in a CF

> > patient, will probably never truly " be gone " . It

[Guest guest]

That's what we have been told in Buffalo too! Kathy G.

Need common sense tips to reduce pseudomonas exposure

>

>

> > Auch... I don't believe that! Are you saying that even

> > when the culture is negative the cf people still have

> > PA????

> >

> > Maia

> > --- sparkysput15 wrote:

> > > My understanding is Pseunomonas Aeruginosa, once

> > > cultured in a CF

> > > patient, will probably never truly " be gone " . It

>

>

>

>

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

> 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]

I didn't mean the PA mutating to MRSA I meant it mutating to

stenotrophomonas maltophilia, since they are similar bugs and S. Maltophilia

used to be called pseudomonas maltophilia. That theory is probably wrong

anyway, I was just thinking it could be possible. I am not sure what you

are talking about with pa in the air and reinfecting the PWCF. I meant my

daughter had PA, she had 3 strains, 2 non mucoid and 1 mucoid, she was

colonized with it, (this was from 1986-1997) but now it hasn't shown up on

a culture since 1997 but I still don't think it is gone, I think it is

hiding down in her lungs somewhere. She can almost never do sputum cultures

because she doesn't normally cough stuff up. She has had bronch cultures

and throat cultures which have both grown staph (NOT MRSA) and Steno

Maltophilia. So to me it is a mystery where has the PA gone? Is it gone?

I don't know. That's all I was trying to say. Theres no new " breakthrough "

I am not sure what you meant by that either.

love,

Re: Need common sense tips to reduce pseudomonas

exposure

>

> I don't think it's a mistery. First I don't belive PA

> can mutate to MRSA, we discussed this a while ago here

> on the list. BUT I do belive that the nasty bugs are

> teritorial, i.e. if you have MRSA you are less likely

> to catch PA because the MRSA keeps its teritory.. and

> the other way around. Also again for Dr. Hoiby's

> treatment - remember they ONLY apply the agressive

> treatment AFTER you are shown to have a chronic

> (mucoid) PA colony.. I.e. when your lungs are already

> colonised with PA, not just a single infection. I

> really don't believe that a negative culture means you

> still have PA. And yes, PA is everywhere, but there is

> a difference between PA colony and PA infection - you

> can have one without the other. So when someone flares

> up for me it just means you have an infection, caused

> by PA but that doesn't mean you have the colony in

> your lungs established. That's why you treat the

> infection so it doesn't grow into colony (which is

> dangerous)... I would be interested to know exactly

> what your doc mean by 'they still have PA even if the

> culture is negative'. Does it mean they have reached

> the level of .. the air for example, or does it mean

> that we (the noncf people) have PA all the time as

> well???

> Yes, PA is flying in the air and I know there might be

> some concentration of PA in the air.. so when you

> breath in/out it's still there, BUT for the culture

> they test the sputum.. not the air. Either I'm missing

> something simple, or the there is some extremely new

> and 'breakthrough' info that your doctors know which I

> haven't heard of.. could be just a matter of

> definitions and explaining things, I don't know.. but

> I would like to.

>

> Maia

>

[Guest guest]

In a message dated 5/28/2003 3:18:20 AM Eastern Daylight Time,

majahristozova@... writes:

> Auch... I don't believe that! Are you saying that even

> when the culture is negative the cf people still have

> PA????

>

Yes...and normally if you have PA you have other bacteria's that PA took

over. While it may not grow on a culture I think its present and hiding and

should you get a different infection it could stir things up. Thats JUST my

OPINION.

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]

I've always been told the same thing. cultured pseudomonas every time

she had a sputum test except for the last time. I was told before that not to

get to upset about her having the pseudo because once they get it is gonna stay,

even if it doesn't show up on a sputum test. They say it hides. (existing in

such very low levels that they are unable to grow it until they get another

infection) Sometimes they don't get enough sputum to culture anything.

also cultures staph. I think this " even if it doesn't culture it is still

there " is a fairly common attitude in most clinics- at least from what I have

heard both here and elsewhere...

Re: Need common sense tips to reduce pseudomonas exposure

In a message dated 5/28/2003 3:18:20 AM Eastern Daylight Time,

majahristozova@... writes:

> Auch... I don't believe that! Are you saying that even

> when the culture is negative the cf people still have

> PA????

>

Yes...and normally if you have PA you have other bacteria's that PA took

over. While it may not grow on a culture I think its present and hiding and

should you get a different infection it could stir things up. Thats JUST my

OPINION.

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]

I agree with Rosemary. We were told once you culture for PA you always have

it. If another culture does not show it that may mean it is just not as

active or in the location of where that culture came from.

Meg

Re: Need common sense tips to reduce pseudomonas

exposure

> In a message dated 5/28/2003 3:18:20 AM Eastern Daylight Time,

> majahristozova@... writes:

>

> > Auch... I don't believe that! Are you saying that even

> > when the culture is negative the cf people still have

> > PA????

> >

>

> Yes...and normally if you have PA you have other bacteria's that PA took

> over. While it may not grow on a culture I think its present and hiding

and

> should you get a different infection it could stir things up. Thats JUST

my

> OPINION.

>

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

> with CF. I have a dog named TOBI and

> coined the phrase " BREATHE DAMMIT "

>

>

>