RE: opinions needed

January 21, 2004

Pattie,

I know that smell you're talking about... It's a hot smell, right? Is

her mucus thicker, green, gray or frothy? Oh, I hate those days.

Thank God we rarely, rarely see those days anymore.

Maybe your daughter's problem isn't coming from the lungs, but from

the sinuses. Until you clear up the sinuses, the lungs will continue

to be a target.

When was on TOBI (28 on/28 off) eventually I saw that he could

only be off TOBI for a couple weeks before symptoms of increased

cough started again.

I swear once he started taking magnesium and did the tea tree oil

inhalations, all this changed for him. We broke the cycle. He also

added MSM at that time, and a month later started supplementing

selenium. All these helped him so much. There's just no way I can

describe the difference -- but even his roommates were greatly

impressed and happy to see their friend thriving!

Anyway, remember that the TOBI and Zithromax will deplete magnesium,

so will stress, and so will those albuterol or Xopenex treatments.

You really have to watch this. Lack of magnesium might be

contributing to her coughing episodes, but also remember that lack of

magnesium can cause the PA to become mucoid AND can cause the mucoid

PA to become resistant to TOBI and other aminoglycoside antibiotics.

Geez, sometimes I feel like I have so little to offer except to

say, " magnesium, magnesium, magnesium! " and " tea tree oil " but when

we've tried everything else and the doctors are standing there

dumbfounded, at least these are two things that offer a measure of

action and protection.

Good luck, I've been there.

Kim

> Hi everyone,

>

> I recently talked about insurance issues that we are facing, thank

you for

> your help with that one. Well now I have more questions! My

daughter first

> cultured PA in September and was treated with three straight months

of Tobi.

> They also added Zithromax to her routine, MWF because of recurrent

infections.

> Well she did great on the Tobi, her PFT's were nearly perfect and

she sounded

> great overall. Well it's been about a month since she is off and

were back to

> dry coughing and when she produces it has that sick smell. Her

breathe in

> general has that infected smell, I hope you all know what I mean

otherwise that

> must sound gross. She has shown all her normal signs of developing

an

> infection. So I called the dr. (the one we cannot see anymore due

to ins. problems)

> and she recommends going on Tobi again indefinitely, 28days on and

28 days

> off. My question is, should they do this even though they haven't

taken a

> culture to see what is going on? I agree with her on some level,

but isn't it

> better to check?

>

> Pattie

>

January 21, 2004

Pattie--Most Drs. believe that you cannot erradicate PA......once cultured

its there! It may remain hidden but there. When " things " stirred up the Drs.

(at least mine) want to make sure that the child has coverage....usually both

oral and inhalation. You don't want to take chances with PA....the damage

(fibrosis-scarring) cannot be undone.

I bet thats the Drs. thinking but don't be afraid to question them until YOU

ARE satisifed. Remember they WORK FOR US.......Make the Dr. explain it til

you are satisifed. There are never any stupid questions - if there were I

would have written a 10 volume set already.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

January 21, 2004

Just to let you know what's happening with my son. , almost 2

years, cultured PA in October. Our clinic here in Toronto puts you on

IV antibiotics (Tobi and Cipro) for 10 days. Then you go home on

inhaled Tobi. He is to be on this until he has 3 clear cultures. If

the first two are clear, he still stays on Tobi until he has 3 in a row.

Hope this helps

Cheryl, mom to 3 boys, Zac almost 8 wocf, Jake 3 wocf, Matty almost 2

wcf

opinions needed

Hi everyone,

I recently talked about insurance issues that we are facing, thank you

for

your help with that one. Well now I have more questions! My daughter

first

cultured PA in September and was treated with three straight months of

Tobi.

They also added Zithromax to her routine, MWF because of recurrent

infections.

Well she did great on the Tobi, her PFT's were nearly perfect and she

sounded

great overall. Well it's been about a month since she is off and were

back to

dry coughing and when she produces it has that sick smell. Her breathe

in

general has that infected smell, I hope you all know what I mean

otherwise that

must sound gross. She has shown all her normal signs of developing an

infection. So I called the dr. (the one we cannot see anymore due to

ins. problems)

and she recommends going on Tobi again indefinitely, 28days on and 28

days

off. My question is, should they do this even though they haven't taken

a

culture to see what is going on? I agree with her on some level, but

isn't it

better to check?

Pattie

January 21, 2004

Fom one Patty to another were in the same spot...and yes ty's on 28

on/off tobi indefinitely.

Problem is it isnt working yet...i was told by pulmo doc thatu fight

to get pa to leave and it will come back, etc until like in my sons

case it probably wont leave again but tobi will help keep it under

control.HA!im so not pleased with that thought but,be it as it may i

have continued the recommended cycle.

Also want to add few years before was on same schedule and it seemed

to pay off...will see what happens...good luck

Patty, mom to tyler 8wcf and 2 wocf

> Hi everyone,

>

> I recently talked about insurance issues that we are facing, thank

you for

> your help with that one. Well now I have more questions! My

daughter first

> cultured PA in September and was treated with three straight months

of Tobi.

> They also added Zithromax to her routine, MWF because of recurrent

infections.

> Well she did great on the Tobi, her PFT's were nearly perfect and

she sounded

> great overall. Well it's been about a month since she is off and

were back to

> dry coughing and when she produces it has that sick smell. Her

breathe in

> general has that infected smell, I hope you all know what I mean

otherwise that

> must sound gross. She has shown all her normal signs of developing

an

> infection. So I called the dr. (the one we cannot see anymore due

to ins. problems)

> and she recommends going on Tobi again indefinitely, 28days on and

28 days

> off. My question is, should they do this even though they haven't

taken a

> culture to see what is going on? I agree with her on some level,

but isn't it

> better to check?

>

> Pattie

>

January 21, 2004

Pattie, Pseudomonas usually has a sort of wintergreen odor to it.

Might be time to call the doctor and have a culture grown and analysed.

Good Luck, n Rojas, wcf

opinions needed

Hi everyone,

I recently talked about insurance issues that we are facing, thank you for

your help with that one. Well now I have more questions! My daughter first

cultured PA in September and was treated with three straight months of Tobi.

They also added Zithromax to her routine, MWF because of recurrent infections.

Well she did great on the Tobi, her PFT's were nearly perfect and she sounded

great overall. Well it's been about a month since she is off and were back to

dry coughing and when she produces it has that sick smell. Her breathe in

general has that infected smell, I hope you all know what I mean otherwise

that

must sound gross. She has shown all her normal signs of developing an

infection. So I called the dr. (the one we cannot see anymore due to ins.

problems)

and she recommends going on Tobi again indefinitely, 28days on and 28 days

off. My question is, should they do this even though they haven't taken a

culture to see what is going on? I agree with her on some level, but isn't it

better to check?

Pattie

January 21, 2004

Thanks to Kim and all the people from Crataegus, a is doing

really well. a takes Solgars chelated Mg, 300 mg/day for a while

I thought it was 600 mg until Kim pointed out that it was not 400 mg

or 200 mg per pill but 100 mg per pill. We do Lema oil, this is

everybody here, and she is taking Inositol. Before Inositol a

had a hacking cough and runny nose(since birth), when we started, we

bought Solaray Inositol, which it was not pure it is mixed with some

rice flour and what not. Her cough went from all the time to a few

times a day, her runny nose stop. When the bottle of Inositol was

finished I went to GNC and bought the powder, pharmaceutical grade,

the coughed stop all together.

She is still doing the on/off tobi, pulmozyme, zithro, clarinex,

advair, and singulair.

I hope this helps,

mom of a 10 wcf, Venanzio 7 nocf, Pepe 3 nocf

NOTE: By the way Inositol has been shown to correct the cftr defect.

I do not remember if it is exclusive to Delta f 508, n seems to

remember the subject was homozygous delta f 508

> > Hi everyone,

> >

> > I recently talked about insurance issues that we are facing,

thank

> you for

> > your help with that one. Well now I have more questions! My

> daughter first

> > cultured PA in September and was treated with three straight

months

> of Tobi.

> > They also added Zithromax to her routine, MWF because of

recurrent

> infections.

> > Well she did great on the Tobi, her PFT's were nearly perfect and

> she sounded

> > great overall. Well it's been about a month since she is off and

> were back to

> > dry coughing and when she produces it has that sick smell. Her

> breathe in

> > general has that infected smell, I hope you all know what I mean

> otherwise that

> > must sound gross. She has shown all her normal signs of

developing

> an

> > infection. So I called the dr. (the one we cannot see anymore

due

> to ins. problems)

> > and she recommends going on Tobi again indefinitely, 28days on

and

> 28 days

> > off. My question is, should they do this even though they

haven't

> taken a

> > culture to see what is going on? I agree with her on some level,

> but isn't it

> > better to check?

> >

> > Pattie

> >

January 21, 2004

Hooray! for you and a, --a job well done! Love and congratulations to

you both! n Rojas

Re: opinions needed