Re: Input needed

December 16, 2004

I find that the a/b's work the best, but sometimes those and the steroids

work wonders together. I agree with you though, I don't like to take too

many steroids because they are so hard on your body. Whenever I tell my

doc I have a bug whether they can find it or not, she starts me on a/b's

right away. That usually loosens up what is way down in there (where the

little bugs are hiding) and then I can give them a better sputum sample.

I'm glad to hear things are improving for you.

a Belling

UNMC Department of Surgery

983280 Nebraska Medical Center

Omaha, NE 68198-3280

(402)559-6784 (phone) (402)559-6749 (fax)

" junefraser2002 "

<junefraser@...

om> To

bronchiectasis

12/16/2004 08:21 cc

AM

Subject

Input needed

Please respond to

bronchiectasis@ya

hoogroups.com

Hi everyone, need your thoughts and advice re my negative sputum tests.

After being really ill for some weeks I decided to put myself on

Tetracycline on

Monday. (had some in reserve which GP gave me before)Low and behold

today Thursday I am improving leaps and bounds, gunk is now white instead

of brown and much thinner so I can now cough up and clear my lungs. I am

not having nearly such bad asthma actually am sleeping through the night.

I

just feel so much better I can't believe it . I've also reduced my steroids

to 2

just to prove to myself they are not the answer though I'm supposed to

increase to 6 daily next week for more lung function tests. Tina, I know

you

said you went through all this with Jonathon, I just now want to prove to

the

doctors treating me that what I've maintained all along is that antibiotics

help

me more than anything. Because the sputum tests says no bug I don't think

they believe me. Kept a huge diary of everything to prove to them that my

peak flow improves no end when I'm on A/B's. Can anyone suggest what I do

now. I don't claim I knnow more than the docs but I just know I'm on the

right

track. Any advice, suggestions, experiences that will help me would be

appreciated.Love to everyone June

December 16, 2004

June,

All I can tell you is that 's Doctor said that even though he may not grow anything form the sputem antibiotics will often help.

No reasons or explanations it just happens!

Hugs

Tina Hillier Mum to , 14 years old and possesor of an Extra Special Chromosome. Rosie 12 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 7, A budding Artist and Singer, And who is 6 years old and a lovely friend! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@...

www.cdlsrosie.homestead.com

I do not know what the future holds, But I am glad I know who holds the Future.

Win a castle for NYE with your mates and Yahoo! Messenger

December 16, 2004

June,

Barb's advice was excellent. I keep a daily log of my temperatures and peak flows. That is the first thing that my pulmonologist's nurse asks me when I call indicating that I am having a problem.

I had a bronchoscopy after my second bout of walking pneumonia and after my primary care doctor finally referred me to a pulmonologist after my requesting a referral many times. The bronchoscopy did not bother me as I have had several endoscopies and colonscopies, brilateral breast cancer surgery with reconstruction, two broken bones and surgery to align the bones. My primary care doctor said that he came by to see me after the procedure but that I had already left. I awoke quite quickly after the procedure and did not think that the procedure was uncomfortable as I was not awake during the procedure. I coughed a little when I returned home, but much less than I did prior to the procedure. My culture showed few pseudomonas cells and indicated which antibiotics it was most sensitive to. I still think that in my situation that my sinuses were the source of my lung problems.

I hope that the diary will help your doctor to be able to help you more.

Norma

December 16, 2004

June,

I’ve also had problems with negative

cultures. The explanation that was

given to me was that antibiotics kill off enough of the bacteria so that

nothing grows in the culture—even if I hadn’t taken any for quite

some time. A bronchoscopy was the

only way they could get stuff from deep enough to grow a culture. It was also the way my first

pulmonologist found the lung damage in the first place although I think that he

suspected that this was the problem. He also told me that the infection tends

to sit in the damaged areas and you can’t always cough it out. It really isn’t a surprise to many

of us that you can’t get a culture to grow. I was also told to keep a diary like you

are doing. My doctor mainly wanted

me to take my temperature in the morning and at night to monitor when an

infection was starting. He wanted

to know if specific antibiotics were working and, if so, how long it was before

another infection started. Maybe

you should print out some of our responses and take them to your next

appointment. Since the doctors don’t

seem to see this problem very often, yours might be interested to know how

others are being treated. When my

first pulmonologist wasn’t able to keep the infections under control (and

didn’t seen any alternatives to surgery), he sent me for a second

opinion. The second doctor was very

optimistic for another year and a half but finally recommended surgery. Hope this helps a little.

Barb

Input

needed

Hi everyone, need your thoughts and advice re my

negative sputum tests.

After being really ill for some weeks I decided to

put myself on Tetracycline on

Monday. (had some in reserve which GP gave

me before)Low and behold

today Thursday I am improving leaps and bounds,

gunk is now white instead

of brown and much thinner so I can now cough up

and clear my lungs. I am

not having nearly such bad asthma

actually am sleeping through the night. I

just feel so much better I can't believe it . I've

also reduced my steroids to 2

just to prove to myself they are not the

answer though I'm supposed to

increase to 6 daily next week for more lung

function tests. Tina, I know you

said you went through all this with Jonathon,

I just now want to prove to the

doctors treating me that what I've maintained all

along is that antibiotics help

me more than anything. Because the sputum tests

says no bug I don't think

they believe me. Kept a huge diary of everything

to prove to them that my

peak flow improves no end when I'm on A/B's. Can

anyone suggest what I do

now. I don't claim I knnow more than the docs but

I just know I'm on the right

track. Any advice, suggestions, experiences that

will help me would be

appreciated.Love to everyone June

December 16, 2004

Thanks Tina, I wish they could explain why this is but the antibiotics

thin the mucus so I can cough up! How often does have

antibiotic therapy, is it just for infections or as a preventative

measure?

> June,

> All I can tell you is that 's Doctor said that even though he

> may not grow anything form the sputem antibiotics will often help.

> No reasons or explanations it just happens!

> Hugs

>

> Tina Hillier Mum to , 14 years old and possesor of an Extra

> Special Chromosome. Rosie 12 ( who enjoys a life enhanced by the Joys

> and Trial of CdLS) 7, A budding Artist and Singer, And

> who is 6 years old and a lovely friend! Isle of Wight UK

> http://uk.photos.yahoo.com/tdlhillier

> mailto:tdlhillier@...

>

> www.cdlsrosie.homestead.com

>

> I do not know what the future holds, But I am glad I know who holds

> the Future.

>

> Win a castle for NYE with your mates and Yahoo! Messenger

>

December 16, 2004

Barb, thanks that is really helpful, I've printed your reply out to

take to Brompton on 5th January. I had not thought about logging my

temperature, I'll start that tomorrow. Sometimes I just run a slight

temperature but other days I have a roaring fever, red cheeks and

burning hot and then cold. My hubby always knows by my face when I'm

feverish. The improvement with A/B's is dramatic so I know I'm on the

right track. Last time I went 6 weeks without them and was so ill it

took me a couple of weeks on Tetracycline to recover. That was my ninth

clear sputum test!!!!I'm wondering if I should ask for an on/off regime

of anti b's to see if that helps? I'm really anxious about having a

Broncoscophy and surgery will not help as my damage is top and bottom

of right lung, I'm running out of options here. Love June in London

> June,

>

> I’ve also had problems with negative cultures. The explanation that

> was given to me was that antibiotics kill off enough of the bacteria

> so that nothing grows in the culture—even if I hadn’t taken any for

> quite some time. A bronchoscopy was the only way they could get stuff

> from deep enough to grow a culture. It was also the way my first

> pulmonologist found the lung damage in the first place although I

> think that he suspected that this was the problem. He also told me

> that the infection tends to sit in the damaged areas and you can’t

> always cough it out. It really isn’t a surprise to many of us that

> you can’t get a culture to grow. I was also told to keep a diary like

> you are doing. My doctor mainly wanted me to take my temperature in

> the morning and at night to monitor when an infection was starting.

> He wanted to know if specific antibiotics were working and, if so, how

> long it was before another infection started. Maybe you should print

> out some of our responses and take them to your next appointment.

> Since the doctors don’t seem to see this problem very often, yours

> might be interested to know how others are being treated. When my

> first pulmonologist wasn’t able to keep the infections under control

> (and didn’t seen any alternatives to surgery), he sent me for a second

> opinion. The second doctor was very optimistic for another year and a

> half but finally recommended surgery. Hope this helps a little.

>

> Barb

>

> Input needed

>

> Hi everyone, need your thoughts and advice re my negative sputum

> tests.

> After being really ill for some weeks I decided to put myself on

> Tetracycline on

> Monday. (had some in reserve which GP gave me before)Low and behold

> today Thursday I am improving leaps and bounds, gunk is now white

> instead

> of brown and much thinner so I can now cough up and clear my lungs.

> I am

> not having nearly such bad asthma actually am sleeping through the

> night. I

> just feel so much better I can't believe it . I've also reduced my

> steroids to 2

> just to prove to myself they are not the answer though I'm supposed to

> increase to 6 daily next week for more lung function tests. Tina, I

> know you

> said you went through all this with Jonathon, I just now want to

> prove to the

> doctors treating me that what I've maintained all along is that

> antibiotics help

> me more than anything. Because the sputum tests says no bug I don't

> think

> they believe me. Kept a huge diary of everything to prove to them

> that my

> peak flow improves no end when I'm on A/B's. Can anyone suggest what

> I do

> now. I don't claim I knnow more than the docs but I just know I'm on

> the right

> track. Any advice, suggestions, experiences that will help me would be

> appreciated.Love to everyone June

>

December 17, 2004

Hi Norma, lovely to hear from you. I'm really nervous about a

Broncoscophy because some people say you are awake and it's awful. I'm

not the world's greatest patient as I get anxious and have asthma

attacks when undergoing any new procedure! Going to buy an accurate

thermometer today and start yet another chart! Hope you are keeping

well and looking forward to Christmas Lots of love from June

> June,

>

> Barb's advice was excellent. I keep a daily log of my temperatures

> and peak flows. That is the first thing that my pulmonologist's nurse

> asks me when I call indicating that I am having a problem.

>

> I had a bronchoscopy after my second bout of walking pneumonia and

> after my primary care doctor finally referred me to a pulmonologist

> after my requesting a referral many times. The bronchoscopy did not

> bother me as I have had several endoscopies and colonscopies,

> brilateral breast cancer surgery with reconstruction, two broken bones

> and surgery to align the bones. My primary care doctor said that he

> came by to see me after the procedure but that I had already left. I

> awoke quite quickly after the procedure and did not think that the

> procedure was uncomfortable as I was not awake during the procedure.

> I coughed a little when I returned home, but much less than I did

> prior to the procedure. My culture showed few pseudomonas cells and

> indicated which antibiotics it was most sensitive to. I still think

> that in my situation that my sinuses were the source of my lung

> problems.

>

> I hope that the diary will help your doctor to be able to help you

> more.

> Norma

>

December 17, 2004

June,

Those are the exact symptoms I was having - freezing cold one minute,

burning hot sweats the next, barely able to function at all. They weren't

able to get a culture from me for awhile, but when they finally did - they

found my Moraxella catarrhalis. I also lost my voice for two days with

this. They are treating me with zythromax and I'm finally feeling like I

can function again. After you take those antibiotics for a few days, try

giving them a culture again - maybe you'll get something from deeper down.

Hope this helps.

a Belling

UNMC Department of Surgery

983280 Nebraska Medical Center

Omaha, NE 68198-3280

(402)559-6784 (phone) (402)559-6749 (fax)

June Fraser

<junefraser@...

om> To

bronchiectasis

12/16/2004 06:03 cc

PM