Re: My Mother

[Guest guest]

Low doses of antibiotics taken as prophlyactics. I take 2: Erythromycin for 3 days a week followed by Doxycycline the following week for 3 days then back to the Erythromycin and so on. It has worked for me. I also do postural drainage.

i was on doxcycline a couple years back..do you have any gastro probs w/that med? it left a horrible taste in my mouth the whole time i was on it plus it made me very gassy..now your treatment plan..how ongoing is this? long term? all month? years? thanks for your input..Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

There must be more than an answer such as no prevention. I look forward to hearing from you.

Thank you,

Ria

Ria..no prevention from what? the illness itself or the infections that accompany it..before I can respond could you answer that? Thanks..Sandie in MD

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

My pulmnologist believes that antibiotics should be taken only if an infection is present, i.e. if sputum turns green and a culture reveals the bug that is present. He is worried that if you remain on antibiotics for long periods, the bugs become resistant. However postural drainage works well for me, I do it twice, once in the morning and once at night.Tolly

Tolly..for the general healthy population..yes..that's absolutely correct. However..for someone like me, and others like me..when you have consistent frequent flareups one after the other, continually, you're on anti's more than not..it becomes a way of life..with Bronchiactasis, aka, wet lung..for many many of us flareups become a way of life. The only way to treat them is on sometime of maintenance regime..therefore prophylatic treatment becomes a necessity..

Sandie

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

Low doses of antibiotics taken as prophlyactics. I take 2: Erythromycin for 3

days a week followed by Doxycycline the following week for 3 days then back to

the Erythromycin and so on. It has worked for me. I also do postural drainage.

Marsha/NYC

[Guest guest]

>

>

>

>

>

> In a message dated 12/7/2006 9:52:09 A.M. Eastern Standard Time,

> marsha.granville@... writes:

>

>

>

>

> Low doses of antibiotics taken as prophlyactics. I take 2:

Erythromycin for

> 3 days a week followed by Doxycycline the following week for 3

days then back

> to the Erythromycin and so on. It has worked for me. I also do

postural

> drainage.

>

> i was on doxcycline a couple years back..do you have any gastro

probs w/that

> med? it left a horrible taste in my mouth the whole time i was on

it plus it

> made me very gassy..now your treatment plan..how ongoing is this?

long term?

> all month? years? thanks for your input..Sandie

>

>

> Never Look Down on Someone

> Unless You're Gonna Help Them Up

My pulmnologist believes that antibiotics should be taken only if an

infection is present, i.e. if sputum turns green and a culture

reveals the bug that is present. He is worried that if you remain on

antibiotics for long periods, the bugs become resistant.

However postural drainage works well for me, I do it twice, once in

the morning and once at night.

Tolly

[Guest guest]

My plan is ongoing. Very low dosages. No side affects. Been on it for 3-4

months now.

Marsha

[Guest guest]

Tolly

My specialist also believes that being on antibiotics

all the time is not good and is one of the last things he would prescribe

doing. The rationale is exactly as you mentioned, and we hear of this

through health care officials frequently about being on meds all the time make

us resistant, thus the superbugs. I have started the postural drainage

technique….which I learned from within this group. It seems to be

helping some. I understand the concern that my doctor shared with me last

week, that we have to try to control the flareups as each time we get ill, it

continues to deteriorate our lungs/bronchs. A lot of individuals in this

group are on a regime of altering different antibiotics….a maintenance

program in a sense. It is important to get rid of the crud by

coughing/expelling the stuff. This is the stuff like settles in areas of

our bronc and grow bacteria. This is like any other fluid…..stays

there long enough grows bugs. I have had CAT scans, lung biopsy, acid

reflux tests and I recognize this is a condition that I will live with the rest

of my life. I understand that every time we cough, some of the juices can

land in our tubes, same as acid reflux being another way moist matter can get

into the respiratory system. Do your best to stay clear of pollutants….which

helps me the most.

in Idaho

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...

Sent: Thursday, December 07, 2006

9:52 AM

To: bronchiectasis

Subject: Re: Re:

My Mother

In a

message dated 12/7/2006 10:31:12 A.M. Eastern Standard Time,

abrowde@... writes:

My pulmnologist

believes that antibiotics should be taken only if an

infection is present, i.e. if sputum turns green and a culture

reveals the bug that is present. He is worried that if you remain on

antibiotics for long periods, the bugs become resistant.

However postural drainage works well for me, I do it twice, once in

the morning and once at night.

Tolly

Tolly..for

the general healthy population..yes..that's absolutely correct. However..for

someone like me, and others like me..when you have consistent frequent

flareups one after the other, continually, you're on anti's more than not..it

becomes a way of life..with Bronchiactasis, aka, wet lung..for many many of

us flareups become a way of life. The only way to treat them is on sometime

of maintenance regime..therefore prophylatic treatment becomes a necessity..

Sandie

Never

Look Down on Someone

Unless You're Gonna Help Them Up

[Guest guest]

>Hi Ria and welcome! I, too am new to this group. There is

absolutely a way to prevent " flare Ups " . There are many sorts of PT

or physical therapy you can do such as a " pep device " , a " flutter " at

percusor or even just a cupped hand. Ask your doc about PT for your

mom and what you can do to help. Is there anyway you can go to the

appointments with your Mom to learn more. It's basically a build up

of thick mucus in a certian area of the lung. There is no real for

sure " cause " , so stop beating yourself up over what the cause could be

and concentrate on what you can do for the future to prevent permanent

lung damage.

> Hi everyone,

>

> I'd like to introduce myself and explain my interest in this

group. My name is Ria and I live in Montreal, Quebec. My mother is

the one diagnosed with bronchiectasis; it's been several years. She

is the type of person who completely trusts her pulmonary specialist,

who has been following her for the last 15 years and whom I think is

fantastic. The only problem being is that she is too afraid to ask

any questions about the condition and I, having a science background

and being her daughter, want to learn as much as possible and see if

there is any way I could help her. From what he tells her, there is

no way to prevent future infections. I got the basic mechanisms of

the condition, but want to know what more there is.

>

> There must be more than an answer such as no prevention. I look

forward to hearing from you.

>

> Thank you,

> Ria

>

> __________________________________________________

>

[Guest guest]

There is no real forsure "cause", so stop beating yourself up over what the cause could beand concentrate on what you can do for the future to prevent permanentlung damage.

Sometimes I feel like I'm talking to myself on this list.

for some of us there's no definitive reason.but for others, such as myself..there is.

As i've explained numerous times..my primary condition is alpha1 antitrypsin deficiency..as a result of this..my secondary condition..manifested by my A1AD is Bronchiactasis....so there in lies my dx and the reason for my bronchiactasis..

Sandie in MD

maybe if it bothers you that much and you need answers..start demanding them..ask your dr to test her for A1AD..it's a simple serum level blood test..

Best Wishes

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

There is no real forsure "cause", so stop beating yourself up over what the cause could beand concentrate on what you can do for the future to prevent permanentlung damage.

Sometimes I feel like I'm talking to myself on this list.

for some of us there's no definitive reason.but for others, such as myself..there is.

As i've explained numerous times..my primary condition is alpha1 antitrypsin deficiency..as a result of this..my secondary condition..manifested by my A1AD is Bronchiactasis....so there in lies my dx and the reason for my bronchiactasis..

Sandie in MD

maybe if it bothers you that much and you need answers..start demanding them..ask your dr to test her for A1AD..it's a simple serum level blood test..

Best Wishes

Never Look Down on SomeoneUnless You're Gonna Help Them Up

[Guest guest]

I agree with Sunny. My family doctor is very good, one of the best I've ever had. He believes that there is always an underlying cause for bronchiectasis. Alpha-1 is rare. We should all be tested for it. Disorders involving cilia of the lungs - Primary Cilary Dyskensia are also rare and deserve attention.. Cystic fibrosis is another disease that is rare. Symptoms do not always manifest in childhood. Increasingly adults are being diagnosed and some have only had symptoms start in later childhood (including adolescent years, here) or adulthood. Sometimes people inhaled a foreign object into their airways, but don't realise it. This can happen even to adults. Sometimes bronchiectasis is due to childhood whooping cough or pneumonia. My point is that there is always a reason for bronchiectasis. It just doesn't occur out of the blue. Something happened to the lungs that has lead to them developing bronchiectasis. I agree we need aggressive doctors and we need to push for

answers. Even if they cannot uncover a reason at this time there is a reason. I'm going to ask my GP to order a Alpha-1 test. We think its CF, but its good to cover every base. Thanks:0) Liz e-mail:maryholt12@... or lungsformary@...Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0)carepages.com name:maryelizabethholt:o) "Miracles happen with love....." ..... Please support your local children's hospital.... and "Give with all your might!" http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ )"I don't give in, I don't give up, and I don't take no for an answer." ~Doris ~

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