Re: New Member with ??s

[Guest guest]

Thanks for the Welcomes and the replies to my inquiry.

I never understood this, but, taking anti's every day or quite frequently < I'm on them just about 28 days out of the month, lately ) is that not good for us? What about the concern my GP mentioned..Pseudomonas??

Thanks for your replies..

Sandie A1ATD ZZ, MD

Can't sleep?Try counting your blessings...

[Guest guest]

Hello Sunnie,

I take antib prophylactically. Erythromycin 3x a week; Doxycyline 3x the

following week and then back to the Erythromycin and so on. Three days per

week for each, any 3 days. So I do Mon, Wed, Fri. Have only been on this

regimen a few weeks but I think it is helping. I also do postural drainage

(hang over the side of the bed, arms too) breathe deeply and cough. Takes

about 20-30 minutes. I put a book on the floor and read to pass the time in

between. At the beginning I simply could not believe the quantity of phlegm

that came up. Now, so not much. In terms of my cough, I still have that

and seem to have two " attacks " a day, mid morning and mid afternoon where I

have to find a place a can just cough for a few minutes and spit some stuff

out. As I work in an office and ride the subway, it makes for some

embarrassing moments.

Marsha/NYC

[Guest guest]

Dear Sandie,Welcome to the group.  You will be able to learn a great deal from the group.  I have.  I could be wrong and I have only used this method once but look this up on the web.  The last time I was sick I did not get pneumonia which I have had had yearly or more for years.  I got quite sick but it did not go to my lungs.  I have only used it once but I will keep you posted.Check out www.health-reports.com/pneumonia.html.   I never took antibiotics.   Rainbows    Good Morning Everyone   My name is Sandie. I'm new to this list. I'm on another support list titled Alpha1 Antitrypisin Deficiency. For those of you who have never heard of this disorder it's genetic..liver/lung..chronic and progressive, unlike the run of the mill COPD or Emphysema. Some have compared us to those who suffer from CF generally speaking.   I suffer from Bronchiactesis as a symptom of my ATATD. I have the vest. I don't use near as often as I should. I have a frequent cough too. I expel a lot of mucous in the mornings, after I first wake. It usually takes me anywhere from a good half hour to hour..it's rather ritualistic anymore..I wake..use my albut..cough, get water..sit at the puter desk and start my pulmonary ' cleansing '. After that I can breathe better and begin my day.   I suffer from frequent, consistent infections as a result of my bronchiactasis..I'm soooooo sick of being sick and my colon is revolting from all the freekin anti's I nearly live on.   Therefore, my ?? to the group is this. How many suffer from frequent infections as I do..( I'm talking 2/month, almost back to back ). What treatment are you using for your infections? Which anti's are you using? Have any of you or are any of you currently on maintenance meds to halt the infections?   Dr. Brantley is on my support group em list for A1ATD. My alpha net coordinator suggested I write to him (which I'll do next ) to inquire what his method of treatment is. I was told he goes prophylatic ( sp )..Zythromax every other day long term.   Thanks for your input Sandie   Can't sleep?Try counting your blessings...<sunnie.jpg><sunnie.jpg> Appleton9229 Regents Road, #L427La Jolla CA 92037email  nancyappleton@...website  nancyappleton.com

[Guest guest]

Sandie, welcome to our group. I am on an antibiotic every day.

Azithromycin. I am to take it every day and then in December return to

the Mayo Clinic in MN for a recheck. I started the daily antibiotic in

June. It had cut down on my mucus but, not completely. TAke care!

Cook, Case Manager

UICOMP

One Illini Dr.

Peoria, IL 61656-1649

>>> Sunniesback55@... 09/26/06 1:24 AM >>>

Good Morning Everyone

My name is Sandie. I'm new to this list. I'm on another support list

titled

Alpha1 Antitrypisin Deficiency. For those of you who have never heard of

this

disorder it's genetic..liver/lung..chronic and progressive, unlike the

run

of the mill COPD or Emphysema. Some have compared us to those who suffer

from

CF generally speaking.

I suffer from Bronchiactesis as a symptom of my ATATD.

I have the vest. I don't use near as often as I should. I have a

frequent

cough too. I expel a lot of mucous in the mornings, after I first wake.

It

usually takes me anywhere from a good half hour to hour..it's rather

ritualistic

anymore..I wake..use my albut..cough, get water..sit at the puter desk

and

start my pulmonary ' cleansing '. After that I can breathe better and

begin my

day.

I suffer from frequent, consistent infections as a result of my

bronchiactasis..I'm soooooo sick of being sick and my colon is revolting

from all the

freekin anti's I nearly live on.

Therefore, my ?? to the group is this. How many suffer from frequent

infections as I do..( I'm talking 2/month, almost back to back ). What

treatment are

you using for your infections? Which anti's are you using? Have any of

you

or are any of you currently on maintenance meds to halt the infections?

Dr. Brantley is on my support group em list for A1ATD. My alpha net

coordinator suggested I write to him (which I'll do next ) to inquire

what his method

of treatment is. I was told he goes prophylatic ( sp )..Zythromax every

other day long term.

Thanks for your input

Sandie

Can't sleep?

Try counting your blessings...

[Guest guest]

Yes, it is a concern that's why prophly. is preferred but not perfect, by far.

Do you take acidaphilous(spelling?) and eat yogurt? That is important when you

take antib.

Marsha

[Guest guest]

I eat yogurt but dont do the acidiphillus cause I have such a hard time swallowing pills..yea, I know about the tummy and the anti dilemna..

thanks

Can't sleep?Try counting your blessings...

[Guest guest]

Yes, I take a probiotic and try to have yogurt every day.

Cook, Case Manager

UICOMP

One Illini Dr.

Peoria, IL 61656-1649

>>> marsha.granville@... 09/26 9:20 AM >>>

Yes, it is a concern that's why prophly. is preferred but not perfect,

by far. Do you take acidaphilous(spelling?) and eat yogurt? That is

important when you take antib.

Marsha

[Guest guest]

,

Please tell me about the Mayo clinic. Do they have a program for bronchiectasis?

Marsha/NYC

[Guest guest]

I don't know what more one can do.

Thanks for your reply.

Marsha

[Guest guest]

Hello Sandie and welcome. I am new too. I started getting sick

just about a year ago but my regular doc treated me with cough

syrup! By December I was really bad so at my insistence he ordered a

chest X-ray, put me on antibiotics [low dose] along with prednisone

[low dose] ... made me feel better but my cough returned with a

vengeance a month or two later. More X-rays and more cough syrups

later, my doc finally sent me to a pulmonary specialist. Another

chest X-ray and this time a CT scan revealed bronchiectasis ... he

even told me that checking the prior Xrays I actually had pneumonia

but it went undiagnosed!! So this doc is " testing " me out on

antibiotics and put me on Cipro 750 mg along with a good dose of

prednisone. Definitely cleared me up for a while. But this past w/e

it came back again with a vengeance, don't know why. I'm coughing

and coughing although this time I am not producing much mucus but I

am wheezing so bad it keeps me awake at night! I have a flutter

Acapella devise which helps loosen my mucus along with Albuteral. I

went ahead and ordered a saltpipe after learning about such a

natural devise by the wonderful people in this support group. I

have also learned about a percusser and a vest but both are

expensive and I haven't ventured out that far yet. Luckily my doc

gave me a huge prescription of antibiotics and prednisone to take on

my own when I get " flare ups " like now. Awful disease. My husband

says " do I have to live with this for the rest of our lives? " cheeky

monkey!! Until death do us part I said, ha ha! It does help when I

have him pound my back every night! I also learned from this group

NOT to purchase an air purifier " Ionizer " unless it is a Hepa type

as the former causes a real problem with people like us with

compromised lungs. Check out the American Lung Association .. great

informational web site. I have not heard of your disease which, you

say, causes bronchiectasis as a symptom. I wish you well and hope

to hear from you again!

Janet

>

> Good Morning Everyone

>

> My name is Sandie. I'm new to this list. I'm on another support

list titled

> Alpha1 Antitrypisin Deficiency. For those of you who have never

heard of this

> disorder it's genetic..liver/lung..chronic and progressive, unlike

the run

> of the mill COPD or Emphysema. Some have compared us to those who

suffer from

> CF generally speaking.

>

> I suffer from Bronchiactesis as a symptom of my ATATD.

> I have the vest. I don't use near as often as I should. I have a

frequent

> cough too. I expel a lot of mucous in the mornings, after I first

wake. It

> usually takes me anywhere from a good half hour to hour..it's

rather ritualistic

> anymore..I wake..use my albut..cough, get water..sit at the puter

desk and

> start my pulmonary ' cleansing '. After that I can breathe better

and begin my

> day.

>

> I suffer from frequent, consistent infections as a result of my

> bronchiactasis..I'm soooooo sick of being sick and my colon is

revolting from all the

> freekin anti's I nearly live on.

>

> Therefore, my ?? to the group is this. How many suffer from

frequent

> infections as I do..( I'm talking 2/month, almost back to back ).

What treatment are

> you using for your infections? Which anti's are you using? Have

any of you

> or are any of you currently on maintenance meds to halt the

infections?

>

> Dr. Brantley is on my support group em list for A1ATD. My alpha

net

> coordinator suggested I write to him (which I'll do next ) to

inquire what his method

> of treatment is. I was told he goes prophylatic ( sp )..Zythromax

every

> other day long term.

>

> Thanks for your input

> Sandie

>

>

> Can't sleep?

> Try counting your blessings...

>

[Guest guest]

Dear Janet,

When the cough starts again after you've finished with the antiobiotics, you might ask your Dr. for a sputum culture. You could have a Pseudomonus or Aspergillus infection, common among Bronch patients. The antiobiotics you are taking are not effective against these infections. I went through a similar situation and I did have a Pseudomons infection and a year later, Aspergillus.

These infections require specific meds and for the past 6 months, I have not had a reoccurance.

Be well,Eileen-FL-- "Janet Duhe" wrote:Return-Path: <sentto-4056817-13681-1159315567-ecbauer954=juno.com@...>Received: from mx30.lax.untd.com (mx30.lax.untd.com [10.130.24.90])by maildeliver07.nyc.untd.com with SMTP id AABCTVSDSARQFDTAfor (sender <sentto-4056817-13681-1159315567-ecbauer954=juno.com@...>);Tue, 26 Sep 2006 17:06:08 -0700 (PDT)Received: from n15a.bullet.sc5.yahoo.com (n15a.bullet.sc5.yahoo.com [66.163.187.158])by mx30.lax.untd.com with SMTP id AABCTVSDRA7EU3ZJfor (sender <sentto-4056817-13681-1159315567-ecbauer954=juno.com@...>);Tue, 26 Sep 2006 17:06:07 -0700 (PDT)Comment: DomainKeys? See http://antispam.yahoo.com/domainkeysDomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima; d=yahoogroups.com;b=rx1JcTsiRmRD6qi/UpzZxQMWzdC2/R+pNQzMt6hJYzZGONsStBD3Xn7YwXZQfLCM7K7tKTEswE6kPk1Rg6B6bk0jHEIRVkOaSDuT505bBv0TxbMSDzDAkB3mHflV0QuS;Received: from [66.163.187.122] by n15.bullet.sc5.yahoo.com with NNFMP; 27 Sep 2006 00:06:07 -0000Received: from [66.218.69.1] by t3.bullet.sc5.yahoo.com with NNFMP; 27 Sep 2006 00:06:07 -0000Received: from [66.218.67.94] by t1.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 00:06:07 -0000X-Yahoo-Newman-Property: groups-emailX-Yahoo-Newman-Id: 4056817-m13681X-Sender: jduhe@...X-Apparently-To: bronchiectasis Received: (qmail 74374 invoked from network); 27 Sep 2006 00:01:39 -0000Received: from unknown (66.218.66.216) by m37.grp.scd.yahoo.com with QMQP; 27 Sep 2006 00:01:39 -0000Received: from unknown (HELO n31a.bullet.scd.yahoo.com) (209.73.160.90) by mta1.grp.scd.yahoo.com with SMTP; 27 Sep 2006 00:01:39 -0000Received: from [66.218.69.6] by n31.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 00:01:35 -0000Received: from [66.218.66.77] by t6.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 00:01:35 -0000To: bronchiectasis Message-ID: <efcf0v+uanveGroups>In-Reply-To: User-Agent: eGroups-EW/0.82X-Mailer: Yahoo Groups Message PosterX-Originating-IP: 209.73.160.90X-eGroups-Msg-Info: 1:6:0:0X-Yahoo-Post-IP: 71.146.45.41X-Yahoo-Profile: hammersmith_47Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Wed, 27 Sep 2006 00:01:35 -0000Subject: Re: New Member with ??sReply-To: bronchiectasis Content-Type: text/plain; charset=ISO-8859-1Content-Transfer-Encoding: 7bitX-ContentStamp: 38:19:2925149887X-MAIL-INFO:4d0e4e2f8f8ffbbffb2e4ea7e3a7935feb57fe7afe83239e571b7f37ee470a07fe2b021fbfaf1b434e4e672b8f03029b025a4b3fbe5b93ca8b6ab76a4f8b936b17e33f2acfabc79aef13971a8ebedbdaee1a9a974ad75bda5bcbf39e333fdafa178b8bcb6a4f935b275b6e1e573e17a39e0bb31bf7239e571b7feb6f472b232b7ee70302bac76bb30aa73e3e2f0e1f8fbf3fbfcf2eef4a2e7e3fcf8383e3af5eafcfcfd7decf9fd3ab13dbdf63de636ef7fa9aX-UNTD-Peer-Info: 66.163.187.158|n15a.bullet.sc5.yahoo.com|n15a.bullet.sc5.yahoo.com|sentto-4056817-13681-1159315567-ecbauer954=juno.com@...X-UNTD-UBE:-1Hello Sandie and welcome. I am new too. I started getting sick just about a year ago but my regular doc treated me with cough syrup! By December I was really bad so at my insistence he ordered a chest X-ray, put me on antibiotics [low dose] along with prednisone [low dose] ... made me feel better but my cough returned with a vengeance a month or two later. More X-rays and more cough syrups later, my doc finally sent me to a pulmonary specialist. Another chest X-ray and this time a CT scan revealed bronchiectasis ... he even told me that checking the prior Xrays I actually had pneumonia but it went undiagnosed!! So this doc is "testing" me out on antibiotics and put me on Cipro 750 mg along with a good dose of prednisone. Definitely cleared me up for a while. But this past w/e it came back again with a vengeance, don't know why. I'm coughing and coughing although this time I am not producing much mucus but I am wheezing so bad it keeps me awake at night! I have a flutter Acapella devise which helps loosen my mucus along with Albuteral. I went ahead and ordered a saltpipe after learning about such a natural devise by the wonderful people in this support group. I have also learned about a percusser and a vest but both are expensive and I haven't ventured out that far yet. Luckily my doc gave me a huge prescription of antibiotics and prednisone to take on my own when I get "flare ups" like now. Awful disease. My husband says "do I have to live with this for the rest of our lives?" cheeky monkey!! Until death do us part I said, ha ha! It does help when I have him pound my back every night! I also learned from this group NOT to purchase an air purifier "Ionizer" unless it is a Hepa type as the former causes a real problem with people like us with compromised lungs. Check out the American Lung Association .. great informational web site. I have not heard of your disease which, you say, causes bronchiectasis as a symptom. I wish you well and hope to hear from you again!Janet >> Good Morning Everyone> > My name is Sandie. I'm new to this list. I'm on another support list titled > Alpha1 Antitrypisin Deficiency. For those of you who have never heard of this > disorder it's genetic..liver/lung..chronic and progressive, unlike the run > of the mill COPD or Emphysema. Some have compared us to those who suffer from > CF generally speaking.> > I suffer from Bronchiactesis as a symptom of my ATATD. > I have the vest. I don't use near as often as I should. I have a frequent > cough too. I expel a lot of mucous in the mornings, after I first wake. It > usually takes me anywhere from a good half hour to hour..it's rather ritualistic > anymore..I wake..use my albut..cough, get water..sit at the puter desk and > start my pulmonary ' cleansing '. After that I can breathe better and begin my > day.> > I suffer from frequent, consistent infections as a result of my > bronchiactasis..I'm soooooo sick of being sick and my colon is revolting from all the > freekin anti's I nearly live on. > > Therefore, my ?? to the group is this. How many suffer from frequent > infections as I do..( I'm talking 2/month, almost back to back ). What treatment are > you using for your infections? Which anti's are you using? Have any of you > or are any of you currently on maintenance meds to halt the infections?> > Dr. Brantley is on my support group em list for A1ATD. My alpha net > coordinator suggested I write to him (which I'll do next ) to inquire what his method > of treatment is. I was told he goes prophylatic ( sp )..Zythromax every > other day long term.> > Thanks for your input> Sandie> > > Can't sleep?> Try counting your blessings...> Yahoo! Groups Links<*> To visit your group on the web, go to: http://groups.yahoo.com/group/bronchiectasis/<*> Your email settings: Individual Email | Traditional<*> To change settings online go to: http://groups.yahoo.com/group/bronchiectasis/join (Yahoo! ID required)<*> To change settings via email: mailto:bronchiectasis-digest mailto:bronchiectasis-fullfeatured <*> To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/

[Guest guest]

Dear Sandie,

Since my Psedomonus and Aspergillus infections, 2x a day,I am on Duo Nebs, Saline 0.09% with a drop of tea tree oil each month. Every other month, Tobi nebs are added 2x day. In additionand for my compromised immune system, I take one Primal Defense, 4 Garlic capsules, 4000mg of Ester C, 2 NAC capsules and 1 capsule of oregano oil. Ihave a salt pipe, but forget to use it. I do think it is beneficial and will try to remember to use if more often.I make sure I wash my hands very often, avoid putting them in my mouth or rubbing my eyes. I make sure I clean my nebulizer equipment with soap and very hot water then soak them in a bowl of hot water and about 1/4 teaspoon of bleach.

Just a reminder to all to get your flu and your pneumonia shot. I was told by my Drs. to have the pneumonia injection every 5 years.

Eileen-FL

Please note: message attachedReturn-Path: <sentto-4056817-13661-1159251891-ecbauer954=juno.com@...>Received: from mx08.nyc.untd.com (mx08.nyc.untd.com [10.140.24.68])by maildeliver01.nyc.untd.com with SMTP id AABCTTT7WA2UZQJJfor (sender <sentto-4056817-13661-1159251891-ecbauer954=juno.com@...>);Mon, 25 Sep 2006 23:24:52 -0700 (PDT)Received: from n26.bullet.scd.yahoo.com (n26.bullet.scd.yahoo.com [66.94.237.55])by mx08.nyc.untd.com with SMTP id AABCTTT7WAP6XTYSfor (sender <sentto-4056817-13661-1159251891-ecbauer954=juno.com@...>);Mon, 25 Sep 2006 23:24:52 -0700 (PDT)Comment: DomainKeys? See http://antispam.yahoo.com/domainkeysDomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima; d=yahoogroups.com;b=YSNjXsJLaBUh65smm0NTK6Kd6gaeFKkenvbcZLm2JgPQNecUwpftYrxnaoI3cB2Eb7fO+1Gk4i8mDVILJxb6rJUYBj3CVN9qZLPRiujgpwfqsFb4c36pG6dAyx3HinGv;Received: from [66.218.66.58] by n26.bullet.scd.yahoo.com with NNFMP; 26 Sep 2006 06:24:51 -0000Received: from [66.218.67.96] by t7.bullet.scd.yahoo.com with NNFMP; 26 Sep 2006 06:24:51 -0000X-Yahoo-Newman-Property: groups-emailX-Yahoo-Newman-Id: 4056817-m13661X-Sender: Sunniesback55@...X-Apparently-To: bronchiectasis Received: (qmail 17533 invoked from network); 26 Sep 2006 06:24:18 -0000Received: from unknown (66.218.67.34) by m39.grp.scd.yahoo.com with QMQP; 26 Sep 2006 06:24:18 -0000Received: from unknown (HELO imo-d22.mx.aol.com) (205.188.144.208) by mta8.grp.scd.yahoo.com with SMTP; 26 Sep 2006 06:24:18 -0000Received: from Sunniesback55@...by imo-d22.mx.aol.com (mail_out_v38_r7.6.) id r.c5d.3ae77c3 (43931) for <bronchiectasis >; Tue, 26 Sep 2006 02:24:01 -0400 (EDT)Message-ID: To: bronchiectasis X-Mailer: 9.0 Security Edition for Windows sub 5331X-Spam-Flag: NOX-Originating-IP: 205.188.144.208X-eGroups-Msg-Info: 1:6:0:0From: Sunniesback55@...Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Tue, 26 Sep 2006 02:24:01 EDTSubject: New Member with ??sReply-To: bronchiectasis Content-Type: multipart/mixed; boundary="part1_c5d.3ae77c3.324a2181_boundary"X-ContentStamp: 11:5:3552723360X-UNTD-Peer-Info: 66.94.237.55|n26.bullet.scd.yahoo.com|n26.bullet.scd.yahoo.com|sentto-4056817-13661-1159251891-ecbauer954=juno.com@...X-UNTD-UBE:-1

----__JWM__J6231.63deS.6956M--

[Guest guest]

Thanks Eileen .. great advice. Definitely will ask my doctor about

it ... I printed out your reply to take to him!

Janet

> >

> > Good Morning Everyone

> >

> > My name is Sandie. I'm new to this list. I'm on another support

> list titled

> > Alpha1 Antitrypisin Deficiency. For those of you who have never

> heard of this

> > disorder it's genetic..liver/lung..chronic and progressive,

unlike

> the run

> > of the mill COPD or Emphysema. Some have compared us to those

who

> suffer from

> > CF generally speaking.

> >

> > I suffer from Bronchiactesis as a symptom of my ATATD.

> > I have the vest. I don't use near as often as I should. I have

a

> frequent

> > cough too. I expel a lot of mucous in the mornings, after I

first

> wake. It

> > usually takes me anywhere from a good half hour to hour..it's

> rather ritualistic

> > anymore..I wake..use my albut..cough, get water..sit at the

puter

> desk and

> > start my pulmonary ' cleansing '. After that I can breathe

better

> and begin my

> > day.

> >

> > I suffer from frequent, consistent infections as a result of my

> > bronchiactasis..I'm soooooo sick of being sick and my colon is

> revolting from all the

> > freekin anti's I nearly live on.

> >

> > Therefore, my ?? to the group is this. How many suffer from

> frequent

> > infections as I do..( I'm talking 2/month, almost back to

back ).

> What treatment are

> > you using for your infections? Which anti's are you using? Have

> any of you

> > or are any of you currently on maintenance meds to halt the

> infections?

> >

> > Dr. Brantley is on my support group em list for A1ATD. My alpha

> net

> > coordinator suggested I write to him (which I'll do next ) to

> inquire what his method

> > of treatment is. I was told he goes prophylatic (

sp )..Zythromax

> every

> > other day long term.

> >

> > Thanks for your input

> > Sandie

> >

> >

> > Can't sleep?

> > Try counting your blessings...

> >

>

>

>

>

>

>

>

>

[Guest guest]

Wow, Eileen, you certainly do have quite a laundry list of

pharmaceutical supplies and uses! My nephew works at a very large

well-known pharmaceutical company, I probably should get to know him

more for future use, eh?

Seriously though the last sentence hit home as I had my very first

pneumonia shot last week ... recommended for over 65 OR like me,

younger with a compromised lung condition. Yes, I was told every

five years [as opposed to 10 for fit over 65 year olds] to have it.

I already do have an annual flu shot, they will begin coming out

with them at my local clinic early next month. OK everyone, get to

your shot clinics .. ouch, it really doesn't hurt much!

Janet

>

> Dear Sandie,

> Since my Psedomonus and Aspergillus infections, 2x a day,I am on

Duo Nebs, Saline 0.09% with a drop of tea tree oil each month.

Every other month, Tobi nebs are added 2x day. In additionand for

my compromised immune system, I take one Primal Defense, 4 Garlic

capsules, 4000mg of Ester C, 2 NAC capsules and 1 capsule of oregano

oil. Ihave a salt pipe, but forget to use it. I do think it is

beneficial and will try to remember to use if more often.

>

> I make sure I wash my hands very often, avoid putting them in my

mouth or rubbing my eyes. I make sure I clean my nebulizer

equipment with soap and very hot water then soak them in a bowl of

hot water and about 1/4 teaspoon of bleach.

> Just a reminder to all to get your flu and your pneumonia shot. I

was told by my Drs. to have the pneumonia injection every 5 years.

> Eileen-FL

>

> Please note: message attached

>

> Return-Path: <sentto-4056817-13661-1159251891-

ecbauer954=juno.com@...>

> Received: from mx08.nyc.untd.com (mx08.nyc.untd.com [10.140.24.68])

> by maildeliver01.nyc.untd.com with SMTP id AABCTTT7WA2UZQJJ

> for (sender <sentto-4056817-13661-1159251891-

ecbauer954=juno.com@...>);

> Mon, 25 Sep 2006 23:24:52 -0700 (PDT)

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> Date: Tue, 26 Sep 2006 02:24:01 EDT

> Subject: New Member with ??s

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[Guest guest]

Dear Sandie,

Since my Psedomonus and Aspergillus infections, 2x a day,I am on Duo Nebs, Saline 0.09% with a drop of tea tree oil each month. Every other month, Tobi nebs are added 2x day. In additionand for my compromised immune system, I take one Primal Defense, 4 Garlic capsules, 4000mg of Ester C, 2 NAC capsules and 1 capsule of oregano oil. Ihave a salt pipe, but forget to use it. I do think it is beneficial and will try to remember to use if more often.I make sure I wash my hands very often, avoid putting them in my mouth or rubbing my eyes. I make sure I clean my nebulizer equipment with soap and very hot water then soak them in a bowl of hot water and about 1/4 teaspoon of bleach.

Just a reminder to all to get your flu and your pneumonia shot. I was told by my Drs. to have the pneumonia injection every 5 years.

Eileen-FL

Morning Eileen

Pretty name, btw. My daughter's name is Coleen.

As I mentioned in my previous post, I was dx'd A1ATD/lung symptomatic well over 6 years ago.

I'd appreciate it if you'd go into more detail about your course of treatment..you summed it up nicely ( above ) but the Duo Neb I'm not familiar with..explanation please?

The saline w/tea tree oil..how do you take that? The Tobi Neb..what's that? What's Primal Defense?

I just purchased this combo liquid supplement ..C w/esther...B complex and other minerals.

Swallowing pills is difficult for me..

Thanks

Sandie

Can't sleep?Try counting your blessings...

[Guest guest]

I have not heard of your disease which, you say, causes bronchiectasis as a symptom. I wish you well and hope to hear from you again!Janet

Morning Janet, and thanks for your reply.

It was explained to me, by my Alpha1 Antitrypsin Support group list, that bronch is secondary to another disorder or disease. That's what's baffling me about this list. There must be an underlying disease or disorder..have you been tested for anything else?

How old were you upon your initial lung problems? Here's a link to the website for Alpha1..

www.alpha2alpha.net

Many MANY have not heard of this disorder..not even our medical professionals. It's rare in the fact that though this disorder is genetic in nature..we're born with it, we INHERIT it from our moms and dads, because it Doctors arent familiar with this illness, it goes undx'd. There's thousands, upon thousands who have yet to be diagnosed and go mistreated or untreated.

I hope you view the website..

Sandie

A1ATD, ZZ

land

Can't sleep?Try counting your blessings...

[Guest guest]

Thanks Eileen.

Marsha

[Guest guest]

I agree with you, Marsha. I'm a paralegal and certainly have to stay on my toes at work ... codeine OK at bedtime however I also agree that we should not suppress our coughs as it is nature's way of expelling all that nasty junk! I have constant crackling and wheezing until I expel stuff and it can definitely be embarrassing. I'm at work now and a co-worker just now asked me what was that on my blouse? Yeah, a small piece of phlegm! Grrrr ... I was mortified!Janet

Just wondering...........do any of you smoke?

Can't sleep?Try counting your blessings...

[Guest guest]

I understand how annoying that cough is especially when you are working and also in public places. My Drs. gave me codeine cough medicine which I took until the treatment plans kicked in. I also had two bronchoscopies to wash out the lungs and also to remove a huge amount of aspergillus plugs when I was infected. That gave me a head start.

Please keep me updated.Eileen-FL-- "Janet Duhe" wrote:Return-Path: <sentto-4056817-13688-1159328828-ecbauer954=juno.com@...>Received: from mx11.lax.untd.com (mx11.lax.untd.com [10.130.24.71])by maildeliver03.nyc.untd.com with SMTP id AABCTV7B8ACCY5P2for (sender <sentto-4056817-13688-1159328828-ecbauer954=juno.com@...>);Tue, 26 Sep 2006 20:47:10 -0700 (PDT)Received: from n27.bullet.scd.yahoo.com (n27.bullet.scd.yahoo.com [66.94.237.56])by mx11.lax.untd.com with SMTP id AABCTV7B7AK37522for (sender <sentto-4056817-13688-1159328828-ecbauer954=juno.com@...>);Tue, 26 Sep 2006 20:47:09 -0700 (PDT)Comment: DomainKeys? See http://antispam.yahoo.com/domainkeysDomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima; d=yahoogroups.com;b=LnDVAUWZFiGXcfsZ/uWRNvSF0LfeAZODd22mRUvynA5uyB0b9mjEexCNC/iDnS2W7C4H2xzS8+JNVH3yfVFXTc6nS6o3yHX1etSEadwgLGwR2NG3t76+GHQiHaMnBD/z;Received: from [66.218.69.6] by n27.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 03:47:09 -0000Received: from [66.218.66.103] by t6.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 03:47:09 -0000X-Yahoo-Newman-Property: groups-emailX-Yahoo-Newman-Id: 4056817-m13688X-Sender: jduhe@...X-Apparently-To: bronchiectasis Received: (qmail 26121 invoked from network); 27 Sep 2006 03:43:19 -0000Received: from unknown (66.218.66.217) by m31.grp.scd.yahoo.com with QMQP; 27 Sep 2006 03:43:19 -0000Received: from unknown (HELO n7c.bullet.sc5.yahoo.com) (66.163.187.198) by mta2.grp.scd.yahoo.com with SMTP; 27 Sep 2006 03:43:19 -0000Received: from [66.163.187.123] by n7.bullet.sc5.yahoo.com with NNFMP; 27 Sep 2006 03:43:16 -0000Received: from [66.218.69.6] by t4.bullet.sc5.yahoo.com with NNFMP; 27 Sep 2006 03:43:16 -0000Received: from [66.218.66.87] by t6.bullet.scd.yahoo.com with NNFMP; 27 Sep 2006 03:43:15 -0000To: bronchiectasis Message-ID: <efcs0i+itf5eGroups>In-Reply-To: User-Agent: eGroups-EW/0.82X-Mailer: Yahoo Groups Message PosterX-Originating-IP: 66.163.187.198X-Yahoo-Post-IP: 71.146.45.41X-Yahoo-Profile: hammersmith_47Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Wed, 27 Sep 2006 03:43:14 -0000Subject: Re: New Member with ??sReply-To: bronchiectasis Content-Type: text/plain; charset=ISO-8859-1Content-Transfer-Encoding: 7bitX-ContentStamp: 88:44:2944832138X-MAIL-INFO:238df1c9f161fda961b131c9d03180bd952084e5ad4d91b4f1a5e900a06d907059dde58df1e5f061497099fd542579397474d934d90179148014c9a4edd145dd456038b4d1413009f4555da545b5110434644171797919b5748511bd1105c10d1050c9f12d75f975b12dc9d024800dcdd52065594d95e5e0351000e4f4e059e5b08950e4504951b4810de470242d2d4975b1c950d4506d31d19d2494b49921419038b4d14130ed1555b538b584c48511a165d0215d149d9d39250474340d34d5014db001840dd560608064e964d5d589a0d529ad209500e1f0a0f06d907059X-UNTD-Peer-Info: 66.94.237.56|n27.bullet.scd.yahoo.com|n27.bullet.scd.yahoo.com|sentto-4056817-13688-1159328828-ecbauer954=juno.com@...X-UNTD-UBE:-1Thanks Eileen .. great advice. Definitely will ask my doctor about it ... I printed out your reply to take to him!Janet> >> > Good Morning Everyone> > > > My name is Sandie. I'm new to this list. I'm on another support > list titled > > Alpha1 Antitrypisin Deficiency. For those of you who have never > heard of this > > disorder it's genetic..liver/lung..chronic and progressive, unlike > the run > > of the mill COPD or Emphysema. Some have compared us to those who > suffer from > > CF generally speaking.> > > > I suffer from Bronchiactesis as a symptom of my ATATD. > > I have the vest. I don't use near as often as I should. I have a > frequent > > cough too. I expel a lot of mucous in the mornings, after I first > wake. It > > usually takes me anywhere from a good half hour to hour..it's > rather ritualistic > > anymore..I wake..use my albut..cough, get water..sit at the puter > desk and > > start my pulmonary ' cleansing '. After that I can breathe better > and begin my > > day.> > > > I suffer from frequent, consistent infections as a result of my > > bronchiactasis..I'm soooooo sick of being sick and my colon is > revolting from all the > > freekin anti's I nearly live on. > > > > Therefore, my ?? to the group is this. How many suffer from > frequent > > infections as I do..( I'm talking 2/month, almost back to back ). > What treatment are > > you using for your infections? Which anti's are you using? Have > any of you > > or are any of you currently on maintenance meds to halt the > infections?> > > > Dr. Brantley is on my support group em list for A1ATD. My alpha > net > > coordinator suggested I write to him (which I'll do next ) to > inquire what his method > > of treatment is. I was told he goes prophylatic ( sp )..Zythromax > every > > other day long term.> > > > Thanks for your input> > Sandie> > > > > > Can't sleep?> > Try counting your blessings...> >> > > > > > > > Yahoo! Groups Links> Yahoo! Groups Links<*> To visit your group on the web, go to: http://groups.yahoo.com/group/bronchiectasis/<*> Your email settings: Individual Email | Traditional<*> To change settings online go to: http://groups.yahoo.com/group/bronchiectasis/join (Yahoo! ID required)<*> To change settings via email: mailto:bronchiectasis-digest mailto:bronchiectasis-fullfeatured <*> To unsubscribe from this group, send an email to: bronchiectasis-unsubscribe <*> Your use of Yahoo! Groups is subject to: http://docs.yahoo.com/info/terms/

[Guest guest]

I am a writer/editor/proofreader so the codeine is not something I can use

during the day. Also, the coughing with bronchiectasis is a good thing in that

it gets rid of the stuff your lungs can no longer expel. But it sure is a drag.

Marsha

[Guest guest]

I agree with you, Marsha. I'm a paralegal and certainly have to

stay on my toes at work ... codeine OK at bedtime however I also

agree that we should not suppress our coughs as it is nature's way

of expelling all that nasty junk! I have constant crackling and

wheezing until I expel stuff and it can definitely be embarrassing.

I'm at work now and a co-worker just now asked me what was that on

my blouse? Yeah, a small piece of phlegm! Grrrr ... I was

mortified!

Janet

>

> I am a writer/editor/proofreader so the codeine is not something

I can use during the day. Also, the coughing with bronchiectasis is

a good thing in that it gets rid of the stuff your lungs can no

longer expel. But it sure is a drag.

>

> Marsha

>

[Guest guest]

You poor dear, do I ever understand.

[Guest guest]

There is a chewable type that I get at the grocery store. They have strawberry and blueberry flavor. Check it out in the supplement section.

thanks Norma..I'll do that, but do you know the brand name of the one you use? Sandie

Can't sleep?Try counting your blessings...

[Guest guest]

There is a chewable type that I get at the grocery store. They have strawberry and blueberry flavor. Check it out in the supplement section. Norma (Austin, Texas)Sunniesback55@... wrote: I eat yogurt but dont do the acidiphillus cause I have such a hard time swallowing pills..yea, I know about the tummy and the anti dilemna.. thanks Can't sleep?Try counting your blessings...

[Guest guest]

Sandie, The brand name is: Nature's Bounty Chewable Acidophilus with Bifidus - Milk Free. I take one of these three times daily, preferably with a meal. I hope you like the chewable acidophilus. Good Luck, Norma (Austin, Texas)Sunniesback55@... wrote: There is a chewable type that I get at the grocery store. They have strawberry and blueberry flavor. Check it out in the

supplement section. thanks Norma..I'll do that, but do you know the brand name of the one you use? Sandie Can't sleep?Try counting your blessings...