Re: Long term antibiotic use

[Guest guest]

The ‘How to Treat Bronchiectasis’ article found on the Lungnet (Australia) or Pink Disease website is good, and google ‘bronchiectasis aetiology’ : try to save the articles you find most pertinent, and links, because as you learn more, some of them will be useful to go back to later. Bronchiectasis is usually a result of childhood lung trauma (eg whooping cough) but can also occur as a result of aspiration of a foreign body into the lung (according to my reading so far). And it seems that ‘chronic bronchitis’ is more or less a precursor to, or lack of recognition of bronch...

do you have a link or website addy for this?

There's been much discussion about bronchiectasis between myself and my A1ATD coordinator..she too, along w/many of us alpha1 ' lungers ' suffer from bronch..

Her dr.." brantley ' ..who is very involved in research on bronch specfically with patients born with A1ATD..states that long term, sometimes for the rest of our lives..antibiotic use is the only way to control our consistent infections.

A maintenance program is something he suggests and advises on

Sandie in land USA

Never Look Down on Someone..Unless You're Willing to Help Them Back UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

he feels I have Chronic Bronchitis – and for the moment – that may be true. I’m just very worried about putting a band aid on something and not truly finding what is the key cause. I have decided to give this 6 months and then will go to National Jewish for another opinion.

I am 46 years old and have always been very healthy and this has hit me like a ton of bricks…..it is very frustrating, but I will not stop till I am better.

Joan..

From what has been shared with me all we can do is what we can do. Hence, the answer seems to be in this instance..long term, perhaps lifelong treatment with rotating anti's..

Remember to use pro biotics to protect your colon and replace your good flora. Yogurt is a good source but when using anti biotics as frequently as we have to we need more protection than that. Pro biotics are easily obtained and on your pharmacy's shelf.

This is the best some of us can hope for.

Sandie in land USA

Never Look Down on Someone..Unless You're Willing to Help Them Back UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Hi ,

I gather you’ve already been using abs for some years? Which ab are you using/rotating? Have you had pathology tests to clarify if ‘your’ bugs have resistance to any or part of any ab?

I have found a lot just by using ‘Google’ : eg <bronchiectasis antibiotics> or type in the name of the specific ab, tho sometimes all that gets you is the advertising hype from the drug company. To avoid this happening add another word like ‘resistance’, ‘issues’ ‘research’. Info I have found most useful, seem to be UK sources – maybe because bronchiectasis in a high number of cases results from whooping cough and was prevalent in Britain and a high cause of infant mortality until improvement in the use of antibiotics.

I am finding out new things all the time – eg highly increased affect of sunlight on your skin while taking an ab, but don’t know yet whether that applies only to some, not all abs. Below are some sites I hope are of use to you – or anyone else for that matter!

www.australiandoctor.com.au/HTT/PDF/ad_htt_031_038___may20_05.pdf

“how to treat bronchiectasis” article is on the Lungnet website or google ‘pink disease’ go to L column to bronchiectasis, and you should find it.  Below is another website with a basic description of the various forms it takes, variants, which particular infection (bacterial, fungal etc) and treatments, etc.

 eMedicine - Bronchiectasis - Article by Ethan E Emmons, MD.webarchive

http://www.erj.ersjournals.com/cgi/content/abstract/29/3/541

http://www.medicinejournal.co.uk/user/register

http://www.emedicine.com/med/topic246.htm

Having had heavy use of abs since birth, and now only one remaining oral ab left, every time I am unwell it is a toss up whether I ‘wait and see’ and risk a worsening infection if I don’t, or risk increase chances of resistance and fungal infection if I do ... Good luck with your search – I’d be interested to know what you find.

best wishes

Joy

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[Guest guest]

Joy –

I have been sick for the last 6 years with continued bronchial

infections. I have also been told that I have “non impressive Bronchiectasis”

I have had many, many tests, bronchoscope etc. Last year the Dr.’s

at UCLA thought I had a mycobacterium and put me on very strong antibiotics for

6 months. During that time I was feeling great….and was great for

about 8 months after….and then I went back to how I was before the

drugs. I started getting sick again and had 2 infections one right after

the other – and I just did not know what to do or where to turn . I

have had a few Dr’s say to me – sorry – I can’t help

you – I’m not sure what is wrong…well – not the right

answer!

I have continued mucus that just won’t stop – and infection

after infection. I went back to an allergist that said to me – “I

will help you figure out what is wrong” and he has agreed to work with my

cousin who is a pulmonologist in Philadelphia and give me rotating antibiotics (vibramycin,

cipro, erythmycin)– he has had great response from his patients –

he feels I have Chronic Bronchitis – and for the moment – that may

be true. I’m just very worried about putting a band aid on

something and not truly finding what is the key cause. I have decided to

give this 6 months and then will go to National Jewish for another opinion.

I am 46 years old and have always been very healthy and this has

hit me like a ton of bricks…..it is very frustrating, but I will not stop

till I am better.

Thank you so much for all your suggestions on ways to search for

some answers.

I appreciate your time.

Brown

From:

bronchiectasis [mailto:bronchiectasis ] On

Behalf Of joy hensby

Sent: Friday, January 11, 2008 10:45 PM

To: bronchiectasis

Subject: Re: Long term antibiotic use

Hi ,

I gather you’ve already been using abs for some years? Which ab are

you using/rotating? Have you had pathology tests to clarify if

‘your’ bugs have resistance to any or part of any ab?

I have found a lot just by using ‘Google’ : eg <bronchiectasis

antibiotics> or type in the name of the specific ab, tho sometimes all that

gets you is the advertising hype from the drug company. To avoid this

happening add another word like ‘resistance’, ‘issues’

‘research’. Info I have found most useful, seem to be UK

sources – maybe because bronchiectasis in a high number of cases results

from whooping cough and was prevalent in Britain and a high cause of infant

mortality until improvement in the use of antibiotics.

I am finding out new things all the time – eg highly increased affect of

sunlight on your skin while taking an ab, but don’t know yet whether that

applies only to some, not all abs. Below are some sites I hope are of use

to you – or anyone else for that matter!

www.australiandoctor.com.au/HTT/PDF/ad_htt_031_038___may20_05.pdf

“how to treat bronchiectasis” article is on the Lungnet

website or google ‘pink disease’ go to L column to bronchiectasis,

and you should find it. Below is another website with a basic description

of the various forms it takes, variants, which particular infection (bacterial,

fungal etc) and treatments, etc.

eMedicine - Bronchiectasis - Article by Ethan E Emmons, MD.webarchive

http://www.erj.ersjournals.com/cgi/content/abstract/29/3/541

http://www.medicinejournal.co.uk/user/register

http://www.emedicine.com/med/topic246.htm

Having had heavy use of abs since birth, and now only one remaining oral ab

left, every time I am unwell it is a toss up whether I ‘wait and

see’ and risk a worsening infection if I don’t, or risk increase

chances of resistance and fungal infection if I do ... Good

luck with your search – I’d be interested to know what you find.

best

wishes

Joy

-- --

Please phone prior to sending attachments larger than 2 MB -

thanks.

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Hi ,

Would it help if you researched bronchiectasis some more – it is idiopathic (meaning it is inconsistent in its presentation, tho it makes me chuckle, maybe it should mean ‘idiotically pathetic!’ - sometimes the infections make you feel so rotten you have to find something to lighten it up a bit!). And it is degenerative.

The ‘How to Treat Bronchiectasis’ article found on the Lungnet (Australia) or Pink Disease website is good, and google ‘bronchiectasis aetiology’ : try to save the articles you find most pertinent, and links, because as you learn more, some of them will be useful to go back to later.

Bronchiectasis is usually a result of childhood lung trauma (eg whooping cough) but can also occur as a result of aspiration of a foreign body into the lung (according to my reading so far). And it seems that ‘chronic bronchitis’ is more or less a precursor to, or lack of recognition of bronch...

I looked up mycobacterium - dict says: “a rodlike Gram-positive aerobic bacterium ... Some cause disease in humans, for eg, TB or leprosy. Genus: Mycobacterium.” I haven’t come across this before (I was diagnosed at 18 yrs old, am now 55, so have had a nearly half-century run with the thing, eg a bronchoscopy at 18yrs old involved injecting a dye into the lung via the neck... ). Most bronch pathogens are Pseudomonas aeruginosa, Staph, S. pneumoniae, Aspergillus. The article I forwarded in my previous email mentions Mycobacterium avium complex (?bird flu?!), and other mycobacteria (atypical). You must find exactly what the pathogen is and what it is resistant to in order for abx to work – otherwise the situation is made worse still because over-use of abx will definitely result in overabundance of fungal flora and just complicate your health further.

CT scans aren’t real comfortable either but ask for one until you get one, as much of what I have read is that bronch is often under-diagnosed as it does not always show up on an x-ray (I presume you’ve had a few?). I wish you all the best in your search – if one Dr doesn’t get results, go to another, no point being ‘loyal’ if you’re not getting results. And keep searching, if you can, print out the info you find, or give your GP the websites and ask him/her to research. Bronch is not well-known or researched, so you have to do what you can, as results now will improve your future health prospects.

I wish you well, and to stay well as poss!

Joy

-- --

Please phone prior to sending attachments larger than 2 MB - thanks.

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Hi Joy in OZ

My pulmonary doctor gave my an order for sputum tests and bottles to collect it in, but it would have to go to the lab a half hour from collection and my stuff comes up early in the morning. It shouldn't be, but it seems like a major thing to get up, get dressed and drive 5 miles to the lab when I have just had my coughing spells.

I do agree Marilyn..I do my coughing and spitting into my test bottles in the comfort of my home, in the morning...then, when I can get myself motivated..later that morning, when I have more energy..I take them to the lab..

So much easier for me..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

If you’re coughing blood, it usually does mean there’s infection. Funny how it’s such a yo-yo of fever, feeling ok again, then not. re long-term abx – maybe it works for a while but what happens when the bugs become resistant? Maybe it depends on what is causing the infection – some are less resistance-forming than others...?

This is such a catch 22. The reason we have so many recurring infections is cause of all that gunk that hides in the deep recesses of our lungs. Imagine a wet, dark basement. What grows in this type of environment? Mold does. Fungus does.

The same is true of our lungs. It's the nasty gunk that's forming in the lowest parts of our lungs which cause these infections that we just cant seem to rid ourselves of..and why it's so important to do pulmonary cleansing ever day..at least a couple times a day..

This is done by using the vest or the pounding on your back while leaning over a bed etc..and drinking a whole lot of water..vigilantly..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Here ya go..

http://www.thevest.com/

Medicare pays for mine..and if you have bronchiectasis and are on Medicare..it will pay for yours too ! When you talk to your dr about a subscription for it..be sure they let Medicare know it's for bronchiectasis..that's key..your dr should be able to handle ordering this and submitting to Medicare for you.

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Hi Marilyn,

Sounds like there are some things in Oz I shouldn’t complain about! Re pathology, I have had the government-run pathology service pick it up, otherwise it can be dropped into any doctors’ rooms, where they have a daily pick-up. Another way is that it is labelled with the time, and kept in the fridge, as it is usually given 3 days to ‘culture’. Maybe you could arrange that way to have it dropped off, or picked up from you later in the day, or even the following day. Can you ring them, or organise something like this through your doctor?

If you’re coughing blood, it usually does mean there’s infection. Funny how it’s such a yo-yo of fever, feeling ok again, then not.

re long-term abx – maybe it works for a while but what happens when the bugs become resistant? Maybe it depends on what is causing the infection – some are less resistance-forming than others...?

Good luck with everything,

stay well,

--

Joy

Qld, Australia

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Hi Sandie, what is this vest you speak of for lung physio?

--

Joy

Qld, Australia

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "

[Guest guest]

Medicare will be paying for 80% of mine

next week, with my secondary picking up the rest. Oddly enough, my

breathing buddies group has a speaker from the maker coming to speak. Group

is sponsored by hospital, pulmonary rehab, and the ALA of Florida. Great timing.

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

Sent: Wednesday, January 16, 2008

10:15 AM

To: bronchiectasis

Subject: Re: Long

term antibiotic use

Here ya go..

http://www.thevest.com/

Medicare pays for

mine..and if you have bronchiectasis and are on Medicare..it will pay for yours

too ! When you talk to your dr about a subscription for it..be sure they let

Medicare know it's for bronchiectasis..that's key..your dr should be able to

handle ordering this and submitting to Medicare for you.

Sandie

Never Look Down on Someone

Unless You're Willing to Help Them Up

Start

the year off right. Easy

ways to stay in shape in the new year.

[Guest guest]

Hi Bill, My doctors also believe that I've developed mild bronch probably as a result of severe bilateral pneumonia. Just curious, when did you get pneumonia and how many years after your pneumonia did the bronch show up? I got pneumonia 3 years ago and ever since then I've been spitting up yellow, thick sputum on a daily basis. Did you also have these same symptoms from the time you got pneumonia until present? I was also wondering whether your symptoms have gotten worse and worse since your pneumonia or whether you've stayed relatively stable since these many years. Also, what treatment regimen/strategy does your doctor have you on? I hope you don't mind sharing your story with me since I might be headed down a similar path. Thanks a lot, CassieWCGX3@... wrote: i also went from one doctor, to another that spent 5 mins with you,without suggestions of any new treatment, or ideas to treat your condition,untill i found the doctor, i have now, he's ( Kotloff ) the head of pulmonary at the university of Pennsylvania hosp, in phila .3400 spruce street phila pa,19104 from my first appt with him, he immediately set up a new tests, and strategy and suggestions to treat my condition, you need to find a doc like him that actually cares about treating you, and giving you

your best chance at living your best and as long as you can with these conditions. I have bronchiectisis, I've had it since i was 9 years old, in result of having sever bi lateral pnuemonia at that time i was in the hosp for 4 months with 4 chest tubes, a trachiotomy', and was givin my last rights 2 times I'm now 42 find a good doctor bill gwalthney Start the year off right. Easy ways to stay in shape in the new year.

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

I just had labs drawn to see if I carry the Rheumatoid Arthritis factor and see what my Immonoglubin count is..I'm anxious to get the results today..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them UpWho's never won? Biggest Grammy Award surprises of all time on AOL Music.

[Guest guest]

Thanks Bill – I’m so happy you were able to find the help you

needed/need J

From:

bronchiectasis [mailto:bronchiectasis ] On

Behalf Of WCGX3@...

Sent: Thursday, January 24, 2008 6:07 AM

To: bronchiectasis

Subject: Re: Long term antibiotic use

i also went from one doctor, to another that spent 5 mins with

you,without suggestions of any new treatment, or ideas to treat your

condition,untill i found the doctor, i have now, he's ( Kotloff ) the

head of pulmonary at the university of Pennsylvania hosp, in phila .3400 spruce

street phila pa,19104

from my first appt with him, he immediately set up a new tests,

and strategy and suggestions to treat my condition,

you need to find a doc like him that actually cares about treating

you, and giving you your best chance at living your best and as long as you can

with these conditions.

I have bronchiectisis, I've had it since i was 9 years old, in

result of having sever bi lateral pnuemonia

at that time i was in the hosp for 4 months with 4 chest tubes, a

trachiotomy', and was givin my last rights 2 times

I'm now 42

find a good doctor

bill gwalthney

Start the year off right. Easy

ways to stay in shape in the new year.