Re: Long term antibiotic use

January 12, 2008

Joan from Florida. I read everyone of your emails. Please continue to let us know what works. I, too, have mycobacterium but my stomach could not tolerate the heavy doses of meds everyday. Am now rotating on 2 weeks off 2 weeks. However, we will have to replace the cipro because my stomach rejects it immediately. I am fortunate to have dr.s collaborating, pulmonary., gastro, infectious disease. Thanks all.

That's what probiotics are for..to protect our colon and replacing the good flora !

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.

January 12, 2008

Joan from Florida. I read everyone of your

emails. Please continue to let us know what works. I, too, have

mycobacterium but my stomach could not tolerate the heavy doses of meds

everyday. Am now rotating on 2 weeks off 2 weeks. However, we will

have to replace the cipro because my stomach rejects it immediately. I am

fortunate to have dr.s collaborating, pulmonary., gastro, infectious disease. Thanks

all.

From:

bronchiectasis [mailto:bronchiectasis ] On Behalf Of Teambrown

Sent: Saturday, January 12, 2008

1:57 AM

To: bronchiectasis

Subject: RE: Long

term antibiotic use

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

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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. "

January 12, 2008

Re: Long term antibiotic use

Hello all I have been reading alot of your post for the last several weeks. I have a 7 year old son that has been very sick sense he was a infant. Many hospital stays with muccus plugging, pnemonia, colapsed lungs. He was first belived he just had uncontroled asthma, then I found a specialist that did a biopsy of the lung and that came back that he had PCD, well the new biopsy shows that he dosnt have PCD. now they are questioning if he has bronchiectasis. At his last hospital stay in DEC they did a cat scan and we are still waiting the results. This is getting very frustrated.

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 Up

Start the year off right. Easy ways to stay in shape in the new year.

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January 12, 2008

And here is the question on my mind….do

people die from bronc, and if so why.

From: bronchiectasis

[mailto:bronchiectasis ] On

Behalf Of Sunniesback55@...

Sent: Saturday, January 12, 2008

6:32 AM

To: bronchiectasis

Subject: Re: Long

term antibiotic use

In a message

dated 1/12/2008 1:56:49 A.M. Eastern Standard Time, teambrown@...

writes:

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 Up

Start

the year off right. Easy

ways to stay in shape in the new year.

January 12, 2008

Some interesting comments out there. I have researched bronch quite a bit too, especially after being told about 1 1/2 years ago that I would need to be on rotating antibiotics and prednisone for the rest of my life, would never feel better, and eventually would not be able to get out of bed!! This from my former pulmonary dr who I really respected. Unfortunately, she moved out of the area, and then so did I, so I found a new pulmonary dr in St. , IL, who did some tests and was told I have immunoglobulin deficiency and could never take antibiotics again. Well, I thought I was done. However, although I often feel very fatigued and need to rest quite a bit, I have NOT had another infection. I did recently ask a gastrointestinal dr about a CT scan I had showing my esophagus was dilated. He did a esophagram which shows my esophagus has no motility, food just gets down by gravity. So another test, a manometry of my esophagus at a teaching hospital in Chicago. Fortunately, it is not the worst case, which would require removing the esophagus and attaching my stomach in my chest. (Ugh) So now I take a proton pump med (Nexium), chew carefully and drink liquids when I eat. As for the bronchiectasis, I guess it is on hold. None of the doctors I have seen here in St. seem to have a clue about that. They call this the "orphan" disease, I guess because no one cares about it.

I did have whooping cough as a child, chronic bronchitis throughout my life, sinus infections, and a chronic cough for about 30 years, am thin and tall and 71 years old, all very typical for a person with bronch, accordingly to what I have read. I just accept that I have a chronic illness and try to be positive and enjoy life as much as possible.

Hope you are all well in 2008.

Marilyn in St. Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

Some interesting comments out there. I have researched bronch quite a bit too, especially after being told about 1 1/2 years ago that I would need to be on rotating antibiotics and prednisone for the rest of my life, would never feel better, and eventually would not be able to get out of bed!! This from my former pulmonary dr who I really respected. Unfortunately, she moved out of the area, and then so did I, so I found a new pulmonary dr in St. , IL, who did some tests and was told I have immunoglobulin deficiency and could never take antibiotics again. Well, I thought I was done. However, although I often feel very fatigued and need to rest quite a bit, I have NOT had another infection. I did recently ask a gastrointestinal dr about a CT scan I had showing my esophagus was dilated. He did a esophagram which shows my esophagus has no motility, food just gets down by gravity. So another test, a manometry of my esophagus at a teaching hospital in Chicago. Fortunately, it is not the worst case, which would require removing the esophagus and attaching my stomach in my chest. (Ugh) So now I take a proton pump med (Nexium), chew carefully and drink liquids when I eat. As for the bronchiectasis, I guess it is on hold. None of the doctors I have seen here in St. seem to have a clue about that. They call this the "orphan" disease, I guess because no one cares about it.

I did have whooping cough as a child, chronic bronchitis throughout my life, sinus infections, and a chronic cough for about 30 years, am thin and tall and 71 years old, all very typical for a person with bronch, accordingly to what I have read. I just accept that I have a chronic illness and try to be positive and enjoy life as much as possible.

Hope you are all well in 2008.

Marilyn in St. Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

Hello Kay,

I am 5' 10" and have always been thin, so didn't think much until I realized two years ago I was losing weight, I got down to 120 before I was diagnosed with emphysema. I was having trouble breathing at the time, but still working full time. A dietician helped me work out a program so I could get my weight up a little. I am 128 now, but strangely, the problems I was having then no longer are present. Now, it is more the phlegm in the a.m. and fatigue. I have a suspicion all this respiratory stuff is affecting my heart. I did have a heart catharization last spring after a CT scan showed severe pulmonary hypertension, but the heart cath indicated no such problem. However, I understand these pulmonary problems can lead to heart failure. I am not looking for a disease, but want a doc who tries to understand what I am going through. Most just want to give me antidepressants and have no answers. I do take a very low dose anti anxiety med once a day, just to deal with it all.

Thanks for listening. Please feel free to vent also.

Marilyn in St. Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

You go girl!

From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Mmanow1@...

Sent: Saturday, January 12, 2008

4:52 PM

To: bronchiectasis

Subject: Re: Long

term antibiotic use

Some interesting comments out

there. I have researched bronch quite a bit too, especially after being

told about 1 1/2 years ago that I would need to be on rotating antibiotics and

prednisone for the rest of my life, would never feel better, and eventually

would not be able to get out of bed!! This from my former pulmonary dr

who I really respected. Unfortunately, she moved out of the area, and

then so did I, so I found a new pulmonary dr in St. , IL,

who did some tests and was told I have immunoglobulin deficiency and could

never take antibiotics again. Well, I thought I was done. However,

although I often feel very fatigued and need to rest quite a bit, I have NOT

had another infection. I did recently ask a gastrointestinal dr about a

CT scan I had showing my esophagus was dilated. He did a esophagram which

shows my esophagus has no motility, food just gets down by gravity. So

another test, a manometry of my esophagus at a teaching hospital in Chicago.

Fortunately, it is not the worst case, which would require removing the

esophagus and attaching my stomach in my chest. (Ugh) So now I take a

proton pump med (Nexium), chew carefully and drink liquids when I eat. As

for the bronchiectasis, I guess it is on hold. None of the doctors I have

seen here in St.

seem to have a clue about that. They call this the " orphan "

disease, I guess because no one cares about it.

I did have whooping cough as

a child, chronic bronchitis throughout my life, sinus infections, and a

chronic cough for about 30 years, am thin and tall and 71 years old, all very

typical for a person with bronch, accordingly to what I have read. I just

accept that I have a chronic illness and try to be positive and enjoy life as

much as possible.

Hope you are all well in 2008.

Marilyn in St.

Start the year off right. Easy

ways to stay in shape in the new year.

January 12, 2008

Hi Marilyn,

How tall do you consider tall? I'm 5'7", how about you? My sister is 6' and my mom 5'10" and they don't have any lung troubles. We are all thin. I had an awful bout of Norovirus stomach flu last Christmas and came down with lung troubles a week later. Had never had any lung problems previously, but I have had GERD for the past five years.

It is so good of everyone to share their experiences with what is working for them and what hasn't worked. For me doing the inverted chest percussion/drainage/coughing routine daily and exercising has made all the difference. Not much stuff in there but boy does it cause me discomfort and illness if I don't keep getting rid of it.

Kay

-------------- Original message -------------- From: Mmanow1@...

Some interesting comments out there. I have researched bronch quite a bit too, especially after being told about 1 1/2 years ago that I would need to be on rotating antibiotics and prednisone for the rest of my life, would never feel better, and eventually would not be able to get out of bed!! This from my former pulmonary dr who I really respected. Unfortunately, she moved out of the area, and then so did I, so I found a new pulmonary dr in St. , IL, who did some tests and was told I have immunoglobulin deficiency and could never take antibiotics again. Well, I thought I was done. However, although I often feel very fatigued and need to rest quite a bit, I have NOT had another infection. I did recently ask a gastrointestinal dr about a CT scan I had showing my esophagus was dilated. He did a esophagram which shows my esophagus has no motility, food just gets down by gravity. So another test, a manometry of my esophagus at

a teaching hospital in Chicago. Fortunately, it is not the worst case, which would require removing the esophagus and attaching my stomach in my chest. (Ugh) So now I take a proton pump med (Nexium), chew carefully and drink liquids when I eat. As for the bronchiectasis, I guess it is on hold. None of the doctors I have seen here in St. seem to have a clue about that. They call this the "orphan" disease, I guess because no one cares about it.

I did have whooping cough as a child, chronic bronchitis throughout my life, sinus infections, and a chronic cough for about 30 years, am thin and tall and 71 years old, all very typical for a person with bronch, accordingly to what I have read. I just accept that I have a chronic illness and try to be positive and enjoy life as much as possible.

Hope you are all well in 2008.

Marilyn in St.

Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

Hi Marilyn,

How tall do you consider tall? I'm 5'7", how about you? My sister is 6' and my mom 5'10" and they don't have any lung troubles. We are all thin. I had an awful bout of Norovirus stomach flu last Christmas and came down with lung troubles a week later. Had never had any lung problems previously, but I have had GERD for the past five years.

It is so good of everyone to share their experiences with what is working for them and what hasn't worked. For me doing the inverted chest percussion/drainage/coughing routine daily and exercising has made all the difference. Not much stuff in there but boy does it cause me discomfort and illness if I don't keep getting rid of it.

Kay

-------------- Original message -------------- From: Mmanow1@...

Some interesting comments out there. I have researched bronch quite a bit too, especially after being told about 1 1/2 years ago that I would need to be on rotating antibiotics and prednisone for the rest of my life, would never feel better, and eventually would not be able to get out of bed!! This from my former pulmonary dr who I really respected. Unfortunately, she moved out of the area, and then so did I, so I found a new pulmonary dr in St. , IL, who did some tests and was told I have immunoglobulin deficiency and could never take antibiotics again. Well, I thought I was done. However, although I often feel very fatigued and need to rest quite a bit, I have NOT had another infection. I did recently ask a gastrointestinal dr about a CT scan I had showing my esophagus was dilated. He did a esophagram which shows my esophagus has no motility, food just gets down by gravity. So another test, a manometry of my esophagus at

a teaching hospital in Chicago. Fortunately, it is not the worst case, which would require removing the esophagus and attaching my stomach in my chest. (Ugh) So now I take a proton pump med (Nexium), chew carefully and drink liquids when I eat. As for the bronchiectasis, I guess it is on hold. None of the doctors I have seen here in St. seem to have a clue about that. They call this the "orphan" disease, I guess because no one cares about it.

I did have whooping cough as a child, chronic bronchitis throughout my life, sinus infections, and a chronic cough for about 30 years, am thin and tall and 71 years old, all very typical for a person with bronch, accordingly to what I have read. I just accept that I have a chronic illness and try to be positive and enjoy life as much as possible.

Hope you are all well in 2008.

Marilyn in St.

Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

Hi Marilyn,

How tall do you consider tall? I'm 5'7", how about you? My sister is 6' and my mom 5'10" and they don't have any lung troubles. We are all thin. I had an awful bout of Norovirus stomach flu last Christmas and came down with lung troubles a week later. Had never had any lung problems previously, but I have had GERD for the past five years.

It is so good of everyone to share their experiences with what is working for them and what hasn't worked. For me doing the inverted chest percussion/drainage/coughing routine daily and exercising has made all the difference. Not much stuff in there but boy does it cause me discomfort and illness if I don't keep getting rid of it.

Kay

-------------- Original message -------------- From: Mmanow1@...

Some interesting comments out there. I have researched bronch quite a bit too, especially after being told about 1 1/2 years ago that I would need to be on rotating antibiotics and prednisone for the rest of my life, would never feel better, and eventually would not be able to get out of bed!! This from my former pulmonary dr who I really respected. Unfortunately, she moved out of the area, and then so did I, so I found a new pulmonary dr in St. , IL, who did some tests and was told I have immunoglobulin deficiency and could never take antibiotics again. Well, I thought I was done. However, although I often feel very fatigued and need to rest quite a bit, I have NOT had another infection. I did recently ask a gastrointestinal dr about a CT scan I had showing my esophagus was dilated. He did a esophagram which shows my esophagus has no motility, food just gets down by gravity. So another test, a manometry of my esophagus at

a teaching hospital in Chicago. Fortunately, it is not the worst case, which would require removing the esophagus and attaching my stomach in my chest. (Ugh) So now I take a proton pump med (Nexium), chew carefully and drink liquids when I eat. As for the bronchiectasis, I guess it is on hold. None of the doctors I have seen here in St. seem to have a clue about that. They call this the "orphan" disease, I guess because no one cares about it.

I did have whooping cough as a child, chronic bronchitis throughout my life, sinus infections, and a chronic cough for about 30 years, am thin and tall and 71 years old, all very typical for a person with bronch, accordingly to what I have read. I just accept that I have a chronic illness and try to be positive and enjoy life as much as possible.

Hope you are all well in 2008.

Marilyn in St.

Start the year off right. Easy ways to stay in shape in the new year.

January 12, 2008

I am 5' 10" and have always been thin, so didn't think much until I realized two years ago I was losing weight, I got down to 120 before I was diagnosed with emphysema. I was having trouble breathing at the time, but still working full time. A dietician helped me work out a program so I could get my weight up a little. I am 128 now, but strangely, the problems I was having then no longer are present. Now, it is more the phlegm in the a.m. and fatigue. I have a suspicion all this respiratory stuff is affecting my heart. I did have a heart catharization last spring after a CT scan showed severe pulmonary hypertension, but the heart cath indicated no such problem. However, I understand these pulmonary problems can lead to heart failure. I am not looking for a disease, but want a doc who tries to understand what I am going through. Most just want to give me antidepressants and have no answers. I do take a very low dose anti anxiety med once a day, just to deal with it all.

Thanks for listening. Please feel free to vent also.

Marilyn in St.

Hi Marilyn..first things first. Many of us with lung problems are thin. This is because we work SO HARD to breathe. My resp therapist and nutritionist explained it this way:

The typical <average, healthy> person jogs to burn calories..lose weight. Their heart rate rises cause they're jogging..running, etc.

OUR heart rates are higher normally, even at rest..some of us more than others. A normal resting heart rate for me can range in the high 80s to mid 90s. When I move around..or when something happens to upset or excite me, my heart rate rises to around 120..just walking can make this happen..anxiety, etc..you name it. Hence, we're burning calories a whole lot faster, losing body fat and eventually when there's no body fat left to burn, muscle mass. I'm 5'5" and 94 lbs. My average weight is around 117. I hate being this thin..and right now I'm very disappointed in my failing body. No matter how I try I can't gain weight

There's a product on the market for weight gain. My nutritionist recommended this. It's called " Scandi Shake" ..you can order it online..

http://www.axcan.com/scandishake_us.php

This is more nutritious and more high calorie than Boost or Ensure. So, there's an option for those of you who need to add a supplement to your caloric diet for weight gain.

Also, those of us with chronic health disorders suffer from depression. It's typical. Last year I was on anti anxiety meds ( xanax ) to help me cope. As I got a grip on my breathing problems..taught myself not to panic..meditated more..learned other breathing techniques rather than gasping for air ( pursed lip breathing really helps and works if you focus )..I don't need my anxiety meds the way I used to.

Also, my neb helps me immensley. When I start to get panicky or feel I'm beginning to gasp, I do my neb..it helps me regulate my breathing as well as open up my constricted airways, relaxing me.

I know how difficult this is for you..it is for me too

Sandie

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.

January 12, 2008

It is so good of everyone to share their experiences with what is working for them and what hasn't worked. For me doing the inverted chest percussion/drainage/coughing routine daily and exercising has made all the difference. Not much stuff in there but boy does it cause me discomfort and illness if I don't keep getting rid of it.

Hi Kay..and yes, this is so true.

For those who dont have the coughing probs we have it can be quite disturbing for them to hear us coughing.

And though for us, esp while in public, it's embarrassing too, cause we know how much discomfort it causes others..HOWEVER !! ( finger in the air )..to a point, this coughing is a GOOD THING FOR US !!

HUH???? you may say...HOW can you say it's good for us ..( you ask >

some of us go to great lengths ( hanging over a bed while our backs are being pounded on like percussion drums) to rid our lungs of that tacky sticky gunk.

I have a vest..basically it does the same thing hanging over a bed does..only I dont have to hang over the bed ! That's quite uncomfortable for me, breathing wise..in other words, I can't !

This coughing and hacking and gasping exhausts us. It causes us to gasp..it causes some of us to panic if the tacky sticky crap gets stuck in our bronchi ( airway) and we then panic cause we can't get it OUT and at this point, we're having a harder time breathing while this stuff is there in our airway !

Hang on..slow down..when you're trying to cough this crap out, practice breathing thru your nose instead of your mouth..( pursed lip breathing ) take breaths between coughs, drink more water as you are coughing this garbage out ( the water helps thin and loosen it) ..slow down..don't panic..use your neb. The neb helps to liquify and loosen the sticky stuff and get it out, a little better.

But in the long run, and coming full circle..this coughing which irritates others really is good for us..cause once we get that junk out of our lungs ' we ' feel a whole lot better..we can breathe..we can walk again..and to me, that's what's important, not their disgust nor uncomfortableness..THEY arent the one's who CAN'T breathe..so, THEY need to ' get over it '..

Sandie

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.

January 12, 2008