RE: no cure for bronchiectasis

[Guest guest]

lower-dose, longer-duration course is better ie 10-14 days. I would NOT recommend continual abx, I cannot fathom why any Dr is still recommending it – there are so many other issues with that:

knocking out bacteria from your system allows fungal growth (usu Candida albicans) to proliferate, and is very hard to treat to control once it becomes entrenched (has taken about 6 yrs from finding out its existence to finally getting it under control). The candida infections were oral, oesophagus, skin and of course, vag. Not nice at all!

all gut flora is killed - causing digestive probs, constipation/diarrhoea cycles, poor nutrient assimilation ( & poss resultant osteoporosis (?? I don’t know yet).

THIS is the reason you need to take probiotics with anti's..many many of us have no other choice than to do long term anti's..

we want to protect and replace our good flora..yogurt along w/OTC probiotics will do the trick and keep our colons in tact..

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 Cassie,

(I thought I’d include this one for you too Mark, because Bronch is very slow- for some people, apparently not evident til older years, but I haven’t had chance to specifically research bronchiectasis and mortality).

I guess because I really have not known any other way of life other than cough cough and sputum ,my difficulty is not knowing what health is like. I missed some school every year of my life and have had difficulty holding down a full-time job, always. Sometimes I managed to be well enough to enjoy some ‘normal’ life at times... Often not.

How long before abx side effects? after pneumonia (3rd time) age 29, a year on Bactrim x2, t.d.s, no improvement. Specialist said don’t come back because I wanted to discontinue abx. Prednisilone (steroid) caused lower bowel bleeding. Several years later I had 18 months very severe diarrhoea which just would not respond to anything, but did eventually stop when I gave up on all prescribed meds...

In my mid-40s, had recurring bronchitis (exacerbations) & just did not ever get really better – just went from acute to low-grade infection and back again, and continued until a dr sent a sputum specimen to pathology to have tested for resistance and found that ALL the usual meds were resistant, and put me on Ciproxin, which did work at last. I’d been asking docs to test for previous 8-10 yrs, and told, don’t worry...

I still kept getting fevers, and had 7-8 exacerbations in as many months. Over xmas/new year unable to get a doc. My dr then kept increasing dosage, but still 7-day. I had a 14-day spell in hospital for IV antibiotics, and have not had such bad fevers since.

What I have read and found out since is that lower-dose, longer-duration course is better ie 10-14 days.

I would NOT recommend continual abx, I cannot fathom why any Dr is still recommending it – there are so many other issues with that:

knocking out bacteria from your system allows fungal growth (usu Candida albicans) to proliferate, and is very hard to treat to control once it becomes entrenched (has taken about 6 yrs from finding out its existence to finally getting it under control). The candida infections were oral, oesophagus, skin and of course, vag. Not nice at all!

all gut flora is killed - causing digestive probs, constipation/diarrhoea cycles, poor nutrient assimilation ( & poss resultant osteoporosis (?? I don’t know yet).

progression is so slow, and now in my 50s, and everyone says oh, well, we all get older!, I feel a little annoyed – yes, me too, with a disease that has knocked me around a long time already! I really don’t know how to manage getting older, and of life expectancy ...? I know maybe it sounds morbid, but I kind of wished there was a point there would be a sudden downturn, and quick death, but I have not yet seen/heard evidence of this. I have seen people in their 70s, carrying oxygen around, barely able to walk... Maybe it doesn’t happen that way for everyone with bronch, I don’t know.

When I was 19 a doc said I’d be dead by 50 and the last 10 yrs wouldn’t be worth living. I’m 55, and still have ‘good’ health sometimes, but, yes, what he said had some truth, and probably would be if antibiotics and their use weren’t continually being developed and improved. It seems that for some people, resistance to all abx develops, but don’t know if this is to do with particular complications

I hope this hasn’t totally depressed you! BUT – bronch is an idiopathic condition ie very variable, it presents and behaves inconsistently. Even the way it develops in one individual is - feel great one day, awful the next then fine again. And then there’re wide variations between individuals, with some people not affected so much. HOW it affects is largely due to primary infection – as I mentioned previously: P aeruginosa, H influenzeae, aspergillus (fungal), Staph and others. There’s often more than one... Good to have your doc send a sputum specimen to pathology to determine which is the predominant ‘bug’, as well as what it’s resistance to abx is.

stay well and enjoy the view on the journey, even if moving along it slowly!

Joy - Queensland, Australia

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" 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]

Amen!

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

[Guest guest]

yes eating flavored yogurt is the same as plain as long as it is probiotic, live active cultures,,also i get from GNC in pill form acidolphulus, you keep it in the refrigerator,it will keep you from getting fungus problems

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

[Guest guest]

Joy, what is the web-site with info on reversible bronchiectasis? Mine is early and I sure would like to know what to do and not do besides the daily percussion, taking my Protonix for atypical GERD, and getting exercise.

Thanks, Kay

-------------- Original message --------------

Hi again Marilyn,Funny, just after sending message about ‘no cure’ I came across a web-site, with references to ‘reversible bronchiectasis’ ie early days of, before it really sets in. Don’t know if that actually happens much, so little seems to be known about it within the medical field the biggest prob is a diagnosis before it’s too late to be reversible...Cheers all-- Joy

/SPAN>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]

I just talked to my doctor today and he said it's fine to take probiotics. He actually recommended a probiotic called Jarro Dophilus. I plan to buy it but was wondering how much dosage of each tablet do you take each day? And, you only use it during the times you take abx, right? I assume you haven't had any side effects at all from the probiotics, right?

I'm also going to eat yogurt everyday. Do you know if it's okay to eat flavored yogurt as a probiotic (as opposed to plain)?

Thanks again and hope you're doing okay,

Cassie

Hi Cassie..any yogurt is good as long as it has " Live cultures " listed on the container..I never realized this till I had a chat w/my Alpha1 coordinator..i'm not worried about low fat, no fat..what I want to know is are there live cultures in my yogurt..cause that's what's gonna help me the most.

Yes..I only use the probiotics when I'm taking my antis..and no, I've never had side effects from it..I am QUITE med phobic..and I always ask the same ??s you do..as far as doseage goes..that would be a good ?? for your pharmacist or dr..I'm not a dr..I dont pretend to be one..and I wouldn't feel comfy suggesting something as important as that to 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]

Audrey,

A bit of good news, about two months ago I saw a call out from the National Lung Association for doctors to do a research study for bronchierctasis. I asked to be on the list to be advised as to the progress, but haven't seen anything else on it.

Also, yes the immunoglobulin deficiency is from taking too many anti's and prednisone. My previous pulmonary doctor who I really respected, moved to a different part of the state, so I can't ask her. She had told me I would be on anti's and prednisone for the rest of my life. My new pulmonary doc diagnosed the Ig as it is called. No other tests as the infections seem to have subsided, even though the coughing, difficult breathing nad fatigue continue. He did say I could have immunoglobulin infusions if I developed an infection. I guess they do it as an out patient procedure, but I have been told it is very expensive.

I try to take each day as it comes and enjoy life as much as possible.

Have a great day,

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

[Guest guest]

hi audrey

i also saw an article a few months ago about Brochitol. It's in Phase 3 testing. The article said it's the first drug in 20 years to be developed for bronchiectasis. It didn't give a lot of details in the article but i do know they had all the "guinea pigs" selected and expected to publish results in 2008.

I don't believe that the intention was to cure it..but, to treat it and make breathing easier.

Betty

Audrey,

A bit of good news, about two months ago I saw a call out from the National Lung Association for doctors to do a research study for bronchierctasis. I asked to be on the list to be advised as to the progress, but haven't seen anything else on it.

Also, yes the immunoglobulin deficiency is from taking too many anti's and prednisone. My previous pulmonary doctor who I really respected, moved to a different part of the state, so I can't ask her. She had told me I would be on anti's and prednisone for the rest of my life. My new pulmonary doc diagnosed the Ig as it is called. No other tests as the infections seem to have subsided, even though the coughing, difficult breathing nad fatigue continue. He did say I could have immunoglobulin infusions if I developed an infection. I guess they do it as an out patient procedure, but I have been told it is very expensive.

I try to take each day as it comes and enjoy life as much as possible.

Have a great day,

Marilyn

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

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

[Guest guest]

Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition.

Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one.

Kay

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

Hi Joy,

You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least.

I am going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength.

Stay strong

Marilyn

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

[Guest guest]

In Calif all yogurt must contain live cultures! My first husband was chairman of a univ. dairy science dept.

Kay

-------------- Original message -------------- From: Sunniesback55@...

I just talked to my doctor today and he said it's fine to take probiotics. He actually recommended a probiotic called Jarro Dophilus. I plan to buy it but was wondering how much dosage of each tablet do you take each day? And, you only use it during the times you take abx, right? I assume you haven't had any side effects at all from the probiotics, right?

I'm also going to eat yogurt everyday. Do you know if it's okay to eat flavored yogurt as a probiotic (as opposed to plain)?

Thanks again and hope you're doing okay,

Cassie

Hi Cassie..any yogurt is good as long as it has " Live cultures " listed on the container..I never realized this till I had a chat w/my Alpha1 coordinator..i'm not worried about low fat, no fat..what I want to know is are there live cultures in my yogurt..cause that's what's gonna help me the most.

Yes..I only use the probiotics when I'm taking my antis..and no, I've never had side effects from it..I am QUITE med phobic..and I always ask the same ??s you do..as far as doseage goes..that would be a good ?? for your pharmacist or dr..I'm not a dr..I dont pretend to be one..and I wouldn't feel comfy suggesting something as important as that to you..

Sandie

Never Look Down on SomeoneUnless You're Willing to Help Them Up

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

[Guest guest]

Dear Marily, I have a great Plum. Dr. right here in Pompano Beach Florida. My primary Dr. sent me to his group because I had the cough, phlegm, small amounts of blood in the phlegm and all the antibiotics she prescribed were not effective. He did a work up, found me a challenge, and finally diagnosed the Bronch. His name is Darrin Hoffberger 954- 941-1147 and he takes very good care of me and in addition his staff is excellent with the phone backs, and prior approvals with my HMO. All the best, Eileen-FLericnkayn@... wrote: Good grief, your doctors are appalling! The local pulm dr in our city "diagnosed" my probable problem over the phone when my internist called him after azythromycin didn't stop the coughing and phlegm problem I was having last winter! Then when I was sent to UC ' pulmonary clinic for a work-up the physician professor and one of his pulm fellows (students with an MD studying to be pulm drs) found it on a recent x-ray and said there was a little bronchitis in addition. Did you say you live in Florida, Marilyn? Surely wherever you live there doctors better informed than the one's you've seen!? Best of luck in finding a good one. Kay -------------- Original message

-------------- From: Mmanow1aol Hi Joy, You are right about it being difficult to diagnose. I read in an article on the web recently that bronch was just recognized in 1995. It takes many forms, one of them is cystic fibrosis, and it can be pediatric and/or idiopathic (no known cause). So a lot of docs don't really know what they are dealing with. The internist I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of many I have seen) and completely overlooked the emphysema and pulmonary reports about pulmonary hypertension. When I told him I have bronchiectasis he said "Huh, bronchiectasis?" and that was that. The pulmonary doc I see now acts like he doesn't know what it is and tells me I am tired because I am depressed. It is very frustrating to say the least. I am

going to start probiotics and try the Kashi Go Lean someone recommended because I need to build up my strength. Stay strong Marilyn Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Hi Cassie and others,

Been watching your e’s about immunoglobulin infusions... This is something new to me? Maybe has a diff name in Oz. I’ve had 14-day IV abx w Gentamycin, ... But I think is not the same?’

I also know people here who can no longer take ANY meds – abx, fungal or steroid and only a mere 5-6 yrs older than I am, but with multiple infections.

I haven’t heard anyone yet talk of what their infection is – it is important to know, as this will make a big difference to choice and efficacy of treatment...

Love your body, care for your mind, as much as you can, anyway!

Joy

(from Oz)

--

Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

Hi Cassie,

Funny that the answer to my question was in the article I sent you! Ta,

cheers

Joy

(from Oz)

--

Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

Hi Joy

I live in Ontario, Canada which we have a similar plan called OHIP (Ontario Health Insurance Plan) which is Gov't run with our Federal and Provincial tax dollars. All our Dr's and Specialist visits are covered almost 100% of all testing is covered...Presciption drugs are free after 65 years old....and there are private insurance plans available (expensive if you want to be on a dental, drug plan) All our Hospital visits and stays are paid thru the Gov't. There are Gov't run programs for free living for disabled unable to work too.

With this type of program you're right we are the fortunate of the world. It relieves a lot of stress from your daily life. Sometimes there is a long waiting list for treatment depending on what your needs are because the system is free everyone takes advantage of the service and some people take up time of the ones that are really in need of a surgeons hand....Nothing is perfect in life......But Health is everything to everyone and should be accessible to everyone in the world! If this were the case disease would be limited and there would be less suffering.

Have a Fabulous Day, and I must say the correspondence on here in the last few days has been extremely informative. Thanks, so much to everyone.

Make the Best of Today!

Re: no cure for bronchiectasis

Hi Kay, lin,I think you guys should just come and live in Australia! Oz feels backward at times, but it seems I am very fortunate in some aspects:I have govt supported health costs – it’s just a shame there are almost no drs in Aust who have any idea of bronch! - My local dr (GP, ie general practitioner) is helpful, and refers out for many things, and listens at least, but really is at a loss often, but she’s only 6km away, and bulk-bills (ie the cost is paid by the government). - Most of my meds are on a govt listing and cost $5 each, (even for Ciprox, which I believe is several hundred $ actual price, for a 7-day course, which is usually not enough anyway). And even so, I find the expenses pile up, as I am unable to work, and have no-one supporting me in any way at all.I live courtesy a govt disability pension – which pays the rent, food, transport and etc etc before starting on dental and medical things!At least medicine is available – and this is not the case in many parts of the world, we are the lucky ones?Joy (from Oz)-- Sentient beings, all our very own mothers, are as limitless as space

[Guest guest]

I’m in Melbourne florida and can

recommend likewise.

From: bronchiectasis

[mailto:bronchiectasis ] On

Behalf Of Eileen Bauer

Sent: Friday, January 18, 2008

8:41 AM

To: bronchiectasis

Subject: Re: no

cure for bronchiectasis

Dear Marily,

I have a great Plum. Dr. right here in

Pompano Beach Florida. My primary Dr. sent me to his

group because I had the cough, phlegm, small amounts of blood in the phlegm and

all the antibiotics she prescribed were not effective. He did a work up,

found me a challenge, and finally diagnosed the Bronch.

His name is Darrin Hoffberger 954- 941-1147 and he takes very good care

of me and in addition his staff is excellent with the phone backs, and prior

approvals with my HMO.

All the best,

Eileen-FL

ericnkayncomcast (DOT) net

wrote:

Good grief, your doctors are appalling! The local pulm dr in our

city " diagnosed " my probable problem over the phone when my

internist called him after azythromycin didn't stop the coughing and phlegm

problem I was having last winter! Then when I was sent to UC '

pulmonary clinic for a work-up the physician professor and one of his pulm

fellows (students with an MD studying to be pulm drs) found it on a recent

x-ray and said there was a little bronchitis in addition.

Did you say you live in Florida,

Marilyn? Surely wherever you live there doctors better informed than the

one's you've seen!? Best of luck in finding a good one.

Kay

-------------- Original message --------------

From: Mmanow1aol

Hi Joy,

You are right about it being difficult to

diagnose. I read in an article on the web recently that bronch was just

recognized in 1995. It takes many forms, one of them is cystic

fibrosis, and it can be pediatric and/or idiopathic (no known cause). So

a lot of docs don't really know what they are dealing with. The internist

I was seeing from 1999 until 2006 sent me to a pulmonary doctor (one of

many I have seen) and completely overlooked the emphysema and pulmonary reports

about pulmonary hypertension. When I told him I have bronchiectasis he

said " Huh, bronchiectasis? " and that was that. The

pulmonary doc I see now acts like he doesn't know what it is and tells me I am

tired because I am depressed. It is very frustrating to say the least.

I am going to start probiotics and try

the Kashi Go Lean someone recommended because I need to build up my strength.

Stay strong

Marilyn

Start the year off right. Easy

ways to stay in shape in the new year.

Never miss a thing. Make Yahoo

your homepage.