Re: good for lungs, digestion - NOT reflux!

February 13, 2011

What most people don't realize is that one can think their reflux is under control (I sure did!) but one might in fact, be having silent reflux. I took my meds, knew what not to eat and when to eat, slept with my head elevated. But when tested by the gastroenterigust, we discovered that I had 54 episodes of reflux in a 48 hr period and was only aware of one incident. The problem is that one can aspirate this stuff and that keeps one chronically infected. Since my meds were changed, I've gone from oxygen says of 90-92 to 98 - a huge difference in my shortness of breath. I believe that everyone with bronchiectasis should be tested.SuzanneSent from my iPhone

oops sorry everyone! I do have mild reflux but mostly can avoid if

don't lie down after eat/drink, and have evening meal very early

(like 5-6pm).

..... just ideas if can be tolerated, sometimes takes trial and error!

cheers all,

joy

February 13, 2011

hi Suzanne

yep, I recall you mentioning that before.... quite amazing! What,

how is reflux tested. I know I sometimes get an 'almost' reflux

feel....a tinge of a taste, but not usually severe, food never seems

to make a difference.

Maybe it is something I should get checked out. It's years since a

dr has even asked, and I didn't even know what it was so I said 'no'.

thx for the heads up,

joy

February 14, 2011

The test involved putting a small transmitter/monitor in my stomach - this was

done endoscopically, using the kind of injected sedation that is used for

colonoscopies. It was done in the ambulatory care center on an outpatient

basis. I was officially " conscious " , but have no memory of the procedure at

all. I then was given a small receiver - similar to the kind used with Holter

monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept

a diary of when I ate/slept/experienced reflux or heartburn etc. Then I

returned the monitor and diary to my doctor - transmitter/monitor in my stomach

passed and I was unaware of it - it's that small. This is called a ph

monitoring test.

If this test had been done when I first noticed a plummet of my oxygen SAT rate

and increased shortness of breath, I would not have ended up with pseudomonas

and more advanced bronchiectasis. I lost over a year of my life due to no one

listening when I told them that I suspected that it was the change in my acid

reflux meds that had brought this on. I never thought to go to a

gastroenterologist on my own - should have done so in hindsight. But then I

didn't know I had bronchiectasis as I had never had a chest CT to diagnose it

and all doctors thought my breathing problems were due to worsening asthma.

When I look back, I realize that my asthma was very well controlled and had been

for years. The doctors always did wonder why it was controlled (no attacks and

visits to the ER unable to breath), yet my pulmonary function was never very

good. That was the bronchiectasis! I'd had it for years!

Sometimes I think I should have gone to med school just so I could make sure I

was being properly treated. And yes, I live in a fairly large city and was

seeing highly respected doctors, so it's not like I was seeing some backward,

country doctor.

One thing I have learned is that if ones doctor can't identify and solve the

problem in a couple of visits, one must go to a medical school and see the

experts. Would that I had done this 18 months ago!

Another thing I have learned is that bronchiectasis patients should see a

pulmonologist who specializes in cystic fibrosis. The vast majority of those

who have bronchiectasis, also have CF. In fact, all bronchiectasis patients,

regardless of age, should be tested for CF to be sure they don't have it.

Doctors are now finding CF in patients who are in their 60's - they didn't all

die in their early teens as was thought for so many years. CF doctors simply

have a lot more experience with bronchiectasis than regular pulmonologist who

mainly deal with COPD due to smoking. It is NOT treated the same!

The antibiotic protocol is totally different. I am about to undergo

desensitization to Zithromax (I got hives when I took it many years ago). The

standard protocol for antibiotic use in bronchiectasis patients with pseudomonas

colonization is to take Zithromax M-W-F for as long as it works, ie for many,

many years. Inhaled Tobramycin would also work but most insurance companies

will not pay for it unless there is a diagnosis of CF, and the IV form has a

fairly significant risk of permanent bilateral hearing loss (I sure don't need

THAT!).

I've only known I had bronchiectasis since late March, but I've sure learned one

heck of a lot about this disease. I've had to do so if I wanted to breath and

have my life back!

Suzanne

February 14, 2011

wow, what a process, thx for so much info. I'll talk to my doc

about this, tho have never heard of it being done here - not that

that means anything!

cheers,

joy

February 15, 2011

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 15, 2011

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis.

So really I think that the sweat test is quite reliable, Mayo did a 2nd one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! eSubject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

I just joined your group and have been catching up on the emails. I have been trying to find a support group for many years and am so happy to be on board. I was officially diagnosed in 1999 with bronchiectasis but had been doctoring with lung problems since 1989. Mayo Clinic had me on monthly antibiotics until I started the Vest. At one time I was able to be off antibiotics for 1 yr. 9 mos. In May 2010 I experienced a bad pneumonia and was hospitalized. Ever since I think the disease has progressed and I have been on Levaquin every month since November. I only use Albuterol - 2 puffs before the vest - and have found I need to use the vest for a complete hour to get the deep mucus out.

I've been to Denver at the National Jewish Hospital for Respiratory Disease and am thinking I need to return for an evaluation.

I am a 69 yr. old female from the Midwest and will be happy to hear from anyone.

Sharyn Poppen

To: bronchiectasis Sent: Tue, February 15, 2011 9:31:33 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis. So really I think that the sweat test is quite reliable, Mayo did a 2nd

one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! e

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

Hi Kay - my bronchiectasis was from having so many lung infections over the years. They tested me for acid reflux in Denver but did not have it. Yes, Levaquin is a big gun and that is what scares me. I think I need to take something to thin out the mucus. Since last May I have been using the vest during the day for 1 hr. and then in the evening before bed for another hr. My husband thinks I am using it too often. I also use the "Acapella".

My local pulmonary doctor wants me to start the antibiotic when the mucus turns yellow & green. Does anyone go for a long time with the bad colored mucus and not get pneumonia?

Sharyn

To: bronchiectasis Sent: Wed, February 16, 2011 1:29:59 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

Have you been tested for pseudomonas? If you have (most bronchiectasis patients do), antibiotics are used a lot - often all the time on a 3 day a week regime. I can't say whether you will or won't get pneumonia, but you will be sick when the pseudomonas isn't kept at bay.Have you tried mucinex or inhaled saline to thin your mucus?Sent from my iPadSuzanne R Brown

Hi Kay - my bronchiectasis was from having so many lung infections over the years. They tested me for acid reflux in Denver but did not have it. Yes, Levaquin is a big gun and that is what scares me. I think I need to take something to thin out the mucus. Since last May I have been using the vest during the day for 1 hr. and then in the evening before bed for another hr. My husband thinks I am using it too often. I also use the "Acapella".

My local pulmonary doctor wants me to start the antibiotic when the mucus turns yellow & green. Does anyone go for a long time with the bad colored mucus and not get pneumonia?

Sharyn

To: bronchiectasis Sent: Wed, February 16, 2011 1:29:59 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

I guess I'm odd (heck I KNOW I am!). I'm allergic to innumerable antibiotics but NOT to Levaquin. It can have tons of side effects and is poison to some folks, but thank heavens I CAN take it until I can be desensitized to the Zithromax, which I will take 3 days a week for as long as it works for me.Sent from my iPadSuzanne R Brown

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it

was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits,

one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it

works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

I sometimes spit up yellowy-green stuff, mainly in the morning and at night. Much to my surprise, though, I too have acid reflux, one of the symptoms of which, for me, is spitting up, but in this case it's white and goopy. I started my meds to stop the long-lasting wracking coughing I was experiencing. Mayo Rochester (I love that place) put me on a Levaquin-Septra-Azithromycin rotation so as not to let the bacteria develop a tolerance to any one antibiotic. Managed the cough but increased the spitting up. Oh, well...

I'm not sure I answered your question, but hey, hi, Sharyn--welcome to the group.

D.

To: bronchiectasis From: sharynp2@...Date: Wed, 16 Feb 2011 11:42:09 -0800Subject: Re: good for lungs, digestion - NOT reflux!

Hi Kay - my bronchiectasis was from having so many lung infections over the years. They tested me for acid reflux in Denver but did not have it. Yes, Levaquin is a big gun and that is what scares me. I think I need to take something to thin out the mucus. Since last May I have been using the vest during the day for 1 hr. and then in the evening before bed for another hr. My husband thinks I am using it too often. I also use the "Acapella".

My local pulmonary doctor wants me to start the antibiotic when the mucus turns yellow & green. Does anyone go for a lon time with the bad colored mucus and not get pneumonia?

Sharyn

To: bronchiectasis Sent: Wed, February 16, 2011 1:29:59 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

Levaquin-Septra-Azithromycin rotation so as not to let the bacteria develop a tolerance to any one antibiotic...............................

Good idea because I became immune to Levaquin. It did not cure my pneumonia this Sept. and as a result I was hospitalized with IVs and also had a Pseudomonis infection.EILEEN

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux! The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my

life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing

I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard

protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 16, 2011

Have you tried Mucinex? In high doses it's supposed to do a good job thinning the mucus. Also ask one of the people on this sight taking lots of natural foods and supplements to give you a list. Can't remember who it is, but she had a stellar list of things that have really made a difference in her health and bronch. Garlic, onions, turmeric, good unsweetened yogurt (add your own fruit), ginger, green tea, green and orange veggies, and several other foods really do up your immune function, which helps keep infections at bay. I would cut out trans fats and saturated fats (meat, full fat dairy) as much as you can. This will get your lipid levels where they should be and help your general heath a lot.

The other thing is exercise. Walk and do intervals of moderate jogging if you can, start with just a few blocks if need be. Lift hand weights (they're inexpensive) in front of your TV or take aerobics/strength classes. Classes are great to get you started on correct form in lifting weights and good form for other exercises. Pulmonary rehab is great if your exercise capacity is limited. The more exercise you can fit into your life, the better your lung function will be. You probably already know this, but just in case...

Good luck to you!

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 17, 2011

Sharyn

sounds to me an hour on vest is awfully long time. Are you still coughing up heaps after all that time. Maybe try breaking your physio into 2 x 15-20 min /day. There is an optimum level as with most things... some days 15 mins on 16 hz does me wonders, when I have loads 'backlog' then I need more and 16 hz is too much of a rattle so a alternate between 16-12-14hz, whatever works plus feels ok.worth a try? Joy (from Oz)

February 24, 2011

To: bronchiectasis Sent: Tue, February 15, 2011 9:31:33 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis. So really I think that the sweat test is quite reliable, Mayo did a 2nd

one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! e

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

Hi e,

I am so sorry that your son has had to go through so much at such a young age. Hopefully, the doctors are on the right track now. He is lucky he has a family that did not give up but keep searching for answers until they got them. Good for you.

Thank you for the info on CF testing.

Cindi W

February 24, 2011

Hi Sharyn,

I am glad you made it so long without antibiotics. I am sorry that you now have been needing to take them. Hopefully, things will get back to you being able to be off them again.

I think this disease is so unpredictable. Just as soon as you feel you have it all under control you get sick again. I am fighting off something tonight and going in for a sputum culture tomorrow or Saturday.

I find that once I start antibiotics I just stay on them so I am trying a lot of supplements to keep off them but it doesn't always work.

Cindi W.

To: bronchiectasis Sent: Wed, February 16, 2011 1:20:55 PMSubject: Re: good for lungs, digestion - NOT reflux!

I just joined your group and have been catching up on the emails. I have been trying to find a support group for many years and am so happy to be on board. I was officially diagnosed in 1999 with bronchiectasis but had been doctoring with lung problems since 1989. Mayo Clinic had me on monthly antibiotics until I started the Vest. At one time I was able to be off antibiotics for 1 yr. 9 mos. In May 2010 I experienced a bad pneumonia and was hospitalized. Ever since I think the disease has progressed and I have been on Levaquin every month since November. I only use Albuterol - 2 puffs before the vest - and have found I need to use the vest for a complete hour to get the deep mucus out.

I've been to Denver at the National Jewish Hospital for Respiratory Disease and am thinking I need to return for an evaluation.

I am a 69 yr. old female from the Midwest and will be happy to hear from anyone.

Sharyn Poppen

To: bronchiectasis Sent: Tue, February 15, 2011 9:31:33 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis. So really I think that the sweat test is quite reliable, Mayo did a 2nd

one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! e

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 24, 2011

Hi Sharyn again,

I used to start an antibiotic when my mucus was green. Now I wait until I start running a fever since my mucus is almost always green.

Cindi W

To: bronchiectasis Sent: Wed, February 16, 2011 1:42:09 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Kay - my bronchiectasis was from having so many lung infections over the years. They tested me for acid reflux in Denver but did not have it. Yes, Levaquin is a big gun and that is what scares me. I think I need to take something to thin out the mucus. Since last May I have been using the vest during the day for 1 hr. and then in the evening before bed for another hr. My husband thinks I am using it too often. I also use the "Acapella".

My local pulmonary doctor wants me to start the antibiotic when the mucus turns yellow & green. Does anyone go for a long time with the bad colored mucus and not get pneumonia?

Sharyn

To: bronchiectasis Sent: Wed, February 16, 2011 1:29:59 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn and welcome to our group! Do you know what caused your bronchiectasis? Mine was caused by severe acid reflux. I'm sorry to hear about your pneumonia hospital stay. Levaquin is a big gun, are you off of it for a period of time each month? Beware as you get older, I Googled it's adverse effects once when my dr wanted me to take it, and they can be very severe, especially in older people.

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 24, 2011

Hi Cindi - it was good to read your comments........you are SO RIGHT.......this disease is very unpredictable.When you said you were fighting something now and need to get a sputum culture, does that mean you are running a fever? We were in Kansas City last May when I got real bad and had to be rushed to the hospital, so my husband wants me to take the antibiotics more often. I was shopping the day before I got sick - slept very well during the night and then the next morning I had chills, high fever, couldn't breath. I guess that has scared me now so I don't want to go too long with it being green - ick, don't you just hate it? We are in the south for the winter and when I get home, I could possibly let it go longer since I will be close to my Dr. I hope

you don't have anything bad going on in your lungs and that it will clear up for you. So nice to be in contact with you.

Sharyn

To: bronchiectasis Sent: Thu, February 24, 2011 6:30:23 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn,

I am glad you made it so long without antibiotics. I am sorry that you now have been needing to take them. Hopefully, things will get back to you being able to be off them again.

I think this disease is so unpredictable. Just as soon as you feel you have it all under control you get sick again. I am fighting off something tonight and going in for a sputum culture tomorrow or Saturday.

I find that once I start antibiotics I just stay on them so I am trying a lot of supplements to keep off them but it doesn't always work.

Cindi W.

To: bronchiectasis Sent: Wed, February 16, 2011 1:20:55 PMSubject: Re: good for lungs, digestion - NOT reflux!

I just joined your group and have been catching up on the emails. I have been trying to find a support group for many years and am so happy to be on board. I was officially diagnosed in 1999 with bronchiectasis but had been doctoring with lung problems since 1989. Mayo Clinic had me on monthly antibiotics until I started the Vest. At one time I was able to be off antibiotics for 1 yr. 9 mos. In May 2010 I experienced a bad pneumonia and was hospitalized. Ever since I think the disease has progressed and I have been on Levaquin every month since November. I only use Albuterol - 2 puffs before the vest - and have found I need to use the vest for a complete hour to get the deep mucus out.

I've been to Denver at the National Jewish Hospital for Respiratory Disease and am thinking I need to return for an evaluation.

I am a 69 yr. old female from the Midwest and will be happy to hear from anyone.

Sharyn Poppen

To: bronchiectasis Sent: Tue, February 15, 2011 9:31:33 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis. So really I think that the sweat test is quite reliable, Mayo did a 2nd

one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! e

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

February 24, 2011

Cindi - you mentioned supplements - am wondering what they are.?

Sharyn

To: bronchiectasis Sent: Thu, February 24, 2011 6:30:23 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hi Sharyn,

I am glad you made it so long without antibiotics. I am sorry that you now have been needing to take them. Hopefully, things will get back to you being able to be off them again.

I think this disease is so unpredictable. Just as soon as you feel you have it all under control you get sick again. I am fighting off something tonight and going in for a sputum culture tomorrow or Saturday.

I find that once I start antibiotics I just stay on them so I am trying a lot of supplements to keep off them but it doesn't always work.

Cindi W.

To: bronchiectasis Sent: Wed, February 16, 2011 1:20:55 PMSubject: Re: good for lungs, digestion - NOT reflux!

I just joined your group and have been catching up on the emails. I have been trying to find a support group for many years and am so happy to be on board. I was officially diagnosed in 1999 with bronchiectasis but had been doctoring with lung problems since 1989. Mayo Clinic had me on monthly antibiotics until I started the Vest. At one time I was able to be off antibiotics for 1 yr. 9 mos. In May 2010 I experienced a bad pneumonia and was hospitalized. Ever since I think the disease has progressed and I have been on Levaquin every month since November. I only use Albuterol - 2 puffs before the vest - and have found I need to use the vest for a complete hour to get the deep mucus out.

I've been to Denver at the National Jewish Hospital for Respiratory Disease and am thinking I need to return for an evaluation.

I am a 69 yr. old female from the Midwest and will be happy to hear from anyone.

Sharyn Poppen

To: bronchiectasis Sent: Tue, February 15, 2011 9:31:33 PMSubject: Re: good for lungs, digestion - NOT reflux!

Hello - Yes getting tested for C/F is not very complicated. They normally just do a 'sweat' test. They rub a stick over your wrist and any sweat they get on the stick is tested. There are a large # of Bronchiectasis pts who also have Cystic Fibrosis. My son's sweat test was 9. That is in the middle of NORMAL range. The next year he wasn't showing signs of improving from his 'asthma', so the pulmonologist did a bronchoscopy on him, fully sedated. He sent the mucous he sucked out of my son's 5 yr old lungs to pathology, looking for C/F again. Pathology said, "No C/F/ mucous!" Then they did genetic testing on him and my husband and me. NO C/F! Then finally we gave up on docs in Orlando and went to Mayo Clinic in Rochester, Mn. That's where I first heard of bronchiectasis. So really I think that the sweat test is quite reliable, Mayo did a 2nd

one on Sammy, just to ck Orlando's work and Sam was still a '9'. Sam has cylindrical bronchiectasis. That's just a fancy way of saying they caught it early. I cannot imagine that being true, as he suffered for 4 years, coughing and wheezing and doing all the WRONG meds. They shut down his adrenal gland, they brought Clergy into the E.R. one night for him! All the wrong meds finally took their toll. Don't let that happen to you. Get a 2nd opinion, go to the best hospital you can fly to. Rochester, Mn. is 2 airplanes and an hour and a 1/2 bus ride away from our home. SO WORTH IT!!! Best wishes and take it ez! e

Subject: Re: good for lungs, digestion - NOT reflux!To: bronchiectasis Date: Tuesday, February 15, 2011, 9:46 PM

Thank you for the information. That is very interesting about being tested for CF. How is that done?

Cindi W

To: bronchiectasis Sent: Mon, February 14, 2011 9:04:11 AMSubject: Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne

Sign In

Re: good for lungs, digestion - NOT reflux!

Recommended Posts

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity