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How is everybody doing?

Posted by @windwalker, Aug 5, 2017

Hello All! The forum has gone quite. Haven’t heard from some of you in awhile. I am hoping some of you will check in. As for me, I just got ALL of my sputem lab reports going back to 2013 as I had requested. My very last test from June came back negative for everything. Yay!!!! I still battle fatigue and shortness of breath though. There were some organisms picked up in the past that I had not recognized, so I am going to Google them. Look forward to hearing from everyone! -Terri M.

REPLY

Great news for you, Terri……. congratulations. My last four sputum tests have been negative but….. I cannot see or learn that there was any further culturing for MAC or any other really bad bacteria. I’m wondering if the initial testing is negative — that that mean there’s not much chance of MAC being there or something would show up in the 24 hour tests? Does anyone know the answer to this.

Also, my primary care has been insistent I have a pulmonologist closer to home. Rochester is 10 hours from here. So…… he made me an appt with one and I saw him yesterday. He did extensive breathing tests and concluded I have asthma. Sent me home with an inhaler which I used yesterday evening and have had a headache ever since. I’ve never noticed anything in my life that made me think asthma —- just horrid coughing with phlegm. No shortage of breath. Mayo’s (of course) did breathing testing when I was there two years ago and they didn’t mention asthma. This “closer to home” fella says I have only 55% lung function and if it drops to 45% it will be COPD. I’ve no experience with this…… I’m 76 years old and am wondering what the normal lung function percentage is for someone in my age group. Can you give me any info?????

@auntnanny

Great news for you, Terri……. congratulations. My last four sputum tests have been negative but….. I cannot see or learn that there was any further culturing for MAC or any other really bad bacteria. I’m wondering if the initial testing is negative — that that mean there’s not much chance of MAC being there or something would show up in the 24 hour tests? Does anyone know the answer to this.

Also, my primary care has been insistent I have a pulmonologist closer to home. Rochester is 10 hours from here. So…… he made me an appt with one and I saw him yesterday. He did extensive breathing tests and concluded I have asthma. Sent me home with an inhaler which I used yesterday evening and have had a headache ever since. I’ve never noticed anything in my life that made me think asthma —- just horrid coughing with phlegm. No shortage of breath. Mayo’s (of course) did breathing testing when I was there two years ago and they didn’t mention asthma. This “closer to home” fella says I have only 55% lung function and if it drops to 45% it will be COPD. I’ve no experience with this…… I’m 76 years old and am wondering what the normal lung function percentage is for someone in my age group. Can you give me any info?????

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Hi Jan. When were those last sputem tests you had done? I am not saying you don’t have asthma, but I was told for years that I just have asthma; when in fact, I had bronchiecstasis. Did this new local pulmonologist do any sputem test on you?

The four negative tests were all done this year. Each time I have a flare of coughing (really coughing and lots of green phlegm), I do a sputum test to determine which bacteria is currently present. Then, Mayo’s give antibiotics accordingly. But….. the last four (very last one was about 3 weeks ago) have been negative. But, antibiotics work anyway and then I’m good for another few weeks.

@auntnanny

Great news for you, Terri……. congratulations. My last four sputum tests have been negative but….. I cannot see or learn that there was any further culturing for MAC or any other really bad bacteria. I’m wondering if the initial testing is negative — that that mean there’s not much chance of MAC being there or something would show up in the 24 hour tests? Does anyone know the answer to this.

Also, my primary care has been insistent I have a pulmonologist closer to home. Rochester is 10 hours from here. So…… he made me an appt with one and I saw him yesterday. He did extensive breathing tests and concluded I have asthma. Sent me home with an inhaler which I used yesterday evening and have had a headache ever since. I’ve never noticed anything in my life that made me think asthma —- just horrid coughing with phlegm. No shortage of breath. Mayo’s (of course) did breathing testing when I was there two years ago and they didn’t mention asthma. This “closer to home” fella says I have only 55% lung function and if it drops to 45% it will be COPD. I’ve no experience with this…… I’m 76 years old and am wondering what the normal lung function percentage is for someone in my age group. Can you give me any info?????

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No….. but I was able to give him a lung scan done two weeks ago and he could see bronchiectasis in lower right lobe. I had seen this guy back in 2010 before I even thought about going to Mayo’s……. at that time, again…… he called it asthma and gave me inhalers. He has a good reputation and personally, I do like him, but I am just perplexed about the asthma. He also wants to start a program of 250 mg daily for 12 months of azithromicin……… he feels I should not have an episode more than once/twice yearly. That would be great — incidentally, he was quick to say I did not have bronchiectasis in 2010……. and I’m sitting there wondering how he knew that — he didn’t do a sputum test or a cat scan. He did an x ray and breathing tests and said asthma. Of course the cough continued and after many years, I finally went to Mayo’s.

I am glad to hear that you are current on the sputem tests, and that they turned out to be NEGATIVE! Just remember that the bronchiecstasis should be monitored on a regular basis. The fact that you don’t get the mycobacterial infections is amazing, and you are fortunate. Also very lucky that you are not short of breath. You must have a pretty good immune system.

Do you feel if there was any MAC involved that there would be some type problem in the 24 hours sputum tests? Or…… could I have MAC and have short term tests negative????? Do you know that answer?

@auntnanny

Do you feel if there was any MAC involved that there would be some type problem in the 24 hours sputum tests? Or…… could I have MAC and have short term tests negative????? Do you know that answer?

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There is no 24 test for MAC. It takes 6-8 weeks to grow. It is a slow growing bacteria. You are probably negative since you got your sputem cultures back three weeks ago.

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

@auntnanny

Great news for you, Terri……. congratulations. My last four sputum tests have been negative but….. I cannot see or learn that there was any further culturing for MAC or any other really bad bacteria. I’m wondering if the initial testing is negative — that that mean there’s not much chance of MAC being there or something would show up in the 24 hour tests? Does anyone know the answer to this.

Also, my primary care has been insistent I have a pulmonologist closer to home. Rochester is 10 hours from here. So…… he made me an appt with one and I saw him yesterday. He did extensive breathing tests and concluded I have asthma. Sent me home with an inhaler which I used yesterday evening and have had a headache ever since. I’ve never noticed anything in my life that made me think asthma —- just horrid coughing with phlegm. No shortage of breath. Mayo’s (of course) did breathing testing when I was there two years ago and they didn’t mention asthma. This “closer to home” fella says I have only 55% lung function and if it drops to 45% it will be COPD. I’ve no experience with this…… I’m 76 years old and am wondering what the normal lung function percentage is for someone in my age group. Can you give me any info?????

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My Mayo dr said for me to never take azithromycin because it is one of the BIG GUNS. He said he did not want me to become resistant to it and then if I were to get sick in the future and nothing else worked, then we could fall back on it. It sounds like your dr put you on that as a preventative measure. I was on a similar regimen with doxycycline and ciprofloxacin for three years. Now mine is tobramycin and cipro. Doctors seem to have different theories on how to treat people. Sometimes it comes down to a ‘Suseptability Test’ which shows what antibiotic will work.

Thank you for your comments about asthma and COPD — appreciate it

@auntnanny

Great news for you, Terri……. congratulations. My last four sputum tests have been negative but….. I cannot see or learn that there was any further culturing for MAC or any other really bad bacteria. I’m wondering if the initial testing is negative — that that mean there’s not much chance of MAC being there or something would show up in the 24 hour tests? Does anyone know the answer to this.

Also, my primary care has been insistent I have a pulmonologist closer to home. Rochester is 10 hours from here. So…… he made me an appt with one and I saw him yesterday. He did extensive breathing tests and concluded I have asthma. Sent me home with an inhaler which I used yesterday evening and have had a headache ever since. I’ve never noticed anything in my life that made me think asthma —- just horrid coughing with phlegm. No shortage of breath. Mayo’s (of course) did breathing testing when I was there two years ago and they didn’t mention asthma. This “closer to home” fella says I have only 55% lung function and if it drops to 45% it will be COPD. I’ve no experience with this…… I’m 76 years old and am wondering what the normal lung function percentage is for someone in my age group. Can you give me any info?????

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Thanks much for your knowledge and input

@auntnanny

Do you feel if there was any MAC involved that there would be some type problem in the 24 hours sputum tests? Or…… could I have MAC and have short term tests negative????? Do you know that answer?

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It takes 6-8 weeks for MAC to grow from a sputem test. You got a negative result three weeks ago from a recent test.

@robynmar

Hi folks! I’m just finishing up my Cipro and had a surprise diarrhea attack this morning. Also, trouble sleeping. No mucus is coming up, which worries me. The sneaky low temps are fewer. I’m still waiting for a report from my Infectious Diseases doctor; I’ll nudge him when I am done with the Cipro. My guess is that my MAC is dormant and I have other more common bacteria which is causing the trouble. I’m feeling very fortunate. By the way, asthma was always the go-to diagnosis when the doc couldn’t think of anything else. Then COPD. That was before the discovery of the MAC and M. lentiflavum. Bronchiectasis was the first diagnosis and is the underlying condition of my lungs. We’re having a surprise humid hot summer here in the Bay Area. But the fog is due to arrive any day now. blessings, Robyn

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Hi Robyn! Let’s hope that you are on the upward trend of getting better. It sounds like you are despite the other annoying things that are going on. I feel for you though; I too have been having sleepless nights.

Jan, we are not saying you do not have asthma. Often times asthma and COPD go hand-in-hand with bronchiecstasis. It is called ‘co-morbid disease’. I have all three and then some! -Terri

Liked by tdrell

@auntnanny

Do you feel if there was any MAC involved that there would be some type problem in the 24 hours sputum tests? Or…… could I have MAC and have short term tests negative????? Do you know that answer?

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I got a report only from the 12-24 hour testing…… as far as I know there was no culturing sent in for MAC

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