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How is everybody doing?

Posted by Terri Martin, Volunteer Mentor @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.

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auntnanny | @auntnanny | Aug 5, 2017
In reply to @auntnanny "Great news for you, Terri....... congratulations. My last four sputum tests have been negative but..... I..." + (show)
@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

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2017
In reply to @auntnanny "Do you feel if there was any MAC involved that there would be some type problem..." + (show)
@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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2017

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

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5 replies
auntnanny | @auntnanny | Aug 5, 2017
In reply to @auntnanny "Do you feel if there was any MAC involved that there would be some type problem..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2017
In reply to @auntnanny "Do you feel if there was any MAC involved that there would be some type problem..." + (show)
@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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You can request that you get a TRUE 6 week MAC culture. Especially if it would ease your mind to know for sure.

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auntnanny | @auntnanny | Aug 5, 2017
In reply to @auntnanny "Do you feel if there was any MAC involved that there would be some type problem..." + (show)
@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?

Jump to this post

It appeared each time that the culture was requested but..... nothing has ever come back and when I check with the lab, they have nothing. Do you know anything about what lung function percentage should be for an old lady 76 years old????

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 5, 2017
In reply to @auntnanny "Do you feel if there was any MAC involved that there would be some type problem..." + (show)
@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?

Jump to this post

Jan, no, I do not know. Bear in mind, you are not a typical 'old lady', you have bronchiecstasis. That and asthma affect your lung function. My lung function is at 44% and I am 58 yrs old. My doctor said that if it does not drop any further; that I could live a long time like this. On the bright side, you are doing way better than I am!

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robynmar | @robynmar | Aug 5, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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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I've never had trouble sleeping and before the Cipro I was sleeping 3-4 hours a day with naps and 8 hours at night. Didn't realize that "hard to sleep" was a side effect of an antibiotic. My mind feels likes it is on steroids. Has anyone else had this side effect? Robyn

REPLY
auntnanny | @auntnanny | Aug 5, 2017
In reply to @robynmar "Hi folks! I'm just finishing up my Cipro and had a surprise diarrhea attack this morning...." + (show)
@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

Jump to this post

Robyn, I take Naproxen for arthritis and BP meds and antibiotics every month for bronchiectasis and I have no idea the culprit but ---- I sleep only 2 hours no matter what time I go to bed. Cannot go back to sleep and it hurts too much to lie there so I get up and go to the office and can pass an hour or so quickly in there. Then, I go back to bed and can usually sleep about 4 more hours. That's all the sleep I get. I'm not a napper but wish I could. Also have been having to change night clothes because of the sweating. Don't like that either and have no idea from where it's coming except that Mayo's ask me if I had night sweats and I said "no" -- which was true two years go but ....... started soon after. They told me at that time that is a side effect of bronchiectasis.....

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