How is everybody doing?

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Little old Kaiser out here also required 3 samples over three days….

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@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 was saved by Tamoxifen, which was new at the time. I continued taking it for 15 years when they had to pry it out of my hands!

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I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I’m exhausted. The symptoms of low grade temp and amount of sputum are less. We’ll see what the Infectious Diseases Doc has to say. I think the plan will be to not worry about the relatively inactive MAC bacteria and concentrate on the more opportunistic bugs like Proteus. I hope I don’t have to go on a maintenance schedule of antibiotics! I think it is interesting that there seems to be a trend not to try to “cure” the MAC with the big 3. It doesn’t seem to work. robynmar

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the “Big Three” tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday’s. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I’ve since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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I had a bronchoscopy in late May to biopsy nodules and an area that looked like a tunnel with fuzz in it which turned out to be MAC. (This was done because of a questionable CT scan.) I was quite anxious about the bronchoscopy when nurses explained I had to be awake so I could follow the doctors instructions. First, the pulmonologist spent ~10 minutes spraying numbing solution down my nose/throat, which he urged me to swallow. Then he threaded a slender tube down my nose (THAT I DID NOT FEEL), then down my throat to the lungs. The nurses explained that I had to be awake to “sing” which opened the lung valve (that normally closes when food or anything foreign nears). As soon as it was in, on the 2nd try, he told the nurse to give me Fentenyl through the IV. I don’t recall anything else. The only reason I knew what would take place is because I told the nurses how freaked out I was by this procedure. I did insist on them calling my doc to get permission to take a xanex, which helped!

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Tdrell, I am still confused as to how I will produce sputum & not just saliva. I rarely to never can cough up mucous..

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Cld20 I am guessing….mucus comes from inside lung and what is wanted….saliva is from mouth….not wanted…. so bronchoscopy sample of fluid is for sure from lungs…..and if I expectorate /cough up stuff first thing in morning…before drinking or eating….it is visibly thicker and usually lite yellow or green ……..versus saliva which is thin and clear. Tdrell

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@cld120

Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I saw an ID doc at Mayo a couple weeks ago and start on the “Big Three” tomorrow. Actually, Azithromyacin this week, adding Rifampin and Ethambutol each of the following two Monday’s. I am trying to stay positive but am quite anxious about starting a minimum of 14 months of this regimen. Anyway, I’ve since gotten all my baseline tests, a pneumonia shot, started probiotics (Florastor) & had an endoscopy to assess GERD. Also began a routine of Albuterol inhalant, a nebulizer and Aerobika twice daily.

Here are a couple questions:
I have never produced phlegm or mucous.
How will we do sputum tests? (How often are they done, usually?)
Do you have to have a bronchoscopy each time you need one?
Thanks!

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Good morning Carolyn! I am so glad to hear that your bronchoscope was not a horrifying experience. This will help others who may need one in the future for the first time; to not be so fearful. Thank you for sharing that. – Terri M.

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@robynmar

I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I’m exhausted. The symptoms of low grade temp and amount of sputum are less. We’ll see what the Infectious Diseases Doc has to say. I think the plan will be to not worry about the relatively inactive MAC bacteria and concentrate on the more opportunistic bugs like Proteus. I hope I don’t have to go on a maintenance schedule of antibiotics! I think it is interesting that there seems to be a trend not to try to “cure” the MAC with the big 3. It doesn’t seem to work. robynmar

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Good morning Robyn! I just finished my 10 day run of Cipro last night. Looks like we are on the same page. That antibiotic will be in your system awhile yet, so here’s to hoping you continue to improve from it. You sound a better than when you and I first connected, don’t you think? Hugs – Terri

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Hi Carolyn. Did they ever try a forced sputem test on you? That is where they have you inhale strong sodium chloride (strong saline) that irritates the lungs and causes deep coughing to bring up sputem from deep down? – Terri M.

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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No, they haven’t. Respiratory Therapy at a local hospital was going to try it but the RT’s said they’d NEVER had any success doing it. I am going to an Infectious Disease specialist at the University of Kentucky Medical Center at the end of August. Am hoping that folks there are more experienced with MAC/sputum inducement! After using the nebulizer for several weeks with a 3% saline solution twice/day, I am coughing more & getting a tiny bit of mucous up, hoping this accelerates!

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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Cid120 if l recall correctly at NJH the respiratory therapist had me start on back in bed and do inhalation therapy….thendo coughing…with the way they taught there…deep breathes thru nose…huff out 3 times and cough on last…. tdrell

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@tdrell

Cld120 re no production of sputum for cultures….at NJH they -respiratory therapists- used a high degree of sodium solution for inhalation to irritate lungs to produce mucus.
At NJH…they collect 3 specimens over 3 days.
I am collecting them here at home in Wisconsin….first one had too much saliva so I had to repeat it…I was going for quantity….lab told me how to differentiate … I have the lung secretions when I awaken I have discovered.
I had a bronchoscopy a year ago….no problems!
Tdrell

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@tdrell, So you literally do Inhaler (I use Albuterol 1-2 puffs 2x/daily), then Nebulizer laying on your back?
At Mayo, the book they gave me says to sit up straight, but I can certainly try that way.

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