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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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Carolyn | @cld120 | Aug 7, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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 | @tdrell | Aug 7, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017
In reply to @cld120 "Terri/@windwalker, this is Carolyn (59 yo diagnosed with MAC and mild bronchiecstasis earlier this summer.) I..." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017
In reply to @robynmar "I just finished 10 days of Cipro with side effects of insomnia and diarrhea. I'm exhausted...." + (show)
@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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 8, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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.

REPLY
Carolyn | @cld120 | Aug 8, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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!

REPLY
tdrell | @tdrell | Aug 8, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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

REPLY
Carolyn | @cld120 | Aug 8, 2017
In reply to @tdrell "Cld120 re no production of sputum for cultures....at NJH they -respiratory therapists- used a high degree..." + (show)
@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

Jump to this post

@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.

REPLY
robynmar | @robynmar | Aug 8, 2017

I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn't go to sleep. I'm still not sleeping well and feel really zonked. Never had that before. I'm not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I'm sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I've actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I'm not sure what "improvement" would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it's time for that now. Thanks for your caring, blessings, Robyn

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2 replies
auntnanny | @auntnanny | Aug 8, 2017
In reply to @robynmar "I did not have a good experience with Cipro this time. Towards the end, lots of..." + (show)
@robynmar

I did not have a good experience with Cipro this time. Towards the end, lots of diarrhea, and throughout, I had great difficulty in sleeping. I was up for hours in the middle of the night; just couldn't go to sleep. I'm still not sleeping well and feel really zonked. Never had that before. I'm not sure that Cipro helped that much; actually the Bactrim worked better on the 99.5 temps and no diarrhea. Just nausea, which, in retrospect, seems a better choice. The amount of sputum now is minimal, which I hope is good. I'm sounding better because I have a better idea of what is wrong. Before, there was no clear picture. I've actually had a few mornings when my head was clear, not fuzzy. I have my hands full here with a difficult husband who is terminal with cancer and relatives who are helpful but coming and going. I'm not sure what "improvement" would mean for me. Probably no temperature. The coughing never was a problem since I only cough up stuff once a day. In fact, it's time for that now. Thanks for your caring, blessings, Robyn

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I'm just jumping in here (without knowing exactly which bug you are treating)...... but Mayo's had me on Bactrim previously...... and cipro....... but clindamycin has been the one that has worked best for me.  Less side effects and better outcome.  Just
wondering if you have tried that.  It's my favorite of all that's been tried for me.

Jan Todd

T-Bar Country

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