Please Share your MAC and Bronch Success Stories - However Small

I have been on azithromycin,Clofazamine and Ethambutal for 1 1/2 years. How long do people usually stay on these medicines?
I take the medication‘s fine no side effects . My sputum‘s specimen six months ago said that I still had Mac and I sent a new specimen in yesterday. I am fairly asymptomatic although I am bringing up a little bit more in the mornings but I would call myself asymptomatic except for sob — but I do play golf in Tampa Florida and with the humidity that can take it out of you I hydrate a lot. Life is good right now.

Just recently started posting again..feels nice to be back..I have Bronchiectasis, MAC, MAI and colonized pseudo..was on the big 3 2 1/2 yrs ago..what has worked for me, increasing my lung capacity from 61 to 76 within a year is nebulizing albuteral, then attaching my Aerobika to nebulizer and nebulizing 7 percent saline, then AC clearance on my back for app 20, then nebulize Colistin every other month..takes just over an hr, 2x a day..boiling water 10 minutes for drinking, and another 10 minutes for sterilizing in a silicone basket in a stainless steel pot..I have now been able to push back the pseudo for 7 weeks off, and 4 weeks nebulizing Colistin..I’m pretty diligent with this..1hr daily exercise is huge, and allows me to bring up more mucous..my recent CT shows immense improvement..❤️🙏🏻

Just recently started posting again..feels nice to be back..I have Bronchiectasis, MAC, MAI and colonized pseudo..was on the big 3 2 1/2 yrs ago..what has worked for me, increasing my lung capacity from 61 to 76 within a year is nebulizing albuteral, then attaching my Aerobika to nebulizer and nebulizing 7 percent saline, then AC clearance on my back for app 20, then nebulize Colistin every other month..takes just over an hr, 2x a day..boiling water 10 minutes for drinking, and another 10 minutes for sterilizing in a silicone basket in a stainless steel pot..I have now been able to push back the pseudo for 7 weeks off, and 4 weeks nebulizing Colistin..I’m pretty diligent with this..1hr daily exercise is huge, and allows me to bring up more mucous..my recent CT shows immense improvement..❤️🙏🏻

Wow Kathy, Makin’ lemonade when life deals ya lemons is child’s’ play to you. You parlay aversions to victories!

Thumperguy - Nice of you to say that but I’ve spent more than my share of time feeling angry and sorry for myself to be dealing with bronchiectasis and Mac at this point in my life.

I have worked very hard to make this regimen part of my lifestyle and to be optimistic and hopeful about my health. Sometimes it works and other times I let myself wallow in self-pity for a few days before picking myself up and getting back on track.

My lemonade is not always sweet but I’m working on it 🙂

I was diagnosed with MAC in 2013. The colonization was incidentally found when I had a breast MRI. A bronchoscopy confirmed MAC; a CT confirmed bronchiectasis. The first 5 years I was asymptomatic so my ID Drs and my Pulmonologist decided not to treat me but to monitor its progress. I have had CTs and Dr visits every 6 months and some sputum tests but, since I don't cough anything up, I have not had many. Some sputum tests were positive; some were negative. The CTs showed some progression over the years but I was still asymptomatic - except I couldn't hike up a hill or walk up more than 3-4 flights of stairs without having to stop or sit down to catch my breath and bring down my heart rate. The CT in October 2018 showed new nodules and, for the first time, the radiologist suggested a follow up CT in 3 months. Then in December 2018, I coughed up blood. I wasn't coughing hard nor was I coughing for a long time. My Pulmonologist put me on 7 days of Zithromax and started me on Singulair and Symbicort (I don't have asthma or COPD). Since then my CTs have gotten better, then stayed about the same, etc. In January 2020 I had a major acid reflux episode and aspirated into my lungs causing inflammation in both lungs. For the first time my ID Dr said we may have to think about treatment. That is when I found the Mycobacterium Avium Complex/NTM Information & Support on FaceBook and learned about airway clearance. NO ONE had mentioned airway clearance to me - ever. I told my Dr that I wanted to try airway clearance before I start any meds. He kinda poo-poo’d it but said we could try. 6 months later my CT showed a huge improvement! Then my sputum sample in May 2020 was negative! And Woo HOO my last 3 sputum samples were negative as well!! And without meds! Airway clearance is and will be part of my daily life forever.

Woo Hoo indeed! I often wonder if I had learned about airway clearance when I had my first episode of "intractable asthma" 30 years ago, it would have prevented the progression to bronchiectasis.
What type of airway clearance do you do? Do you use saline in your nebs? 7% of something else?
Thanks for the positive story!
Sue

I was diagnosed with MAC in 2013. The colonization was incidentally found when I had a breast MRI. A bronchoscopy confirmed MAC; a CT confirmed bronchiectasis. The first 5 years I was asymptomatic so my ID Drs and my Pulmonologist decided not to treat me but to monitor its progress. I have had CTs and Dr visits every 6 months and some sputum tests but, since I don't cough anything up, I have not had many. Some sputum tests were positive; some were negative. The CTs showed some progression over the years but I was still asymptomatic - except I couldn't hike up a hill or walk up more than 3-4 flights of stairs without having to stop or sit down to catch my breath and bring down my heart rate. The CT in October 2018 showed new nodules and, for the first time, the radiologist suggested a follow up CT in 3 months. Then in December 2018, I coughed up blood. I wasn't coughing hard nor was I coughing for a long time. My Pulmonologist put me on 7 days of Zithromax and started me on Singulair and Symbicort (I don't have asthma or COPD). Since then my CTs have gotten better, then stayed about the same, etc. In January 2020 I had a major acid reflux episode and aspirated into my lungs causing inflammation in both lungs. For the first time my ID Dr said we may have to think about treatment. That is when I found the Mycobacterium Avium Complex/NTM Information & Support on FaceBook and learned about airway clearance. NO ONE had mentioned airway clearance to me - ever. I told my Dr that I wanted to try airway clearance before I start any meds. He kinda poo-poo’d it but said we could try. 6 months later my CT showed a huge improvement! Then my sputum sample in May 2020 was negative! And Woo HOO my last 3 sputum samples were negative as well!! And without meds! Airway clearance is and will be part of my daily life forever.

Thank you. I am certain it is helping keep mine at bay. I don’t cough so I don’t produce unless I’m doing airway clearance - and then it is minimal. I neb 7% twice a day with an Aerobika in line with my neb cup. More often if I feel “chesty”. I follow that with autogenic draining and huff coughing. Good luck to you!