MAC/NTM is Different for Everyone, Treatment might be different too

The most helpful:
1) learning about 7% saline. It has really improved my condition.
2) learning about Pari Vios nebulizer.
3) learning about Mucinex.
4) learning about benefit of manuka honey.
5) learning about laryngopharyngeal reflux and benefit of sleeping with wedge pillow.
6) learning about pros and cons of big 3.
And, I am sure I am missing some other things but these were game changers for me.
Knowing I am not alone in this is incredibly comforting. We are all in this together!
This group is a source of knowledge, inspiration, hope and compassion for others. I am very grateful!

Thank you Dee. I am so happy for you you made it through. It seems so far away it is difficult to feel optimistic at this point. The doctor told me I could expect to begin to feel better after 2-3 months on the antibiotics. Did you experience that? Right now I’m just too tired and sick to do anything but I am hopeful for at least some improvement soon. Thanks for your response and encouragement.

MJ

Hi, NTM/MAC is very slow growing...have your symptoms increased? Is it making you cough more, feel more fatigue so you don't do things, etc? These are a couple considerations for you considering getting a sooner appointment or another sputum test. What I've heard through this site is that not all people end up taking the Big 3 meds because it hasn't affected their life as much but are perhaps being monitored.

Thank you! I actually feel better now than I have in a while. I have off days but right now my good ones outnumber the bad ones. We’ve made a lot of changes in our life to reduce my stress. I think that is helping greatly. The saline has been key for me too! Your comments are very helpful to me!

I think I just wrote in a post recently that if my CT is stable and I have no new symptoms, my team has no interest in a sputum culture. But I have been told to call at the first sign of an exacerbation - increased cough, colored mucus, fever, fatigue - to agree on a course of treatment.
Just keep doing what makes you feel healthy. And keep encouraging others here.
Sue

I so appreciate the information I have found on this forum. I read through the various sections - I have gotten something from each. Perhaps the most important me for has been learning from all of you the essential need to do regular airway clearance and the value of it.

I came to a diagnosis of bronchiectasis almost as an afterthought. In late 2019 I was sick with a really nasty respiratory bug for weeks. Had a surprising shortness of breath with exertion. Eventually got over the acute phase but was losing weight. It was at the height of the worst of Covid so I didn’t seek care. Got covid from family just before the vaccines came out, lost more weight, had a chronic cough. Eventually checked in with my doc, had X-rays, antibiotics and when the X-rays didn’t clear, had a CAT scan, was referred to a pulmonologist. Had nodules and 3 small - about 1cm cavitaries. Had a bronchoscopy. Both aspergillosis and MAC were present…. Started with treatment for aspergillosis. Modest improvement at 3 months on CT, unchanged after 7 mos more treatment. Pulmonologist feels maybe MAC was the symptom driver all along vs aspergillosis resistance to the drug used to treat. Now have had MAC in a sputum culture.

That last CT report mentioned bronchiectasis and gave some details and is relatively mild I think because the bronchiectasis had been visible on CT scan all along but not mentioned in the first two reports or by my pulmonogist until I commented on it. My pulmonologist was really supportive of my thoughts about doing lung hygiene and ordered a nebulizer and 7% saline for me, as well as the Aerobika.

I have to say that these Mayo connect groups gave me a deeper understanding of and motivation to really do the work of airway clearance. Truthfully, that may be the thing that’s helped me the most. I’m still working on finding the most effective combination or sequencing of nebulizer, aerobika, exercise, and postural drainage. Over the last two - three months of taking this to heart I’ve had more energy, fewer “sick days” and certainly fewer episodes of coughing up blood and clots.

Re MAC - am on the watchful waiting plan.

Leslie51

Hi there. Did you find the Pari Vios a good option? I have both the Vios and the Proneb Max. I find the later to be more effective or powerful. How much Manuka Honey do you use each day? I have some but hesitate to use enough due to being pre diabetic.

The subject of colored mucus is confusing to me. People mention it as a sign of exacerbation and yet my pulmonologist said when you have Bronchiectasis you can produce colored mucus routinely so he does not count that as exacerbation. He looks more to how you feel such as very tired and no appetite etc. I produce brownish colored mucus every day and yet when last treated with an antibiotic that worked it did clear up to light yellow and way less quantity. But it just builds back up over time which he said is typical with Bronchiectasis. Anyway I suppose it just depends on the person and what defines an exacerbation for them.

Hi MJ!
Yes!! The first 3 months were rough and it gradually got better. I take big 3 thrice weekly and morning after meds it was usually a “couch day” for me with fatigue and fever. But as I persevered, that happened less and less. Now I have a couch day, maybe once a month. Hang in there, lady! We’re going to be what hubby calls MAC
Beaters😜
Dee

I've been on the three antibiotics for 13 months. I have no idea if they are helping, or not. Recently changed lung doctor, but have had only the first visit; second one end of this month. I am very anxious to get his perspective on this disease. I'm really hoping to get off the meds. For me---there are 3-4 negative side effects from the Ethambutol. I DO plan to stop taking it. My first doctor did nothing but put me on the meds, after a bronchoscopy and CT scan. I do have nodules in my lungs. I am very grateful for this site, where we can discuss our feelings and fears. It helps.