COPD Bronchiectasis ABPA New: MAC & AFB

Sorry to hear about your diagnosis. I can’t speak on the COPD or APBA but I think for many the MAC diagnosis is tough because it’s a chronic illness which requires daily intervention (airway clearance) plus if determined to be best, long term medication. I opted for the big 3 which is an antibiotic cocktail of arithromycin, rifabutin and ethambutol, the side effects of which can be tough. Labs to monitor, along with vision and hearing screening is required. Once the MAC infection is cleared the drugs are still taken for 12 months from that date. This forum does have a list of questions you can use to bring to your dr along with a wealth of information and support.

Thank you. I’ll plug along and live my best life with what my lungs have to offer.

I also have ABPA (since 2011), MAC, and bronchiectasis. I nebulize levabuterol and 7% saline solution 2x day, which helps tremendously with my airway constriction.

I had asthma before I "caught" ABPA from clearing out a compost heap. Most folks who have had ABPA for many years eventually develop bronchiectasis and associated bacterial infections, such as MAC, pseudonomas, etc.

In my case the ABPA is the more serious disease (I am treated with steroids and itraconazole), and my pulmonologist has chosen not to treat me with the big 3 antibiotics. They are pretty tough on your body and some folks cannot tolerate them. To make matters worse, the MAC can return even after you have cleared it with antibiotics. The daily lung clearance is a pain the neck but it really helps, you might consider doing that instead of the antibiotics to keep the MAC "suppressed."

I’ve heard if you don’t treat the MAC, it will cause more lung damage. It will not go away on its own. Yes the antibiotics were a pain to take for 9 months but it was worth it.

I think I'm correct in saying that most docs will tell you that you may die with MAC, not from/because of MAC.
Unfortunately I was the exception; fortunately, by the grace of God, I'm still here! I ended up having an episode of mass hemoptysis (2015) which prompted a change in doctors, and ultimately the end of a lengthy cycle of MAC infections. I feel like I'm the only one here that doesn't nebulize and haven't for years. I had been nebulizing saline with an antibiotic, then after the change in physicians I was only nebulizing hypertonic saline. My lungs still blead so I was eventually taken off all inhaled drugs. I have a rescue inhaler only at this point.
My point being, MAC isn't something that needs to be feared. It's just difficult to treat. AFB is the bacteria that causes TB and MAC infections.
I wish you well on your journey. You are definitely not alone!

@rmoore901 - Glad I saw this.
I have been on the big 3, three times a week, for 6 weeks. My daily cough disappeared within 10 days. I wasn't told to do airway clearance; was only told about the liver test (after 5 weeks mine was normal; I'll have another one in a couple months) and not about hearing and vision screening, although I was told that ethambutol (I think) can cause red-green colorblindness, which I haven't (yet) experienced. Doc said I may be able to go off the ethambutol in December (so far, the only bad side effect for me has been fatigue).

@rc4mc you will likely find a wealth of information here, many of us have commented that most of what we have learned is from this site vs our medical provider, in particular if your pulmonologist or infectious disease doctor doesn’t treat a lot of NTM or BE patients. I would suggest checking with your Dr to see about a referral to both an ophthalmologist along with routine hearing screenings. This will give you a baseline along with monitoring for any changes. It’s good your initial labs showed your liver values were good as definitely something which should be monitored during treatment. Fatigue is definitely a factor although it can be a toss up as to whether caused by the disease itself or the meds. Check out some of the posts about nebulizing and the huff cough, along with the Aerobika. Even if you don’t cough anything up, starting and maintaining airway clearance is highly recommended.

@rmoore901
I only took the Big 3 for 9 months and then stopped.

@tiredgranny2
I was diagnosed with MAC in July 2021 and took the Big 3 for 9 months. I also have bronchiectasis. With the help of an allergist, I was diagnosed with ABPA now. I’ve never smoked and I don’t have asthma. I’m only 62 years old.

Did you have specific tests to diagnose ABPA? My aspergillus comes in the sputum often and my pulmonologist sent me to an allergist who ordered a battery of tests which showed I had no ABPA