Is MAC a disease where there is remission but ultimately rarely a cure

I found this case report from Japan on the allergic form doing a quick scholarly search that you might find interesting. I was surprised by steroids, but guess it's because of reaction.
Note: I've had neither MAC nor aspergillosis.
https://pmc.ncbi.nlm.nih.gov/articles/PMC8334719/

Here's another paper with MAC and aspergillosis, also from Japan, in which they avoided steroids. These cases were not from the antibiotics, but diagnosed concurrently.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10533704/

Thanks @pacathy . I’ve never had MAC or aspergillosis either and was diagnosed with mild BE in 2023. My pulmonologist says it is very mild but I still have sputum production so I’m only guessing that some or most cilia are destroyed by infections left untreated and I know airway clearance is key to remaining healthy now.

Maybe data doesn’t yet exist to show how common MAC is in people who have mild BE , who also do airway clearance etc, but don’t have comorbidities or other lung issues except Bronchiectasis. I’m sure ID docs would have an opinion.

Of course if airway clearance wasn’t standard care until 2017 or so that makes a difference.
Thanks for your response! I’ll look at it.

If you ask AI if antibiotics weaken the immune system it will clearly say yes and list reasons as below:

By disrupting the gut microbiome and impairing immune function, antibiotics can increase the risk of developing other infections, including fungal infections.

I had thrush and Aspergillus after several months on the big 3. I used Nystatin rinse at first but discontinued when the thrush went away, which was also when I started on Cresemba. I will finish the 12 week course of Cresemba in two weeks but my Dr said I should use the Nystatin rinse for the duration of the antibiotic treatment. I am hoping to not have to but almost seems like a given that it will return once I’m not on anti fungal.

& @cd33 Research is ongoing, both in the US and elsewhere. Some of the questions being studied include:
Whether case of Bronchiectasis and NTM are increasing or recognition and diagnosis are driving the numbers
What predisposes some people to Bronchiectasis
How people acquire their infections
Why people in some area get more NTM infections than in other areas.

Already research has led us to the following advances:
Sensitivity testing of NTM growing in the lab to optimize antibiotic therapy
Arikayce (inhaled Amikacin) for treating stubborn NTM infections
The importance of airway clearance in preventing serious infection
The use of nebulized 3 - 7% saline in tamping down NTM infections
The role of inhaled aerosols rich in NTM infections - peat, water, dirt - and ways to decrease exposure
The coming release of the first biologic - Brensocatib - to help interrupt the progression of Bronchiectasis
The use of phage therapy for life-threatening intractable infections - so far still experimental

We don't see headlines when these things happen because we are such a tiny part of the population, but research is happening worldwide.

Yes, I was diagnosed in 2019. I’m sure I had MAC and bronchiectasis from about 2013. Not one doctor after the 2019 diagnosis told me about airway clearance. So they watched and waited until 2024 when I was told I should be on the big 3 as MAC was spreading. I wonder if I had known about airway clearance much sooner I may have been in a better place now!

Bugger 🥴

Inhaled amikacin sounds terrible. From what I’ve read that comes with lots of side effects too. Thanks for the update tho, good to know research is ongoing.

Many treatments are terrible- chemo, antibiotics, even the current very painful PT on my shoulder. That doesn't mean you avoid it if it is vital to healing.