Anyone have cavitary MAC?

I will look up Nevelers Dry Salt Inhaler. I've never heard of this and have just read about it twice. Is there anything else you can tell me about this that you feel would be helpful. Thank you so much!

I sourced very good Himalayan salt for the inhaler. I use it throughout the day. I was told by the doctor that the discovery of "salt air" was because children with cystic fibrosis who lived closed to the ocean had a better prognosis. So, I felt that breathing "dry, salt air" was better for my lungs than cold, moist air from the nebulizer. As I wrote, it is purely anecdotal but, for me, it paid off. Read on Chinese Medicine and the lungs, also.

When I was first diagnosed, I had a 1.1 CM cavity. My first two doctors recommended not to treat. Then I went to National Jewish Health for a third opinion, and they recommended treatment. By that point, my cavity had grown to 2.2 CM. Per NJH recommendation, I started airway clearance, but had to postpone Big 3 treatment because of the pandemic. Fortunately, my cavity remained stable (somewhat shrinking). I believe this was a function of my saline/nebbing routine. Also, my bacterial colony count dropped dramatically.

Since going on the Big 3 and Arikayce, my cavity has collapsed and turned opaque. It is now a calcified clump of scar tissue, which is a good thing as there is no chance of it turning back into a cavity . The clump is down to 1.1 CM and shrinking and I have tested negative for several months in a row (since adding Arikayce to the Big 3). The treatment has also been virtually side effect free for me, other than intermittent hoarseness.

I'm curious about what treatments those are and what they involve. Happy to hear more if you'd like to share. Thanks!

You are so fortunate to have a cavity that collapsed. Mine is 1.2 and I am waiting for a call on Tuesday 1-3-23 from a nurse at NJH to see if I can get an appointment. I have the Big 3 ready to start but wanted to see what she says first. Did they start you on Arikayce right away along with the Big 3? What times of day worked for you because I hear so many different times that work for people.
I am going to try and stay ahead of all the symptoms if possible (positive thinking). LOL
I really appreciate any info.

Sorry, I need to ask as I am new to MAC: what does it mean that a cavity collapsed? When a lung collapses, it’s bad, but when cavity collapses, it’s good?

I have a cavity in my lung, 5.2 cm. I haven't seen the infectious disease doctor yet, I see them on Tuesday. Do you have any idea what they will do for something that big? I am terrified. It was actually a mass there and then they put me on antibiotics because I initially tested positive for klebsiella pneumonia, so they put me on antibiotics. Well the antibiotics must have cleared up some of that Mac infection and left a big hole where that mass was. Also it cleared up some of the nodules around the mass but then a bunch more formed in the middle of my lung and on the very bottom which I don't really understand a bunch of nodules could form and two and a half months?! From one CT to another. Any information you could give could be helpful! I also wanted to add I really don't have any symptoms at all except for a little bit of shortness of breath. Thank you! so much

Hi all, I had been on the antibiotics, the big three for years then amikacin AND clofazimine and still I continued to be positive. For me finding the cavity which was hidden behind my clavicle and having surgery was the only thing that got me negative. I had been rather sick as well for an extended time. Symptoms maybe a deciding factor with your physician...I really don't know. Keep searching, studying and listening to your gut and physician for the best treatment decision for you. Best wishes!

Hi all,
it has now been 12 months on the big three. My cavity shrunk & changed appearance in a good way although not collapsed. My NTM specialist said that it may never collapse and suggested I stay on meds for 3 more months.

Do folks think that the length of time matters once you get past a year? I am following doc orders, although just wondering others' thoughts or experiences on this. Not sure why 3 more months. Maybe for reinfection?

I have alot of fatigue related to the medication and am not really thrilled about 3 more months although I know I am lucky so far with mild side effects.

I have a 3.2 CM cavity and my infectious disease doctor said I'll be on meds for 18 to 24 months! I guess every doctor is different and why they do what they do. I hope my cavity shrinks or goes away!