Just diagnosed with MAC with a cavitary lesion. Terrified.

Understand! Many patients here shared the same feeling at the beginning. And many of us have cavities too. There is a chance that it can be managed via surgery, or antibiotics. Some people's cavity shrank after a few months' antibiotics treatment, it is said Arikayce also helps a lot with caviity close up. Should start antibiotics asap. Buy potent probiotics and start!

@justaussie MAC is scary at first ! Lots of unfamiliar terms, dire warnings about side effects of the meds, and as you are learning it is difficult to find good docs familiar with this rare infection.
Once infection has progressed to the cavitary stage it is important to begin treatment as soon as possible since lung tissue is being destroyed. Your pulmonologist can always modify the regimen when you see them.
Have you been prescribed the meds 3x per week? What you need as soon as you can are baseline eye and hearing exams. And you need to give up your wine and have your liver enzymes monitored. This is not fun,but it doesn't have to be terrifying. We're here to help you get through it.

I also have MAC with multiple cavities and have been taking the 3 antibiotics for about 2 months. I also started Arikayce (Inhaled Amikacin) a month ago. The first few weeks were tough but it has gotten better. I think it is very important to include a probiotic and don't assume that you won't be able to handle the antibiotics, there are many who do fine on them. This support group is very helpful too. There is a lot of information and an opportunity to ask questions and share with real people who are also dealing with this disease and understand what you are going through. Best wishes...be strong!!!

I've lived with my similar sized cavity, bx, Mac, aspergillus for over 6 years now, starting at age 60. Big 3 for 40 months. Amikacin, Arikayce, etc. It is manageable. Support is key. Good Doctors and facilities are key. And I might add good insurance.

Take heart, dear one. This is scary, scary stuff...but as others have said, it's manageable. I normally don't post but I wanted you to know that I was diagnosed in 2010, have bronchiectasis, cavities, pseudomonas, and have had more than one scary episode of hemoptysis. After trying and failing the 3-drug regimen twice, I've managed with airway clearance, exercise, and a lot of prayer to live with this disease and condition. I'll soon be 72. There is much life to be lived once we're passed the initial shock. Let this group love and support you as you begin your journey. They are wise folks with great experiences and suggestions to share. My very best to you.

Many here have gone through a similar situation. I suggest you immediately talk to your Dr about starting you on a nebulizer with 7% saline solution - airway clearance does wonders with really no side effects!
Good luck

Thank you for your message. I've been prescribed daily medications due to the cavitary lesion I have. I know have to have the eye and hearing tests. I just want to run away to be honest. Doesn't sound like there's much to look forward to. I'm terrified of the big side effects. I've got the drugs to start - but too scared to take them especially not having a doctor I like/feel actually cares about what happens to me. Also - the doctor and I discussed whether I should stop drinking for 2 weeks before starting the meds - so thinking maybe I should do that, but keep putting it off - as once I start - doesn't seem like a good idea to stop unless dangerous side effects happen or can't tolerate. What I don't understand is how is it that something like this hasn't had more research over the years to find a better treatment option. Sounds like this has been the standard for a long time. I wonder if it's because so few cases compared to diseases like cancer that they don't put as much money into research. Very strange - when I also read that there has been a significant up tick in cases in recent years. Hoping against hope that they come up with a new treatment in the coming years that is much better than current option. Also - I wonder why more people don't have surgery if the treatment is not tolerable. It seems from what I've read - people that have surgery seem to recover/stay MAC free for much longer. Thanks for your kind words. Here's hoping for better days ahead for all. Any suggestions on how to find a MAC expert pulmonologist in the Washington DC area most welcome. I have an appointment with a young pulmonologist in September - earliest I could get - but feel I'd really like someone who has expertise with MAC.

First, we all want to "run away" from scary diagnoses at first - whether MAC, diabetes, cancer,
Alzheimer's - it's human nature to protest "This can't be real."

Treatment is not easy, but it is definitely tolerable. A piece of cake compared to having part of your lung removed and recovering from major chest surgery. I wish there were far fewer "horror stories" floating around - many of us have found a path to staying healthy by continuing airway clearance after we finish the antibiotics.

As for waiting to start, if the ID doctor feels it is serious enough for a 7 day a week regimen, that's really not a good idea - the cavity will continue to grow, which means more lung tissue is being destroyed, and when it does heal you will be left with more scar tissue.

Don't discount your "young pulmonologist" - as a recent grad, they are more likely to research things and ask questions than docs who have years of experience. Even after you have seen them, you can always wait for a referral to one of the experts.

There is a great deal of research currently going on about Bronchiectasis and MAC - it was slow to start because of the limited number of people affected, but new treatments are coming. The problem is, you are sick now and cannot wait, so need to take the best available path at this moment.

Will you actually stop your wine this weekend, and make audiology and eye appointments?

I was diagnosed with Mac and Bronchiectasis in January 2024 after a year of nonstop, coughing and unmanageable pneumonia. I too was a heavy drinker I was able to stop drinking with the help of a 12 step program lots and lots of support What a difference, No alcohol made in not only my respiratory health, but physically and emotionally all over. I was feeling so desperate that I would be spending the rest of my life sick I feel like a new person and I am able to manage my broncheictasis so much better now. Do not give up hope

It is quite scary being diagnosed, I am young and have a 9.2cm cavity In my lung. Been on ethambutol, clarithromycin and rifampicin for around 3 months now and haven't had any side effects apart from the orange tears etc it can cause... Here if you have any questions to ask as I know it's very scary being told you have a hole in your lung