Hello - As someone who was seen and treated by a less than communicative pulmonologist first, and now have found an excellent team, I can tell you there are probably more pulmonologists who don't know much about MAC than there are skilled in treating it. To have him dismiss you like he did, I would guess he is in the don't know group. Not surprising because MAC is considered a rare disease, and is far less common than the asthma/COPD/emphysema trilogy that are the most common diagnoses.

So, the question becomes what to do next - following once a year is not a good recipe for lung health in my opinion. You need to know if you have another underlying lung condition like bronchiectasis, Cystic Fibrosis, COPD or chronic asthma. If so, you need proper treatment for that - airway relaxing meds, an airway clearance routine, and regular monitoring. You need a plan for dealing with breathing difficulties. You need a plan for when to contact the doc & how your MAC will be monitored. Most of all you need good and open communication with the treating doc or someone in their practice.

So, do you have any other lung conditions or a history of frequent pneumonia? Do you have access to a large group pulmonology practice or teaching hospital where you can look for a new doc?
Sue

This is nothing to take lightly. My first pulmonologist did the very same thing - I was sent to an Infectious disease specialist at Cedars here on Los Angeles. I'm now on the three antibiotics & just started on Arikares. Long and tough fight but yes you need to be more pro-active as this can get out of control.

Hi!
YES! Definitely seek a new pulmonologist and do your homework! Sue is right, this is a rare disease and most doctors know VERY little about it. Excellent advice to see if there is a teaching hospital near you. The experts are at National Jewish Hospital and you may can find some educational resources on their website. Also look up NTM info and aboutntm.com. What your doc did not tell you is that this is a life long battle and not everyone is the same degree of sick, experience the same symptoms or are effected by treatment the same. I would strongly advise you to research the FACTS. Also, you should have a lung function test and CT scan to help in your evaluation - gold standard for someone with MAC.
Hope this helps!