Unfortunately, most community ID and pulmonologists know very little about MAC. I went to multiple doctors (including at Mayo) who gave me the same line about 'the treatment is worse than the disease'. This is pure garbage. I have been on the meds for almost one year and have had zero side effects.

Secondly, the BEST thing you can do is get to a Center of Excellence like National Jewish Health or UT Tyler. MAC/NTM is their bread and butter. They have the top experts in the field. Your current pulmo sounds both arrogant and ignorant. I would fire him, STAT. Furthermore, you can't monitor this condition via a simple x-ray, they don't have high enough resolution. You need to get CTs. Also, the newest guidelines were published in 2020, and they do not recommend waiting until you 'get sick'. I started on the meds despite having no symptoms. FYI, only 13% of physicians are actually following treatment guidelines. Pretty appalling.

Until you get to NJH/Tyler, you can check out the NJH youtube channel as well as the NTMir channel. Lot of good info there.

Jump to this post