← Return to New to MAC and considering treatments options: What did you do?

Discussion
Comment receiving replies
@extracare808

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


Replies to "Unfortunately, most community ID and pulmonologists know very little about MAC. I went to multiple doctors..."

Can you list the specific meds. Thank you.