Diagnoses

@cpolich no. My doc’s approach is that right now the treatment isn’t worth the risk of taking the meds - they didn’t see anything of concern on the CT.

@smc17 I see my regular ID and pulmonary doctor in Nebraska but I went to Mayo in MN for a second opinion. I loved my Mayo doctors but it’s too far to drive. My doctors in NE are listed as an NTM center as well. I’m sorry you’ve been through so much. It’s a tough disease that’s for sure. I’m used to treating a condition/disease and then moving on with my life. I’m coming to the realization that this is something that I’m going to live with. I hope and pray that things start looking up for you. Do you have BE and MAC too?

@cpolich
I too live in NE....my doctors are at Nebraska Med Center Omaha. What doctors do you use? If you don't mind me asking

@catfish3012 I’m currently seeing Dr Trevor Van Schooneveld and Richard Starlin in there NTM Clinic at NE Med. My pulmonologist is Ruxana Sadikot. They do a good job explaining things and answering questions. Who do you see?

@tropauer glad to hear that! I was impressed that your CT didn’t show any BE, nodular disease or cavities. That’s all good news! Hope you feel better soon!

@cpolich well I sure hope that stands - it seems a bit improbable.

@tropauer
Welcome to Mayo Connect. I hope you'll find it as supportive as I have. We all seem to be slightly different but enough alike to share helpful ideas and support. I have BE (bronchiectasis) but so far not NTM (MAC) so I hope others will chime in to help answer your questions especially about the antibiotic regime for MAC.

Most experts think that these lung conditions, NTM infections and bronchiectasis, in otherwise healthy older adults don’t come from just one clear cause. Instead, they likely develop from a mix of factors, including a slight genetic tendency, airways that don’t clear mucus as well as they should, things in the environment you’re exposed to over time. In other words, it’s usually a combination of small issues adding up, and not one single reason.

@tropauer there are people on this site with positive MAC cultures with mild symptoms who have not required treatment.

@cpolich Interesting. I would say my symptoms are now mild, but about 7 months ago I had chronic coughing with a lot of phlegm (didn't always clear easily). Even w/ mild symptoms, i wouldn't want to risk it developing further into something else. That said, I know I'm at risk to get it again. Doing what I can around the house, etc. Going to also look at making sure my GERD is controlled, in case I'm aspirating etc.

@tropauer Have you had a CT scan to check for bronchiectasis? That often leads to susceptibility to all of the bugs you mentioned.
Also, do you have a knowledgeable pulmonologist on your medical team? In some cases MAC can be managed without the antibiotics, especially if the infectious "load" is low.
Did the ID doc tell you how severe the infection is, where it is in your lungs, or whether you have nodules or cavities?