Hello Miriam, Welcome to Mayo Connect. I see that you have been a member for a few days, even though this is your first post. When I was first diagnosed, it was by a pulmonologist who didn't have the best skills in explaining. He basically said "This is what you have, you're intelligent - Google it". He handed me a handful of prescriptions and an Acapella device it its wrapper and left the room. At the time I was very ill with pneumonia, pseudomonas & MAC, so treatment was mandatory and immediate. I was weak, fatigued, coughing non-stop.

Wow, everything I read was dire and scary - I didn't know what to do! Then I found this forum - the MAC & Bronchiectasis group - and learned that when properly managed, this is a condition I can live with. I learned about airway clearance, nebulizing. I learned that mycobacteria is everywhere, that everyone has their own comfort level in dealing with it, and that I needed to develop my own routine to stay healthy.

You are taking all the right steps at this point - getting a clear picture of your current status and the exact infection, consulting both an ID doc and a pulmonologist. If you diagnosis is any Mycobacteria other than M. abscessus, a few weeks of waiting is not necessarily bad. MAC is known as an infection that is "slow to grow and slow to go".

Does your lung doctor have you doing any kind of airway clearance to help move the mucus out of your lungs? Or any inhalers?

Good luck as you move forward on this journey - feel free to come back here and ask questions as you read and learn.
Sue

Miriam, I live in Wilmington, NC and my doctor referred me to UNC-CH. I am going for my 2nd visit on 12/8. The 1st one was in June. At this poi t the pulmo that I am seeing in CH is but gathering info. However she did start me on airway clearance as the inhalers caused chest tightness.
I would like to know about your treatment at Duke. Do they have a Pulmonary Specialty Clinic? A previous Dr had mentioned Duke to me. I want to go to the best. Would like to discuss with you after your appointment. Duke is about 3o mins closer to me..

Miriam,
Attached is the guidelines of the America Thoracic Society and others on diagnostic criteria for whether or not to treat MAC patients with the Big 3. Just because your sputum tests positive for MAC does not mean you need to get on the Big 3. What's important to look at also is the colony count. Make sure the lab you use does colony counts because if the count is low enough, your doctor probably won't put you on the antibiotics.
lora jo