Hello @chinasmom & welcome to the MAC forum,

If my doctor told me I had NTM or MAC, and I was having symptoms, I would:
first, ask to SEE the CT Scan and TALK with the pulmonary doc as to how they made that diagnosis, and how disbursed the disease was, and
second, require a bronchoscopy of my lungs for evidence. They can then tell where the NTM or MAC is definitely located, how active it is, and what type of MAC or NTM it is -- slow growing, fast growing, variation, etc. A sputum culture may show NTM or MAC, but is only as good as how much sputum there is and where in your lungs it has come from.

This is a very good site for questions and support. Best wishes
Paula

Chinasmom,,,you asked if sputum would show NTM....mine did not.....4 months later when I had a bronchoscopy....this past July....the washing from it showed it. At the NTM work shop I was fortunate to be able to attend in Denver at National Jewish yesterday....they said that in order for NTM to show up on a mucus smear...initially...there had to be an extremely high concentration of NTM organisms....However in a "special lab"....a culture can be prepared to see if over 6 weeks NTM grows....patients really have to clarify with labs how they manage theircultures....we were told at the workshop
I know I will be asking lots of questions of the one where I live .terrid

Terri D
Exactly the same here. I had 2 sputum cultures done from just coughing, nothing showed. Then in July, 7 months after a cavity showed on my CT scan, I had a bronchoscopy and the wash showed MAC in a biopsy. They were diagnosing my cavity as post pneumonia, but it is indeed MAC in my upper right lung. Then in August, it actually grew on a culture I had done at Mayo, just coughing. It must have been growing.

Good info on having to keep your lungs clear after and if the MAC is in remission or just in general when you have MAC. I have post nasal drip and constant clearing away of pflegm, which I know can have bacteria in it. I will be going back to Mayo 10/6, a CT scan and sputum culture will show if the MAC is clearing. I'll be talking to my doc about how to clear away this pflegm thing which will need to be gone to keep MAC at bay. Right now it's a lot of clearing of a junk that feels like it's in my throat and bronchial tubes. It's very irritating but I do hear older friends doing the same thing. I think we might get thicker mucous and looser throats, or it might be digestion related. I've NEVER gotten a good answer. I took PPIs for "Silent reflux" for months, they did nothing to help.

Doing OK on the big 3. My MAC is only susceptible to Clarithromycin (Azithromycin ) and moderate to Ethambutol and Rifamptin but I understand the latter 2 help the MAC stay susceptible. Not sure how this all works, but a bit unsettling that my MAC won't go away with any drug but one! There's a chance I could have surgery after 6 months on drugs.

Anyone out there have cavitary MAC and take drugs for 6 months then have surgery?

Some new and innovative drugs would be great. I wish this disease would get some attention. Maybe someone famous needs to get it! Theres a few famous people out there with nagging coughs! Anyone notice?

Back to my vacation in Boston. Take care all.

Thanks for the good info. Waiting for the link.

KayS

@kaystrand - you are funny! I am chuckling at your comment yesterday (9/18/2016) that "Theres a few famous people out there with nagging coughs! Anyone notice?" You've still got a good sense of humor!! I'm always on the lookout for people with nagging coughs not connected to allergies or colds.
Paula

Well I was told that my nagging cough could be caused by acid reflux<br><br>