@joanng You asked "Wouldn’t drs normally text for this without being asked especially being a pulmonologist? Or should I start being a stronger advocate for myself?" The short answer is "probably not."
If you spend some time reading the various discussions in this group, you will see that not only do doctors not automatically test for MAC, even many pulmonologists have little experience treating it. Most all well-versed in treating asthma & COPD, but less so with bronchiectasis and the related treatments and infections.
Like many others in this group, I too had not heard of MAC or bronchiectasis until it was diagnosed, when I had severe pneumonia & what appeared to be "an intractable asthma attack for over 4 months" that were not responding to treatment. After a lung x-ray, a sharp-eyed radiologist told my primary what he suspected and that got the ball rolling on treatment.
That is why we encourage you to:
Educate yourself.
Here is one place to start: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/symptoms-diagnosis
Advocate for yourself.
Armed with the knowledge you gain, develop a list of questions to ask about your diagnosis and treatment. Many of us are treated in practices where there is a place to ask our questions of the physician on-line, so we can get answers between appointments, or at least s/he will know our concerns when we next meet. I found the doctor's nurse to be my best source of information and support.
Seek a practitioner knowledgeable about your condition.
I was referred to mine specifically because my primary knew he had a number of bronchiectasis patients, but I eventually switched to someone else whose style of practice is more compatible with a curious and proactive patient.
Let us know what you learn when you talk to your doctor.
Sue
@joanng, I echo what @sueinmn @irene5 and other members have said. There is much wealth of knowledge in the discussions here in the MAC group on Mayo Clinic Connect too. Here are a couple of good places to start:
- NEWCOMERS .. ONE EXPLANATION I FOUND ON MAC/MAI TO HELP YOU https://connect.mayoclinic.org/discussion/newcomers-one-explanation-i-found-on-macmai-to-help-you/
- (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/