Welcome Jennifer, I also am a newcomer to this group...you have found a forum of caring sharing individuals with knowledge you may not receive from doctors. The experience that only a patient has, personal. Irene has very good questions and suggestions for you...follow up on those. As for your question about “pain”, here is my contribution. My Mac diagnosed this past October, presented with no other symptoms but pain. It was pain that threw me to the floor early one morning back in July 2020, disguised as what I believed was “angina” but my doctor (cardiologist) sent me to the emergency room for a suspect PE (pulmonary embolism). It was with the CAT scan during that visit that they realized my lungs were involved. The “pain” has never gone away, only changes in intensity and duration. I am so sensitive and insightful that I knew exactly where the pains were localizing...lower left lobe, upper right. My pulmonary doctor (as the ER doc) treated me for pneumonia with antibiotics and inhalers...unsuccessfully. Pain persisted, so I do what I do best...insisted. I insisted that they repeat the scan (before the scheduled 3 months), nodules and irregularity still appeared. Pain lived with me...and I was wearing out. As we have learned the lungs rest in the cavity in a posterior location (very layman language here) so a back sleeper like myself is miserable...and sleeps interrupted maybe 2 hours at a time. It was that misery and constant pain that pushed me to “insist” something be done. My Pulmonary doctor had cardiac workup done (again) because the pain was so intense and persistent, maybe pleurisy or pericarditis....I fought back with NO, this is from whatever is affecting my breathing and my lungs(I could not go up even a few stairs without being breathless). Pain continued. The bronchoscopy delivered enough villainous muck for a culture that confirmed MAC. Pain continued...sleepless nights added up. I was changed from an inhaler (with steroids to one without) to another....some relief, mind you minimal, but some. An ID (infectious disease) doctor joined my team, he is wonderful also, all my doctors communicate with me routinely, calling and writing, follow ups in clinic (important). I am now on the cocktail of Azithromycin, Ethambutol & Rifampin along with an inhaler. I do not nebulize like most others. Pain is lessening...I take that as a good sign...maybe meds are killing off this nasty bacterium.

Remember this, PAIN is a red flag. It is not to be ignored, it should be your guard that stands protectively in place that releases action...action that makes change. Honor your pain...be grateful for it...it will help you make them help you.