Good morning Suzanne,

I’m so sorry you’re not feeling well. I strongly suggest you reach out to the researchers at the Oregon Health and Science University. They are the principle investigators of the MAC2v3study.org. This is the study where you are randomized into a group with either two drugs or the standard three. You can be part of this study even if you aren’t able to go to a study center. Over 450 people have participated and they’re looking for another 20 or so to complete the study.

There are international guidelines for MAC treatment regarding dosages. Your doctor should be able to reach out to National Jewish Health with questions. If for some reason he or she is unclear, you might want think about going there or to Mayo to see doctors who specialize in the treatment of NTM disease.

Are you doing airway clearance? Sometimes when some of our cultures are positive and some negative it could indicate a light bacteria load. And with enough airway clearance and exercise, we might be able to eradicate the bacteria without antibiotics. But of course you would need to be watched very closely to make sure your disease does not progress. Have you met with a respiratory therapist?

Please let me know if you need any more information, Linda Esposito