Hi Darlene: I am in the Clinical Trial at NIH but have chosen not to get treated by them. I get treated by an infectious disease Dr in Texas. I signed up for the trial with hopes of possibly helping other people with MAC. I don’t think you will be sorry if you decide to go. It gives you one more option from very knowledgeable NTM Dr’s.
It sounds like the Dr’s that you have been going to are not that informed about NTM disease if they told you that you would need a lung transplant. People with NTM disease are not candidates for transplants as the drugs they give you afterwards to suppress your immune system would just help the MAC to attack the newly transplanted lung. Once you have the MAC bacteria in your lungs it is always there. It might go into remission, but it’s still there.
It’s really very difficult to tell another MAC’er about my treatment as each and every one of us has a different degree of disease and what drugs we are resistant to. The only thing I can suggest is you read over the newly published information that the American Lung Assoc published. Hopefully that will help you.