Sue, when I was first diagnosed and before I found a specialty center for MAC and bronchiectasis, I could not imagine myself on the 3 drug regimen and for so long, when statistics for the cure rate were not very encouraging.

I was deemed a good candidate for a clinical trial, since I was treatment naive, and I enrolled in the 6 month clinical trial with Clofazimine only. I felt that, even if the results for me were not promising, I would at least be contributing in some small way and perhaps help researchers toward their goal of more effective treatments.

I did feel better physically, gained weight, and did well. Numbers declined but then came up again when the dose was halved for the last 2 months. I was grateful for and respectful of my doctor’s decision afterwards to enroll me in the 2 vs 3 drug open trial and am now on Azithromycin and Ethambutol. No ill effects yet, and I know that these drugs work more slowly than the Clofazimine. Mentally, I have accepted that I may not become sputum negative after 6 months, at which time my doctor will add the inhaled Amikacin. She said that it is a game changer. Many patients who did not convert to sputum negative on the Big Three are able to do so once adding Amikacin. This might be something for some of you to consider. Since is lioosomal, inhaled, and targets the lungs directly, it is very effective and helps sidestep some of the systemic effects.

I believe that finding a doctor whom you trust and who communicates with you is so important.

Yes, the drugs have side effects. You have to weigh how much better you feel physically as your numbers decline against the potential drug side effects. My doctor told me that they have new drugs in the pipeline. As you said, Sue, lung hygiene, airway clearance, exercise, rest, and a healthy diet will all help you fight your battle. The stronger you are, the better you feel, and it also improves your outlook and hope.

I have also read about new patient directed therapies that use the patient’s own immune system. There is hope. You might also have read about herbs, spices, and oils that attack or break down biofilms.

If you can avoid unhealthy exposures and maintain your overall health, you greatly increase your body’s capacity to battle this bug and others. A forum like this is so indescribably helpful because the disease is so different for each of us. Being able to communicate and ask questions that we may not always have the chance to ask our doctors is extremely beneficial.

If you are up to trying a new therapy and are offered the opportunity, consider taking it, if you are able to tolerate it. You may be able to greatly improve your quality of life and enjoy the things that bring you happiness. That is worth a lot.