New MAC treatment options??

@susiespencer When you ask about treatment for your infection, have you had a recent CT scan of your lungs? Some people are are to "push back" the infection, for lack of a better term using rigorous, twice a day airway clearance with 7% saline solution, and avoid antibiotics.

When I was treated for MAC, after over 18 months, including six months of daily meds, I like you was very sick and quite depressed from the regimen. But, I still had the infection. At that point, 7% saline was becoming more commonly used, so I stopped antibiotics and increased my airway clearance routine with 7% saline to 3X/day - that was still too much, so backed off to twice a day and I gradually got better - regained energy, cough improved and I gained back some lost weight. My lungs had improved even without antibiotics - shrunken nodules and less cough, no MAC growing in the AFB test. After a year and a half, I felt quite well, but still short of breath, so with my pulmonologist began strategies to improve my asthma.

Now 5 years and 4 months later, my bronchiectasis and asthma are stable, I have no new nodules, just scars from a long bout, and I have been "living dangerously" for 4 months, with the doctor's approval - asthma meds, exercise, daily airway clearance and no nebs unless I get a respiratory bug.

Have you been taught airway clearance techniques, and do you use saline to help control the infection?

@susiespencer When you ask about treatment for your infection, have you had a recent CT scan of your lungs? Some people are are to "push back" the infection, for lack of a better term using rigorous, twice a day airway clearance with 7% saline solution, and avoid antibiotics.

When I was treated for MAC, after over 18 months, including six months of daily meds, I like you was very sick and quite depressed from the regimen. But, I still had the infection. At that point, 7% saline was becoming more commonly used, so I stopped antibiotics and increased my airway clearance routine with 7% saline to 3X/day - that was still too much, so backed off to twice a day and I gradually got better - regained energy, cough improved and I gained back some lost weight. My lungs had improved even without antibiotics - shrunken nodules and less cough, no MAC growing in the AFB test. After a year and a half, I felt quite well, but still short of breath, so with my pulmonologist began strategies to improve my asthma.

Now 5 years and 4 months later, my bronchiectasis and asthma are stable, I have no new nodules, just scars from a long bout, and I have been "living dangerously" for 4 months, with the doctor's approval - asthma meds, exercise, daily airway clearance and no nebs unless I get a respiratory bug.

Have you been taught airway clearance techniques, and do you use saline to help control the infection?

Hi Sue,

I have a question regarding, "no nebs." Do you mean no albuterol or levalbuterol? Do you use only 7% saline
for daily airway clearance?

Thank you!

I mean, literally, NO nebs including saline at this point unless I sense an impending problem. I have no problem doing airway clearance after my daily (generic) Symbicort inhaler plus a quick walk or other exercise. I also use 600 mg Mucinex twice a day to keep my mucus thin.

Recently, we had very high humidity & some grass fires so I nebbed saline for a couple days as a precaution. I will also be nebbing 2-3 times a week for the next couple weeks because the mesquite and pine pollen are causing me to produce more mucus. When I return to MN in May, I will also neb because of pine pollen there.

@blm1007blm1007 Barbara - the above is what I mean by "living dangerously" - I am trying out the no neb/limited neb protocol. So far, so good - I have stayed healthy, but will shift back to nebs during these allergy times as a precaution.

@susiespencer When you ask about treatment for your infection, have you had a recent CT scan of your lungs? Some people are are to "push back" the infection, for lack of a better term using rigorous, twice a day airway clearance with 7% saline solution, and avoid antibiotics.

When I was treated for MAC, after over 18 months, including six months of daily meds, I like you was very sick and quite depressed from the regimen. But, I still had the infection. At that point, 7% saline was becoming more commonly used, so I stopped antibiotics and increased my airway clearance routine with 7% saline to 3X/day - that was still too much, so backed off to twice a day and I gradually got better - regained energy, cough improved and I gained back some lost weight. My lungs had improved even without antibiotics - shrunken nodules and less cough, no MAC growing in the AFB test. After a year and a half, I felt quite well, but still short of breath, so with my pulmonologist began strategies to improve my asthma.

Now 5 years and 4 months later, my bronchiectasis and asthma are stable, I have no new nodules, just scars from a long bout, and I have been "living dangerously" for 4 months, with the doctor's approval - asthma meds, exercise, daily airway clearance and no nebs unless I get a respiratory bug.

Have you been taught airway clearance techniques, and do you use saline to help control the infection?

Just curious Sue. Did you mean you were only on the BIG 3 antibiotics for 6 months after MAC was cleared? I have been on the treatment for 3 months now, plus Arikayce. I started out with no side effects but in the last 4 weeks have been having almost daily , terrible headaches, some migraines which are debilitating to me. While I have had a history of occasional migraines, nothing like this. Has anyone had chronic bad headaches while on the antibiotics?