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New MAC treatment options??

MAC & Bronchiectasis | Last Active: 5 days ago | Replies (9)

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@sueinmn

@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?

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Replies to "@susiespencer When you ask about treatment for your infection, have you had a recent CT scan..."

Hi Sue- Read that yesterday and again just now glanced at it in reviewing to see if there is anything new on the thread(s). I can't help but zero in on the "living dangerously". Are you referring to no nebulizing or other precautions also. That statement has me curious since reading your much earlier posts in the last year and a half.
Hoping my CScan and sputum test shows improvement this month during my search for a new pulmonologist.
Airway clearance methods are so important for us as is all we can do to help clear the mucus up and out....which also helps with sleeping better at night also for me.
You must be so looking forward to your up coming trip.
Barbara

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!

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?