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My MAC and bronchiectasis treatment

MAC & Bronchiectasis | Last Active: Feb 19, 2020 | Replies (48)

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@sueinmn

@marthachs I'm so glad to hear you are tolerating the Big 3 well - I too knew I was better with them than without, but after a long time they began to really drag me down. Over one month off and my digestive issues are finally improving, my energy is getting better, but still little to no appetite.
Wondering if you can tell us how long you have been taking the antibiotics, and when/if your sputum samples stopped showing MAC? Also, do you do any other treatments, either to counteract the antibiotics, like probiotics, or for your lungs, like saline, inhaler, airway clearance? Sue

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Replies to "@marthachs I'm so glad to hear you are tolerating the Big 3 well - I too..."

@sueinmn I’m at 12 months now on daily antibiotics (I had a small cavity or 2). I had to drop azithromycin at about month 7 because it was damaging my hearing and substituted ciprofloxacin at that point. My cough has always been dry, so I had no treatment until I coughed up some blood and had bronchoscopy to get samples for culture. So, no idea about current status or when/if I achieved culture negative status. I just had my first follow up CT scan which looks somewhat improved, but not perfect by any means. I see the id doc in a couple of weeks to decide what to do next.
I take one Florastor capsule with the ciprofloxacin in the morning, a multivitamin, calcium tab, and one Culturelle capsule mid-day, and the rest of the antibiotics on an empty stomach at bedtime. I have tried the Aerobika but it doesn’t seem to change anything, so I don’t really do it. Never needed an inhaler and haven’t tried the saline. Think I might want to try the saline at this point after reading so much about it here, and especially as I think about coming off antibiotics.
Aggressively managing “silent reflux” has been key for me I think, and I boil all my drinking water now. If I eat chocolate or pizza, especially late in the day, or eat too close to bed time, my cough comes right back! Stress will definitely do it too. And I never lie down with my head and chest less than 30 degrees...unless I’m getting a CT scan!