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My MAC and bronchiectasis treatment

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

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@marthachs

@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!

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Replies to "@sueinmn I’m at 12 months now on daily antibiotics (I had a small cavity or 2)...."

@marthachs From all that I have read, one should take their probiotics three hours apart from their antibiotic. The antibiotic will kill the probiotic for the most part. As far as pizza and chocolate causing you to cough; many of us have food triggers with this disease. When I had an active mac infection; most sugary food and gluten foods made me cough constantly. Pizza has a higher than usual amount of gluten in it. Many people in this group have stated the same; sugar & gluten. I did an elimination diet for years to figure out all of my food triggers. Besides sugar and gluten, it was food dyes as well. I could not drink Mountain Dew or eat M&M's due to the yellow and blue dye. Now that my infection has cleared up, I am able to tolerate sugar and gluten much better. I still avoid food dyes whenever possible. I stick to a whole foods diet. These are just 'tid-bits' from someone who has been there.