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Posts (12)

Thu, Mar 19 1:29pm · Need to order medical book on MAC TB treatment and side effects in MAC & Bronchiectasis

@cmcclure I just was doing some internet research and ran across a book that might interest you, or others, although it is expensive. Nontuberculous Mycobacterial Disease: A Comprehensive Approach to Diagnosis and Management, edited by David E. Griffith from Tyler, TX The book is available on Amazon and other internet sites. I believe the copyright is 2019. Hope it helps! Martha

Tue, Mar 10 11:03am · New type mouthpiece for Albuterol in MAC & Bronchiectasis

@auntnanny I am just a few weeks past finishing 13 months on 3 antibiotics for MAC and am now concentrating on treating the residual bronchiectasis and trying not to have the MAC rear its ugly head again. My pulmonologist has prescribed nebulizer treatments with albuterol and 3% saline followed by using the flutter device twice a day. So, I'm debating whch nebulizer to get. Did you ever find out anything else about the InnoSpire Go? Any other advice anyone? Thanks! Martha

Sat, Feb 1 8:28am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

@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!

Sat, Feb 1 8:07am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

@tinaesims I’m glad to hear you’re doing so well! I do hope you’re getting regular checks of your hearing. I already had some tinnitus and some mild high frequency hearing loss when I started the Big 3 daily (I guess from my age, 69, and lots of music exposure and loud kids over the years). I had follow up testing every 3 months, and at about 6 to 7 months in, they detected a small loss of hearing and we stopped the azithromycin. The ID doc substituted ciprofloxacin. My hearing has been stable since then, but my understanding is that once those cells are damaged, you don’t usually get that function back. The most sensitive test they did on my ears was called DPOAE (Distortion Product Otoacoustic Emissions testing) and they said it would be the earliest to pick up new damage.

Fri, Jan 31 5:54am · My MAC and bronchiectasis treatment in MAC & Bronchiectasis

@pal131 , I’m so sorry you are needing to join the MAC club, but also, so glad to have you! In my case, by the time I started daily treatment with the “big three” I had a lot of fatigue and weight loss from the disease. After a month on the meds, my energy and appetite began to return. I've had other side effects (all things I can manage) but I can definitely tell that I’m better for taking the drugs. Now I’m worried about what will happen when I stop them in a month or so!

Tue, Jan 21 9:16am · Dentist in MAC & Bronchiectasis

My hygienist now uses an ultrasonic scaler instead of the older hand held scraper kind of tools when she cleans our teeth, and she really thinks it’s better for your teeth. It means I’m breathing in the mist the whole time she’s working. It’s cool rather than steamy, but I’m wondering if I’m being exposed to a big dose of mycobacteria anyway. I’m (hopefully) just about to finish my course of the big three and don’t want to have to start over! Anyone have any thoughts or experience that might help?


I was first diagnosed with “silent reflux” because of a chronic cough and throat clearing. Started treatment with Pepcid, then was put on big doses of PPI's. Cough never went completely, so finally saw pulmonologist and discovered MAC. I never had heartburn until I tried to come off the PPI's. When you stop them, you get a rebound of increased acid production. It took a really long time (months) of extremely gradual tapering to get off them and I don’t think I’ll ever take them again! They shut down the acid, but you still have the reflux. If acid keeps the MAC down, maybe that's even counterproductive! We need more research for sure! Now I manage the reflux with sleeping position, diet, and going to bed with an empty stomach. There’s some new procedure in Europe for reflux that works with a nerve stimulator to increase the tone in the esophageal valves. That would be a great option to have!

Sep 13, 2019 · Extreme fatigue with MAC in MAC & Bronchiectasis

Non-tuberculous Mycobacteria