← Return to Does anyone here have Mycobacteria Abscessus (MABC)?

Discussion
Comment receiving replies
Profile picture for tomed @tomed

NTM takes a great deal of patience - both for the patient and the caregiver. It took over a year to be diagnosed (in fairness, he refused to go to the doctor until it got really bad). Initially the general doc said it was just bronchitis and put him on a short course of antibiotics and a bronchodilator. When that failed, the GP recommended a pulmonologist. That doc did diagnose it but, by his own admission, had no idea how to treat it or who to turn to. I had a colleague at Univ of Penn who got my spouse connected to an ID doctor who specializes in NTM-A. For the first couple months, the antibiotics made no difference and he was miserable most of the time. One of the antibiotics was causing a liver concern so the doc dropped that one quickly. Once he started the home IV’s he improved really fast ( took about 4 weeks). By week 12, he was feeling fantastic and it was hard to get a monthly sputum sample. The last sputum sample during the 12 weeks was completely negative for the bacteria. My guess is that both a Bronchiectasis and NTM would be causing the fatigue and breathing challenges, but the NTM really makes it hard to breath, which in turn made my spouse really tired all the time. It’s been about 9-10 months since he began with the first treatments. Now he’s walking the dogs a mile each morning and each evening, he’s started back with weight lifting, he’s comfortable taking drives for a few hours, and he sleeps well every night. It is literally night and day from a year ago. Having a solid medical team, a supportive family (and extended family), staying on top of all the tests and meds, and doing everything we can reasonably do to help from a household perspective combined with a positive attitude has really turned things around. The Nuzyra is hard on his stomach - I wake him up at 5:30 each morning to take the nausea drug and wake him up again at 6:00 for the Nuzyra - that regimen has worked (can’t eat for 2 hours after taking Nuzyra). The daily inhaled Amakacin makes him hoarse and the process to clean the apparatus is cumbersome, but its a small price to pay for feeling good. There really is a light at the end of this tunnel (and it isn’t the train headed toward us!). The doc’s haven’t used the “cured” word yet, but they’ve come as close as they dare. I hope you do well with your treatments and as I often said to my spouse during this process: It’s ok to not be ok.

Jump to this post


Replies to "NTM takes a great deal of patience - both for the patient and the caregiver. It..."

Thank you for the encouragement! I’m hanging on to what you said about “feeling fantastic.” I also had delays in my care for a few years with local docs. I may not be where I am today if I knew about airways clearance two years ago when I started coughing up mucus plugs. But that’s water under the bridge. I’m praying I have knowledgeable docs on top of things now. I know I need the antibiotics but it makes me nervous.