Does anyone here have Mycobacteria Abscessus (MABC)?

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.

I'm sorry too! There is no standard treatment for M. Abscessus that's macrolide resistant. I was only on antibiotics for 3 weeks and fortunately NJH told me I could go off them and do "watchful wait" approach.
I had an herbal consult at a fairly well-known acupuncture clinic: Eastern Medicine and Herbal Clinic in Scottsdale. The doctor wanted me to take powders or possibly the actual herbs (to make tea) but I have a hard time taking them that way, so we are currently trying the brand; SOL Nutrion. I am taking 4 capsules of the GOGO energy twice per day (8 total) and the same amount of Healthy Liver Capsules. He told me if there's no improvement when after my 3 month follow up at NJH, that he wants me to try the herbs. I would definitely talk to your doctor about taking any supplement if on the "Big 3". I'm not on any antibiotics at this time, so I'm fine with taking them. As I said, my energy is up but I can't tell you if it's the herbs that's doing that. I will let you know after my August 20th/21st follow up at NJH if there's any improvement on CT.

Thank you for all the great herbal and supplement information! I’m on quite a few supplements right now that I will let them know about. Yes, please let me know how your visit goes in August!

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.

Hi cyndanna, I had my first positive sputum for M. Abscessus back in 2018, about a year after completing treatment for MAC and have had positive cultures since then and only for M. Abscessus. I also have BE and bronchiolitis which waxes and wanes. Despite the fact that M. Abscessus is known to grow quickly (as least when compared to MAI or MAC), my doctors and I have been on a "watchful waiting" plan since then. The medications that I would need to take are very hard on the system, so no one wants me to start unless I get sick and have no choice. There was a scare last August but that turned out to be an acute upper respiratory bacterial infection. I experienced the loss of appetite and weight loss, the coughing, the fatigue, but that has turned around mostly after two years of working with gastroenterology and functional medicine. I feel quite well now. The only medications I take are an inhaler bid to help with inflammation (Breyna) and the nebulizer saline and albuterol. I rarely bring up sputum and the cough is from a chronic post-nasal drip that causes aspiration.

I have pulmonologist and ID doctors and the list of medications if my health got worse. Right now, I'm optimistic that I can keep the bugs at bay and not begin treatment as long as there isn't a progression of lung damage. I hope you find this helpful and wish you the very best with your health.