Does anyone here have Mycobacteria Abscessus (MABC)?

I have M. Abscessus . I have a local pulmonologist and ID doctor. I chose to go to National Jewish in Denver-they are the best for pulmonary, and I'm so thankful I did. I first called my insurance company and NJH was covered. So I called directly and made an appointment. It can take up to 4-6 months. My ID doctor also wrote a referral. If this doesn't work for you, I would recommend the following: 1, 7% saline is typically recommended, not 3%. I use the aerobika along woth the OMBRA compressor. This system, you can change out the tubing and compressor air filter. The last compressor I was using gave me grave concern, since the tubing was not removable and there was no filter. 2. Your culture should be tested for Susceptibility/Resisistance/Intermediate for a number of antibiotics. Antibiotics typically used when MAC is macrolide resistant include: Amakacin, Imipenem, Tigicycline, Linezolid,Nuzyra, and a few others. 3. NJH determined mt bacterial count as well. This along with my CT scans enabled me to go off the antibiotics I was on. My count was very low, so they are watching it. I return in August for a follow up low dose CT and if no change, I return in 6 months. I also send in monthly sputum samples. Returning for follow up is not necessary but since my daughter lives in Denver, I decided to do so. I hope this helps. Yes, MABs is faster growing but I was officially diagnosed in November 2024 and still no change. Kathy

PS; I meant "MABs" not "MAC".

PS: I meant "MABs" not "MAC".

I’m sorry for the delay in responding. Thank you so much for your reply, this is helpful. I don’t know what “faster growing” means in relation to timeframe and MAC being “slow growing, so it’s encouraging that you have not had a change in nine months.

It looks like mine is susceptible to a couple different antibiotics. At Rush University Hospital in Chicago they transferred me to a MAC specialist. This is who I will be meeting in two weeks. I hope he is the same caliber as those at National Jewish.

You're welcome.

Actually, it's been longer than 9 months. My first CT scan was in March 2024, which showed nodules. I figured they were residual nodules from an atypical form of pneumonia that I had quite a few years prior, so I wasn't concerned. My doctor wanted the CT repeated in 3-6 months and then we did the 2nd test after the first one, hence the diagnosis. So, no change for 1.25 years. I was seeing a local ID doctor who wanted to hold off treatment. I'm thinking M.Abscessus takes 3-4 weeks to grow and MAC is 6-8 weeks. Don't quote me on that, I really don't know the lab specifics.

Did Azithromycin or Clarithromycin show susceptible? If so, that's good news. mine is resistant.

I think a MAC specialist at a University hopsital would be good, but if your MAB is macrolide resistant, I would make sure that doctor is up to speed on MAB and the antibiotics used to treat. There is no standard treatment for MABs.

Just a tip. many people catch MAC and MABs from their home environment. So they can be "cured" and then relapse due to their home environment. I have taken steps to help minimize this from happening again. I replaced my shower head, I don't take hot steamy showers, I installed an ultrafiltration filter at my sink, I sterilize my aeobika by boiling in distilled water for 5 minutes every other day. I also change out teh OMBRA tubing 1/month. I may switch to the baby bottle microwaveable bags.

Good luck!

Kathy

Kathy, thank you again, and I must apologize once again for my delayed response. At times I think I’m in denial, and the fatigue is so bad at times I just can’t concentrate to send a message. You bring up so many good things. After waiting so long, I was not happy with my appointment this week with the new ID doctor, as they switched the doctor on me at the last minute. I think this one is used to working with children with cystic fibrosis. Plus, they still have not connected me with a pulmonologist who specializes in bronchiectasis. I had a flare this past week that was truly scary as I couldn’t breathe in or out three different times, and thought I might need to go to the hospital. I didn’t know who to call. I’ve gotten serious about doing airway clearance three times a day now. (thank you for your tips) My husband and I are seriously considering going to NJH. Looks like I need to send a request in for a consultation first… unless my doctor can write a referral like yours did. Someone mentioned in another thread that Cleveland Clinic has a bronchiectasis department. I’m looking into that also since I could drive. I’m sure like you, I just want doctors who have a lot of experience with bronchiectasis and MAB. Also on top of the new drugs that are coming out for it.

I’m susceptible to Amikacin, Clarithromycin…. Gosh, and it looks like that’s it.

Thank you for all the info about sterilization, replacing the showerhead, and I’m thankful we already have an under the sink water filtration system. Interestingly, when we brought up the one last plant we have in the house and our plans to get rid of it, the ID Dr said that there isn’t anything that could be inside of a house that you wouldn’t be exposed to outside of the house, and that he wouldn’t worry about it. Opposite of what I thought I heard elsewhere.

I need to check out the OMBRA and see how it differs from the nebulizer I have.

That is great news that you can use Clarithromycin!! I had mentioned mine is resistant. My doctor at NJH is amazing!! I did not need a referral to NJH per my insurance company; my ID called it in spite of. Also, when I was at NJH they tested other antibiotics AND 1 antibiotic showed resistant but learned at NJH that it usually shows resistant since it's so unstable and doesn't last in the petri dish or fluid medium long enough.
My Dr is Dr Haas and she is really good!! All you need to do is call NJH and set it up-it takes months to get in. Maybe Cleveland Clinic you can get in quicker.
I'm also taking Chinese herbs and my energy is back to normal. I went to a clinic here that specializes in acupuncture and herbs. The doctor told me the herbs I'm taking is stronger than daily acupuncture. Good to hear from you! Please keep me posted on how you're doing and if and when you can get into either NJH or CC.

My partner has NTM Abscesses, We think he picked it up in Arizona where we lived 5 years ago or from scuba diving in Hawaii. It took a while to get diagnosed at Univ of Penn, but once it was, the treatment started swiftly. 4 oral antibiotics for 4-5 months, then dropped one of those and went on 12 weeks of home IV treatments with two additional antibiotics. At that point the sputum samples showed no growth so we stopped the two IV’s and added one inhaled antibiotic along with continuing the 3 oral antibiotics. Last CT showed that one area might not be responding so they did a lung bronchoscope for cancer and to better sample the area. Cancer was negative and the tests for NTM-A were also negative. All the tests show that the NTM-A has cleared. However, due to the recurrence risk, he’ll stay on the 3 oral and 1 inhaled antibiotics for 9 more months. We do take precautions at home as well (regular: vent cleaning, house cleaning, carpet cleaning, water and air filtration, masking when out of the house, etc.) but it really doesn’t crimp our life style and we spend lots of time with the grand kids, neighbors and friends. Hoping to resume travel soon as well. This is a long road, but its worth it.

I love that you are taking Chinese herbs. I would like to do that also, and would love to know what you're on since you have done well on them. While looking up Cleveland Clinic, I found that there are 37 bronchiectasis/NTM approved clinics in the US and that Northwestern in Chicago is one of them! I see them on Monday.... they got me in right away. It would just be so nice to get care within driving distance, but I will consider NJH if I need to since they seem to be the gold standard. Thank you for the recommendation of Dr. Haas. I'm sorry yours is resistant to Clarithromycin. I just listened to this podcast which had some interesting information.
https://podcasts.apple.com/us/podcast/recalcitrant-mac-lung-disease-resistant-mac-and-m/id1534165478?i=1000715245555

Thank you so much for outlining the antibiotic regime. It is a long road! How long did it take him to start feeling better? Meaning... heavy chest, constant coughing, impared breathing, fatigue? I'm still a little confused as to whether symptoms like this are from the bronchiectasis, the NTM, or both. I know it also depends on the species and genetics of the NTM so I might be put on a different path. Thank you for the positive note at the end. I'm not feeling very positive right now as you can imagine.