1. < MAC & Bronchiectasis

Does anyone here have Mycobacteria Abscessus (MABC)?

Posted by cyndanna @cyndanna, 1 day ago

A year ago I was diagnosed with Pseudomonos. (Antibiotic) In December one culture came back MAC and Pseudomonos. (IV antibiotic for 3 weeks) Now I am told two cultures say MABC which I didn’t know existed. I see it’s faster growing? I can’t see my ID until July 17th and have so many questions about the differences in treating. I can go two weeks without coughing then it all starts again with enlarged lymph in neck, dark sputum, heavy chest… is this what is referred to as an exacerbation? I do Aerobika, neb 3% saline and use an albuterol inhaler. No antibiotics right now. Just wondering what my future looks like with MABC if anyone else here has it.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

kathyjjb | @kathyjjb | 1 day ago

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

REPLY
1 reply
kathyjjb | @kathyjjb | 1 day ago
In reply to @kathyjjb "I have M. Abscessus . I have a local pulmonologist and ID doctor. I chose to..." + (show)
@kathyjjb

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

Jump to this post

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

REPLY
kathyjjb | @kathyjjb | 1 day ago

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

REPLY
Please sign in or register to post a reply.