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Does anyone here have Mycobacteria Abscessus (MABC)?

Posted by cyndanna @cyndanna, 16 hours 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.

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kathyjjb | @kathyjjb | 11 hours 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

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kathyjjb | @kathyjjb | 11 hours 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

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

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kathyjjb | @kathyjjb | 11 hours ago

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

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