Just found out I have mycobacterium abscessus!

If anyone has been diagnosed with Mycobacterium abscessus (aka MABs) here is a clinical study you might be interested in. https://ntmclinicalstudy.com/ I have had this version of MAC show up in my sputum samples on 3 occasions over the last 3 years. Most recently negative. It has been over 2 years since taking antibiotics. So I continue with nebbing 7% saline and using the Aerobika.

Sue. Do you spit out more sputum on some days than others? After nebulizing? Usually mine is clear and foamy looking but sometimes, like I have mentioned before, little light yellow clumps? NJH accepted me so they will be calling me next week for phone interview, and then begin the scheduling process. I have to fly from Blue Ridge Georgia to Denver. The fear of all of this is paralyzing….I have yet to meet face to face with experts to help me. I,pray to God NJH will. Any thoughts?

Are the antibiotics agreeing with you or do you have side effects

Bon, I haven't taken antibiotics in over 2 years for MAC/NTM. I did take the "big 3" Azithromycin, Ethambutol, and Rifampin for about 18 months and also inhaled Amikacin (Arikayce) the last 3 months of that time frame. I stopped because of tinnitis in my left ear. My most recent sputum sample 4 months ago was negative for MAC/NTM but positive for Hemophilus influenzae which was cleared up completely with a 10 day treatment of Augmentin. I have very little cough these days but continue with nebbing 7% saline and using the Aerobika device. Good luck to you at NJH, they are the best. Bill

Hi Bill. Did the antibiotics make you sick?

Bon, The Rifampin actually made me very nauseous and I stopped taking it long before stopping the other ones. A lot of doctors believe that Azithromycin and Ethambutol by themselves work just as well by themselves without the Rifampin. The main reason I stopped all antibiotics is tinnitis in my ear, (still have it). I have since done quite well without any of them.

Bill do you have MAC or bronchecstasis too? So the MAC is gone now Bill?

Bon, Click on my picture then profile, you will get some history. We are the same age!! So I was diagnosed with Bronchiectasis and Mycobacterium abscessus (that's the worst form of MAC) in 2019. It has been over 2 years since I have had a positive culture for Mycobacteria. I see where you have MAI which is not as severe as the M. abscessus variety. I will always have the Bronchiectasis, it never goes away. I feel very fortunate to have found Mayo Clinic Connect, where I have learned a lot about my disease and how important airway clearance is to keep things under control. I would suggest you type "airway clearance" in the search bar above to get a lot of good information on this. I am not saying you can do without antibiotics, depends on a lot of factors, the good docs at NJH will give it to you straight. Bill