Does anyone have abscessus?

Thank you for all the input. It’s hard to keep track of everyone.
My primary care doctor will assist me. He’s very accommodating. He referred me to USA (University of South Alabama) in February. They have a very impressive pulmonary department. Things just did not work out when we got to treatment. Not all their fault because my mother was dying at that time and everything got put on the back burner.
I’m having a CT Thursday and waiting to see the results to decide what to do next.

Hi km6, I've had cultures that are positive for M. Abscessus since 2018. I was living in Miami at the time, and was about a year out from completing treatment for the third MAI infection. All the doctors I've seen about it--pulmonologists and infectious disease--agreed to a watch-and-wait scenario. As those of you with it know, the antibiotics are severe and don't guarantee success. So as long as I didn't get sick, they didn't want to treat.

Almost two years ago, I began to lose weight insidiously, and became weak and had increased digestive issues by this time last year. The question of treatment arose and sensitivities were done to see which antibiotics would work best. The assumption was that these symptoms were an indication of infection. But I thought to treat the weight loss and digestive issues and then reassess. Between gastroenterology and functional medicine, I am slowly turning it around, and am able to resume exercise. There was some malabsorption, SIBO and candida.

I have a vest but it has not worked well for me. It doesn't bring up sputum even with albuterol and saline in a nebulizer and using a PEP and other respiratory gadgets. I appear to have dry bronchiectasis now. Bottom line, I've been free of treatment for NTMs since 2017 (seven years) and have mostly managed living with M. Abscessus colonization. I couldn't manage a full-time job and only now feel that I could do some remote part-time work. I'm dragging myself to a space where I accept that I'm probably going to live with this going forward and indefinitely.

Thank you. That gives me some good info
I'm not 'sick' other than asthma and bronchiectasis and now GERD from a small hiatal hernia
I'm not a great candidate for treatment due to recurring Cdiff. I mostly try to stay well and pray hard!

I had two positive cultures for abscessus last summer while hospitalized for an exacerbation of interstitial lung fibrosis and was referred to an ID doctor. He gave little information other than abscessus is faster growing and harder to treat. He said I could treat it with antibiotics, wait to treat it, or not treat it. I was to make a decision based on those parameters. I chose to treat and was started on Azithromycin 500 mg, 1 daily; Omadacycline (Nuzyra) 150 mg 2 once daily (no food 4 hrs before or 2 hrs after); and Arakayce inhaled. I was told to begin all at the same time. I took Omadacycline at 6:00 am because of the food requirement and Arakayce at 5:00 pm because it was a convenient time. With those two times, I decided to take the azithromycin with lunch. Almost immediately I had loose, frequent stools. While not pleasant, I can deal with it. Arakayce caused hoarseness for a while, but that improved. All of my monthly cultures have been negative since I began treatment. I do not have any cavities, and one doctor told me that he did not see any evidence of abscessus on my CTs. My guess is that this was found at an early stage and that Arakayce was very effective. After the first month, however, I ended up in the hospital and it was believed that my symptoms were side effects of Arakayce. So it was stopped, and in its place I now receive the IV Cefoxitin 4 gm q 12 hours through a picc line at home. I don’t know if I have symptoms as mine I think are from the fibrosis: SOB, fatigue. I require 15L of oxygen on exertion. I produce very little sputum. I am trying to be qualified for transplant. Some centers will not consider me because of the abscessus; others seem willing to work around it.