@robyn13 Robyn,
I had both a local doctor and a local Infectious disease doctor and the ID Dr prematurely put me on some very nasty antibiotics. Fortunately, I went to National Jewish in Denver (they are the leaders in MAC/BE healthcare), 2.5 weeks into my antibiotic course. NJH, after a week, told me I could go off the antibiotics and do "watchful wait". People can be on watchful wait for years, some people, especially if they nebulize and do ACT, don't ever need antibiotics! Does your doctor know your "count"? If not, that should be a huge red flag. NJH ID Dr told me they consider a count over 400 to be high. My count was 32. My last 8 counts have been 32, 0,0,0,22,8 (solid culture), 8 broth. These are very low numbers and do not require antibiotic therapy. Watch and wait is where you are followed with CT scans, sputum cultures, and general health assessments-how you feel. Please keep in mind, some people never need antibiotics. According to Dr. Daly (NJH), there is only 5 years of data assessing the likelihood if antibiotics are needed. I don't recall the number but think it was between 15 and 25%. Also, the research was not done in the US (Korea comes to mind) and Dr Daly did not know if they were nebulizing. Some studies have supported clearance without antibiotics as high as 25% while nebulizing-that said, the studies had small groups. I would highly recommend (if you're not already) that you go to a Clinic that specializes in NTM/BE infections.