← Return to positive after many negatives

terryb1 (@128128terry11t)

positive after many negatives

MAC & Bronchiectasis | Last Active: Apr 24, 2019 | Replies (7)

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Was originally on the usual Big 3 for 3Xweek. Didn't test negative right away so got switched from 3X/wk to every day. Didn't test negative right away so inhaled amikacin was thrown into the mix even though susceptibility profile indicated resistant. Felt that there would be a synergistic effect along with other drugs. It seems to have worked and I kept testing negative. Took everything for about 2 years. Four weeks ago, dr said that I could go off the meds and took another sputum sample. Sure enough, that tested positive. He said that I could still go off drugs until the next one or two sputums were tested to see if truly positive. I opted to continue the azithromycin and clofazimine (was taken off ethambutol after 18 mos due to visual problems and clofazimine substituted). I stayed on them because I didn't want my body to get used to no drugs only to have to go back on them if I were to test positive. Dr. said that if those sputums tested positive, he would want me to start inhaled arikayce. Susceptibility panel showed: clofazimine, susceptible; rifabutin, intermediate; moxifloxacin, resistant; amikacin, resistant; linezolid, resistant; ciprofloxacin, resistant; streptomycin, resistant; clarithromycin, susceptible.
I look forward to hearing from you and thank you.

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Replies to "Was originally on the usual Big 3 for 3Xweek. Didn't test negative right away so got..."

@128128terry11t Hi Terry. There are some comments of yours that has me confused. Your first sentence says you didn't test negative right away on your Big 3, so they changed it. It doesn't sound like the meds were given enough time to work if it was 'right away'. (Although I am not sure how long 'right away' is.) The next thing I am wondering about is your sputem test result being read at 4 weeks. It takes 6-8 weeks to grow mac. Did the lab use some newer rapid technique? I am confused also about your suseptibility test. Your test shows that your mac is resistant Amakacin, but you were put on inhaled Arikayce, which is the inhaled version of Amakacin. I wonder why your dr didn't want to try inhaled tobramycin or colistin? Do you have bronchiectasis?

@128128terry11t Another thing I am curious about; why isn't azithromycin on the suseptibility test? And since clarithromycin shows suseptibility; why aren't you on that one?

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