positive after many negatives

@terryb1 Hi Terry. Gosh, I am so sorry that you are testing positive again. You must be so disappointed. May I ask what your suseptibility test show? I have a resaon for asking.

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.
Terry

OOPS forgot to mention with susceptibility panel: rifampin,intermediate; ethambutol, resistant; In the combination of refampin + ethambuto, the effect is additive and tentatively interpreted as intermediate.
Looking forward to hearing from you.

@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?

I think it was approximately after 6 mos. that I did not convert. Pulmonologist decided to throw in inhaled amikacin as a sort of Hail Mary. It seems that amikacin has some kind of synergistic effect when combined with other drugs ... even if susceptibility panel shows that it is not recommended. It was at that time that I was switched from three times per week to every day on the drugs. I think my last sputum test turned positive (after I believe 5 in a row that were negative) sometime in the 5th week of being in the lab-- literally it was the sample that I gave the dr the day he took me off the drugs!. Dr stated that he was sending that sputum off to National Jewish for additional evaluation. So I guess it can turn positive faster than we thought and that the faster it turns positive may mean something about the colony count. Have moderate bronchiecstasis. I have a zillion questions about all of this and will be going to National Jewish to ask the above and other "what if's". I will let everyone learn what I hopefully will learn. One other important cautionary tale: I did not develop visual problems until 18 months on ethambutol (has a cumulative effect), so important to know that monitoring continues to be important even after many many months on this drug. Clofazimine was substituted for the ethambutol.

Another question to ask when I go to National Jewish.