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Posts (191)

Wed, Apr 24 10:31am · positive after many negatives in MAC & Bronchiectasis

Another question to ask when I go to National Jewish.

Wed, Apr 24 10:29am · positive after many negatives in MAC & Bronchiectasis

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.

Sat, Apr 20 9:53am · positive after many negatives in MAC & Bronchiectasis

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.

Sat, Apr 20 9:39am · positive after many negatives in MAC & Bronchiectasis

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.

Sat, Apr 20 6:19am · positive after many negatives in MAC & Bronchiectasis

I had been culturing negative for over a year and doctor decided to take me off the drugs the other day. However four weeks later, I found out that my last culture (taken at the last visit when doctor took me off drugs) came back positive. Did another culture a few days ago and am awaiting those results. Dr. said that I could stay off meds but I decided to remain on azithromycin and clofazimine in the meantime. If subsequent culture is positive, he wants me to start the inhaled arikayce. Has anyone else experienced being negative for over a year and then culturing positive at the very end when you were to stop the meds? If so, did you go back on drugs almost immediately or simply monitor for a while?

Sat, Mar 23 2:54pm · tips for travel in MAC & Bronchiectasis

I purchased the Micro Mist disposable nebulizer set from justnebulizers.com. It is more expensive than the Vix One that you purchased The case of 50 of the Micro Mist costs about $85. Your Vix One only costs $55, which is terrific. I have one question: Does your Vix One come with the disposable tubing that is necessary to connect the nebulizer with the compressor? I didn't see the tubing on the picture displayed on the website.

Sat, Mar 23 2:22pm · tips for travel in MAC & Bronchiectasis

We learn so much from each other. I am so grateful that a site like this exists. We are truly not alone on this journey.

Fri, Mar 22 10:56pm · tips for travel in MAC & Bronchiectasis

I got my disposable nebulizers from justnebulizers.com. I believe that you can buy them individually, in a pack of 10, or a case of 50.