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#6381
Flofreidaflofreida
Member

If you go to National Jewish, bear in mind that they take a very aggressive approach to treatment and will most probably recommend drugs. That said, you can learn a lot from their very specialized testing and analysis to give a basis for deciding what course you want to take. I went there in 1999 although I had no perceptible symptoms–no cough, night-sweats, etc. They don’t believe in the concept of colonization by bacteria except in the gut for digestion. To them, any MAC infection is a potential problem. They prescribed 3 drugs for 18 months, after which I was told that I did not have MAC anymore. Then in 2004, I had a positive culture again. I don’t know whether it was a reinfection or that the drugs never really got rid of all the MAC. This time I did not go back on drugs. I do mucus clearance and have an annual CT scan. So far my condition is stable and I am fine. I don’t cough. I work full time. Is this the right course of action or am I taking a serious risk? Who knows?

There are no rules with MAC, no “gold standard” and no “evidence based medicine.” Get as much information as you can to make a decision you are comfortable with.