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I'm sad to say I was just told I have to pause treatment three months after starting because I experienced vertigo attacks, bad constant tinnitus and my hearing felt funny (for the record, I had occasional vertigo and occasional though not constant tinnitus before I started). A hearing test showed a significant loss of hearing in one ear since the baseline done right before I started the Big Three. I know there is clofazime and Amikacin, but the latter has high ototoxicity as well. I'm concerned about what the future holds for me if I can't take a macrolide, but I know many of us here may be in the same boat of having MAC and limited treatment options, and some do okay!

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Replies to "I'm sad to say I was just told I have to pause treatment three months after..."

Glad you had the baseline test before you started. Some people were not informed to do so or knew to do so. So important to know what it is before and after starting.
The most and best we can do if we can't take antibiotics is healthy eating, exercise, avoiding stress (good luck with that) drawing in saline solution via the nebulizer as much as possible per the doctors orders, and good consistent air way clearance methods.
Wishing you to be one of those who......"some do okay"!
Barbara