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@windwalker

@anniepie, @judyhogem, Hi all. Just want to add that not all drug treatments are horrible for everyone. My treatment plan had zero side effects (can click on my photo icon to read about mine). Depending on what your susceptibility tests show, you may not need the harsh meds to treat mac. I have tested negative for three years now.

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Replies to "@anniepie, @judyhogem, Hi all. Just want to add that not all drug treatments are horrible for..."

@windwalker Yes -- here's hoping the treatment I'm on works. I wish I had a doctor like Dr Leventhal! Right back at the beginning, I mentioned your drug protocol and treatment success to my pulmonary specialist; who specialises in NTMs and TB. I was really hoping I could try something like the protocol you had. But she didn't agree with it, which is a real shame.
It seems a lot, maybe most, pulmonologists want to just stick with the Big 3 the American Thoracic Society (ATS) pushes as the standard protocol.
In Australia susceptibility testing to each of the Big 3 drugs isn't usually done, or other drugs. They only test for susceptibility to one drug. They do in-vitro testing which is certainly better than no testing, but isn't much good when you have a heavy biofilm disease like M. Intracellulare. Unfortunately, I've been a public/medicare patient, so I didn't get much choice about the tests.
I think Dr Leventhal must have been a really good and courageous doctor to go against the powerful ATS lobby. And obviously he knew what he was doing and listened to his patients' concerns. I really hope your new doctor is as open-minded as he was. And above all else, stay well Terri -- that's the best solution