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3 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Kate @alleycatkate — the fires came about 3 miles from me but were very close for my niece. I have used a mask on some days for the smoke but keep all the windows closed, and use my asthma puffer a bit more. I will be careful. How are you going? I hope all is well for you. Hugs, Annie

5 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@kathyhg and @janovr – yes the illness can make us feel more nausea, even before we start treatment, Then the big 3 and many other drugs can make us feel very nauseated too – often.
I take my meds at night so the worst effects happen while I sleep. This seems to help better than taking them in the morning. I agree with everyone about the candied ginger, and also ginger tea. I also use a ginger marmalade on toast. It all helps. I hope you find things to help you soon

5 days ago · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Terri @windwalker. The smoky air has been less choking for the past few days but down here it's late spring — it's going to be a long hot summer. (Australia is around the same size as the USA minus Alaska. Three quarters of the country have been in the worst drought ever and wildfires have been wiping out millions of acres around the country).
Anyway, when I finally finish these TB meds, I hope I can find a doctor to put me on a good prophylactic treatment something like yours. Thanks so much for telling us about it. All the best, Annie

Mon, Nov 11 1:45am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Please look after yourselves anyone in Australia with MAC-MAI and bronchiectasis this week! The air is very smoky and bad here in Brisbane from all the wildfires in this state and other states. It's getting hard to breathe now and will get worse this week — keep safe

Mon, Nov 4 12:56am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@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

Fri, Nov 1 1:10am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Thanks Judy @judyhodgern ! Your reply is really appreciated.
I almost laughed and cried when I read the facial skin and eye discoloration can be long lasting when taking Clofazamine and — laugh or cry — it affects between 75% and 100% of people who take Clofazimine. I mean — where do they get all these awful drugs from to treat NTMs???? (Laugh). We really do have to put up with a lot and my heart goes out to everyone

Fri, Nov 1 12:57am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@chinasmom You're a kind and lovely person, thanks and hugs

Thu, Oct 31 6:09am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Has anyone had Clofazimine before? What was it like?
My pulmonologist / thoracic specialist has taken me off Rifampin because it was interacting too much with all my heart, thyroid and cholesterol drugs. It's being replaced by Clofazimine, which I have to start tomorrow night, with the Azithromycin and Ethambutol.