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@anniepie

@windwalker Thanks again Terri – it's a precious gift for us newcomers to be helped by someone who has been through it and succeeded. I'm actually in Australia (hi @heathert in NZ). There's not much experience in Australia but I'm at one of only 2 NTM clinics in the country. Here they want to use the standard Big 3 drugs in the ATS protocol with all the toxic risks and sometimes not very good success rates really.

Mayo is respected internationally, Terri. Thanks so much for info about your Mayo doctor. I'd really like to find out if he has treated many MAC/MAI patients successfully with the protocol you mentioned: Antibiotic 1 for 10 days in month 1 and antibiotic 2 for 10 days in month 2, alternating. (If so, I hope he publishes it, I'd like to show my pulmologists here so I can try it). Thanks for explaining you'd been really ill too but succeeded at the 12 month mark. If it's okay, I might write to him at Mayo to find out more about it. I'm very interested.

You asked for my clinical details: I was diagnosed recently with M. Intracellulare MAI by CT scan and 2 positive sputum tests. I have bronchiectasis and recurring MAC/MAI symptoms – lots of fatigue and weakness, fever, lung pains, coughing etc. Unfortunately, my GP/primary doctor and I just discovered that M. Intracellulare was found in a bronchoscopy I had at a different hospital more than 3 years ago but they messed up and didn't send the results to my doctor or me. So I've been left untreated but getting worse for more than 3 years. I've been unable to work for nearly 3 months now — I tried but couldn't make it through a day. I'm older than you Terri, I'm 65, but had previously been working well and planned to continue — a 'young 65' LOL — but now I need to retire. I've got some complications to work around: recurring vasculitis (skin) that needs immunosupressive treatment – not good with NTM. And I'm hypothyroid so some drugs interact with my thyroid meds.

Anyway, my heart goes out to everyone posting on this site and I wish us all the best. This is the best forum group I've found online – the kindest people. Thank you all for your support for all of us. Hugs, Annie

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Replies to "@windwalker Thanks again Terri - it's a precious gift for us newcomers to be helped by..."

hi @anniepie It is difficult getting a dr who knows lots about this. I think if your scan shows alot of MAI then they will want to treat with the big 3, however if your MAI is minimal they will look at other methods or a wait and see approach. I hope you can get this sorted. This is a great forum, we are very lucky. Hugs Heather

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