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Did your MAC symptoms improve once you started Big3?

MAC & Bronchiectasis | Last Active: 2 days ago | Replies (9)
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@mariegrace

I thought it did but maybe it was a placebo effect.
Unfortunately, after 7 weeks I had to stop them because of side effects.
Had chest CT with no improvement.
Docs tell me it takes a long time to see improvement.
Even when you become negative for MAC, chances of reinfection is 50%

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Replies to "I thought it did but maybe it was a placebo effect. Unfortunately, after 7 weeks I..."
sisterpulse | @sisterpulse | 4 days ago

Hi
I’m avoiding the TB drugs ( Big 3 ) due to the possible side effects on my eyesight, hearing, skin, liver GI tract, cardiac and kidney function etc. with the likelihood of only 30% conversion rate and possible re infection with another MAC strain via the environment ( hot water/ shower head, soil, local streams etc and maybe the Bird Feeder too. )

I was a student nurse in the 60’s and administered these drugs in an infectious disease unit to patients with TB and two had Leprosy. And these are the main drugs prescribed for Non Tuberculous Mycobacteria ( not much progress then)
I have ‘ moderate Bronchiectasis and Mac ( chimera and intracellare) which I believe are ‘ slow growers’
I’m doing daily airway clearance with 7% saline, Acapella etc.
I am not breathless, minimal cough and sputum ..at the moment and feel ok with the help of Encore nutritional supplement.
Thanks to this group I am keeping up to date on NTM ( MAC ) and online lectures from Specialist Respiratory Practitioners which has helped me come to this point in my own management.
Has anyone done any research on patient survival rates with Nodular MAC who have not taken the Big 3?
Stay as well as you can. 🤗
SP

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