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MAC Big 3 treatment and negative sputum conversion

MAC & Bronchiectasis | Last Active: 3 days ago | Replies (15)
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@sueinmn

@desperate2 There is actually a term for your type of MAC - it is called Refractory, or resistant to treatment. Your CT scan seems to support this conclusion.

Now is the time to find an NTM/MAC specialist - either a Pulmonologist or Infectious Disease doctor. If there is not one where you live, you may need to travel to a specialty center, there are quite a few around the country.

There is a recommended protocol for treating Refractory NTM - you can find it in this video from National Jewish Health at the 24 minute mark:


The current protocol at least considers adding an inhaled drug after 6 months to one year without conversion. I wish that had been an option in 2019. Daily meds were very hard on my body, and after 6 months, with only a single negative sputum sample, my ID doc and I stopped antibiotic treatment and I relied on 7% saline nebs and daily airway clearance to suppress any remaining NTM.

Are you looking for a specialist?

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Replies to "@desperate2 There is actually a term for your type of MAC - it is called Refractory,..."
desperate2 | @desperate2 | 4 days ago

I am sorry to hear about your situation and appreciate your support. I am seeing pulmonologist and infectious disease doctor. Neither of them have direct MAC experience. I am seeking a second opinion but my insurance won’t let me to see anyone outside of their network (Kaiser) and they don’t have any MAC specialists. I put together a list of specialists but would have to pay out of pocket which I may do anyway. It seems that I may need to switch to daily regimen and/or add ALIS going forward. If my nody can handle that, how do I know the treatment is working given I can’t produce sputum?

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