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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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@desperate2

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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Replies to "I am sorry to hear about your situation and appreciate your support. I am seeing pulmonologist..."
Sue, Volunteer Mentor | @sueinmn | 4 days ago

I strongly suggest you appeal Kaiser's denial of an outside consultation. First of all, Kaiser is a very large organization, even if they don't have a specialist locally, it is probable that they have one within their reach.

MAC is a rare disease affecting less than .5 million people, and treatment protocols are quite specific, that alone is a reason to allow access to an outside specialist.

Maybe you can include a link to the NJH video in your appeal to show the complexity of this infection?

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