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Oct 17, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

We will give the protein a try (as well as some of the other tips from everyone). Thank you for the kind, kind offer. We are in New York unfortunately.

Oct 16, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi all,

I’m excited to have found this group. I am posting on behalf of my mother who was diagnosed with MAI about 15 months ago, and she’s been on antibiotics for 13 of of those months. She recently got pneumonia, was hospitalized, was taken off of those – as they gave her other things – and in the last month or so, has been home healing up. She’s struggling with the disease and I’m not sure how to help her. If anyone has advice or insight to our questions, I’m thankful in advance:

– While she was on the antibiotics, prior to the pneumonia, she was generally not feeling great, but her health seemed to be stable.
– Since she came out of the hospital, her pulmonary doctor said she can discontinue the antibiotics. Her recent CT scan shows no additional changes from last year, which is good news I think. But is discontinuing the medicine typical?
– My mother feels weak, has no energy, and says she’s very uncomfortable, more than before. Should she expect to feel better? She seems to be healing very slowly, even at times it seems she’s gotten worse than before; it’s hard to tell.
– My mother also has depression. It’s hard for the family to tell how much of this is physical and mental, though I know the two are intertwined. I’m going to suggest she go to a therapist in addition to her psychiatrist visits (30 mins once a month).
– Has anyone had experience with an MAI specialist in New York City? I tried calling Mt Sinai (who I understand is now associated with National Jewish Health) but their generalized appointment hotline was not very helpful.

Thank you,
Charmaine