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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Nov 21 5:21pm | Replies (9354)Comment receiving replies
Welcome to Mayo Connect. Yes, a MAC and/or Bronchiectasis diagnosis often leads to a "poor pitiful me day" - hardly anyone who doesn't have these conditions has ever even heard of them! And early reading sounds so dire...
Let me begin by saying - a "Big 3" or 5-medication regimen for MAC is not a given. Depending on the severity of your condition, and the presence of other medical conditions, more conservative treatments can be tried first.
For early reading to become familiar with your condition, I recommend:
https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria and
https://my.clevelandclinic.org/health/diseases/21144-bronchiectasis
And feel free to read posts from all of us on the discussion, and respond with any questions you might have.
Can you tell us a bit about what led to your diagnosis? What tests have been conducted so far?
Sue
Replies to "Welcome to Mayo Connect. Yes, a MAC and/or Bronchiectasis diagnosis often leads to a "poor pitiful..."
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I had 2 bronchoscopies and on one of them they were able to obtain a Sarcoidosis sample. I have had 2 sputum tests done over the past 6 months and in the first set of 3, one of the samples grew MAI. On the most recent sputum test 2 of the 3 grew MAI. My new Columbia pulmonologist says she has "great faith" in Columbia's sample that says Sarcoidosis. I just met with her yesterday and she has now told me that I have both Sarcoidosis and MAI. I also have Multiple Sclerosis and she is sending me this week to Infectious Disease doctors to sort out what meds are going to be most suitable for my lung issues considering the meds I am currently on for MS. Thank you for your questions and concerns. I really appreciate your kindness. Warmly, Christy