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Posts (17)

Jan 25, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Is it true that MAC sufferers are not supposed to use steroid inhalers for fear of lung infections? Does anyone have any information on this?
thanks!

Jan 22, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Great question, Rosie they do NOT work together although each says he has a high regard for the other. My GERD doctor has written a book that can be found on Amazon. Or Google Dr Jonathan Aviv. I have noticed that whenever my lungs flare up, the GERD does as well, at the same time.

Jan 22, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

That may be true. I’ll look into it. Thanks!

Jan 22, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

My experience is similar to yours – diagnosed by surgical lung biopsy, also suffering from severe acid reflux. I have found an outstanding pulmonary doctor in NYC: Dr. Louis de Palo at Mt. Sinai Respiratory Clinic: (212) 241-5656. I also have a first-rate GERD doctor in Dr. Jonathan Aviv, 210 East 86th St: 212-722-5570. Dr. de Palo is not quick to prescribe antibiotics if you don’t show full range of MAC symptoms. Dr Aviv (and I) believe there is a strong association between gastric reflux and lung disorders. I have a lot of confidence in both these physicians. Dr. Timothy Aksamit at MAYO Rochester had also recommended a NYC doctor for MAC, Dr. Doreen Adrizzo Harris, at NYU Pulmonary Medicine. (Dr. Aksamit is very highly regarded by people on this blog!) Her number is: (212) 263-7951. I never saw her or called her because I found Dr. de Palo and am very satisfied with his treatment. I hope this helps.
Good luck! (This is a long, hard slog – be patient!)

Jan 18, 2017 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

A question for all of you: is there a connection between MAI and GERD?
Thanks! (I have both)

Apr 26, 2016 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

A steady dose of 3 to 5 different antibiotics over a 18 month period can do lot of damage. As long as you are not ill, not coughing up blood, suffering from night sweats, losing weight, and generally feeling awful, most physicians will opt not to treat. It might be worth one trip to Mayo Clinic in Rochester to see what Dr Aksamit would recommend. That’s what I did. (I live on Eastern Long Island). He reassured me I was doing the right thing for myself.