MAI is a lung infection

Dear Dr. Roach: I’m a 65-year-old woman in relatively good health. I’ve been diagnosed with a nontuberculous mycobacterial lung infection (mycobacterium avium-intracellulare, or MAI) leading to bronchiectasis. I’m taking three antibiotics (rifampin, azithromycin and ethambutol). I’ve been referred to specialists in both infectious diseases and pulmonary medicine.

After several CT scans, the doctors have determined that I have significant damage to the middle lobe of my right lung and to the top of the upper lobe of the right lung. The infectious disease doctor recommends surgery to remove the middle lobe and the damaged area of the upper lobe, because the damage is so great that the antibiotics cannot reach it and therefore cannot cure the disease (because there is insufficient blood flow). It looks like my choice is to either have the surgery or stay on antibiotics for the rest of my life. The surgery gives me a chance of a cure, but no guarantee. Obviously, this surgery is not to be taken lightly and is frightening to me. Your opinion would be very much appreciated. — L.B.

Answer: The mycobacteria are a class of infectious organisms, the most medically important of which is Mycobacterium tuberculosis. However, several others can cause diseases that somewhat resemble tuberculosis.

The one you have, MAI, seen most in women in their 60s and 70s. In fact, the specific entity of right middle lobe disease with bronchiectasis and scarring, usually from MAI, is called Lady Windermere’s syndrome. It’s named after a character in an Oscar Wilde play. Treatment usually involves antibiotics, which may take years to clear up the infection.

I spoke with an infectious disease specialist with more experience than I have (my patients with this entity all had done well on the same antibiotics you are taking), who said that surgical treatment is not unusual.