← Return to (MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

Discussion
Comment receiving replies
@ginak

Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a surgical lung biopsy and resection. I was searching for information when I found this site. I've read through quite a few pages and have found a lot of helpful information. I have been seeing a pulmonary Dr since January 2013 (when a CT scan showed multiple lung nodules). I have opted to not start antibiotics since I don't seem to have any symptoms aside from a slight cough and some throat clearing. I was also diagnosed with acid reflux. Should I also be seeing an infectious disease Dr. and I was wondering if anyone could recommend a good Dr in the NYC area?

Jump to this post


Replies to "Hi, I was just recently diagnosed with MAI, not by a sputum test, but by a..."

Here is my advice to you. Yes, you absolutely should be seeing an infectious disease doctor. When I was diagnosed that is the first thing the pulmonologist did - send me to an infectious disease doctor. The other bit of advice is what I was given in the form of a question? Why would you wait until it gets worse to be treated? Also, someone from this forum encouraged me by making me realize that I shouldn't wait because my health/life mattered to my family. I was treated initially by UMASS infectious disease doctors, and now we are temporarily in Tennessee so I go to Nashville. However, I am sure someone on the forum can advise you of a great NYC infectious disease doctor. Good luck! Irene

Thank you Irene. I was only diagnosed this past week and was really worried about the "side effects" of the antibiotics. That's why I started researching for more information. I had never heard anything about this disease before and didn't want to rush into something that might be worse. Also, my pulmonologist said treatment is only about 50% effective, I wanted to get as much information as possible first. I'll definitely start looking for an ID Dr to get another opinion on treatment. Thanks again, Gina

Gina go to ntminfo.org to look for NYC specialists......also check thru these pages....i think specific names were mentioned.Also I think National jewish Health whichis one of the NTM specialists ( along with a few other sites,)has a clinic in NYC ...terri D

Hi Gina, welcome to the forum. Try to read some of the pages if i'm not mistaken they mention ID Dr. My Dr. told me the bacteria is everywhere, from the water, soil, and the air we breath. We are here for you and I hope you can find a good dr. Cila

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!)

Hi Ehliny,What type of treatments is your GERD doctor prescribing? Does your pulmonary and Gastro doc work together to manage your health? Rosie

Hi Ehliny, Thank you. I'll look into those 2. I appreciate all the information. Gina

Ehliny...I think Mt Sinai might ...the NTMpart be a satelitte of NJH in Denver

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

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.