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

RE: Pharmacogenetics or PGx
In response to Julie's (@jewel8888) mention of "DNA testing for best medication and susceptibility".

Julie is referring to drug-gene testing, which is also called pharmacogenomics, or pharmacogenetics. All terms characterize the study of how your genes affect your body’s response to medications. The word “pharmacogenomics” is combined from the words pharmacology (the study of the uses and effects of medications) and genomics (the study of genes and their functions). You can read more about it here: http://mayocl.in/1FygJlM and here: http://mayocl.in/2dxcniz

@dawn_giacabazi, one of our volunteer patient Mentors, and @kdubois speak about pharmacogenetics on Connect. You may wish to read their experiences here: http://mayocl.in/2j8LEhw and here: http://mayocl.in/2jBwfHy

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?

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

I think the percentage is a lot higher Gina. I had just started retirement after 43 years of teaching! I had never heard of it either. I try to stay positive and keep putting one foot in front of the other. This forum offers great support and knowledge. You are not alone. Irene

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

Thank you Terri, I'm going to check those out. I'll also continue to read through these pages to see if I find anything.
Irene, I'm still teaching. I have another 2 years to go until I retire. With all the dust at work, and being in an old school building, I was wondering if that could have been where I got it. Does anyone have any ideas where they might have gotten in.? My Dr said it's a bacteria that's "every where" and I've read some people were saying hot tubs.
I hate to say I'm glad I'm not alone. It was very disheartening when I got my diagnosis and no one I spoke to had ever heard of it. I was very hopeful when I saw this forum and read about so many other people. I wish none of us had it but I'm happy to have found a place to talk about it.
Thank you all.
Gina

Interesting! I have wondered that as well since I spent way more time at school than at home. All the schools I worked in were pretty much "sick" buildings. My family has wondered as well and is convinced I got it at the dentist's office as I had extensive dental work, and it is in aerolized water. It requires a susceptible host Gina, and I think for the big picture where we got it isn't as important as what we do after the diagnosis. And, we need to do our best not to let it define us. Two more years! God bless you real good! Irene

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!)