Jae, We have a support group who meets once a quarter at St. Joseph's hospital in Atlanta. We have a vast amount of information which is necessary with this illness. Our group also includes a doctor who has NTM. Send me a private message if you are interested.

@loveblue Hi! When is the next quarterly meeting?

@loveblue, Would love to hear more about the in person support group in Atlanta. Can you tell us more about it?

PS: please note that I removed your personal email. We do this so that you don’t receive unwanted spam and to protect your privacy. We recommend using the private message function to share personal contact information.

That Is wonderful to know! Thank you so very much. I will send u a PM right away.

I am new on this website. I was diagnosed with MAC earlier this year. I too had a lung nodule biopsied and sent to CO for confirmation. I have nodules in both lower lungs. (It was accidentally found in a CT I had for another issue.) I had a series of sputum tests and a few months later I had another CT scan that indicated it was no worse and slightly better so no antibiotics at this time. I will have another CT in January to see if there's any change in the nodules. The doctors here had no idea where it comes from because their info indicated could be from air, soil or water but I doubted that so after much research looking at websites like yours, I made the conclusion that it has to be from my GERD. When I had last visit to lung dr, I expressed my thoughts to him and he readily agreed it was probably from aspirations due to GERD. I recalled many times where I coughed a lot at night almost choking at times. Not realizing it was from GERD. I even have trouble with choking when I eat. Have to keep chin straight. Wondering if that's because I have a damaged esophagus?? The big problem is these lung drs are not educated enough on preventing future issues with MAC disease. For instance, I found a website that said: (1) Do not eat 3 hrs before bedtime; (2) Do not drink more than 6 oz at a time; (3) Do not sleep on right side and I'll add another which I think is extremely important - sleep elevated. My lung dr gave me "0" advice on preventing my disease from accelerating. I think it's very sad that lung physicians are not being educated on what and how to treat their patients. The only advise from the two lung drs I saw was I had MAC disease and how to treat it. Nothing on further preventive measures. Very sad.

Barbara, I have a damaged esophagus, perhaps from a large pill that got stuck in my throat. A couple of times a year I have a procedure to stretch my esophagus and that helps with eating and coughing. It sounds awful but it isn't. You get quite a nice drug that last for just a little while after the procedure and I have never experienced pain. You will want a doctor with a lot of experience. A small balloon is put down your throat and opened slowly and then left for a bit.to expand the esophagus. It's worth looking into because it does make a difference. I had gerd but eliminated the recommended foods, including coffee and I don't eat after six. I sleep on two pillows in comfort. Hope things get better for you.

Welcome... Our stories are almost identical except my first doctor insisted I take the BIG 3! They truly nearly killed me! I tried twice !
List 40 pounds! Changed doctors!
Truly stated every thing you listed . No meds! 3 years later doing ok! GERD getting under control!
Keep on keeping on!

@barbara1948, Hi Barbara; nice hearing from you. I have GERD and have had trouble swallowing also. I had an endoscopy where they discovered I had a narrowing of the esophagus. They widened it with a small balloon type thing and said I would need it done every few years. That was three years ago, and I can tell that I need it done again. It feels really good afterwards to swallow so much better. They put you in a twilight anesthesia for the procedure. We have a GERD topic listed on the Discussion Board. Let me know if you have trouble finding it.

Hi cindyrnc, my pulmonologist said I should not use Humira because it can make my immune system really weak. I struggle with pain every day and it’s so hard to deal with flare- ups. I just use over the counter meds and it does not help much. Do you have side effects? What about infections? Any help will be appreciated! Thanks Rita.

Kathy, I just started the treatment about 1 1/2 months ago. My experience is very much like Kate's at this point. Very tolerable up until now. I'm hoping it continues along this line. Like you the cough is sometimes almost unbearable and can be so embarrassing. I'm hoping this treatment works and helps with my overall health and breathing. I have had copd for well over 20 years but was getting along pretty well up until a year ago when I had lung volume reduction surgery and the MAC was discovered. I have tried to tell the doctors for years that I felt there was something else going on other than just the copd going on. I think the MAC may be what it was I just didn't know I had it or ever heard of it.

Good luck, give it a try if it becomes a problem you can always stop the treatment.

John