MAC: Anyone ever felt pain from MAC? So many questions

Any suggestions for how to lay flat and still without coughing up phlegm for an hour (MRI/MRV with and without contrast)? This test is unrelated to my Chronic Asthmatic Bronchitis. But I am scared of choking while I wait another few months for my appoint at NJH — thanks for any suggestions.

I can certainly relate to your problem. There are a few things that work for me. However I have Bronchiectasis and not Asthmatic Bronchitis. Not sure if what I do will work for you. Since most of my productive coughing happens in the late morning I try to schedule the MRI for early morning or afternoon if possible, and I will also do my daily postural drainage and manual chest percussion a good hour before the MRI if at all possible to get up most of the sputum. And I know you are not supposed to suppress a productive cough, but I will take a regular dose of codeine cough syrup about 30 minutes before the MRI, on an empty stomach so as to get quick absorption. You will have to talk your Dr into an Rx for that. Sue @sueinmn may be able to advise you better with this. Good luck, Bill

Incredibly nice of you to share your prep routine. Makes me feel less weird asking. I don’t yet have the procedures you mentioned. I really need a better pulmonologist and MAC testing lab. Btw— my husband and I have had 7 standard poodles over the years. …

When we eat out, we are very selective. I avoid salads and choose only cooked dishes with cooked vegetables. I used to eat a lot of lettuce, uncooked spinach and herbs. But now, I avoid all of them unless cooked. I also avoid fresh strawberries and mushrooms.

Hi Jennifer, I just joined. Been battling lung issues since January and finally diagnosed with MAC after bronchoscopy. My pulmonologist started me on the 3 antibiotic today. Started me slow, taking just the azithromycin today, I will add another antibiotic Monday and finally the third Wednesday and will be on them all moving forward. I’ll be honest, I’m scared and all I know to do is pray and let God take the wheel. I appreciate this forum and the kindness and support that I’ve been reading. It has given me hope and less anxiety about this dreadful infection. God bless you Jen and everyone else on here.

Hello and welcome to Mayo Connect. Jennifer has not been active here for a while, but we have many other helpful members.

The diagnosis of MAC and Bronchiectasis can be unsettling, as few of us have ever heard of these before.
Here are some great places to begin reading, just click on the links
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/
At first it seems we have more questions than answers. Along with the other members, I am ready to try to answer whatever your concerns are.
I hope this diagnosis and medication start you on your healing journey.
Did you doctor talk to you about airway clearance as one of the ways to get healthy again?
Sue

Hi Irene, do you have a contact info for the Arikayce study please? Also, any contact info where you apply for the grant to get it? I may need it. Thanks, Magdalena.

Magdalena yes I do. I’m dealing with a my GSD Simba this morning as he has an ear infection , but I will get back to you later today with that information. Irene

The Assistance Fund 8427 Southpark Circle Suite 100 Orlando, Florida, 32819. The website is http://www.tafcares.org. I hope you will be as fortunate as I was in receiving help from them. I never could have afforded Arikayce. We are rich in children not money. Blessings, Irene

Hello, I’ve experienced much pain with MAC. Like a tight band around rids and severe back pain. Just a heaviness in my left lung in back now. Also, have felt things moving in my back. My ID Dr says pain isn’t a symptom of MAC but my primary care Dr knows patients that report pain