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

Good idea Sue. I'm not in North America (I'm in Australia), But I will start doing it in the next couple of months anyway. We'll see
First I just need to get a bit more over the latest side effects making me sick and tired - laugh. Then I will definitely do it
Annie

Yes, I would highly recommend using both and also including the Aerobika at the same time, 2x daily. I was diagnosed a year ago, and have been able to get rid of most of the bacteria without any antibiotics . I went to National Jewish last November and Dr Huitt told me it was possible to get rid of the bacteria (for some people) with really good airway clearance. My last culture results from February show that I only have 10 colonies and it had been as high as 200. National Jewish said they do not usually treat if the colony count is under 100. I would be very diligent in doing airway clearance.

also like and inspired. what do you do for airway clearance? How often .
Are you using a saline solution with a nebulizer? Thank you

I use a nebulizer with 7% 2x daily. When I nebulize I also use the vest and the Aerobika (takes about 30 minutes each time). Then usually one other time (late morning) I use just the Aerobika for 10/15 minutes. I do have bronchiectasis but the Dr at National Jewish thought maybe I got NTM from reflux so I also follow that diet best I can...along with sleeping on just my left side and not drinking/eating 3 hours before I go to bed. What are you currently doing.

I also use the vest twice daily (30 minurtes each, per pulmonologist's instructions) for bronchiectasis and pseudomonas colonization, along with the Aerobika and nebulized 3% saline solution. Since I have been doing this diligently, I have avoided any exacerbations. Before I had been on PICC line and home health care with various antibiotics for numerous successive treatments. The doctor says we are keeping the pseudomonas at bay. Ironic, since I am doing all the work :), and it is a lot, as using the vest is tiring for me. I have become a believer, however.

My pulmonologist said that I have bronchiectasis and MAC. So for 4 months he has me on a nebulizer two times a day. One is a saline solution 3% and budesonide .5%. I also have the aerobika that I use when I feel a cough. What my schedule is to walk for an hr in the morning around 6am, then do an hr of yoga. I find the poses that are inverted to release the most phlegm. Then I have some breakfast. Then I begin the nebulizers that takes close to an hr. Its all around 11-11.30 before I do anything else. Then towards evening I try to have dinner at 6pm and then being the second round of my nebulizers. I try like you to stop eating and drinking 3 hrs before going to sleep. I probably have that threat of acid reflux. The Dr. did recommend going to National Jewish Health for the best treatment. Did you go to National Jewish Health?
You are so helpful. Thank you.

thanks for your encouragement. Im just using a 3% saline solution but I will see my pulmonologist in a month and see where my lungs are.

Have you tried saline 7%? for me it was a huge difference from the 3%. Also using the Aerobika when you use the saline is very helpful. I get up at 6 and am totally done by 6:30-6:45AM. I work full time so I try to get the second treatment done between 2-4.

Thanks Pop55, I am learning a lot from the Mayo Clinic Connect and members like you. I will see the pulmonologist in June and will ask about the 7% solution. I really am being self taught in that he didn't give me much information. I seem to be doing ok for now but cant really compare treatments here in Hawaii. Thank you

I started doing this after hearing about it on this forum and got instructions on YouTube.

Are others doing this as well?