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Participant summary of NTM webinar 9/14 with Dr. Kevin Fennelly
MAC & Bronchiectasis | Last Active: Sep 21, 2017 | Replies (21)Comment receiving replies
Terry - you did an excellent job in highlighting all the points.. the one thing that you wrote: " I believe that he said that there is no evidence that the bacteria remains dormant and then resurfaces ???" was in fact what he said, which I found very interesting, and that if one does begin to cough again, it is more likely another bacteria.... I would conclude that any of us with MAC treated with the 18 month Big 3 still has a good chance of picking up other bacteria,so clearly we have to be vigilant. Pamela
Replies to "Terry - you did an excellent job in highlighting all the points.. the one thing that..."
Barbie, Glad the information was helpful even though confusing. There were a few points in the conference that seemed contradictory to what we've been told or thought we understood, but that just goes back to how much isn't known about this disease. I wish you good luck with your knee replacement surgery. Linda M
Wishing you a speedy, full, and uneventful recovery. Terry
A big thank you to Linda and Terry!
Best wishes for your knee surgery. Before the nebulizer saline was passed for use here, it showed lots of success in Europe.
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Terry and Lindam -thanks to both of you for all the information about the MAC webinar - the charts were helpful and interesting. It is interesting that there is no evidence that the bacteria lays dormant but that is what most of us have been told. I took the Big 3 for a year and thought I still had it but a bronchoscopy showed I did not but did have another bacteria. After several people talked about the horrible sweating, I really remembered that and then realized it had stopped. Whenever we have a weak immune system from an exacerbation and/or a lot of prednisone, we are much more prone to get other things. I was first diagnosed with asthma almost 25 years ago and have taken advair 50/500 for many years after other inhalers. One doctor thought It was always COPD and not asthma. My current pulmonary doctor said it is bronchiectasis and that I have probably had it for many years. My lung capacity is in the low 40's. I was coughing up crude and coughing all day until I started the 7% saline about a year ago. I have tried other inhalers that have not helped and was on 5 mg. of prednisone daily for a few months which did not seem to help either so I stopped. My doctor had also suggested a low dose of daily antibiotic which I said I did not want to do. The antibiotics just kill the good bacteria in your gut and mess you up. I have taken probiotics for many years which I believe help me. I get short of breath easily and have been on two liters of oxygen at night and when I exercise for two years now. I am having a knee replaced next week. It was supposed to have been done four years ago when I first got MAC and was on the Big 3 so my orthopedic doctor would not do the surgery. Since using the 7& saline I have been better and my pulmonary doctor and heart doctor (a-fib) said I could have the surgery. I just pray my lungs do okay. Well I've gone on long enough for now.