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4 hours ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@lorifilipek Thank you for posting these links. It really is important to exercise. I recently returned to the gym after a 3 month break. I take a 70 minute aerobics class twice a week. I already feel much better. And, yes, absolutely; the untreated need to be monitored on a regular basis!

1 day ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@kathyhg, Hi there. Welcome to our group. The warnings that come with these 'Big 3' antibiotics are scary, which is why I declined them years ago. I declined them because I feared for my liver. I was worried because I liked to drink 2 cocktails every evening. mainly because I felt so bad from the constant, violent coughing. My whole torso hurt from that. Plus, I was trying to escape other stressors in my life as well, and felt that my body was too fragile to take the meds. I was worried that the alcohol plus the meds would kill my liver. I have asked my current dr about the toxicity of those meds, he said they really aren't that hard on your body; just have to stay on top of the vision and hearing changes if any. He believes some people are being overly medicated with these drugs too, so that adds to the confusion. It is all very frustrating that there is no clear definition as to HOW & WHEN to treat this disease. I was diagnosed in 2005 with mac, and did not ever go on the big three. I am not certain that was a good choice as I have watched my lung function go steadily downward year after year. Finally, I sought treatment at Mayo Clinic in 2013 and my dr was able to slow the progression of losing lung function at the rate I was. If you saw my chart graph from my lung function test, it shows that I am almost dead. Mayo was so worried at how low it was; that they did pre-qualifying tests for a double lung transplant. Although I do not feel very ill, or act it; my dr says I am an anomaly. A real head scratcher. According to my lung function, I should not be doing so well. It is all about attitude. I just decided one day that I was not going to be sick any longer. Yes, I have crappy lungs, but I now can walk as long as I want, ride my bike as long as I want, and I live my life in happiness. There was a time when I couldn't do any of that. I cannot advise you on whether to take the Big 3 treatment or not. Treatment should be customized for each individual. You can click on my picture icon to see how Mayo treated me without the Big 3.


@boomerexpert, I hope that you do get to meet @deborahwolf. You will love her. She is a cool gal.

1 day ago · Shower heads? in MAC & Bronchiectasis

@sueinmn Spot on, Sue! I do the same thing as you. I do soak my shower-head in a baggie of vinegar as an added pre-caution since that is where there are the heaviest with colonization.

3 days ago · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

@laura34, Hi Laura. I looked up Ocular TB infection on various ligit sites. Wow, it is so rare that only 1%-2% of the population get this. How in the world did you get so lucky? I am curious, did you do much in the way of world travel in your life? From what I have read, it is not typically in the United States. I am so sorry that you are experiencing this. Please keep me posted on how you are feeling and dealing with this.

4 days ago · azithromycin by itself for post treatment protocol in MAC & Bronchiectasis

@heathert Wishing you good results on your ct scan next week.

4 days ago · on anything for post treatment in MAC & Bronchiectasis

@128128terry11t Hi Terry. I am on maintenance antibiotic therapy post mac. I tested negative for mac since 2014. You can click on my photo icon and my drug regimen will come up. I have been on antibiotics since 2013 with no side effects. I have stayed healthy over the years with the exception of getting pseudomonas in 2016. The tobramycin knocked that out after 30 days. Pseudo can be as tenacious as MAC, so I am on the toby to this day to make sure it stays gone. Antibiotics are necessary post treatment, because the susceptibility to catch it again is high, especially if you have bronchiectasis. The structural damage in the lungs leave one vunerable to germ trapping, and then germ colonizing. I hope this helps.

5 days ago · health at diagnosis in MAC & Bronchiectasis

@ann0616 Ann, I think the majority of us in this group has MAC/Bronchiectasis brought on by acid refux/gerd. It is a common cause of bronchiectasis. Just follow the guidelines for dealing with the reflux. One thing that really helps me to avoid reflux is eating smaller amounts of food at a sitting. It is better to eat five small meals a day, or add in a heavy snack to suppliment a smaller quantity at dinner and lunch. Have you tried this already?