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Nebulizer and saline treatment with daily exercise
MAC & Bronchiectasis | Last Active: Jan 8 9:46pm | Replies (52)Comment receiving replies
I was convinced and took them daily for a year I felt absolutely awful on them I had daily diarrhea, stomach ache and sickness so many symptoms to go on about. None of my local GP's can treat me correctly as they do not know anything about the disease. I'm off my medication now two weeks. Today was the first day in a year that I could take my dog for a walk in the forest I got in 10k steps I've not done that many steps in a year because of the horrible side affects. Many get on great with the medications I just wish they worked for me. I'm gonna stick to my daily neb and walking when I can. I've yet to tell my consultant in two weeks I no longer take them. I cannot see that appointment going to well. Best of luck and I hope you will feel better with your decision
Replies to "I was convinced and took them daily for a year I felt absolutely awful on them..."
I lasted 6 weeks on the big three. I was treated by a pulmonary doc but I don't feel he knew much about MAC and the different options on how to take the meds. He never even brought up the option of airway clearance. The most hurtful thing about it all was that he never offered to refer me to another doctor--pulmonary or infectious disease specialist. It was through this forum that I was guided to a doctor who knew how to move me forward. I've been on this trek for close to 3 years--with Pseudomonas being my primary problem. Otherwise just doing airway clearance and keeping my doctor informed of any changes I see in my symptoms so he can make any needed adjustments. I say keep reading, learning and reaching out for help. You'll find what works best for you. God bless you. Faye
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Hi I was diagnosed with MAI and bronchietasis last August. I really have no symptoms like coughing or feeling tired. My pulmonologist said she would want to start treatment but she wanted me to see an ID doctor and have him decide. When I saw him he said he would not put me on the meds because I had no symptoms. He said exercise and airway clearance is the most important thing I could do. Then he would do. CT scan every six months. Sometimes you can clear this by doing these things. Right away I started walking 5 miles every morning 7 days a week and clearing my airways with my vest . I do that twice a day each time 20 minutes. So far I feel great with no effects at all. I feel so good that I have to remind myself that I have it. I even had another CT in February where everything remained stable.This has so far worked for me. I do not want to take the antibiotic treatment if I don’t have too. I will push myself to continue what I am doing. I strongly believe this has made all the difference in how I feel.