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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
@lauraadam2425...It's frustrating to work so hard and get no results. I use the nebulizer 2x a day with asthma medications and albuterol, 3 nebs in all. Then I use the flutter valve while doing postural drainage. (see youtube) Mucinex and extra water help get the mucus loosened up and the drainage with flutter valve helps it get out. My pulmonologist noticed the bronchial tubes close up when I cough. It took 14 months of the Big 3 to kill the MAC. Don't give up. Think of it as Non-tubercular Mycobacterium. Thank goodness we don't have to stay in sanitoriums!
hang in there. Some of the other members use 7% saline. What do you use?
Replies to "@lauraadam2425...It's frustrating to work so hard and get no results. I use the nebulizer 2x a..."
That is so great that you are MAC free after 14 months! I have been on the Big 3 for 1 month and tolerating it well (I know it is still early) but did you experience any negative effects? Also, do you have any tips for minimizing my exposure to NTM? I of course am doing all the usual precautions and I just sent in a sample to test my tap water. It is hard to find something to drink when I go to a restaurant because I can't drink their water or have their ice cubes. Any suggestions since you are so far ahead of me in this fight.
Hi, went to my infectious disease Dr and he said 2 cultures ago only 1 out of 3 grew anything and it wasn't the one they were treating me for. However the latest 3 aren't growing anything. If the next 3 are negative I will start my last year on the big 3 antibiotics as long as they stay negative. Have been diagnosed since Feb 2022, on big 3 since 8/22. Keeping my fingers crossed. Have side effects but worth it if cultures finally come back negative. He said I can stop the nebulizer since it wasn't working but if cough gets worse have to start using it again.
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I use 7% sodium chloride and 2.5 % albuterol 2 x a day with the flutterer each time. Still nothing comes up and it just makes my cough worse. But after all the replies I have gotten will keep at it and see what happens. Thanks all!