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Diagnosed with MAC but not being treated

MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (100)

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@healthybon

KArissy , I’ve read your blog many times I wanted to reach out to you… It gave me hope.
Do you cough up phlegm? I was just diagnosed with Mac a couple months ago and a local infectious disease doctor wants to put me on the big three which I’m not doing. I have an appointment coming up at the NATIONAL JEWISH HEALTH in Denver Colorado to get completely tested… They are supposed to be the top place for Mac. Do you still not get any symptoms at all or do you get a cough with mucus at times and do you nebulize? Do you get tested consistently? Thks Bon

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Replies to "KArissy , I’ve read your blog many times I wanted to reach out to you… It..."

Bon I have never been able to cough up phlegm. I have tried and even the doctor has had me inhale things and I can not. He told me never to force it because I would do more damage to my lungs. I do my vest twice a day and huff cough throughout the day when needed. I also walk 5 miles every day. My ID doctor gave me hope to when he told me that he had many patients with this that have not ever taken the antibiotics. I am very strict on my airway clearance and exercise. From everything I have read is that you can’t get it out of your lungs and that you can be in remission but it usually returns at some time. The side effects from all those antibiotics seem to cause so much damage that by the time you take them you’ve got more medical problems. I also know one woman who lost her sight and hearing. She now sits in a room and cries. This is the worst case I know but I am not willing to take that chance. I do not want to scare anyone but that is my reason and I know other people have their reasons for taking it. I have no symptoms to this date and was diagnosed August 2021. If it happens that I start having any symptoms I will try everything and anything other then antibiotics but that’s just me. I do not nebulize but would definitely try it if needed. I don’t know if I have left out any thing from the questions you have ask. But this is my feeling on this awful disease. I was just told that I have very very early signs of macular degeneration which my mother and my aunt had. So of course, I was lucky enough to get it from the family. I don’t know yet how bad that will be down the road and I am worried to death about losing my eyesight. Even that way. So I do not want to take chances losing my hearing also or my eyesight. If I can answer any other questions for you, I will definitely be happy to , I hope this answers all the things that you were asking me about and if I left something out, please let me know because I will be more willing to answer. Thank you and God bless and oh yes, I pray my little heart out to I believe strongly in prayer .

Yes I get tested every 6 months and have a CT and breathing test done, Everything has remained stable and not progressed.

That was also diagnosed with Mac a couple months ago I'm only on two of the antibiotics and I have a cavity in my long how about 3.7 cm. I'm on azithromycin and ethambutol and he just prescribed the inhaler that's really expensive. I don't have any symptoms at all. I only found out I had it because I woke up all night and hacked up some blood, quite a bit of it and so I went to the hospital they did a CT scan where they saw Mass on my lung and thought it was cancer. After testing and testing they realized it was actually a Matt cavity filled with whatever it gets filled with so it looked like cancer. Those were scary times! I don't have any problems with the antibiotics. I take them in the morning sometimes I don't even eat and I don't get sick at all. I hope everything goes good for you!