Diagnosed with MAC but not being treated

I actually had a fall where I hit the side of my bed and felt like I had injured my rib cage. I went to the doctor and asked her to do a CT scan because I had thought that I had may be broken a rib. I was surprised when the CT scan came back with bronchiectasis and Micro Bacteria. I then saw several doctors who did many many blood tests and found nothing. They could not find a cause for any of it. I then reached out to Cedars Sinai in Los Angeles, and found a Doctor who did a scope into my lungs, and then came back with the results of MAI. I had no signs that would have related to me having this and of course I have no idea how I got it. I to have always been extremely healthy never having any issues and watched my diet . It was just by coincidence that it was found and the doctor said it was very good that I found it early. The soreness from my rib went away, but it was the reason I had the test done and found all of this.

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

Nice to meet a kindred. I found out about my MAI in a very similar way last year. I had a syncope episode, out of the blue, where I hit myself hard in the back. The pain was so bad that I thought I cracked a rib! I went to see my PCP and she ordered an x-ray which showed bronchiectasis and a mycobacterial infection. Then the CT scan confirmed this. I felt really lucky to find out early. I felt it was my body asking for help, hence the syncope.

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 .

Sounds like we do have something in common even both having MAI and finding out the same way. Yes I am glad that I found it out early if in fact, I had to have this so that I could jump on the airway clearance and try to reduce the disease.

This thread has been very interesting. In Aug. of 2011 I went to the Medical University of SC for evaluated to be a live kidney donor to my sister-in-law. I was there for two full days getting all types of testing. A CT with contrast was one of them. After reading some of this post I went back to the findings from the CT. Findings suggestive of mild lingular bronchiectasis as may be seen with MAI. I have been thinking that MAI was something like a MRI. Oh my goodness they were talking about MAC. No doctors at MUSC went over any of my testing, they were only concerned about my kidneys, which I was not a candidate. All of my records were sent to my PCP at that time, he sent all of them to me because it had been so long since I had been seen there. All these medical records are valuable information and since none of my doctors had reviewed them, pieces of the puzzle are coming together. This means I had MAC since 2011 and never knew it. Another test had to do with my liver and it was noted on the report that a liver transplant doctor at MUSC had suggested they give me a copy of that report. Eleven years later all of this stuff is starting to come together, I shall be reviewing and researching some of this and my lung doctor and I will be having a long discussion and maybe my PCP as well. MAC had never been confirmed with any of my x-rays or my CT. Only from my lab test of my sputum. The test was repeated before they suggest any treatment. The first test in the smear, there was no bacteria found only in the culture. The second test the smear had rare 1 +, and again the culture was positive. Very interesting here, it is not by chance that I found this site. Thank you.

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

Do you live in Denver and go to the clinic there or do you mail your sputum test to them or how do you work that? Do you get your scan locally?

No, I live in California and I go to Cedars Sinai in Los Angeles. I do not give sputum samples because I cannot get any sputum to come up. I also get my CT scan there when I go there. I have very mild bronchiectasis which doesn’t cause me any problem at all. My infectious disease doctor said that at my age he would not start me on the anabiotic’s, especially because of the way I felt about the side effects. he told me that the bacteria would never be totally cleared, and that the chances of it coming back, even if treated would definitely happen at one point or another. I am 72 and unless I get totally taken over by this bacteria, I refuse to take the anabiotic’s. I do not have any cavities I have nodular. I respect people who think different than me and want to go through the treatment. I have a lady who lives close by who also has MAI and has been treated and now her kidneys are bad. I would rather have quality of life instead of quantity, so this is the way I am handling it.

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!