Newly diagnosed with MAI, to start antibiotics or not

Posted by Dianaf @playadelcarmen, Jun 6 12:58pm

Started my journey in 2019, first bronchoscopy found Streptococcus salivarius, 10 days of antibiotics and cough was gone.
After a ct scan, two years later, I was given a vest and diagnosed with bronchechtasis.
Recent bronchoscopy found MAI, and still in progress for mold, maybe. Infectious disease Dr, gave me choices the big three or sputum samples. I am 77, with no real symptoms, I work out three times a week, walk at least twice a week, good diet. I long do I wait to start antibiotic treatments. When I cough up blood, can’t breathe properly, doesn’t that cause lung damage? Trying not to stress out, but it’s a big decision. Should I go to New York to get another opinion, ugh. Input please, thanks.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Sue, Volunteer Mentor | @sueinmn | Jun 7 7:40am

Hello, and welcome to the need to make a hard decision. It sounds like you are on track to a diagnosis of your infection and its susceptibility to medications, which is what ID docs do.
Are you also being seen by a pulmonologist experienced in treating this infection who is regularly monitoring you lung condition - like whether you have nodules or cavities typical of MAC/MAI, and whether they are changing over time?
Here is a tip about how much experience the pulmonologist has in treating people like us - they will recommend daily airway clearance to help get the mucus out of our lungs, and perhaps offer an inhaler or nebulizer to help with the process, or a visit with a respiratory therapist. "The vest" is only one such tool, there are other options like a vibratory device.

Here is a current discussion that might help you - you can connect with some people who have decided to take antibiotics, and others who have decided to wait and watch.
https://connect.mayoclinic.org/discussion/should-i-take-big-3-inhaled-arikayce/

And here is an older, longer discussion by many people who were faced with the choice:
https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/

Remember, based on the stage and severity of your infection, "watch and wait", combined with daily airway clearance, can be a suitable treatment plan for you.

Sue

Dianaf | @playadelcarmen | Jun 9 5:31am

In reply to @sueinmn "Hello, and welcome to the need to make a hard decision. It sounds like you are..." + (show)

Thank You so much, will check out. Pulmonologist oversees my scans. I cannot produce mucus for sputum samples. I feel good, aches in chest, slight cough. No inhalers given. I do have nodules, don’t know about cavities. I just feel they are missing something , scary.

sadies1mom | @sadies1mom | Jun 22 9:10pm

In reply to @playadelcarmen "Thank You so much, will check out. Pulmonologist oversees my scans. I cannot produce mucus for..." + (show)

I don't really cough either. I have to work at it. I was told early on that I must cough. This disease used to be called Lady Windmere's disease. You can read about that - but it has to do with not coughing, not clearing the mucus from the airways. You should immediately get an aerobika device. This is a device that will help you cough. Just follow the directions for using the aerobika. I order mine online and it's a good idea to buy like three at a time. You will use it a few times a day. I think sleeping elevated also helps to make coughing possible. I noticed it's the morning when I can most easily cough and actually clear my airways. I still can't really do sputum samples. My pathology comes directly from my lungs during bronchoscopy. Taking Mucinex daily helps along with NAC Supplements from the health Food store. The more you cough the more you will get the hang of coughing and clearing the airways. Not coughing and not clearing the airways is a problem.