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.

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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

REPLY
@sueinmn

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

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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.

REPLY
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