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New Diagnosis of MAC/MAI & I'm scared

MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)

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@ethanmcconkey

Hi @cindyrue you may have noticed I moved your post to this existing discussion on new diagnosis of MAC/MAI so that you can read what others have said and how other have approached this disease.

I wanted to thank @egayle187 for responding to your post, and also introduce you to fellow members @windwalker @jkiemen and @margiebanks as they can offer support for handing these lung disease diagnoses.

Back to you @cindyrue what has your doctor said about the disease attacking your bones and digestive system? And as @egayle187 asked, what has your journey been with this disease?

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Replies to "Hi @cindyrue you may have noticed I moved your post to this existing discussion on new..."

When i ask dr about the bones and digestive system, he says that is not what i do. I only do lungs. you need to talk to your pcp. It has been a hard journey. I started getting sick 2 years after my only child died. i exercised 4 days a week and started getting dizzy at classes and out of breath. I was diagnosed with just infections for first year til i got pneumonia and shingles. Then I was sent to specialist and he did sputum tests and found out it was micro bacterium avium intercellulare. I was then sent to a disease dr who made me go thru the tests again and i tested positive again. She then put me on 3 powerful antibiotics for almost a year, did blood work every month and then another ct scan to then tell me the meds did not work. She wanted to put me on more meds, but i declined. I suffered for months with stomach cramps, diarrhea and just so sick on the meds. So now i am with lung dr who says every 6 months. lets do another ct scan and talk about it then. I feel like dr does not care. I left his office last week crying.