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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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@cindyrue

Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did 3 drugs for 9 months and they did not help. Very sad about doctor just calling it bronchoetiitis - I know I spelled words wrong. I believe this disease is attacking my bones and digestive system.

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Replies to "Was diagnosed in 2015 and now just being watched - ct scan every 6 months. Did..."

@cindyrue...I'd go with your gut on this one. Your intuition that there is more damage than just the bronchiectasis can give you the energy to make changes.
You need a thorough testing and diagnostic experience that National Jewish Hospital or Mayo Clinic can provide. If you are being followed by a pulmonologist, s/he is only concerned with the lungs. Get copies of all your records and CT scans so that whomever you consult will have all the information.
More info on your symptoms would help us help you. Could you describe your journey and symptoms?

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?

@cindyrue Hi Cindy. It is rare, but mac can spread to your digestive tract and other areas. Are you addressing this with your physician? Are you seeing a good and knowledgible pulmonologist and/or infectious disease specialist?