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New Diagnosis of MAC/MAI & I'm scared
MAC & Bronchiectasis | Last Active: Oct 13, 2022 | Replies (349)Comment receiving replies
@ann0616 Kind of sounds like what I had happen. Generally healthy until a sudden case of pneumonia. Just completely out of the blue. It scars the heck out of you. I am the same age and also live in Wisconsin about 20 miles from Lake Geneva. I am seeing Pulmonary in Milwaukee at St Luke's and had another opinion at Froedert. I was diagnosed in 2015 and started treatment in 2017. My first dose was Nov 30, 2017. I have had several CT's along the way. Each time I have one I go into panic mode because I am scared. I have a CT scheduled for March to see if I can stop the meds. Now I developed a UTI so dealing with that. Nothing like being on and additional antibiotic and trying to find one that is not contraindicated with the BIG 3. (Azitromycin, Ethambutol and Rifampin) By the way I was thinking I may have been exposed when I went to a conference at the Monona Terrace as I was in the small closed room where they had the hot tub for a while.
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@jkiemen Hi Jo Ann. It's encouraging to hear that you're doing well on the meds and are finishing up your round of treatment. Can you tell me how they are testing to see if you are negative for the bacteria? My understanding is that they test sputum on a regular basis (monthly?) and once you achieve your first negative test, they recommend meds for another 12 months. If you can't produce sputum, do they have to do regular broncoscopies to get the culture?
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@jkiemen I am amazed how many people here are from Wisconsin. I have calmed down so much since writing my first post. I am very anxious to see the doctor though and have a plan. I know so little about all of this. Interesting about Monona Terrace. How long were you in the room with the hot tub? It just makes me wonder about so many possible ways that I could have gotten this.