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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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@lorifilipek

@ameliar I've had a cough when I wake up in the morning for at least a year, maybe much longer, with minor coughing once in a while during the day. Like you, I thought that the cough was from post nasal drip. However, in late August a year ago, I coughed up some blood while lap swimming. I went to the ER and was “diagnosed” with walking pneumonia. A CT scan revealed some tree-in-bud in the middle lobe and a few nodules. I was put on levaquin, but within 3 days, my left extremities became numb and tingly so I was switched to Zithromax for a week. It didn’t seem to do anything, because the minor cough persisted. I saw a pulmonologist because the CT scan called the nodules “spiculated,” which typically means cancerous. The pulmonologist practically laughed me out of the office, saying it wasn’t cancer and I was perfectly healthy. Six months later, I had another CT scan because of the nodules. It showed similar results ("redemonstrated focal bronchiectatic changes" but little change in nodule size). The pulmonologist then suggested I do a sputum test. I cough very little, if any, sputum, but was able to get a very small sample last month that tested positive for MAC.
I am otherwise a healthy 70-yr-old, who walks a few miles almost daily and loves working outside on our 2 acres. Until my diagnosis, I was swimming laps 2x/week, which, ironically, I was doing to help my lungs. (About 35 years ago, I worked in a government chemistry lab and had routine health checks, including a lung test that suggested I had low lung capacity. However, at the pulmonogist’s last year, I had a pulmonary function test that came out 100% lung capacity for my age.) After reading about MAC, I've stopped lap swimming and gone back to jogging on my prior swim days. (I used to jog routinely.) I have an appointment with an infectious disease doctor at the U of Michigan Hospital for next month. I’m very sensitive to antibiotics from my sinus infections and have no interest in taking them unless I get very sick without them, so I plan on just continuing to exercise for the present and have a CT scan annually, or as recommended by the doctor.

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Replies to "@ameliar I've had a cough when I wake up in the morning for at least a..."

@lorifilipek Sounds like you have been taking good care of yourself. I share some of your experience in that I have been diagnosed with MAC but am otherwise very healthy and active. I play tennis a few times a week all year round for the past 15 years. I have always coughed for the past 20+ years. Because I had been allergic to all kinds of things, my doctor and I just chalked it up to be the effect of allergies until one day a few years back, I coughed up a large amount of blood out of the blue. That was when MAC was diagnosed. I have chosen to not take the antibiotics that are prescribed for MAC treatment and opted for "wait and see" strategy out of the consideration that the antibiotics may or may not be effective for MAC but these drugs could potentially do a lot of harm to the internal organs as well as eye sight and hearing. My pulmonologist supports my decision. So far I have not coughed up blood anymore and have no trouble with lung capacity or fatigue. Other than the diagnosis that is printed in black and white in my medical records, I feel like a healthy person. I'm still coughing with excessive mucus sometimes. But that is to be expected because of my bronchiectasis, which is most likely the cause for my getting MAC. Based on your description of your current physical condition, I think you have made a very good choice. Thanks for sharing your story with us.