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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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@ameliar

Thank you for your input. I have been coughing for years. About 2.5 years ago I was told that I had pneumonia... I did not believe it. I always felt like the cough was from a post nasal drip. The DR. put me on levoquin for the supposed pneumonia... the cough went away. It is only the last few months that the cough is back. We have a really bad outbreak of red tide here in FL... I think the pathogens in the air caused stress on my lungs which brought the cough back. I am in the process of doing sputum samples and immunoglobulin tests. After that pulmonary function tests. I have been a runner for 35 years... I still run 5 miles a day. The Dr. says it is the best thing for me to do to keep my lungs strong. I appreciate your encouraging words!!

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Replies to "Thank you for your input. I have been coughing for years. About 2.5 years ago I..."

@ameliar, I read an article on NTM and Florida! I also live in Florida and I try to avoid the beaches since the red tide has spread all over. I do think we need to be cautious here in Florida with Mac disease. I hope you feel better soon and whatever treatment you decide works well for you. Rita

@ameliar I was reading about the red tide several weeks ago. The articles all pointed to it being the cause of the 20% increase in pulmonolgy visits. It had suggested that people stay indoors as much as possible until the red tide is over. You may want to buy a free-standing air filter. I have one that I run in my bedroom during heavy pollen days. It has a hepa filter. That may help with air quality. It is sad about the loss of marine life.

@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.