New Diagnosis of MAC/MAI & I'm scared

@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.

@sueinoregon Hi Sue. I am wondering if you have been referred to an Infectious Disease Md. One question I would ask is, is the Biologic for your RA making MAI/MAC easier to take hold. They have the tendency to make it harder to fight infection. I am on the 3 antibiotics since last November. In fact, I just downed the 3 a few minutes ago. So far I am handling it OK. I would make sure and infectious disease MD, your Pulmonologist and Rheumatologist are all speaking.
The stress of chronic illness is pretty hard psychologically and I often feel depressed and anxious and miss my prior very healthy and active life.

Thanks for your input... I have had a cough for many years... but this red tide has REALLY increased the problem. I would like to see it go away for both the marine life and to see if my coughing slows down.

@irene, thanks I've made an effort to explain mac and bronc,, printed out articles etc. most cannot relate to it. If I said I had TB they would have some reference for.it ..and would also run like hell. I've given up explaining myself. Mostly I say OK when asked how I am or sorry, not up to talking right now and I always let people know that I'm not contagious. Flib

Well I am so sorry about that! Big hug!

@flib and I agree with you - people have no reference for MAC like they do for TB. Family kind of listens friends kind of listen -- just a lot easier to say, having a good day or having a soso day, reminding them I am not contagious. Barb

@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.

@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.

Thanks for writing all of this. I have coughed for years... thought it was allergies and sinus related. I have been a runner for 35 years... I used to run very fast but have really slowed down... I chalked this up to the fact that I am now 65 years old. The doctor finally paid attention when she heard my cough and ordered a chest xray and then a CT scan., I , too, have bronchiectasis and except for the cough I feel fine. How many years have you had the cough.. glad to hear you, too, feel well. The doctor advised me not to try the antibiotic treatments. Have you read any concrete reports on mortality with MAC?

@amelia We are the same age. I have been coughing for over 20 years. Many years ago when I was in graduate school, a chest X-ray showed scarring in my lungs and a skin test for TB was positive. Then sputum samples were ordered because of positive skin test. But the test came back negative. The conclusion was that I was exposed to TB bacteria when I was a child. Although I never developed TB, my lungs were scarred because of the exposure. Many years later, my pulmonologist suspects that I got bronchiectasis from scarred lungs and MAC from bronchiectasis. I have not read any report on mortality of MAC and I don't intend to. My pulmonologist and I have decided that I will go to see him every 12 months or as needed if I start to feel worse, to monitor any development in my lungs. But after the big scare of coughing up large amount of blood and spending the night in the ER a few years ago, there has no any such incident since. Each chest X-ray or CT scan continues to show the scarring in my lungs but also show gradual improvement in the cloudiness that showed up when I was first diagnosed with MAC. And as I said before, I feel great and live a very active life. Besides playing tennis regularly, I just came back from a trip out west where my husband and I hiked a 14-mile (round trip) mountain trail with 4,000 feet elevation gain that took us to a height of 11,000 feet above sea level. For this reason, I believe I'm in the clear for as long as my chest X-ray and CT scan do not show worsening condition. As far as I know, if you don't have other underlying lung disease or compromised immune system, it is possible that MAC can clear without treatment. If it's not, you will know because things will worsen. So you'll only worry about it if/when that happens. I'm borrowing @windwalker Terri's motto to wrap up my answer, "Don’t let the worries of tomorrow steal from the joys of today". That is exactly what I live by but can't verbalize it as well as Terri does. So if you are feeling fine, don't let this thing called MAC steal your thunder. At our age, slowing down is a given.