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Should 4+ Pseudomonas be treated?

MAC & Bronchiectasis | Last Active: 1 day ago | Replies (115)

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@sueinmn

Hello, and welcome to Mayo Connect. As you may notice, your post has been moved to an active discussion between people dealing with pseudomonas and its treatment. You might find it helpful to read through some of the posts to learn what treatments others have had.

The diseases we primarily discuss here, Bronchiectasis, Mycobacterial infections (often abbreviated MAC, MAI or NTM) and pseudomonas, are fairly rare and it is sometimes hard to find good information about them. Even many doctors are unfamiliar with them - my own fantastic, experienced primary provider (PCP) referred me immediately to a pulmonologist when I was diagnosed 4 years ago. Even some pulmonologists have little experience treating our infections.

May I ask a few questions so we can get to know you a bit better?
When you say you are dealing with "this", can you describe your symptoms, diagnosis, and when you first sought treatment?
Do you have asthma, COPD, emphysema or bronchiectasis? And is your doctor or pulmonologist?

I hope you will share with me and the group, so we can offer suggestions about treatments and lifestyle changes that have worked for us.
Sue

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Replies to "Hello, and welcome to Mayo Connect. As you may notice, your post has been moved to..."

So about 6ish years ago I got really really sick, couldn’t breathe, non stop coughing, they kept saying I had an upper respiratory infection or bronchitis. Finally I had enough and went to an emergency room late one night and once again they sent me home with bronchitis. The next day they said the X-ray technician found pneumonia and I was prescribed an antibiotic. I got better and then all of a sudden not better. I started having breathing problems and panic attacks due to the problem breathing. I got all the tests for lung function and everything was normal. All I remember is being sick and then not sick, and then something else would happen. It was like on and off always routed in my lungs. I was diagnosed with bronchospasms and I was told I had mild asthma even though my lung function was normal. I was given inhalers etc. I had a chronic cough that never went away the whole time. About 3-4 years ago I started coughing up big mucus globs, grayish and sometimes gray-green. I would spend most of the time in front of a sink or toilet just wracking my body heaving these globs from my chest. My chest rattled all the time and then I also started getting continuous sinus infections. I was at my breaking point and finally had a virtual visit with my primary in 2020 and told her I couldn’t function daily the way I was. I was constantly getting sick, constantly coughing and constantly running to the bathroom at work to heave up the mucus rattling in my chest. She finally set me up with an X-ray and sinus scan. There was enough in the scans to refer me to ent and a pulmonologist. In November of 2020 they did the lung function again and once again normal. But they could seem was struggling and heard the wheezing in my chest and the X-ray showed nodules and opacities. Then the pulmonologist had me do the sputum samples, I did so many 🙁 after the initial infection was found we did course of antibiotics including ciprofloxacin and levaquin aNd I would feel better during the courses and then get sick as soon as it was over. Sputum sample, shows infection, next course, then get sick again. My pulmonologist did all available tests to see what could be the route of the problem, even cystic fibrosis sweat test and everything was normal. He decided to put me on the antibiotic Azithromycin daily and see how it went. At first I felt like I got some of my life back. The night sweats still happen and it’s hard to sleep, but the struggle to breathe got better, the sputum was still there but I wasn’t always heaving it up and rattling. The color of the sputum changed to a milky white color and comes up in chunks still, but a little smaller. But it’s still there, it’s still happening with the antibiotic, I have done every test possible that I know. I just went as far as mitochondrial and exome genetic testing, my bronchiectasis panel and everything negative. But I am still diagnosed with the bronchiectasis. Sorry this is long. My dad died at 60 and he was also a medical mystery and it terrifies me that if this doesn’t go away It will continue to get worse and I don’t even know why I have it! 🙁