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Should 4+ Pseudomonas be treated?
Good morning to all. I'm wondering what experiences you've had regarding treatment on recurring Pseudomonas. I had just finished treatment for 3+ Stenotrophomonas Maltophilia and wanted to know if the treatment had gotten rid of it. I did not hear from my pulmonary doc about results of my last sputum--testing had begun on June 19th. Last Friday I went on the portal and this is what I found. FINAL REPORT: 4+ Pseudomonas aeruginosa. This is the 5th Pseudomonas since March 2019. I had a result of
3+ Pseudomonas Aeruginosa in March this year and I was put on Tobramycin for
28 days. Now I show 4+ and have not heard from anyone from the doctor's office. I contacted the doctor by portal to question if treatment was indicated.
I feel OK, no noticeable shortness of breath, am nebulizing 7% Sod. Chl. once a day, appetite not great but OK (basically normal for me). I rarely cough up anything of color after nebing--maybe pale yellow, if at all. Over the last week or so (a few times a day) I have just a very slight dry cough. Otherwise am asymptomatic. The doctor responded "I would say at this point that we should not treat unless something changes clinically. We can discuss more at your next appointment but please let me know if your symptoms change.” Any experiences out there to share?
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Hi Inna…pseudomonas is a tricky bacteria, and usually 2-3 weeks for Cipro or Levaquin will get rid of it, if caught early..usually a sputum culture is done after the meds to see if it’s gone..I hsve Volonized pseudo and use nebulized Colistin every other minth
I have been dealing with this for years and finally had someone test my sputum and consistently find pseudomonas aeruginosa. I have exhausted all tests that I know, even did every genetic test possible with everything negative. I am now on Azithromycin 250mg daily to function, but this is taking so much of my life away and I am still with no answers why. Are there any other tests that can be done? Mycobacterium Gordonae and haemophilus influenzae were also found. Should I seek more help from the Mayo Clinic that maybe I’m not getting?
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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1 ReactionSo 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! 🙁
Pseudomonas is considered an opportunistic infection. It primarily settles in where something else has compromised you lungs and or sinuses.
As I mentioned above, not every doc is familiar with progressive treatment. The Gold Standard for treating these is National Jewish Health, Mayo and a few other major centers. Since your local docs have been unable to arrive at a diagnosis and effective treatment, it is certainly time to ask for a referral. With how crowded and tightly scheduled facilities are these days it may be better to have a referral than to self-refer. In what part of the country are you located.?
Sue, is bottled spring water safe to drink if you have MAC?
I have MAI and bronchietasis. Just had a CT Scan and it now says I have diffuse mild centrilobular emphysema which is stable. That shocked the heck out of me.. The ID Doctor does not want to treat because scarring is mild and stable. Can anyone tell me if they have gotten emphysema due to the bronchietasis. Scares the heck out of me. I didn’t realize that bronchietasis was a form of COPD.
Sue what kind of mucenix do you take? b/c I have so much mucus when I do saline. I fought so so much. Cavan hardly bread. Thanks! Cila
Mucus coming out is a good thing. That's the "safe harbor" for infection in our lungs that we need to cough up. I use Mucinex LA 600, twice a day. I buy it in quantity on line because it is so expensive at the drug store. The long-acting feature is important as otherwise it only lasts for 4-6 hours. Pure guaifenesin with no decongestant. The purpose is not to end the mucus - it is to thin it so it comes out more easily.
Which saline are you using? Sometimes 7% is too irritating, and might need to be alternated with something milder.
Sue
I used 7% but I cough every time I start the saline. I used to not bother me but lately I cough so much that takes a long time to do it. Thanks for your help. Is pure guaifenesin is otc or prescription? Cila