Should 4+ Pseudomonas be treated?

Posted by fdixon63 @fdixon63, Jul 7, 2020

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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@auntnanny

fdixon53 -- thank you for sharing your info...… it seems toby has not been a cure-all for you either. But you took it only 28 days and then off for several months? I had thought it was a continuous drug until pseudomonas were gone. Certainly, mine are not gone. Thank you again

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@fdixon53 and @auntnanny, Hi there! All of these micro-organisms that invade our bodies are such a drag!!! You two gals have sure had a time of it battling these bugs over the years. If I could reach through this computer and give you a hug, I would. Toby was my salvation, but apparently, I am not the norm. I had pseudo back in 2016 and after 28 days on the tobramycin, I tested negative. Mayo kept me on that antibiotic for five more years on alternating months at 28 day stretches. I remained on the toby as a prophylactic measure. I was taken off of it and my other bi-monthly antibiotic last Dec. 2021. I had stayed clear of everything. (I had been negative for MAC since 2014). Guess what? Since going off of the maintenance antibiotics, I now have tested positive for MAC and aspergillus. The reason I was taken off all antibiotics is that Mayo believes that I may be nearing the time of needing a lung transplant and they do not want me building up a tolerance to the meds post-op. I feel like I need some protection still as I do not want my lungs to deteriorate faster due to infection. I go back to Mayo next week for more tests to see if I am any closer to needing to get listed for transplant, and I will ask about the dilemma of using antibiotics at this stage of the game.

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@poodledoc

Migizil, Here is that article. https://ntminfo.org/wp-content/uploads/2020/07/NTMguidelines2020.pdf Pseudomonas is often seen in conjunction with the various NTMs, and some of the antibiotics mentioned for NTM will also kill Pseudomonas.

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Once Pseudomonas becomes mucoid strain nothing will eliminate it (according to my Pulmo). But ongoing treatment (prophylactic) can help to keep it down. That is if you can tolerate the usual ongoing treatment options (which i could not). Or I suppose a yearly course of oral or IV antibiotics as needed might help (again if you can tolerate it). I currently only do airway clearance with saline and aerobika and positional drainage.

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@tlynng79

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! 🙁

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I've been on 4 rounds of antibiotics and I have the same thing. It comes back after a couple of days. Did you get rid of yours and how did you do that?

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@liebekim

I've been on 4 rounds of antibiotics and I have the same thing. It comes back after a couple of days. Did you get rid of yours and how did you do that?

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Have you been treated with inhaled Tobramycin or Colistin? If not, maybe a visit with an infectious disease specialist is in your future?

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Hello liebekin. I understand that every patient is different but also every doctor seems to have a different approach to treatment vs not treatment. I started showing pseudomonas in January through march. The NJH doctor dr Griffith said if it’s colonized they don’t treat it. The march sputum test did not show it. Instead it showed aspergillus. Dr Griffith said no treatment. My local I’d doctor is against treating pseudomonas aspergillus or anything colonized unless it gives you serious symptoms- she says they get resistant and that we always have something in our respiratory system. So when I got sick in may despite showing aspergillus on the culture I was given levaquin because NJH doctor thinks that if you have it it’s the usual cause of the infection. Could it have been aspergillus I don’t know but levaquin helped ( aspergillus is yeast so levaquin is not the med). It’s a long post but my point is when we get sick we take what the doctor prescribes no matter what because we want to get life back. I hope your doctor is wise and knowledgeable to help you.

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