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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@sweethighland

Thank you Sue. Your response was reassuring, Saw ID doctor yesterday, my culture is still growing 2+ B cepecia and new bug 1+ Stenotrophomonas maltophilia. Very upset. Both are resistant to many antibiotics. They are not treating me though they have seen the results.

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I can understand being upset. Let me try to reassure. Sometimes, not treating is the appropriate protocol. For reasons unknown, sometimes infections spontaneously "disappear". Sometimes we believe the body is able to fight them off. Other times, the sputum culture could have contained bacteria from the nose or mouth, or environmental contamination.
In those cases, "watch and wait" is the correct approach.
Have you asked your doc what the plan might be?
Sue

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@fdixon63

The positive lab findings come back to show 1+ through 4+. The 4+ is the worse on the scale. First tested 1 plus in March 2019 and was given Levofloxacin. I was not tested again until Sept 2019 and had three different ?strains and all were 4+ so obvious Levofloxacin was not effective. I had a PICC line with Ciftazidime for 2 weeks and Tobramycin for 28 days. Five months later had two ?strains--one 4+ and one 3+. Given Tobramycin for 28 days. Again in March 2020 and again Tobramycin 28 days. Latest sputum results in June 2020 one 4+. Wish we could all get something to work. Urg. Thanks to everyone who is responding--more, more sharing.

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Hi fdixon63, is PICC line with Ciftazidime for 2 weeks tolerable? I have Burkholderia cepecia which is showing 1+ and my doctor said if I want to eradicate, we have to use IV. Before it was alway showing 2+. It was 3+ last October and got treated high dose bactrim which made me very sick. Since then, I'm afraid of antibiotics. Some said higher generation antibiotic are well tolerated. What was your PICC line experience? I looked up and it looks scary to me.

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@sueinmn

I can understand being upset. Let me try to reassure. Sometimes, not treating is the appropriate protocol. For reasons unknown, sometimes infections spontaneously "disappear". Sometimes we believe the body is able to fight them off. Other times, the sputum culture could have contained bacteria from the nose or mouth, or environmental contamination.
In those cases, "watch and wait" is the correct approach.
Have you asked your doc what the plan might be?
Sue

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Thank you Sue. Yesterday, we primarily discussed the challenges of eradication of B cepacia as this is my main concern. ID doctor said that eradication is extremely challenging and may be impossible. If attempted, it
would involve an prolonged regimen of IV therapy and may not be successful. Even if successful, there's no guarantee I would not be re-colonized. ID doctor encouraged me to focus on my symptoms rather than what I grows on my sputum culture as it does appear the results make me extremely anxious. 🙁

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@sweethighland

Thank you Sue. Yesterday, we primarily discussed the challenges of eradication of B cepacia as this is my main concern. ID doctor said that eradication is extremely challenging and may be impossible. If attempted, it
would involve an prolonged regimen of IV therapy and may not be successful. Even if successful, there's no guarantee I would not be re-colonized. ID doctor encouraged me to focus on my symptoms rather than what I grows on my sputum culture as it does appear the results make me extremely anxious. 🙁

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For the same reason, my ID & pulmonology docs refuse to do a sputum culture on me unless I am symptomatic. They rely on 2x yearly CT scans plus symptoms to decide how I am doing. I was treated for MAC for 2 years and never got a negative culture, even though my CT cleared up a lot. After 20 months, I am still symptom free using inhalers and now 3x weekly 7% saline.
I hope I never need those drugs again.

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@sueinmn

For the same reason, my ID & pulmonology docs refuse to do a sputum culture on me unless I am symptomatic. They rely on 2x yearly CT scans plus symptoms to decide how I am doing. I was treated for MAC for 2 years and never got a negative culture, even though my CT cleared up a lot. After 20 months, I am still symptom free using inhalers and now 3x weekly 7% saline.
I hope I never need those drugs again.

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But aren't you curious? I think that, even without symptoms, I would want to know what is, or is not, in my lungs. And the sputum examination is the definitive test. Finding something doesn't mean treatment but the doctors and I would know what, if anything, is there.
But maybe that's just me.

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@sweethighland

Hi fdixon63, is PICC line with Ciftazidime for 2 weeks tolerable? I have Burkholderia cepecia which is showing 1+ and my doctor said if I want to eradicate, we have to use IV. Before it was alway showing 2+. It was 3+ last October and got treated high dose bactrim which made me very sick. Since then, I'm afraid of antibiotics. Some said higher generation antibiotic are well tolerated. What was your PICC line experience? I looked up and it looks scary to me.

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Hi. When I was first diagnosed with Pseudomonas A. I was asked what was my choice for treatment--suppress or eradicate? I felt it would be best to eradicate. The PICC line (after the line was inserted) was basically pain free. Having someone (husband) to make sure I go through the steps each use was helpful. Having to get up in the middle of the night to do the 3rd treatment of the day was somewhat of a challenge but we set the alarm and did it. You just have to keep your eye on the prize. Getting the PICC line is a great way to get antibiotics where needed instead of a pill where it goes to the whole body--especially the gut. I've still had flare ups with Pseudomonas in the 3 years since that experience and now get treated with inhaled Tobramycin. That really gets the gunk out. Not sure there will ever be a complete freedom from having to treat pseu A but we must do what we can to get past the episodes and live life as best as we can. This stuff can beat you down or prove just how strong you are. This site is a wonderful place to go when you have questions or concerns. It's not a club we wanted to become a member of but I thank God for the great wisdom we can connect with. God Bless You. Faye

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@rits

But aren't you curious? I think that, even without symptoms, I would want to know what is, or is not, in my lungs. And the sputum examination is the definitive test. Finding something doesn't mean treatment but the doctors and I would know what, if anything, is there.
But maybe that's just me.

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Am I curious? Maybe a little. But I have had a lot of medical issues in my life, and I don't like to dwell on them. So, my choice is to only be tested/treated if I am symptomatic because I assume the MAC is still there, just like the stenosis in my spine, the glaucoma in my eyes, the arthritis everywhere, and the defect in my heart. So I get my regular checkups as recommended for each thing, take the absolutely required meds, exercise, do airway clearance eat well...

As for my lungs, that doesn't mean waiting until I have a horrible cough and green mucus - as soon as I have a hint of respiratory illness, I double down on the airway clearance, start my "emergency" meds as directed if I need to, and call the doc if it doesn't clear up in two weeks. This has kept me healthy for almost 3 years now, my CT's show no changes. And I am not constantly anxious waiting to hear what the latest test shows.

I have the same approach to the rest of my body - I don't ignore potentially serious symptoms, I get them checked out, then get on with life. This is how my Mom & her sister lived - well into their 80's with a plethora of health issues - they are my role models.
But that's just me, with the support of my awesome care team. Everyone needs to do what they are comfortable with.
Sue

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@sueinmn

Am I curious? Maybe a little. But I have had a lot of medical issues in my life, and I don't like to dwell on them. So, my choice is to only be tested/treated if I am symptomatic because I assume the MAC is still there, just like the stenosis in my spine, the glaucoma in my eyes, the arthritis everywhere, and the defect in my heart. So I get my regular checkups as recommended for each thing, take the absolutely required meds, exercise, do airway clearance eat well...

As for my lungs, that doesn't mean waiting until I have a horrible cough and green mucus - as soon as I have a hint of respiratory illness, I double down on the airway clearance, start my "emergency" meds as directed if I need to, and call the doc if it doesn't clear up in two weeks. This has kept me healthy for almost 3 years now, my CT's show no changes. And I am not constantly anxious waiting to hear what the latest test shows.

I have the same approach to the rest of my body - I don't ignore potentially serious symptoms, I get them checked out, then get on with life. This is how my Mom & her sister lived - well into their 80's with a plethora of health issues - they are my role models.
But that's just me, with the support of my awesome care team. Everyone needs to do what they are comfortable with.
Sue

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I understand not checking everything. I don't check every condition either. For example, following the advice of my doctor, I no longer have mammograms. I have a neoplasm on my pancreas and I've decided to no longer have the annual specialized mri to see if it's growing and therefore cancerous although my oncologist thinks I should (pcp and gastroenterologist agree with me).

I haven't seen the opthomolgist, dermatologist or even the dentist in a couple of years. But that's due more to the pandemic and the state of my health.

My sputum samples have been negative for MAC since June 2020 following 14 months of antibiotics. I have, however, had pseudomonas, klibsiella and fungus. I had short term antibiotic treatment for the bacteria last year but could not tolerate anything longer than two weeks. Imagine my surprise when my most recent sample, in May, showed only "few pseudomonas" and nothing else. Previously my samples had "many" pseudomonas and have always had fungus which we never treated. When I asked Dr McShane what happened to the fungus, she just said that it wasn't in the sample.

In your situation. I would want to know. Because you are doing so well maybe it's gone!

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@rits

I understand not checking everything. I don't check every condition either. For example, following the advice of my doctor, I no longer have mammograms. I have a neoplasm on my pancreas and I've decided to no longer have the annual specialized mri to see if it's growing and therefore cancerous although my oncologist thinks I should (pcp and gastroenterologist agree with me).

I haven't seen the opthomolgist, dermatologist or even the dentist in a couple of years. But that's due more to the pandemic and the state of my health.

My sputum samples have been negative for MAC since June 2020 following 14 months of antibiotics. I have, however, had pseudomonas, klibsiella and fungus. I had short term antibiotic treatment for the bacteria last year but could not tolerate anything longer than two weeks. Imagine my surprise when my most recent sample, in May, showed only "few pseudomonas" and nothing else. Previously my samples had "many" pseudomonas and have always had fungus which we never treated. When I asked Dr McShane what happened to the fungus, she just said that it wasn't in the sample.

In your situation. I would want to know. Because you are doing so well maybe it's gone!

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But it would make no difference in how I live to know it is "gone" - I still have asthma & bronchiectasis, so it could come back at any time. Just as it would make no difference to know if it is "still there" I am not going to treat it with antibiotics until I become symptomatic after my using my current exacerbation treatment routine.

In any event - I need to take the same precautions & do my routine whether the bacteria is there or not. And submitting sputum cultures repeatedly, when it won't change how my doctors and I manage my health, is a waste of health care resources, my time & theirs.

Just our different ways of looking at life, I guess.
Sue

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In September 2020, i was watching and waiting to see if a year of 3% saline nebs would cure my mac…when i got a fever with a lot of green sputum. It came back pseudomonas, so the pulmonary np put me on a 2 week course of cipro and it knocked it out. I haven’t had it back again. I felt totally lousy. I really think it has to do with my gardening ( which i try to remember to mask every time) but also im much be with airway clearance and 7% nebs.

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