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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 | @auntnanny | Jul 8, 2020
In reply to @windwalker "Are you working in your yard or garden much? I was wondering how/where you keep picking..." + (show)
@windwalker

Are you working in your yard or garden much? I was wondering how/where you keep picking up the pseudo. I know it is invasive in the environment, but, you may be exposing yourself even more to it than necessary. When I looked up this organism, I had read that it is mostly found on leaves of various plants. As an extra precaution, if you do yardwork or love to garden, it would be helpful to wear an N95 mask & gloves, and be sure to wash your hands up to your elbows.

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windwalker…… no, I do no yard work at all. Try to stay away from most everything. House is totally vacuumed three times weekly. I have an in-home office and I spend a good deal of time in there. Do some cooking...… but nothing that I feel is detrimental. Perhaps I'm missing something.

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2 replies
Jennifer | @megan123 | Jul 8, 2020
In reply to @auntnanny "fdixon …… I too have a pseudomonas problem. I've never had a report that said 3+,..." + (show)
@auntnanny

fdixon …… I too have a pseudomonas problem. I've never had a report that said 3+, 4+ or anything like that. The sputum tests I do just say "many" -- so I don't know how that falls into your category. I've been on toby for over a year and am not getting rid of them. I am discouraged about that too. I have difficulty taking it due to shortness of breath but am now doing two weeks on and two weeks off. I cough all the time -- never clear -- always green and have no trouble coughing it up whether or not I do anything. I do nebulize 3% saline twice daily and albuterol twice daily plus the toby. I'm wondering if anyone has any other med that has helped to rid pseudomonas. My doctor is with Mayo's in Rochester (for what that's worth). Appreciate all comments concerning pseudomonas.

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Hi fdixon63...I too have pseudomonas...they tried to irradiate it, but were unsuccessful...for the last year or so I have been on Colistin every other month that pushes it back to not showing up in my sputum...by the end of the month it is back to moderate...I tried Toby but found it really harsh.....I’m in good shape otherwise, exercise etc...I live in Toronto so we have only 3 nebulized drugs..the other is Cayston, but I will likely have to pay...pseudo is a nasty bacteria...airway clearance is especially important do be diligent x 2a day to get rid of mucous..🇨🇦

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2 replies
auntnanny | @auntnanny | Jul 8, 2020

megan123 I much appreciated reading your post. You are the first person I've known who had any trouble with toby (except what problems I've mentioned). It was good to know I'm not the only one fighting this problem. I'm on it again but not sure how long I can stay. It almost stops me from breathing after about 10 days. I'm never rid of the pseudomonas but then I sometimes think it may be because I'm probably much older than most of you. I'm past 79 now and oftentimes believe it may be my age holding me back. I truly don't know.

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2 replies
migizii | @migizii | Jul 8, 2020
In reply to @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,..." + (show)
@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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Poodledoc, thanks for posting this as the people with NTM’s presently may find this information helpful💕

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Jennifer | @megan123 | Jul 9, 2020
In reply to @auntnanny "megan123 I much appreciated reading your post. You are the first person I've known who had..." + (show)
@auntnanny

megan123 I much appreciated reading your post. You are the first person I've known who had any trouble with toby (except what problems I've mentioned). It was good to know I'm not the only one fighting this problem. I'm on it again but not sure how long I can stay. It almost stops me from breathing after about 10 days. I'm never rid of the pseudomonas but then I sometimes think it may be because I'm probably much older than most of you. I'm past 79 now and oftentimes believe it may be my age holding me back. I truly don't know.

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Hi Auntnanny...maybe ask your dr if you can try Colistin instead every other month..seems to be tolerated better then Tobi...I do saline 7 percent before I use Colistin..ventolin before the saline..this helped me with so much less congestion

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auntnanny | @auntnanny | Jul 9, 2020

megan123...... thank you so very much for your information. I will keep a copy of this note and plan to use it. Thanks again -- Jan

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2020
In reply to @auntnanny "megan123 I much appreciated reading your post. You are the first person I've known who had..." + (show)
@auntnanny

megan123 I much appreciated reading your post. You are the first person I've known who had any trouble with toby (except what problems I've mentioned). It was good to know I'm not the only one fighting this problem. I'm on it again but not sure how long I can stay. It almost stops me from breathing after about 10 days. I'm never rid of the pseudomonas but then I sometimes think it may be because I'm probably much older than most of you. I'm past 79 now and oftentimes believe it may be my age holding me back. I truly don't know.

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Jan, you may be right that age prevents faster recovery times. I know that to be the case when trying to heal a broken bone. Perhaps do ask your dr about Colistin as Jennifer suggested. Please keep me posted.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2020
In reply to @auntnanny "windwalker…… no, I do no yard work at all. Try to stay away from most everything...." + (show)
@auntnanny

windwalker…… no, I do no yard work at all. Try to stay away from most everything. House is totally vacuumed three times weekly. I have an in-home office and I spend a good deal of time in there. Do some cooking...… but nothing that I feel is detrimental. Perhaps I'm missing something.

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It sounds like you are covering all of your bases. Hmmmm.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2020
In reply to @megan123 "Hi fdixon63...I too have pseudomonas...they tried to irradiate it, but were unsuccessful...for the last year or..." + (show)
@megan123

Hi fdixon63...I too have pseudomonas...they tried to irradiate it, but were unsuccessful...for the last year or so I have been on Colistin every other month that pushes it back to not showing up in my sputum...by the end of the month it is back to moderate...I tried Toby but found it really harsh.....I’m in good shape otherwise, exercise etc...I live in Toronto so we have only 3 nebulized drugs..the other is Cayston, but I will likely have to pay...pseudo is a nasty bacteria...airway clearance is especially important do be diligent x 2a day to get rid of mucous..🇨🇦

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I love the way you put your Canadian flag at the end of your post.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 10, 2020
In reply to @auntnanny "windwalker…… I feel like I can only get about 20% of air when I breathe. I..." + (show)
@auntnanny

windwalker…… I feel like I can only get about 20% of air when I breathe. I took oxygen level with the clip on finger type tester and it was 85%. Can't do too much at that time. It rather scares me to go on with it. So, now they have me on 2 weeks on -- 2 weeks off. I'm on again right now. I've never had any coughing relief but have been unable to do the 28 day program. I've done it on a lesser scale for over a year now. I'm going to inquire about adding the second product to it. Thank you

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Jan, 85% oxygen! How long does that level persist! Is that at your resting rate? (while seated) Anything under 88% means you should have supplimental oxygen. Please monitor that, and report to your dr.

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