Anyone able to get rid of stenotrophomonas maltophilia?

Posted by tropauer @tropauer, May 23 10:43am

Anyone or heard of someone not able to get rid of Steno M.?

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@tropauer The infection Stenotrophomonas maltophilia does not come up too often in this group, but if you copy and paste the full in the search box at the top of this page, you will be able to see all the posts relating to it. It is a relative of pseudomonas (in fact at one time it was considered a type of that infection) and sometimes responds to the same drugs.
What have your doctors tried so far?

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For several years I have had it show up in my sputum samples as “rare.” Some people have successfully eliminated it with Bactrim, but I am allergic to that. My doctor at NJH said that since it is not getting worse and I have no symptoms, he doesn’t feel it needs to be treated at this time.

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Profile picture for sburton56 @sburton56

For several years I have had it show up in my sputum samples as “rare.” Some people have successfully eliminated it with Bactrim, but I am allergic to that. My doctor at NJH said that since it is not getting worse and I have no symptoms, he doesn’t feel it needs to be treated at this time.

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@sburton56
I had it a couple years ago. I was very ill.
My new doctor at Cleveland Clinic had me on wrong antibiotic for 28 days.
I started Doxycycline first. It did nothing. Then Bactrim…..same. She then said i’d have to start the Big 3. I ask if I could try Leviquin. In 3 days i was better.

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Interesting they used the big 3 for you to treat steno. I’ve been on that for 3-4 weeks (for Mac, I'm told) and I still test positive for steno - although I feel much better.

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Profile picture for tropauer @tropauer

Interesting they used the big 3 for you to treat steno. I’ve been on that for 3-4 weeks (for Mac, I'm told) and I still test positive for steno - although I feel much better.

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@tropauer According to the information relied upon by Infectious Disease specialists, none of the "Big 3" are on the list of medications for this infection:
https://www.infectiousdiseaseadvisor.com/ddi/stenotrophomonas-maltophilia/

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Profile picture for Sue, Volunteer Mentor @sueinmn

@tropauer The infection Stenotrophomonas maltophilia does not come up too often in this group, but if you copy and paste the full in the search box at the top of this page, you will be able to see all the posts relating to it. It is a relative of pseudomonas (in fact at one time it was considered a type of that infection) and sometimes responds to the same drugs.
What have your doctors tried so far?

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@sueinmn I have not had that one . Im 68 grew psuedanoma aerigenosa last year. Had severe attack Jan/ Feb 2026 went on cefipime. Feeling good as if now but my ID doctor wants me to go on tobi inhaled forc30 days on and 30 days off. I seem to get side effects to every medication. And bad side effects. Im not so sure its the right time for me to start it. Im on the fence. Since its related to your steno was there any talk about trying inhaled tobi ?

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Profile picture for smc17 @smc17

@sueinmn I have not had that one . Im 68 grew psuedanoma aerigenosa last year. Had severe attack Jan/ Feb 2026 went on cefipime. Feeling good as if now but my ID doctor wants me to go on tobi inhaled forc30 days on and 30 days off. I seem to get side effects to every medication. And bad side effects. Im not so sure its the right time for me to start it. Im on the fence. Since its related to your steno was there any talk about trying inhaled tobi ?

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@smc17 My steno was never treated because it did not make a "regular appearance" in my cultures, it was sporadic and "few." But I was treated with Tobi for P. Auringosa back in 2018. My only side effect was that it took my voice while I was on it. That was after 3 other antibiotics failed.

Have you talked to your pulmonologist about Tobi and whether they would recommend? Have you had a repeat CT scan to see how your lungs look?

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Profile picture for Sue, Volunteer Mentor @sueinmn

@smc17 My steno was never treated because it did not make a "regular appearance" in my cultures, it was sporadic and "few." But I was treated with Tobi for P. Auringosa back in 2018. My only side effect was that it took my voice while I was on it. That was after 3 other antibiotics failed.

Have you talked to your pulmonologist about Tobi and whether they would recommend? Have you had a repeat CT scan to see how your lungs look?

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@sueinmn do you still have the pseudomonas Sue? I was in the hospital for 2 weeks in March taking IV Zosyn, and haven’t had a sputum test since

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Profile picture for sarahlynn1960 @sarahlynn1960

@sueinmn do you still have the pseudomonas Sue? I was in the hospital for 2 weeks in March taking IV Zosyn, and haven’t had a sputum test since

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@sarahlynn1960 No, since 2018 I have never tested positive for pseudomonas.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@smc17 My steno was never treated because it did not make a "regular appearance" in my cultures, it was sporadic and "few." But I was treated with Tobi for P. Auringosa back in 2018. My only side effect was that it took my voice while I was on it. That was after 3 other antibiotics failed.

Have you talked to your pulmonologist about Tobi and whether they would recommend? Have you had a repeat CT scan to see how your lungs look?

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@sueinmn my Infecticious disease doctor wants me on it for psuedonama aerigenosa. I had an active attack in Jan/ Feb. That I went on picc line of cefipime. She believes I will be having another attack by mid summer. But the tobi is a 30 day on 30 day off forever. I seem to get every dideceffect from any medication. So im not sure. If I lose my voice it seems id be in a difficult way . Especially since she said I may go on it everyday of my life . Im totally confused. How is your psuedonama aerigensa in your lungs since it was back in 2018. ??? Thank you

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