Stenotrophomonas added to my diagnosis

Posted by franthony @franthony, Sun, Jan 12 3:31am

My doc just added stenotrophomonas to my growing list of lung infections. My MAC results have been coming back negative for a few weeks now, pseudomonas seem calm, but my aspergillus can’t be treated while I’m being treated for MAC, This is a never ending thing, I guess. Does anybody else have stenotrophomonasy? This is so frustrating!

How frustrating, @franthony. I believe @sayaboleh @sdwiggs and @lindam272 have tested positive for stenotrophomonas maltophilia and may be add some thoughts. I read that S. maltophilia bacteria are resistant to many antibiotics. What are your next steps and treatment options?

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@colleenyoung

How frustrating, @franthony. I believe @sayaboleh @sdwiggs and @lindam272 have tested positive for stenotrophomonas maltophilia and may be add some thoughts. I read that S. maltophilia bacteria are resistant to many antibiotics. What are your next steps and treatment options?

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I saw my ID doc today and she said they are at less than 10%, and often reside in epithelial cells, so at this time we simply watch and continue to get routine (routine for us, right?) sputum cultures.

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Well, now I have added penicillium to the mix. This is infection number five in two years. It is a little depressing. Stenotrophomonas susceptibility tests still running. Meanwhile, I'm in month 20 of MAC treatment, have been treated for pseudomonas three times, and can't be treated for the aspergillus while being treated for the MAC. Sheesh!

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Hi everyone. Need to hear some experiences with this Stenotrophomonas "bug." I had just finished 28 days of Tobramycin (for Pseudomonas) and submitted a sputum. Now they say I've grown this. I've had Pseudomonas 3 times in a 13-14 month span. A little over a year ago when I was diagnosed with MAC and Bronchiectasis, I also had Pseudomonous. Last fall had a PICC line and Tobramycin which tests said it cleared it up. So then a 3-4 months later tested positive again for Pseudomonous, but not as bad as in the fall. I submitted a sputum last week and now they say I'm growing Stenotrophomonas. I can't recall ever hearing about it but there are so many things on the "connect" group I could have overlooked. They have prescribed 21 days of oral antibiotic called Minocycline. I don't do well on most antibiotics and had to be taken off the "big 3" after 6 weeks so don't know what to expect with this one. Whatever knowledge or experiences you can share is appreciated. Thanks and God Bless Us All.

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@fdixon63

Hi everyone. Need to hear some experiences with this Stenotrophomonas "bug." I had just finished 28 days of Tobramycin (for Pseudomonas) and submitted a sputum. Now they say I've grown this. I've had Pseudomonas 3 times in a 13-14 month span. A little over a year ago when I was diagnosed with MAC and Bronchiectasis, I also had Pseudomonous. Last fall had a PICC line and Tobramycin which tests said it cleared it up. So then a 3-4 months later tested positive again for Pseudomonous, but not as bad as in the fall. I submitted a sputum last week and now they say I'm growing Stenotrophomonas. I can't recall ever hearing about it but there are so many things on the "connect" group I could have overlooked. They have prescribed 21 days of oral antibiotic called Minocycline. I don't do well on most antibiotics and had to be taken off the "big 3" after 6 weeks so don't know what to expect with this one. Whatever knowledge or experiences you can share is appreciated. Thanks and God Bless Us All.

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Hi @fdixon63, I moved your message to this discussion of the similar name. I did this so you can connect with others talking having Stenotrophomonas added to their diagnosis like @franthony @sayaboleh @sdwiggs and @lindam272. @franthony just had this back in January and hopefully will have more to share.

FDixon, have you started Minocycline already?

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Thanks. Yes. I took first dose late afternoon. 100 mg twice a day for 21 days.

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@fdixon63 Just make sure you don’t lie down after you take it as it could irritate your esophagus. Other than that, the side effects from that aren’t like the Big 3 in toxicity. Good luck. irene5

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@fdixon63

Hi everyone. Need to hear some experiences with this Stenotrophomonas "bug." I had just finished 28 days of Tobramycin (for Pseudomonas) and submitted a sputum. Now they say I've grown this. I've had Pseudomonas 3 times in a 13-14 month span. A little over a year ago when I was diagnosed with MAC and Bronchiectasis, I also had Pseudomonous. Last fall had a PICC line and Tobramycin which tests said it cleared it up. So then a 3-4 months later tested positive again for Pseudomonous, but not as bad as in the fall. I submitted a sputum last week and now they say I'm growing Stenotrophomonas. I can't recall ever hearing about it but there are so many things on the "connect" group I could have overlooked. They have prescribed 21 days of oral antibiotic called Minocycline. I don't do well on most antibiotics and had to be taken off the "big 3" after 6 weeks so don't know what to expect with this one. Whatever knowledge or experiences you can share is appreciated. Thanks and God Bless Us All.

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I have been treated for pseudomonas three times the last three years, each time with a 10 or 14 day course of levafloxicin, and because the stenotrophomonas kicked into high gear after I may or may not have had a mild case of covid, my ID doc decided we could wait no longer (I may be able to end treatment for MAC at the end of May), and prescribed levafloxicin again. Something is active again, now awaiting latest AFB/sputum culture results. So here we are. I am resigned to spending the rest of my life on and off antibiotics. Good luck to you and please don't become disheartened.

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Hi @franthony. Thanks for sharing your experience. When I first found out about the stenotrophomonas yesterday I was a bit down and had a little "pity party." After that I had a talk with myself, prayed to my God, got encouragement from my best friend, felt the support from my husband and renewed confidence in my doctors that they know what they are doing. I pray for you that you will get some good news soon. Knowing we're not alone with these diseases is some comfort. I've learned so much. God bless you. Faye

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@irene5

@fdixon63 Just make sure you don’t lie down after you take it as it could irritate your esophagus. Other than that, the side effects from that aren’t like the Big 3 in toxicity. Good luck. irene5

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Hi @irene5. Thanks for your response. I am going to take the meds at 6A and 6P. That will work out with my bedtime being around 9-9:30PM. Yes the Big 3 was a horror for me–only lasted 6 weeks and had to stop. Take care.

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@fdixon63 Good luck. I think you’ll be ok on the miniocycline. Some people take the Big 3 and do well. Others like you and me struggle with them. Irene

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@fdixon63

Hi @franthony. Thanks for sharing your experience. When I first found out about the stenotrophomonas yesterday I was a bit down and had a little "pity party." After that I had a talk with myself, prayed to my God, got encouragement from my best friend, felt the support from my husband and renewed confidence in my doctors that they know what they are doing. I pray for you that you will get some good news soon. Knowing we're not alone with these diseases is some comfort. I've learned so much. God bless you. Faye

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Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

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@toni1132

Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

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Thank you @toni1132. I never knew words from perfect strangers could be so warming. But I say this, "A stranger is just a friend you haven't met yet. Feeling the love from the group.

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Very nice saying.

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@toni1132

Blessings on YOU ! What a wonderful outlook! You are so right. We all have to keep a positive mindset. Prayers, friends, loved ones, medical intervention, all this is there for us and we all need to remembers that it is and we need to utilize all of these options and sources. I truly wish you well !

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How nice what you have said.

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