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Posts (32)

Sat, May 9 1:34pm · Stenotrophomonas added to my diagnosis in MAC & Bronchiectasis

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.

Mon, Mar 16 10:59am · COVID-19 and MAC: What are you doing differently to protect yourself? in MAC & Bronchiectasis

I had already stocked up for the month, happily. Thursday I got sick with mild symptoms, emailed my ID doc that night, heard back from an on call doc on Friday that I cannot get tested. Fortunately I am feeling better now, but I was quite worried for a few days.

Thu, Feb 27 12:37pm · Stenotrophomonas added to my diagnosis in MAC & Bronchiectasis

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!

Mon, Jan 13 6:16pm · Stenotrophomonas added to my diagnosis in MAC & Bronchiectasis

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.

Sun, Jan 12 3:31am · Stenotrophomonas added to my diagnosis in MAC & Bronchiectasis

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!

Sep 14, 2019 · Extreme fatigue with MAC in MAC & Bronchiectasis

Tell me more about this bronchiectasis workshop in Denver. How did you find out about it?

May 2, 2019 · Increasing meds in MAC & Bronchiectasis

Thank you for letting me know. I was really looking forward to hopefully being done and starting to treat the aspergillus. Sigh.