An apple a day? I wish that was all!
At least this time, it’s not a new infection, nor is it one that looks to be the end of me, but they do want to hit it hard. I had my sinus culture from June sent to my CF doctor and my awesome coordinator, Sue, called me today with news that it grew out alcaligenes xylosoxidans subsp. xylosoxidans bacteria. She was kind enough to e-mail me the spelling. I must hold the record for coming down with things or needing procedures that she needs to look up, because I keep coming down with some weird stuff that she knows is going to be followed by, “how do you spell that?” because she knows I’m going on the Internet in 0.2 seconds to look it up.
Alcaligenes xylosoxidans
Alcaligenes xylosoxidans has not been associated with increased morbidity and mortality in CF patients.
Not finding exactly what I wanted to know about this “new” bug, I found a research paper on the topic and e-mailed my old boss, weightlifting partner, and friend at Moffitt Cancer Center to see if he could get it from his databases of papers. Ten minutes later, I had a 3-page PDF sitting in my inbox that described 2 CF brothers who got the bacteria 3 years apart. They were both multiple-resistant to many drugs with everything they cultured, but the conclusion of the paper was that this bug didn’t seem to affect their health any and it even took 3 years for one of them to pass it on to the other despite their close living quarters. The paper concluded by saying, “In conclusion, there seems to be no need for aggressive antibiotic therapy to eradicate Alcaligenes xylosoxidans in CF patients.” Well, that’s good news for having a highly resistant rare human pathogen, as far as I’m concerned!
During the last few years, we had been taking periodic cultures of my sinuses and constantly treating for pseudomonas, which has always shown up as being sensitive to tobramyacin for me. So it’s unclear whether this is a new growth that I just got or one that they just started to pay attention to because the results went to my CF doctors, but we are going to change up what we are treating for, regarding my sinuses.
For now, the plan is to continue my colistin nebs morning and night, but get an attachment to do my afternoon colistin through my nose. Not sure if we’re going to be able to do this with a Trio yet or not, but I do hope I don’t need a compressor for this since we just got my “station” looking just so. Then, instead of flushing with tobramyacin at the ENT, I’ll bring along my own vial of colistin, since it’s just going to be one dose per month, to start flushing with something that it’s actually sensitive to.
Strange smell
I’ll bet this is the source of the strange smell I’ve been having in my nose for well over a year. I used to describe it as “wet dog smell,” which makes it different than when my cough smells like soggy Corn Chex or when I wake up and Beautiful says I smell like tomato soup. Not my breath, but me as a whole. It’s strange what smells we make isn’t it? What do your friends and family say you smell like with various meds or at various times of sickness vs. wellness?
The more that I get to know you the more similarities I see you have in common with Lauren! We have found that Lauren is usually the one who is the first in this area to have all the new bugs or have something happen to her that the Doctors haven't seen before and that will send them scrambling for the reference books. Even down to how you hold your neb during treatment, just like an old man would smoke his pipe! Your positive and happy nature is exactly the same as well. Dude I wonder if we come from the same family tree? 😉
Stranger things have happened, I'm sure! I've been a pipe-smoker my entire life, regardless of the neb head being used, giving the mouthpiece a good chewed-up texture after a few weeks.
It's crappy that you cultured a new bacteria, but it sounds like it could have been way worse, either way, I love that you don't let it get you down. You rock.
BTW – My mom says my son (with CF) smells like a chicken nugget. It is one of his favorite foods and he eats them often enough that I'm sure he sweats the sweet scent of McDonalds lol.
Thanks for stopping by and leaving a comment. We are left thinking it's got to be a sweat thing, too. It makes sense that we would have more of a food odor given the amount of physical material that could be contained in our salt-laden sweat.