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Long-term sinus issues and multi-system symptoms post-surgery

Posted by coyote13 @coyote13, 3 days ago

After many years of mystery chronic illness I discovered that I had serious sinus infection issues. Had the FESS surgery, which discovered a fungal ball and a pseudomonas infection, and thought I was on my way to healing. 11 months of steroid and anti-biotic rinses and, while my sinuses seem more clear, I'm probably worse than before the surgery.

Every few days I'll get a "glob" or fragment of mucus out of my trouble side, and it sends my body into digestive, neurologic and nervous system CHAOS. Doctors look at me like I'm crazy, but it's destroying my life.

I have requested an ENT appointment in AZ where I live and am terrified I didn't make a very good case for myself because I'm in such a bad state. Given the multi-system issues I'm having, I don't know if it's ENT, infectious diseases, or other specialty, which is why I feel like I need a place like Mayo.

Any thoughts or recommendations? After years of terrible mystery illness, I just want to be somewhere that actually cares about making me better, not just telling me "doesn't seem like an issue in my specialty."

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coyote13 | @coyote13 | 4 hours ago
In reply to @kaybast "I have Pseudomonas bacteria in my system which flares up as a lung , UTI ,..." + (show)
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I have Pseudomonas bacteria in my system which flares up as a lung , UTI , eye or sinus infections. (Left maxillary ).
I’ve been treated by Infectious Disease Center with IV antibiotics (Zosyn) in the past yr and half., one 14 days and one 21 days, both times the infection cleared up .
I just brought up a sputum from the lung 3 wks ago , it went to the lab and came back as Moderate colonized Pseudomonas . However I am anti symptomatic so my cadre of Doctors says no treatment .
Perhaps you should consider an Infectious Disease Dr to put you on Antibiotic IV to rid the infections. My EnT Dr just last week was going to script me the antibiotic rinse if I still had signs of it in the maxillary however he said while he sees a bit of crust he sees no pus and considers it clear.
Hope this helps and wish you the best !!! Kay B.

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@kaybast were you treated at Mayo or elsewhere?

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kaybast | @kaybast | 9 minutes ago
In reply to @coyote13 "@kaybast thanks for this. Mayo ENT denied my appointment request yesterday but it’s been resubmitted to..." + (show)
Profile picture for coyote13 @coyote13

@kaybast thanks for this. Mayo ENT denied my appointment request yesterday but it’s been resubmitted to infectious diseases. Sounds like that’s the right path at this point. Hoping to get this treated asap!

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@coyote13 very welcome… hope you’re able to get into the Infectious Disease path soon. Keep me posted ! Best. Kay

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