I saw the ENT this week about this whole loss/distortion of smell issue. For those who haven’t known me long, here’s a very brief recap of the last year on my nose. Just skip the next paragraph if you already know what’s happening.
Jan 2018: Got a cold, nose got stuffy, lost my sense of smell, thought that was normal. Stayed sick til April when someone finally admitted I needed antibiotics. Got better. Sense of smell didn’t return. June: Smell suddenly returned but everything smelled like plaster and certain foods had completely altered tastes to the point where I couldn’t eat them. July through October: Smell changed three times, first to yeast/undercooked bread in July, then to sewage in late September, then to rotten onions in mid-October. Nov: Dr ordered an MRI; it was normal. Dec: Dr put me on a four-week round of antibiotics for presumed entrenched sinus infection and referred me to the ENT.
Since my doctor put me on the antibiotic, life has been a bit rough. I’m mildly allergic to this particular antibiotic and the doctor knows, but he said it’s the best for sinus infections, and suggested a few things (like probiotics) to help counter the reactions. Unfortunately, I’ve still dealt with a lot of unpleasant side effects, most recently a persistent under-the-skin red rash across my entire face. The probiotics did help…until they started giving me hives and I had to switch to a different one with fewer strains and which only caused hives sometimes. But really, the entire experience has been quite unpleasant, as you might expect during a four-week-course of a medicine you’re mildly allergic to.
However, I thought the antibiotic was making a difference. After about a week taking it, I began to smell three things instead of one! Rotten onions, tamales, and patchouli. I also started to smell the real scents underneath those. Major improvement! Then I got off the hive-probiotic and my sense of smell went back to rotten-onions-only. Two weeks later, I accidentally took the wrong probiotic (immediate hives!) and for a day I went back to the three scents. I hadn’t realized the diversification was due to that specific probiotic, and the implications are interesting.
But absolutely inexplicable, as it turns out. The ENT did a scope of my nose (pleasant…) and ruled out sinus infection, polyps in the olfactory region, and abnormalities anywhere in my nose. She re-examined my brain MRI and confirmed it was normal. The good news is that I could stop taking the antibiotic. Hallelujah. The bad news is that she’s stumped. She said a virus could have damaged the olfactory nerves in my nose, and smelling anything at all would indicate the nerves waking up. “Unpleasant for you, but all you can do is wait and hope,” she said. She also admitted that her theory doesn’t hold up with the changes in smell over time, especially with the probiotics like that. She suggested – I’m dead serious – that I get some strong-smelling items and sniff them several times a day while remembering what they’re supposed to smell like, then come see her in a month to see if that worked. WTF.
In other words, I’m basically f*cked. I’m back to square one, on my own, figuring out what the hell is going on in my body without a doctor’s help. I drowned my body in antibiotics for no reason and severely upset my internal balance. Now, days after taking no medicines/probiotics at all, I’ve started getting hives every night and the facial rash –> is even more painful and itchy – most likely I’m going to need a round of steroids to clear out all the inflammation. That’s the only thing that’s helped my body with hives before. On the brighter side, at least now I have a small clue on the nose front: probiotics improved the situation. They did something, more than doctors or medicine have done. Obviously I can’t take something that’s going to give me hives, but what I can do is a lot of research and work in resetting my own internal bacteria balance.
It’s probably something I needed to do a long time ago anyway. More on this later this week, but I only began having problems with weight and health after the botched tooth surgery in 1998 that led to a hidden infection, which in turn led to constant illnesses in my throat and spending several YEARS on antibiotics. My internal ecosystem is as f*cked as I am. And as soon as I deal with the current hive/rash issue, I’m going to put my system back to as healthy as I possibly can. Hopefully I can heal whatever’s causing this nose problem in the process. I’ve spent most of my adult life figuring out my own medical problems because the doctors never could, and I guess I’ll just keep on doing that. But GAH it’s frustrating.
Ughhhhh this whole story makes me so mad!!! I hate doctors. Their impulsiveness to prescribe drugs and treatments without bothering to do any research or investigation has nearly killed my 91-yo old mother twice and it’s only my own Googling that has brought her back to decent health. I’m sorry that you have to go through all this crap and hope you can find your own “cure” without too much effort.
I’m not really irritated with my normal doctor. He tried a lot of non-medicine things to start with and he did a good job checking to make sure it wasn’t a brain tumor or something like that. He tried to get me in to an ENT asap so that I didn’t have to be on the medicine too long, but they didn’t have an opening until mid-January, and when he increased the length of time on the meds, it was after the probiotic caused an improvement in my sense of smell, so we’d both assumed that the meds were working. I only later discovered it was the probiotic affecting me. But I AM irritated with the ENT. Sigh.
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