Hi. My name is John, and I’m a COVID Longhauler.
It is a fact that I would be a 46-year-old high school junior if not for Amanda Bortz.
To put it mildly, me and chemistry did not get along, a byproduct of my inability to grasp math once letters said, “We’d like to play, too!” My science ineptitude was not helped by the fact the school district hired a certifiably insane ex-hippie for one year to try to impart concepts I’m not sure she knew herself. Thankfully, “B” for “Bortz” is close to “A” for “Agliata,” and so, when lab groups were assigned alphabetically, I ended up with someone who actually knew what the hell she was doing.
With Amanda’s help, “I” did well on “our” labs and ended up with a very-low B in the course.
This is not to imply that I don’t love the scientific method. I do. So much of what we call “progress” throughout humanity’s scourge of an existence has hinged upon people who have put its six steps into practice, wittingly or unwittingly.
The Scientific Method
- Make an observation.
- Ask a question.
- Form a hypothesis, or testable explanation.
- Make a prediction based on the hypothesis.
- Test the prediction.
- Iterate: use the results to make new hypotheses or predictions.
In mid-April, I visited an Ear/Nost/Throat doctor (or, as Lord of the Rings fanatics love, an ENT) in an attempt to figure out why it felt like a gnome took a dump in my mouth. Since COVID entered my life in November 2020, I have had a nasty, metallic, bitter, unexplainable taste, my tongue has felt fuzzy/burned/not right and my teeth have felt like they have this slime on them.
The problem is, when experts and my wife look inside my mouth, they see… a mouth. Nothing wrong. No tongue issues, no gum issues, no teeth issues. Just a Normal. Freaking. Mouth.
Which leaves a few possibilities.
- I am, like my high school chemistry teacher, certifiably insane.
- Something has happened to the nerves in and around my mouth to scramble the messages they send to my brain.
Here’s where the scientific method comes in. The reality is, there’s no medical textbook for what’s going on with Longhaulers. Doctors are making observations and testing hypotheses left and right. I, myself, have been the grand experiment for several of them. So put your safety goggles on, find your lab coat, and grab your personal Amanda Bortz… It’s science time!
Step 1: Make an Observation
I gave the ENT an eyeful to observe. She was confronted with a frustrated, defeated middle-aged white male, 6 feet tall, 200 pounds of pure studly beefcake hidden under a sexy layer of fat. His eyes were tired, worn, and sat on top of some Somsonite-quality bags. He reported feeling as if a gnome shit in his mouth. He was able to talk lucidly and poetically about his struggles, giving the impression that, while crazy, he’s not cra-a-a-a-zy. A physical observation of the subject’s mouth showed abso-positively nothing wrong.
Step 2: Ask a Question
Though the ENT had never seen Longhaul COVID symptoms presenting like mine, she’s seen a ton of problems where nerve inflammation caused issues in and around the face. And we know COVID causes random inflammation that isn’t quite understood.
So, supposing just for a second that this dude ain’t cra=a=a=a=zy, is there something else that could be causing his problem?
Good question, Doc!
Step 3: Form a Hypothesis
Her theory was that my chorda tympia nerve might be inflamed and sending incorrect signals to my brain. This nerve meanders from brain to mouth — or mouth to brain, if you’re a brainocentrist. It is one of three nerves responsible for sending information about taste back and forth. Damage to the chorda tympia nerve messes up people’s sense of taste.
It sounded reasonable to me.
Step 4: Make a Prediction
The ENT predicted that calming down the chorda tympia nerve would return my mouth to normal.
“That would be delightful,” I said.
Step 5: Test the Hypothesis
It took a few days, but I eventually agreed to take high-dose steroids for 18 days to try to get this heretofore unknown-to-me nerve to chill
Every single guy, when he’s told he needs to take steroids, secretly hopes he’s going to end up looking like thisd:
Unfortunately, that wasn’t one of the side effects listed on the interwebs. Instead, I read about moodiness, anxiety, stomach issues, increased appetite and, the one that really had me pausing, insomnia. I was on the back end of a huge battle against insomnia, and returning to the war zone wasn’t close to as enticing as if I were, say, being offered a trip here:
The doc and I talked. She said that, in cases where nerve inflammation has caused hearing loss, a third of patients experienced full recovery after a round of steroids, a third showed some improvement and a third showed no improvement. I decided to place a bet on being in the two-thirds whose lives didn’t suck as bad after roidin’ up.
For 18 days I have swallowed a gradually decreasing number of tiny white pills with a huge glass of water and some food. For 18 days, I have hoped for some sign, any sign, of progress. Sadly, prednisone’s main impact on me has been to turn me into Butterbean.
And, shocking to no one who has been a roadie on John’s Magical Medical Mystery Tour, my mouth has shown no improvement. In fact, if anything, it’s worse.
So in a little bit I’ll be sending the doc a message telling her about the outcome of her little experiment and that her hypothesis was wrong. Which leads to….
Step 6: Use the Results to Make a New Hypothesis
This sounds great, right? More tests! More data! The chance at a brighter future!
Except that when we talked on the phone before I agreed to call Jose Canseco, Doc said if this didn’t work, she didn’t have another hypothesis. This was my chance. This was it. That’s all she’s got.
There is no Step 6. Not for me. Not for a lot of Longhaulers.
There’s only a dead end, a cliff that, unless you hit the brakes, you’re going to fly off.
Which sounds OK, actually. Because here’s the reality: Having a mouth that is constantly like this is maddening. Yes, I get it: It could be worse. A lot worse. Other people have other symptoms that are more than a few notches higher on the Suck Scale. Having a shit mouth isn’t going to physically kill me. Probably.
It’s just going to drive me insane.
Eat Me. (I’m serious)
So what’s the “next step,” assuming there is one besides “grin and bear it, dude”? I’m open to suggestions. In fact, I’m open to all sorts of experimental, alternative stuff. If there is some sort of root in the heart of the Amazon surrounded by cannibal tribes whose only contact with the outside world has been to eat those who stumble upon their turf, well, salt me up and send me in.
I just don’t want to fill out any more damn paperwork and don’t want to take a whole bunch of pills that make my heart race and generally leave me feeling even more shitty for three weeks.
I am on the doorstep of giving up hope that anything’s going to fix this. I have spent way too much money and time chasing solutions to something that no test shows exists. What a twisted world I inhabit when I peruse the Longhauler support groups on Facebook and get jealous when someone posts that a scan showed something, even if it is that their lungs are screwed up or their heart was out of rhythm. Trust me, I get it: I don’t want to die. But I’d also love for someone to be able to tell me something is to blame, that something is real.
Maybe that’s a job for Amanda Bortz.
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