I have Lyme. I’d like to not have it anymore. I also just want cake.
So, I have a problem. A problem that exists in my huge basket of other problems. But we’re going to single this one out today for the sake of my story. True story.
Around the end of 2003 I was four months into a “weird sickness” that followed a bout with Mono and seemed to want to stay. With it I had developed this annoying symptom of hearing my heartbeat in my left ear. Whoosh, whoosh, whoosh, all day. I was told my illness was Chronic Fatigue Syndrome and endured the two years it seemed to last before I improved and went on with my life. However, the ear thing kind of still happened on and off since then. Ten years later during the great Lyme explosion of 2013, the ear whooshing returned full-time and with a vengeance, only this time it was also accompanied by a feeling of pressure behind my face, feeling of fullness in my head, pressure and pain in my ear, feeling underwater, and sometimes, odd sensations of movement in my head and face that would press against my sinuses – all on the left side only. A year and a half later, this still remains. To put it frankly, I’m sick of it. Going mad even, because of it.
Dr. J believes it to be damage/neuropathy/infection of the trigeminal nerve, which is cranial nerve 5 (CN V) to all you neurology jargon lovers. Why does Lyme have to ruin everything! *whine*.
Just to be on the safe side, I got everything checked out by an Ear, Nose, and Throat doctor yesterday. I was skeptical even during the appointment-making process. So many MD’s have been sent to my “Do Not Count On During Lyme” list:
1. P̶r̶i̶m̶a̶r̶y̶ ̶C̶a̶r̶e̶ ̶P̶h̶y̶s̶i̶c̶i̶a̶n̶
2. E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶1̶
3. E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶2̶
4. E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶3̶
8. C̶h̶i̶l̶d̶h̶o̶o̶d̶ ̶P̶r̶i̶m̶a̶r̶y̶ ̶C̶a̶r̶e̶ ̶P̶h̶y̶s̶i̶c̶i̶a̶n̶
9. E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶4̶
10. O̶s̶t̶e̶o̶p̶a̶t̶h̶i̶c̶ ̶D̶o̶c̶t̶o̶r̶ ̶(̶L̶L̶M̶D̶ ̶#̶1̶)̶
11.E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶5̶
12. E̶R̶ ̶D̶o̶c̶t̶o̶r̶ ̶#̶6
14. E̶R̶ ̶D̶o̶c̶ ̶#̶7̶
Perhaps I, in the back of my mind, had already added the ENT to my list and self-sabotaged my own appointment. But to be fair, he made it really, really easy. Cue story.
After taking half my lifetime to fill out all the new patient paperwork and list all of my current medications and supplements (Uh, Miss, can I have a second sheet of paper for this?), I am led back to a room and given a hearing test in some special little hearing test booth. Then I am led to a room to wait for the doctor. He eventually comes in after I’ve completely memorized all of the sinus cavities and inner ear parts from the wall posters. Sound familiar? I know I’m not the only one.
Him: “Hello, I’m Doctor Neilson” *offers his hand to shake*
Me in my head: Are you? *shakes his hand?* Your mouth is saying Dr. Neilson but your face is saying John Malkovich.
I found him on the internet. What is happening.
So Doctor “Neilson” proceeds with the basic checkup things while I tell him the nightmare of my Lyme issues which was unavoidable as no doctor can look at a PICC line and ignore it. He then looks over my hearing test and he tells me my hearing is “actually superb” – Duh, I know. My sensitivity to sound these days has become a super power of torment because only I can hear the neighbor two doors down making coffee and the noises our fridge makes sounds like a NASA launch firing up and there’s this one commercial on TV for a sportsmen’s outfitter store that features an elk making some high-pitched (with low undertones?) honk whistle that sends me into the fetal position. I know my hearing is superb. Thanks though.
After the checkup rigmarole and looking over relevant past medical testing such as my brain MRI and head CT Angiogram, the following conversation ensues.
Doctor “Neilson”: How did you get Lyme disease? I know it positively doesn’t exist here in Utah…
Me: I contracted it in Michigan where I grew up and it wasn’t diagnosed until recently.
Me in my head: More ignorance I see.
Doctor “Neilson”: Sounds like you’ve been through quite the ordeal.
Doctor “Neilson”: Well, I’m sorry, everything looks fine, your previous testing shows no vascular abnormalities, your MRI shows no tumors, and my exam showed a perfect looking ear and normal sinus cavities.
Me in my head: Okay…
Doctor “Neilson”: All I can tell you is that you are a young, pretty, unfortunate thing.
Me: *some kind of snort/hummph sound I don’t know I was caught off guard whywouldadoctorsaythat*
Me in my head: I’m sorry, what? Really? *looking around* Is this some kind of joke? *looking around the walls for some type of framed medical license* Did you get these medical posters off Amazon? Where are the cameras. Am I on some type of show? You’re really John Malkovich aren’t you. He would say something like that. This is ridiculous. Can you tell me what the diagnostic code for “young, pretty, unfortunate thing” is so I can give that to my insurance company?
Doctor “Neilson”: I wish you good luck, thank you for coming to see me, I have found your visit very interesting.
Me in my head: Give me back my $45 insurance co-pay.
15. E̶N̶T̶ ̶D̶o̶c̶t̶o̶r̶ – Confirmed.