I Had a Mysterious, Debilitating, Undiagnosable Illness
by Lucas Kavner
I can probably pinpoint the moment that my recent, insane, undiagnosed health problems morphed into such a state of malignant comedy that I could only laugh and then cry and then not laugh again for a few more weeks.
This moment came a few days after I was blood-tested for Lyme Disease, likely my 7,384th blood test of the past year, and I called my primary care doctor’s office and inquired as to the results.
“Negative,” the nurse said. “It’s all negative.”
Two full days later, a different nurse from the very same doctor’s office called to tell me she had some news for me.
“Your Lyme test came back positive,” she said.
“It did?” I said. “But you told me it was negative.”
“No I didn’t,” she said. “Someone else must have told you that.”
“I don’t know,” she replied. “But it’s positive.”
I’d come to expect such hilarious “Who’s on first?” type goofs from doctors and nurses, because in the past year I’ve had a laundry list of unexplained health problems that have knocked me out for entire months, but no doctor can figure out exactly what’s going on.
It all began while I was working on a play in Atlanta last May, when about halfway through a performance, I stood up and felt like I was having a stroke. I could barely feel my body, my vision was blurred, my heart started racing and I had trouble breathing. These are all difficult feelings to experience, especially while performing a play for 500 people under bright lights, punching actors in the stomach and singing alt-country songs.
I wondered if it could be a panic attack, but when the dizziness and general death-feeling refused to let up over the next few days and I could hardly walk or stay awake, I went to the hospital where they diagnosed me with “benign positional vertigo.” I was given some pills, which didn’t do anything, so I went to see another doctor to follow up.
A non-medical friend had suggested I might have an “inner ear infection,” which sounded fair enough — those can apparently cause crazy dizziness and fatigue. So I suggested this diagnosis to the doctor who laid me down on a table and did a test where she turned my head back and forth a few times.
“Does that make you dizzy?” she asked.
“It does,” I said.
“Then it’s an inner ear infection!” she announced with a smile, as if she had figured it all out herself, as opposed to my non-medical friend.
When I got back to New York from Atlanta, I was still feeling dizzy and exhausted most of the day, taking frequent naps at my job’s very real “Nap Room,” so I went to an ENT (an ear, nose, and throat specialist) who did extensive ear tests, because I logically still thought I had an inner ear infection, this being the diagnosis given to me by my non-medical friend and then confirmed by my medical doctor. The ENT flushed out my ears with water, gave me a hearing test and told me my ears worked fine.
“So what is it?” I asked.
“Could be anything,” the ENT said.
(Usually a diagnosis of “Could be anything” would suggest a follow up, perhaps, to try and ascertain what “anything” could mean, but as I learned repeatedly as I traveled the Great American Healthcare System: This is very much not in this case.)
About a month later the dizziness suddenly morphed into debilitating migraines, which involved curling up in a fetal position on the floor, nauseous and pounding, unable to hear a loud noise or look at a flickering light without wanting to murder everybody.
Bouncing around my dear friends’ many weddings around the country last summer, I honestly can’t remember a single weekend where I didn’t feel like a tiny person was boring into my brain and attempting to remove its contents. While feebly dancing to “Shout” under well-lit tents I was pounding down gallons of water and anxiously awaiting the moment I could crawl into bed and cover my face with the pillow.
My primary care doctor ordered me a brain MRI (yikes!) which was normal, and then told me to see a neurologist. The thing with my former primary care doctor is he’s one of those New York doctors happy to hear you for 2 minutes and then quickly cart you out the door with a prescription. Despite his four stars on Yelp, which were initially comforting, I decided I didn’t trust him, and instead resorted to Google-town, where I have remained ever since.
In Google-town, I became president. But it wasn’t just aimless Googling like some Google Charlatan: I read professorial essays from professional medical reports! After months of no answers, I was an Honors Graduate of Google Medical School. How can one not be, when one is answer-less and feeling like a pile of ass?
The migraines continued with increasing ferocity so I sought out a “headache expert” who put me on daily migraine pills and also “emergency” migraine pills, for when the daily pills do nothing and you’re having an “emergency” migraine. The emergency pills actually made me feel like I was choking on bones and made my headaches worse, so I stopped taking those.
I got permanent eye floaters in my eyes — those little black dots that usually only come when you’re in the sun — and it became difficult to stare at the computer all day. I went to an optometrist, an acupuncturist, an osteopath, a naturopath, another primary care doctor. Still, the death-headaches continued pretty much every day.
“Stress!” some suggested.
“Wear a heating pad over your neck!” one said.
“I bet if you got a huge bonus with a lot of success this would all go away,” another particularly dick-ish doctor explained.
The headaches went on for about three months, until last October, when my legs started burning for no reason.
“How weird,” one thinks, when one’s legs start burning for no reason.
Unfortunately my legs started burning during Hurricane Sandy, so doctors were unavailable and the subways were out, but I was at the point where my legs were burning so bad I could barely walk, along with the migraines and all that jazz. So I found a local Brooklyn neurologist who wore an American flag tie and assigned me spinal MRIs and also this nerve test where they electrocute your limbs for 30 minutes using a magic wand. I also went to a local chiropractor who re-alligned my back twice and told me to elevate my legs at night.
After the storm I returned to my primary care doctor, who laughed when I told him about the burning leg pain and now numbness, the continuing light and sound sensitivity, the fatigue and the migraines. And then he said something I’ll probably remember forever:
“This is about the time I like to send people to DifficultDiagnosis.org.”
“Ha ha?” I replied.
But he was very serious, as was this website. It turned out my former primary care doctor also used the internet professionally. We clearly have the same Google degree, he and I.
At this point I had also read about late stage neurological Lyme Disease — it matched many of my symptoms — and before I went blindly to this web doctor with his aptly named website, I suggested he test me for that.
“Hm. Have you been in the Hamptons?” he asked.
“Once,” I said. “But I also went to school in Vermont, have hiked around the East Coast, and go to the mountains sometimes. Aren’t there a lot of ticks in the mountains?”
“Yeah, maybe,” he said, shrugging his shoulders, ordering the test.
The leg pain got worse and I sought out a US News “top neurologist” at a top neurology hospital in New York City, thereby abandoning my former neurologist with the American flag tie. My spinal MRI results had come back, reporting herniated and bulging discs in my mid and lower back. This must be causing the leg pain, I assumed, these herniated and bulging discs! I also started having random and excruciating back pain, which seemed to fit with that diagnosis.
“The herniated discs aren’t causing your pain,” the top neurologist at the top US hospital said. “These are nothing!” He added for emphasis, waving around my spinal MRIs like they were worthless to him, this US News top neurologist. He then ordered a barrage of other tests, including another, very similar nerve test where they electrocute your nerves for 30 minutes, but this one was in a different room, with a Russian woman, on the Upper East Side. And they added a needle instead of just a magic wand. They also ordered a nerve biopsy where they chop off parts of your legs and send them to a lab.
As November progressed, I began to get full body muscle twitches, nerve pain and weakness shooting through my hands, feet, legs, and hips, and this other new, fun thing where when I lay down for 2 minutes my entire back and abdomen started to pulsate with horrible pain. I stopped sleeping entirely, because I couldn’t lie down anymore. Even if I was achingly tired, my body wouldn’t let me sleep, not even for a minute. If I didn’t take an Ambien, I was awake all night.
A family friend hooked me up with a “doctor to the stars,” who had framed photographs of Sting and Nelson Mandela on his desk and costs about $700 out of pocket. “If you can’t trust Sting’s doctor, who can you trust?” I said to myself, or maybe out loud.
“It’s anxiety!” Sting’s doctor proclaimed.
Then Sting’s doctor gave me a physical and told me to take Aleve and Mylanta. And when Aleve and Mylanta (naturally) didn’t work I gave him a call, and he told me he didn’t know what was causing my horrible stomach pain and leg pain and back pain keeping me up all night long.
“See a Gastroenterologist,” he said. I asked him to recommend one and he told me to call his office the next day for the number. I did, and then he never called me back. I called again. And he never called me back. I really hope he’s enjoying my $700.
What Would Sting Do? I wondered. He would probably find his own Gastroenterologist on Google! So I found one who had great reviews and had won Patient’s Choice Awards. I told him my now practically insane and laughably long list of symptoms and he assigned me an endoscopy and colonoscopy. Do you know what the worst test ever is? It is called a colonoscopy and it is a very very bad thing.
When those tests also turned up negative, I told him I was worried it was pancreatic, since my GI symptoms and sudden, acutely awful back pain at night exactly mirrored those of pancreatic cancer.
“I don’t think you have pancreatic cancer,” he said. “But we should take a look!”
I told him I’d lost 15 pounds, my lymph nodes had swollen up to the level where I could barely talk, every time I stood up I felt like I was going to faint, and I couldn’t raise my arms or hold anything for longer than 10 seconds. Typing hurt, too, just in case this thing wanted to let me continue to write easily in some capacity.
“Wow,” he actually said. “That’s bad.”
He gave me an abdominal ultrasound and a CT scan, which I got after waiting in a gown alongside a collection of old Jewish ladies, who were very nice, and also wearing gowns. As I was leaving, the hospital told me the results of the CT were already done and I could ask my doctor for them. Of course, my doctor wouldn’t call me back to discuss them, because why would he? I waited a day for him to call me back, but he didn’t. So then I actually stooped so low as to create a fake doctor’s fax number and have them sent there, because I didn’t want to wait 5 days to find out I had cancer.
The results were normal.
At this point it’s worth noting that I did, in fact, have health insurance through my place of employment. It was CIGNA and it was good, and it very likely saved me many, many thousands of dollars. Without insurance, the amount of money I would have owed through all of this would have been deeply, painfully staggering.
Insurance also helped because I had to go on short-term disability and essentially stop my entire life without any discernible end date. Work, performing, writing long-term, exercise, going places with noises, walking for longer than 10 minutes, etc. etc. It all stopped.
But I will say that the one kind of beautiful thing that happened, somehow, is that with every piece of marginally good news, I actually became so grateful. For everything. I wanted to hold close the friends who stuck with me and listened to me incessantly bitch about this, to celebrate the girlfriend who loved/wanted to kill/get away from me for a large chunk of time, and I really truly knew that I wanted to be alive more than ever, to be be living life and seeing people and enjoying stupid things again instead of almost crying at every single Christmas commercial, and I knew I wanted to get better, even though it remained so damn confusing.
It’s times like these that you have to ascribe to the “everything happens for a reason” philosophy, or else you’ll go completely insane, right?
But back we were to the Lyme thing. The first Lyme Disease test came back positive, but then the “confirmation” test was negative. Ironically, late stage Lyme is nearly impossible to diagnose, because the CDC still doesn’t “believe” in the chronic version of it, and blood tests are wildly inaccurate. The only vague cure is months of IV antibiotics, and even that doesn’t work a lot of the time, and insurance companies don’t cover them. “Lymies” — people who have or believe they have Lyme Disease — flood online health boards to complain, rightfully, about how insurance companies treat them.
The problem is, according to the internet, everyone with a mysterious illness seems to think they have Lyme Disease. When you look up Lyme Disease symptoms you get a list of pretty much every single malady that can possibly afflict a human being (everything from memory loss to muscle pain to trouble breathing to the standard “bullseye rash”) and thousands of frantic posts from people who are convinced they have it and want to know what the hell they’re supposed to do about it.
A new doctor I began seeing last January told me it was “definitely” Lyme Disease, and I should begin an intense antibiotic regimen immediately, but then the Cleveland Clinic, one of the most renowned hospital centers in the world, told me it “probably wasn’t” Lyme. Sure, I could take heavy Lyme antibiotics “if I wanted,” but it couldn’t be guaranteed that anything would work. They suggested Fibromyalgia, Chronic Fatigue, and every other blanket autoimmune disease as a possibility.
But then when I came back to New York my new doctor told me, essentially, that the Cleveland Clinic was full of shit. He suggested I see a “Lyme specialist,” who incidentally costs $1,200 out-of-pocket. When I called this Lyme specialist, his nurse demanded $500 immediately as a “down payment” to guarantee me a slot.
This was when I, figuratively and literally, threw in the towel (as I had been sweating profusely, I often carried towels.) Whatever this was, it was just going to have to run its course.
This was part of my life now, and it’s time this mysterious illness and I became strange bedfellows. Pals. Amigos. Friends.
And then somehow, just as I had begun to accept this mysterious illness into my life, I began to feel better. It happened slowly, but it was very real. Though I’m still exhausted most of the day, still have random and unexplained twitches and muscle pain, and there are days where I long for a bed, it’s significantly better. And it doesn’t seem to be getting worse.
I also finally found a primary care doctor who has more than 30 minutes of time in his day, doesn’t charge exorbitant mystery fees, and actually uses email. When I have a question I can just send him a fucking email like a normal person. It seems like such a small luxury, but after months of trying desperately to get doctors on the phone, leaving messages with unhelpful assistants, it was a true and magnificent joy to meet a doctor who knows how to use a computer and actually seems invested in making you better.
“We’re living a lot longer,” this doctor told me last month. “But we’re also much sicker than we’ve ever been.”
Because of all the chemicals we eat and ingest, he said, among other things, there are sicknesses and allergies and problems we don’t yet understand. He meets someone almost every week who’s been sick for months and can’t figure out why. And while this seems like an unhelpful diagnosis, it was somehow so much more comforting than anything else I’d heard up to that point.
A sick person shouldn’t have to beg for answers. Lyme Disease specialists shouldn’t be able to charge $1,200 for a consultation. Doctors shouldn’t be allowed to say “I don’t know” and kick you out the door without a follow-up, nor should they sigh dramatically when a patient brings in a stack of tests for them to look over. We should all figure out whether we “believe” in Lyme Disease, especially if it’s maybe, sort of the largest “epidemic” in the country.
Whatever your opinion on the current state of healthcare in this country, we can all agree it probably isn’t working as effectively as it could be.
Lucas is a writer and performer based in New York. His work has appeared in McSweeney’s, The Washington Post, Flavorwire, and as a staff reporter for the Huffington Post. Co-creator of The Days of Yore. Twitter: @Lucaskavner.