On May 4, 2016, around the dinner table at an Oakland restaurant, my family shared an eerie toast: “To Lyme disease!” It sounds absurd, but let me explain.
For the better part of a year (really more, now that I think about it—but we’ll save that for later), I had been chasing answers to my various “issues.” They were relatively mundane at first and seemingly easy to explain: a stiff neck, no doubt product of my deskbound day job; headaches, low-grade enough to let me function but so constant as to pull a dull film over just about everything; poor balance (disappointing since perfect balance was my calling card as a little girl in Miss Laura’s ballet class); blurring vision and a charming nystagmus that pitted me against all of San Francisco’s evening commuter cyclists whose flashing lights taunted me toward panic attacks; oh, and panic attacks; and a nettlesome “whooshing” in my right ear that was either (a) just a symptom of the headaches or (b) a thoughtful heads up from the Angel of Death that I was about to have an aneurysm.
I began weekly visits in the Nob Hill office of Dr. Sergio Azzolino, a neurological chiropractor and great guy for whom my husband Jake (a chiropractic student) is an intern. After a few months, with regular adjustments for my rigid neck and some neat neurological video games to help with my vision and balance, things seemed to improve a little. That is, until I nearly fainted in my chili on the tail end of a snowshoeing trip to Tahoe. In the moment, I chalked it up to wine and altitude, but I knew. I knew, how you do, that something was off.
For the next seven straight days, I couldn’t work. Hell, I couldn’t even stand up without falling back onto the sofa—sweating, dizzy, and nauseated as though I’d popped a molly. Strange things happened. One night, I was just chilling on the couch in my drafty SF flat, and some feisty demon turned a blow torch on my right foot. Out of nowhere, for no reason at all, my right foot—just the one!—swelled into a red-hot fireball ready to explode into a Chihuly sunburst. I shit you not.
So, it was back to the chiro for more neuro tests. Follow my finger. Close your eyes. Touch your nose. Stand on one leg. Do the alphabet backwards. Spin this beach ball on your nose. (Just kidding.)
“I’m convinced I have MS,” I told Azzolino. “I have all the symptoms.”
Numbness, tingling, clumsiness, vertigo, double vision, anxiety, headaches, muscle aches. The list went on. I will spare you.
“You forgot to mention the 200 other diseases whose symptoms match yours,” he retorted, admonishing my Googling ways.
Blood work galore turned up a plethora of dormant viruses as well as autoimmunity. See. And yet, I’m healthy—”the healthiest we’ll see all day.”
An MRI was ordered. A Lyme test, too. Yeah right, I thought. I haven’t had a tick bite since I was too young to remember it exactly.
A clean MRI dashed my self-diagnosis, but some fluid in my cerebellum left me unconvinced. A decade earlier, my mom had experienced identical symptoms—unlike me, though, she had also been falling down—and a nearly identical MRI. “The brain of a person with MS,” her doctor had said. Only it wasn’t. She was diagnosed with MGUS (“Monoclonal gammopathy of undetermined significance”), which can be a precursor to multiple myeloma. Years later, she was also diagnosed with rheumatism (inaccurate, according to a second opinion at Stanford). But mom has a cousin, who lived in the same Missouri assisted care facility as my grandmother (miss you, Mama), with ALS—he had once regaled us with tales of mom’s Slovenian kin from his wheelchair straight out of science fiction. My cousin, mom’s niece, has Hashimoto’s. Autoimmunity is in my blood. I was screwed.
And then, on the morning of May 4, Dr. Azzolino called me himself. Uh oh. My test results were in from iGeneX, the Palo Alto lab known to be the leader in testing for tick-borne illness, and the only one Azzolino trusted to yield an accurate result. (There’s much more to say about this. Stay tuned.)
“Your test came back positive for Lyme.”
“But I never saw a tick.”
“They can by tiny—larval.”
“Yes. We need to start you on antibiotics tomorrow.”
“I’ll be there.”
And that was it. Eight hours later, I raised a glass of Champagne to a diagnosis I knew nothing about. It wasn’t MS. It wasn’t a tumor. I wasn’t going to die. Yay! I hadn’t even bothered to Google Lyme disease because the notion seemed so far-fetched. To me, in that moment, the disease was little more than a urinary tract infection—nothing a round of antibiotics wouldn’t kill.
Fifteen days later, I couldn’t walk—at all. Five days after that, I landed in the ER with a full-blown seizure. Journal entry on May 25: In three weeks, I have gone from being a person who hikes every morning to a person who has “episodes” and seriously considers crawling to the bathroom.
If you (1) do not have Lyme disease, (2) don’t know anyone who’s had Lyme disease, and (3) are anything like me, you might be saying to yourself,What the f*@#?!
Welcome to Lyme disease—the most twisted and fastest growing global pandemic, which is being systematically brushed under the rug thanks to shystie medical/pharmaceutical/insurance company politics while, each year, 300,000 new sufferers are diagnosed with Lyme, just waiting to lose their lives and livelihoods in pursuit of proper modern treatment.
I will share it all straight up, from my own experience to all I learn along the way. Get ready—Lyme disease is fully loaded.