Last week, the Centers for Disease Control and Prevention (CDC) estimated that about 300,000 Americans are diagnosed with Lyme disease each year—a number based on data from insurance claims, clinical laboratory records, and self-reported cases from patients. It’s much higher than previous estimates, and media outlets chimed in with sensational headlines like, “Lyme Disease is 10x More Common than Once Thought!”
My reaction: Well, duh. And in my non-scientific opinion, it’s probably even higher.
Who am I to make this claim? Well, let’s just say that during the two and a half years it took me to receive my own Lyme disease diagnosis, I became painfully aware of two things: 1) People infected with Lyme don’t always display the classic symptoms, so they never think to get tested; and 2) diagnostic tests often result in false negatives, so people are slipping through the cracks.
Personally, I don’t remember a tick bite, and like 30% of all Lyme sufferers, I never got the “classic” bull’s eye rash. What I experienced was gradually worsening ankle pain with no apparent cause. After an MRI, I was told I had tendonitis in my left ankle and that physical therapy would help. But it didn’t. So I began getting second, third, and fourth opinions. I travelled up and down Manhattan seeing orthopedists, rheumatologists, physiatrists, and pain management specialists. They ordered MRIs of my joints and brain; nerve conduction tests; and blood tests for rheumatoid arthritis, lupus, and yes, even Lyme disease. Other than a little swelling, everything came up clean. In the words of my least favorite doctor, “There’s nothing else we can do.”
The pain didn’t stop. Eventually, it made its way to my right ankle, knees, and arms. My muscles felt fatigued after just seconds of standing, and I developed a tingling pins-and-needles sensation in my feet and shooting pains up my legs. Any progress I made from resting was negated when I reintroduced physical activity—a harsh reality for someone who used to run four miles a day. With no answers in sight—and not being able to stand up or walk long enough to get to the subway, go grocery shopping, or even just make myself dinner—I quit my job and moved in with my parents.
Luckily, the universe decided to throw me a bone. My new physical therapist mentioned that a former patient with similar symptoms finally got relief after being treated for Lyme disease. At first I dismissed this, saying I’d already been tested, but he then went on to explain that standard Lyme tests at the doctor’s office (Western Blot, Elisa) miss an alarming amount of Lyme cases—they’re often only 45 to 65% accurate. “Lyme-literate” doctors, on the other hand, will look at your entire medical history, not just individual symptoms, and send blood samples to labs specializing in Lyme testing, like IGeneX.
With nothing left to lose, I booked an appointment with a doctor affiliated with the International Lyme and Associated Diseases Society (ILADS). After relaying my lengthy medical history to him, he was almost convinced I had Lyme. The results of my blood tests made him certain.
That was 10 months ago, and since then, I’ve been on a combination of antibiotics to treat what’s considered “chronic Lyme”—a term used for Lyme disease that’s gone untreated for months or years, or that persists despite treatment. The use of long-term antibiotics is controversial, but from my experience, it’s been life changing. After the first three months, I had less pain; after six months, I could walk around the block; and today, I can go on three-mile hikes. I’m still not 100%, but I’m close.
So here’s my advice as tick season winds down: If you’re experiencing mysterious symptoms like mine, or the ones listed here, ask your doc for a Lyme test. If it comes back negative, but your symptoms linger and you’ve ruled out other diseases, consider seeking out a Lyme-literate doctor affiliated with ILADS. When it comes to your health, leave no stone unturned. I’m so glad I didn’t.