The summer of 2008 was a happy time for me. At 33, I had almost finished training for a career in speech therapy and had given birth to my first daughter, Maya. To celebrate, my husband, Warren, and I rented a house on Long Island for a relaxing getaway. But an unwelcome guest hitched a ride home from the beach on my backside.
It was a tick. I noticed the tiny bump in the bathroom mirror a couple of days after returning home to Manhattan, and Warren pulled it out. At first I panicked—I knew that tick bites are associated with Lyme disease. Even though I didn't get any of the symptoms (a fever or a rash), I checked with a doctor, who gave me a few days' worth of antibiotics as a precaution and sent me for a blood test; the results were negative. I remember thinking, Thank goodness it wasn't Lyme! What I didn't realize is I probably had the test too early. The standard tests look for antibodies that fight Lyme, and it can take weeks for them to show up in your blood.
Within a few months, my body began going haywire. First I had an unusually heavy period. Then my tongue developed odd white patches. Next came excruciating neck pain and overwhelming fatigue. I couldn't even pee properly! I would get this weird pulling sensation as I went to the bathroom.
I saw specialists for each new symptom, but it never occurred to me to mention the tick bite. After all, I had already tested negative for Lyme. The doctors looked into each individual symptom, finding nothing wrong. A few of them brushed off my worries, saying that I was just a nervous new mother, which was incredibly frustrating. When something is really wrong, you know it. My husband was worried that I was going to drive myself crazy, but I told him I would do whatever I needed to do to find an answer. I would keep asking questions until someone took my symptoms seriously.
The months wore on, and new problems arose. Suddenly there was a rash on my chest. I had always loved jogging, but my toes became numb when I ran. When I told friends about my problems, they would try to sympathize, but they didn't think anything was really wrong. I finally stopped talking about it—I didn't want to be the annoying friend with all the weird medical complaints! My neck and back hurt so much that I could only walk all hunched over. Every time my father saw me, he would be a typical dad and say, "Lauren, you need to stand up straight!"
Warren was incredibly understanding, perhaps because he had been struggling with his own mysterious health issues for years. He, too, was often tired—his friends teased him, saying he was the guy who had to go home early just as the fun was getting started. He had been diagnosed over the years with things like mono and chronic fatigue syndrome, but none of the treatments he tried made any difference. He had been tested for Lyme, too, but the test results were negative.
When I got pregnant with my second daughter, Lyla, the exhaustion hit a new level: I'd look at mothers pushing their strollers and wonder how they had the energy to do it. At the same time, I began having paranoid thoughts about the end of the world. One doctor suggested I see a psychiatrist. I felt like everyone thought I was crazy! But I never doubted that something had gone terribly wrong with my body, because I remembered what it was like to feel normal. I'd look at my daughters and think, If I don't get better, who will do mom things, like teach them how to shave their legs? So I pushed forward with a strength I never knew I had.
Even though I had hit a wall with my doctors, I continued searching for an answer on my own. As I began reading heartbreaking accounts of people suffering from problems like mine—people with long-term Lyme disease—I remembered that tick and thought, Could I have Lyme? Then came another realization: My symptoms, and the ones I was reading about, were eerily similar to the ones that had dogged Warren for decades. Perhaps he, too, had been suffering from Lyme disease all along.
Finally, in late 2012, we both met with a Lyme specialist at the Morrison Center in New York City, an integrative health center run by an M.D. Based on our symptoms and on blood tests at two high-tech labs (IGeneX and Stony Brook University, Lyme Disease Laboratory) that do more detailed testing, Warren and I were officially diagnosed with the disease.
It was so gratifying to finally have an answer, to talk to someone who listened and treated me with respect. Lyme is a diabolical disease, and a lot of damage had been done to our bodies, so we knew it would be a long recovery. But now we had hope—and a plan.
Since Warren was diagnosed with some additional infections, he began a course of antibiotics. After my doctors and I discussed both medical and alternative options, we agreed that I'd try a natural treatment regimen first. If that didn't work for me, I'd take the antibiotics. We both rebooted our diets, giving up gluten, sugar, dairy, and alcohol to reduce the inflammation caused by Lyme. In consultation with our doctors, we also continued taking traditional Chinese herbal remedies that we'd used before, and I started supplements. Within weeks, I began to feel better.
We still have our ups and downs, but I'm improving in so many ways, big and small. I'm enjoying walks to the park with my girls now. I can sit on the floor with them and play board games, which sounds so simple but was nearly impossible before.
I feel more like the person I was before that summer at the beach. Reading to the girls recently, as they cuddled against my once-aching neck, I suddenly realized: We're having fun again. I'm glad I kept pushing for an answer, even if people thought I was crazy—my gut guided me back to health.
Fighting Lyme: What You Need To Know
Lyme disease is a medical chameleon—it can be mistaken for flu, arthritis, even multiple sclerosis. An estimated 300,000 people will be diagnosed with Lyme this year, but many more may be misdiagnosed. Here's what to do if you've been bitten by a tick.
What to do right away: If you spot a tick, pull it off carefully with tweezers, making sure to remove the head, and call a doctor. In some cases, you may be prescribed a single dose of antibiotics even before symptoms appear (fever, chills, and a round, oval, or bull's-eye rash are common, but not everyone gets them), says Brian Fallon, M.D., director of the Lyme and Tick-Borne Diseases Research Center at Columbia University. The standard blood tests, ELISA and Western blot, check for antibodies to the bacteria that causes Lyme (Borrelia burgdorferi); they're most accurate when done four to six weeks after infection. If your test result is positive, the recommended treatment is 14 to 21 days of an antibiotic like doxycycline or amoxicillin.
What to do if you don't get better: Even if Lyme disease is caught and treated early, for up to one in five patients, symptoms can linger for months or years—the CDC calls this Post-Treatment Lyme Disease Syndrome, and there is wide disagreement in the medical community about its causes and treatments. If you find yourself with continuing joint pain, neurological troubles, or other unexplained health problems—even if your initial Lyme test came back negative—consider talking to a Lyme disease specialist (find one at tbdalliance.org or ilads.org) about more extensive blood analysis and treatment options.
This story originally appeared in the August/September 2014 issue of Dr. Oz The Good Life.