I Trusted My Gut Over My Doctor—and It Saved Me from Lyme Disease
In June of 2016, I attended a toddler's birthday party in Hastings-on-Hudson, a lovely, forested town just north of New York City. With spotless June sunshine, the entire party was hosted outdoors. Imagine Thomas the Tank Engine on every piece of tableware, plus blue balloons and bubble machines. It was idyllic, and after spending the day picnicking and chasing the miniature guests around the wooded property, I returned to the city in the evening, exhausted but ineffably happy.
The Onset of Symptoms
Unfortunately, within five days, I started showing symptoms of what appeared to be a nasty flu. I was weak, achy, feverish, and fatigued. Of course, having been surrounded by toddlers and riding the subway home, I knew I could have contracted a virus any number of places. Yet, something told me this wasn't an ordinary sickness. I did my best to beat the apparent flu, but when rest and vitamins failed, I sought the help of my doctor.
By this point, two weeks had passed since my trip. I was already so weak that I couldn't walk the six blocks from my apartment to the doctor's office. In fact, it was a serious struggle just getting out of bed. My energy levels were shot. I constantly found myself too tired to function. If you live in New York City, you know how ridiculous it is to take a two-minute taxi ride, but so began my journey of back-and-forth doctor's visits and repeatedly inconvenienced cab drivers.
Now, I'll be the first to admit that I'm every doctor's worst nightmare. Prior to any appointment, I spend hours poring over the Internet (a hypochondriac's Holy Grail) researching my symptoms. Naturally, I'd been doing just that since becoming ill, and had narrowed my findings to one unexpected possibility: acute Lyme disease. Though I never noticed a tick bite nor saw the slightest rash, my symptoms aligned perfectly, so I raised this idea with my doctor. (And, for what it's worth, incidences of Lyme disease are expected to spike this summer.)
"I spent the entire day in a grassy field surrounded by woods," I told her. "And there are tons of deer up there, so it's possible."
"Did you find a tick bite?" my doctor immediately asked.
"A rash?" she pressed.
"Then it's not Lyme," she decided.
And that, so it seemed, was the end of it. I continued to suggest that we shouldn't rule out Lyme, but my doctor felt differently. Instead, she would test for mononucleosis and anemia, advise that I rest, discuss energy-boosting techniques, make a few dietary suggestions (I'm vegetarian), and send me on my way.
Why Doctors Miss Lyme
According to leading Lyme disease specialist Raphael Kellman, M.D., of The Kellman Center in New York City, this professional response isn't all that uncommon. "Lyme fools so many doctors and health professionals," says Kellman. "If the patient says 'no' to having a tick bite or rash, unfortunately, most [doctors] dismiss the possibility of Lyme disease altogether. Of course, this is a grave mistake, as most people who develop Lyme disease, especially chronic Lyme disease, have no recollection of ever having a tick bite or rash."
When my blood test results returned, I was informed that "everything looks normal," yet my symptoms were worsening by the day. On top of extreme levels of fatigue, I started experiencing excruciating bone aches-like teenage growing pains on steroids. They were particularly bad at night, and felt like someone was playing tug of war with my bones. With nowhere else to turn, I hopped in another two-minute cab and returned to the doctor's office.
"I really think I could have Lyme," I told my new nurse.
"Well, did you ever develop a bullseye-looking rash?"
"No, but I read that-"
"-oh, then it's definitely not Lyme," she assured me. "Trust me, you'd know if you were bitten."
This time, docs decided to test for a thyroid problem, discuss fibromyalgia, and so on. Once again, Lyme seemed off the table.
So I returned home waiting for answers that wouldn't come, and as the weeks passed, my symptoms became dangerously grim. Unable to leave my apartment or carry out everyday tasks, I started feeling depressed.
"Frequently, people will complain feeling 'out of it' and foggy, like the world is surreal, that they're not really present or within reality. It's a very common quote that people 'feel like they're dying,'" says Dr. Kellman. "This can be associated with anxiety (sometimes severe anxiety) and panic attacks. As such, it's not uncommon for patients to be referred to a psychiatrist, because the symptoms sound so bizarre and atypical of any other disease. It's unfortunately very common for doctors to assume that patients with such symptoms and complaints have problems that are psychiatric." (Read about another difficult to diagnose condition: PCOS.)
Taking Things Into My Own Hands
Then, one night, the right side of my body went numb. The same side of my face was fully paralyzed and felt like it was being electrocuted. I've never been so afraid for my health as I was in those few minutes, believing I was experiencing a stroke. I made one final, desperate attempt at help from a doctor.
To my surprise, the nurses and doctor were totally unfazed by the news of my half-body paralysis, and thought it would be helpful to perhaps change my birth control. Knowing this wasn't the issue, I pulled up my research and insisted they run a Lyme panel test. I was at the end of my rope and thankfully won the argument.
As you might expect, I felt so vindicated and relieved when I got the call that I'd definitively tested positive for acute Lyme disease. It's not the news anyone wants to hear, but I finally had answers. The same day, I began a month of intense antibiotics and shortly thereafter returned to normal. Had I trusted my doctor's incorrect stance that "there's no fire without smoke," my Lyme certainly would have progressed to wreak more havoc on my health.
Being Your Own Biggest Advocate
I'm here to tell you that, according to the Centers for Disease Control and Prevention (CDC), 20 to 30 percent of people will not display a rash or bite, nor realize they were ever bitten. I was one of those people. To avoid ever being in my situation, the best thing you can do is be informed about the symptoms of Lyme disease.
"A primary reason Lyme disease is so elusive and difficult to diagnose is that it can present with so many different symptoms," says Dr. Kellman. "One could develop joint pain, headaches, various neurological symptoms like tingling and numbness, brain fog, and neck pain. When the symptoms persist for longer than 24 to 48 hours, the symptoms tend to be migrating, like joint pain that migrates and isn't localized to one particular joint. If symptoms change, or numerous symptoms begin to develop, then one should strongly consider Lyme disease. Again, do so even if there was no tick bite, tick, or rash noticed," he affirms.
Further, I was under the impression that I only could have been bitten if I'd been in a forested region, but I've since learned that Lyme disease can be contracted anywhere.
"As a physician here in New York, I have so many patients who come from all over," adds Dr. Kellman. "It's not uncommon for many people to develop Lyme disease even if they don't live in the typical areas associated with it."
If your instincts tell you that you might have Lyme, stand your ground and get tested, or find an informed doctor who will listen. "So many doctors are hesitant to test for Lyme disease because it unfortunately isn't well known. It's just beginning to be taught in medical school, and it's not widely recognized for how common it is, which is of epidemic proportions."
While you may not necessarily "know better" than a doctor, no one can know your body better than you.