When I first felt the sharp stab of pain between my shoulder blades in the fall of 2017, I wasn’t worried. Why should I be? I was a healthy, active, 26-year-old woman who’d never broken a bone, never been hospitalized, and hardly ever taken any medication. Surely this unexpected pain was nothing more than a mild strain that would resolve itself within a day or so. I slapped a heating pad on my back, took an Advil, and went about my day.
I should have been worried.
The pain in my back did not disappear. A few weeks later, a new pain bloomed in my tailbone. Not long after, I awoke to find my hands and forearms in so much agony I could hardly click a mouse, let alone type on a keyboard.
Something was seriously amiss.
So began my journey down the wormhole that is Lyme disease. Last May, the Centers for Disease Control and Prevention released a report showing that an increase in reported cases of Lyme disease is the No. 1 factor in the nearly 300 percent growth of vector-borne diseases in the United States from 2004 to 2016. Close to 30,000 cases of Lyme are reported each year, but studies suggest that the actual number is closer to 300,000. Lyme cases have been reported in every state, but many people are still uninformed about the disease.
With the rise in Lyme cases, healthcare professionals should be on the lookout for the disease, becoming more educated on how to diagnose and treat it properly. Unfortunately, my experience shows that Lyme remains controversial and frequently undiagnosed, misdiagnosed, or simply ignored.
Like a responsible patient, I booked an appointment at my primary care doctor’s office shortly after my first symptoms began. I saw his nurse practitioner, who suggested the pain in my hands could be due to carpal tunnel syndrome and the discomfort along my spine, a yoga injury. He wrote me a prescription for a course of oral steroids and told me to come back if that didn’t help.
Several weeks later, I returned. Not only had the pain persisted, but I now felt a strange soreness in my thighs and around my ankles. At times, I felt like I could not get enough air into my lungs. Deeply concerned, my doctor ran several routine blood tests, and when those came back negative, he referred me to the first neurologist available.
By then, two months had passed, and I was so weak I could hardly walk from my bed to my kitchen. The soles of my feet hurt when I stood. At times my skin felt so tender that I was sure even the softest touch would leave a bruise.
The neurologist performed several tests, including MRIs of my brain, neck, and thoracic spine; an electromyography; and more bloodwork. When the ELISA, the first of two blood tests for Lyme disease, returned abnormal, he reordered it along with the second of the two tests, the Western blot—which returned positive. Apparently, I had Lyme disease. Not a good diagnosis, but a diagnosis all the same.
The neurologist then sent me to an infectious disease doctor who would hopefully know how to treat the disease. Instead, she told me that the test was negative. The neurologist had read it wrong. I did not, in fact, have Lyme.
But, if it wasn’t Lyme, what was it?
And so we began again with more bloodwork, each round testing even more obscure and horrific diseases. West Nile virus. Dengue fever. Chikungunya. You name it, and I was tested for it. But according to my results, I was perfectly fine. On paper, I was a healthy young woman, even though in real life I’d been nearly bedridden for months.
Wondering if the neurologist had, in fact, gotten my original diagnosis correct, I asked the infectious disease doctor to retest me for Lyme. “We can,” she said, “but to get Lyme a tick has to be on you for at least 48 hours.” I didn’t recall a tick bite at all. Besides, she said, your symptoms don’t look like Lyme.
Instead of retesting me, she sent me to a rheumatologist. Kind and methodical, the rheumatologist performed an extensive physical exam, then (you guessed it) ordered additional bloodwork—this time for the most common to the most obscure rheumatic ailments. But when the bloodwork returned normal, she was at a loss. “We can treat your symptoms,” she said. “Go back to yoga. Try to take walks.”
And so, six months after my symptoms began, I went home, still as sick as ever, but with no plan for moving forward. Though I believe each of these doctors meant well, I was frustrated with what I perceived as a lack of thoroughness. I did not want to resign myself to life as an invalid at only 26.
Desperate for relief, I started looking outside the scope of traditional medicine. I began seeing an acupuncturist who sympathized with my frustration and whose treatment alleviated my pain. When a pain management specialist suggested I see an osteopath to help with my shallow breathing and unusual heart palpitations, I booked an appointment.
At my first appointment, the osteopath asked if I had been tested for Lyme. I told her I had and that the test was negative. She suggested that my symptoms seemed eerily close to those of Lyme patients and wondered if the test was a false negative. As it turned out, her father was a doctor of osteopathic medicine who specialized in treating the disease. He used a lab in California called IGeneX for his blood tests. The lab is somewhat controversial—mainly because it isn’t CDC approved and the test it performs is more involved than the average Lyme test—but many doctors familiar with Lyme think of it as the gold standard for determining if a patient has the disease. “If I were you, I would get retested,” she said.
I took her advice, and six weeks later the results from IGeneX returned positive. According to this test, I did, in fact, have Lyme.
A few days later, I began a 13-month, low-dose course of a broad-spectrum antibiotic called doxycycline, the same antibiotic that high schoolers frequently take to treat acne. Now, 10 months into the treatment, my energy is almost back to normal, and the pain along my spine negligible to nonexistent. Though I have some lingering discomfort in my hands, I have my life back.
But would I had I not fought so hard to get the correct diagnosis? And how many other patients with Lyme slip through the cracks because they do not have the energy or finances to advocate for themselves? With Lyme, a diagnosis and treatment plan can mean the difference between fully restored health and living with a severely debilitating and eventually life-threatening disease.
Given the CDC’s estimation of the increase in Lyme cases, healthcare professionals should familiarize themselves with the symptoms of the disease and the literature on how to treat it. They should understand their options for blood tests but also evaluate their patients symptomatically, as the blood tests are often wrong. This isn’t just my opinion. Doctors who treat Lyme in the Dallas area agree.
“The diagnosis of Lyme is first and foremost clinical,” says Dr. Ronald Wilson, who has treated about 5,000 Lyme cases in nearly 15 years at his practice in Denton. “The lab tests that are available and covered by insurance are not accurate or sensitive enough to detect the Lyme organism.” Most of his patients self-diagnose by researching their symptoms online and communicating with other Lyme patients on social media before seeing him for a consultation, he says.
Similarly, Dr. Constantine Kotsanis, a functional medicine doctor in Grapevine, says that though a straightforward approach involving a test that leads to a diagnosis that leads to a corresponding drug does, in fact, work most of the time, that’s not the case with Lyme. When it comes to diagnosing a Lyme patient, you must look for indirect clues, he says.
For those lucky enough to get a positive test result, the short-term antibiotic course recommended by the CDC often fails, Wilson says. This is especially true in a case that’s gone undiagnosed for some time, perhaps up to five, 10, or even 30 years—and that’s most of the cases he treats. For those patients, doctors like Wilson and Kotsanis prescribe additional antibiotic therapy and, in many cases, supplementary therapies like oral probiotics, antivirals, and antifungal creams to support the immune system for better recovery. The majority of their patients go into remission.
Bottom line, if you suspect you may have Lyme, you must advocate for yourself. As my experience shows, no one else will advocate for you.
Or, if you do not have the strength, do what I did. Ask your tenacious mother to make the confrontational phone calls for you. Or, better yet, wear bug spray when you’re outside. Don’t get Lyme at all.
This piece was by Elizabeth Hamilton, whose work has appeared in The Dallas Morning News, Christianity Today, D Magazine and The Woven Tale Press.