Four summers ago, Christina Sfakianos went from feeling fit and energized to noticing she was sluggish and unfocused. Her general practitioner tested her for Lyme, but said age was to blame— she was 35 at the time —when the test came back negative. Then, the New York City woman’s health worsened. She eventually found relief by working with a Lyme specialist who monitored the care she received from an integrative practitioner. She shared her tips with WellBe on how to find Lyme-literate doctors, how to check for ticks, and more.
The summer after Christina had a baby, she began taking SoulCycle classes out in the Hamptons, and was happy to see her fitness, endurance, and energy levels quickly returning to normal. But the following summer, when she returned to her class in the Hamptons, she suddenly became sluggish and couldn’t keep up. At the same time, she started experiencing headaches and felt spacey much of the time.
She went to her doctor to just check in, and specifically asked for a Lyme test. When the test came back negative, the doctor dismissed Christina’s symptoms, telling the 35-year-old that she was just getting older and should take it easy. “I didn’t think twice about it, and I kept going with my routine,” Christina remembers.
But that December, she became so sick that she couldn’t get out of bed. She went back to her doctor, who told her that she’d probably gotten the flu, and prescribed her a Z-pak just so they could “cover their bases.” Her fever broke, and she began to feel better, so doctors assumed they were on the right path. So along with the Z-Pak she was given a drip of Receptin and a 5-day course of steroids — which should never be given to Lyme patients — along with a two-week course of antibiotics.
By the end of December, she had developed a headache that was so bad she couldn’t think or function, and decided to admit herself to the hospital. She called her GP to let her know, and the doctor called back a few minutes later with some news: she’d re-run the Lyme tests, and Christina was Lyme positive.
From there, Christina went on a long journey to healing. Lyme-literate doctors were — and still are — hard to find, and so her journey involved many rounds of medications that did her more harm than good. It got so bad that she couldn’t even help her daughter with second grade math homework, not to mention the 30 pounds she lost from reactions to all the medications she had taken.
How to Find Lyme-Literate Doctors
People often ask Christina what to do if they find a tick on them. Among the advice she gives them, the most important piece is this: find Lyme-literate doctors.
“You need to find a Lyme-literate doctor immediately. There’s no reason why you can’t reach out to an infectious disease doctor immediately,” she says. She notes that sometimes it’s difficult to get an appointment with an infectious disease doctor; however, because many of them are in the midst of research on Lyme, sometimes they’re eager to see patients with tick bites to help with testing and studies.
Even if you’re working with a conventional doctor, Christina recommends having an honest conversation with them about how open they are to alternative and complementary treatments. She says that working with a doctor who was open to an integrative approach was essential to her recovery.
Before getting Lyme disease, Christina says she didn’t have an awareness of the prevalence of the condition nor the importance of regularly checking for ticks. But after her diagnosis, she started doing nightly tick checks with her family. As she learned herself, you don’t have to be in the woods to be bitten, so even if you don’t think you were in a place where you were exposed to ticks, it’s essential to do a check. “The thing that’s always amazing to me is you don’t have to be hiking or in grass up to your knees,” she says.
Christina is now a pro in how to check for ticks. First, she explained, you need to look where ticks like to go on the body. They like dark areas and crevices, so you should check places like underarms, behind ears, groin area, ankles, and hairline. When checking those areas (and others), you should be deliberate and thorough.
If you do find a tick, don’t just flush it down the toilet — save it. This way, you can send it off to be tested if you think you have contracted the disease. Above all, she recommends making sure that you have a solid plan of what you’ll actually do if you find a tick on yourself or a loved one.
Watch the full WellBe interview with Christina below to hear how her symptoms got so bad at one point that she didn’t even realize she’d cut herself until she was bleeding into her daughter’s dinner (that was from the nerve damage) and how she worked with a Lyme specialist at Johns Hopkins Medicine Lyme Disease Research Center and an integrative practitioner to finally feel normal again. You can also listen to Christina’s full interview on our podcast.
The recovery story above is anecdotal and specific to this particular individual. Please note that this is not medical advice and that not all treatments and approaches mentioned will work for everyone.