Living and Thriving (Finally) With Lyme Disease
Lyme disease is a bacterial infection transmitted by the bite of an infected tick. When Nicole Greene was bitten she had never even heard of Lyme disease. Here is her story.
Sometime in the summer of 2001, a tiny tick found its way into Nicole Greene’s hair. It burrowed through her thick curls to her scalp and dug itself in. She didn’t notice it. She never felt a pinch, a tweak or an itch. She only discovered the unwelcome hitchhiker by accident while pulling her unruly hair into a pony tail. “I felt something on the right side of my head,” she says. A friend who was with her pulled the tick out and flushed it down the toilet. “I never even saw it,” Ms. Greene recalls.
She soon forgot the incident, unaware that this tiny creature, barely bigger than a sesame seed, had left behind an enormous problem: Lyme disease.
Named for Lyme, Connecticut where the disease was first identified over 50 years ago, Lyme is a bacterial infection transmitted through the bite of a black-legged or deer tick. Currently, it’s the most common insect-borne infection in the United States. Recently, the Centers for Disease Control and Prevention (CDC) significantly upped its estimate of cases in the US. The CDC now estimates over 329,000 new cases of Lyme disease each year. That number is 10 times higher than the 30,000 plus confirmed cases reported annually to the agency.
Back in 2001, when that tick bit her, Ms. Greene had never heard of Lyme disease. At the time, Lyme was mainly found in the Northeast. In Maryland, where Ms. Greene lives with her family, only 608 confirmed cases were reported to the CDC that year. Six years later in 2007, Ms. Greene would become one of Maryland’s 2576 confirmed cases.
Anywhere from 40%-80% (estimates vary widely) of those infected with Borrelia burgdorfer, the bacteria that causes Lyme, will develop a bull’s-eye rash (erythema migrans) within 3 to 30 days of being bitten. This rash is considered definitive for Lyme and should be immediately treated with a six to 12-week course of antibiotics.
But a significant percentage of those bitten never exhibit that telltale rash and have no idea that they’ve been infected. In some cases, early-stage Lyme is symptomless. Or the symptoms may seem like everyday illnesses—a cold or the flu, fever and fatigue, headache, muscle or joint pain. Muscle and joint pain can migrate from one body part to another.
Patients can feel sick one day and well the next. Left untreated, Lyme can wreak havoc on the body causing arthritis, persistent joint pain, cognitive issues, neuropathy, encephalitis, exhaustion, tremors and sometimes fatal heart problems. To further compound the problem, Lyme doesn’t always travel solo; Lyme-carrying ticks often transport co-infections that are also difficult to diagnose.
According to lymedisease.org, most Lyme patients are initially misdiagnosed with chronic fatique, fibromyalgia or depression.
Something Isn’t Right
Ms. Greene first realized that something was amiss in October 2001. The happy, outgoing 26-year-old who enjoyed her work for the Health Resources and Services Administration (HRSA), part of the US Department of Health and Human Services, morphed into “a miserable, horrible, cranky, person,” she recalls. “A gloominess and dullness settled on me,” she adds. “When I think back [on those days], I would not have wanted to be anywhere near me.”
Sadly, she didn’t know what was happening to her. Life was good and she had “every reason to be happy,” and yet she wasn’t. She tried herbal interventions, taking St. John’s Wort and Gingko Biloba. She exercised and read self -help books. Desperate to distract herself, she took up pottery, too but nothing helped.
Soon, other symptoms surfaced. She developed an extreme sensitivity to light or noise. But when the nightmares and anxiety set in, she realized that “no amount of gingko was going to help”. She went to a psychiatrist who diagnosed her with clinical depression and prescribed an anti-depressant. With the eventual diagnosis came relief and hope. “I thought now we can fix this and then people will like me again because I had started not liking myself,” she says.
Like many Lyme disease sufferers, Nicole’s symptoms waxed and waned. She felt better and then she felt worse. She was plagued by colds that “turned into bed-ridden flu.” She had “many weird rashes and times when I’d get overheated from doing absolutely nothing,” she says. When she started having pain in her left hip and knee, she attributed the symptoms to additional pressure on her joints caused by weight gain, a side-effect of the medication for depression. “I felt like a magnet for every illness out there,” she says. “If there was something to catch I caught it. If there was a rash to get, I got it.”
Her family began to think she was a hypochondriac, she says. “They pretty much stopped answering my phone calls,” she quips.
While some undiagnosed Lyme sufferers spend months or years going from doctor to doctor, Ms. Greene didn’t do that. When the hip and knee pain persisted, she sought out an orthopedist. She had her annual visits with her gynecologist and primary care doctor. “No one put it all together,” she says. And no one—including Nicole herself—considered Lyme as a possibility.
Finally, A Diagnosis
She savored the good days and the satisfaction of her job. And in 2006, she started dating the man she’d marry three years later. They were together on a weekend getaway for a friend’s wedding when the full force of her undiagnosed illness slammed into her. When she woke up in the hotel room on Easter Sunday, April 8, 2007, she could barely lift her head. Her body felt as if encased in cement, as if “a Mack truck was sitting on top of me,” she says. Days later, when the overpowering exhaustion persisted, she went to see her doctor who gave her a barrage of tests including tests for sickle cell, lupus and other immune diseases. All the tests were negative.
And then the doctor decided to test her for Lyme. That one was positive.
Only then did Ms. Greene remember the day six years earlier when her friend pulled that tick out of her scalp.
Over the next several months, she had three rounds of oral and one round of IV antibiotics. Between the side effects of the treatment and the exhaustion, she could barely make it out of her house. From June until October of 2007, she couldn’t go into the office. Luckily she had a position that allowed her to work from home and an understanding boss, “the best supervisor known to man,” she says.
By October, the antibiotics seemed to have kicked the Lyme bacteria into submission. She still had joint pain and inflammation but slowly she began to feel better.
In 2009, she married and had a son who is now 7. And because Lyme can be transmitted from mother to child in utero, she was monitored throughout her pregnancy. Fortunately, her son was born, healthy and uninfected.
In 2012, she was appointed Deputy Director of the Office of Women’s Health. Life looked pretty good. And then it didn’t. Walking around the neighborhood with her husband and son one afternoon, she suddenly had shooting pains up and down her leg. “The pain was really bad,” she says. An orthopedist diagnosed sciatica and prescribed physical therapy. When she didn’t respond to the therapy, she was sent for an MRI that showed a lesion on her tailbone. “My doctor thought the Lyme was back and advised me to go back to the rheumatologist,” she says.
Instead, she found out that a colleague’s husband was a Lyme specialist. “I couldn’t believe she hadn’t mentioned it before,” Ms. Greene says. “Honestly, if that had happened, I’m not sure I would have known to go to a Lyme specialist,” she confesses.
A New Plan
It took about three weeks to get an appointment with Towson, Maryland-based Lyme specialist Kenneth Singleton,MD, MPH. Dr. Singleton is the author ofThe Lyme Disease Solution and a member of the International Lyme and Associated Diseases Society. After reviewing Nicole’s medical history in detail, Dr. Singleton ordered a panel of highly-sensitive tests that revealed that she had active Lyme as well as two co-infections: Babesia and bartonella. “That’s not unusual,” explains Dr. Singleton. “The problem often is that when someone is that sick you can’t just look for Lyme, you have to look at the clinical presentations that indicate a coinfection and [consider that possibility] especially if the patient doesn’t respond to the usual 30-day treatment with doxycycline,” says Dr. Singleton.
Ms. Greene was really, really sick, he says. “The task in her case was to treat all three of her infections at the same time with antibiotics without overwhelming her system. It was a challenge but I knew that she would do whatever we asked her to do.” What he asked her to do, along with taking an antibiotic cocktail, was to change her diet and actively work to reduce her stress levels to bolster her immune system. She started the new treatment plan on Thanksgiving weekend 2012. By New Year’s she was starting to see a difference. “I wasn’t running as many fevers and I was feeling livelier,” she says. Still “it took a year to turn her around to where she was very functional,” says Dr. Singleton.
A couple of years later, just when she thought she was in the clear, new and disturbing symptoms appeared. She had neuropathy in her fingers and tremors. She began experiencing severe cognitive difficulties far worse than anything she’d experienced before. “I was in my office talking to people and having a very hard time comprehending what they were saying. I couldn’t hold a pencil properly. I couldn’t write,” she says remembering the distressing period.
In June of 2015, she went back to Dr. Singleton who diagnosed her with Babesia, one of the co-infections. She started on yet another antibiotic cocktail only this one gave her a host of stomach troubles. “I knew I had to deal with the infection but I also had to figure out how to live,” she says. “Antibiotics get rid of the bad bacteria. They also get rid of the good bacteria in the gut,” she explains.
To help her rebalance her digestive system, she started working with a nutritionist. Today she eats vegan and is careful to be gluten free. “I eat a lot of vegetables, fruits and nuts,” she says. She’s also developed a fondness for inflammation-reducing foods like fermented veggies. “It’s an acquired taste—and smell,” she acknowledges. She drinks Kombucha, a fermented tea that’s rich in antioxidants, improves digestion and is believed to boost immunity and energy. She’s a big fan of soaking in Epson Salts (“The magnesium is good for me and it’s relaxing,” she explains.)
And she’s learned to notice and appreciate feeling better. “Not only did I have to modify my eating habits, I had to modify my attitude which I didn't even know had gotten so tainted,” she says. “I felt so bad for so long that I didn't know how to handle feeling good. I have learned to listen to my body and am constantly learning my triggers,” she says. “Whether it be a food, the weather, a situation or even a person. I have learned to no longer anticipate not feeling well.
The most important lesson that Nicole Greene learned “through this whole journey is that when I don't feel well I have to acknowledge it and do what I need to do for me instead of wearing myself down. I have made my health a priority and not an afterthought.”
On July 25th, Nicole turned 46. She believes it’s going to be a great year.