Laurel Jackson knew all the facts. Growing up on the West Coast, she knew to wear high socks and pants whenever she went for a hike in the woods. She knew to use bug spray, and to check for ticks or suspicious bite marks after a hike. So when she never found the stereotypical bull's-eye rash associated with the bite of an infected blacklegged tick, she figured she was safe from Lyme disease.
What she didn't know was that her frequent panic attacks and debilitating anxiety was her body telling her she'd already contracted it.
"It started in my brain," says the 30-year-old Washington resident, who first remembers noticing her own psychiatric symptoms at age 19. "It's incredibly hard to articulate the symptoms I was experiencing without simply saying that I felt crazy. But, at times, that's exactly how I felt. Something in my brain just felt … off."
Suffering from depression, Jackson says she felt intimidated to tell anyone what was wrong, fearful of the stigma associated with mental illness.
"Who on Earth wants to risk anyone thinking they're mentally unstable?" she says. "But the brain is part of our body just like any other organ, and it's responsible for controlling every system, so if my body is fighting a terrible infection and my other organs are compromised, why wouldn't my brain be compromised as well? I knew myself … I could feel there was something bigger than a mood disorder."
Jackson says that psychiatric problems are major symptoms of Lyme disease — often the first sign of the infectious disease. When diagnosed early, Lyme can be treated successfully with a few weeks of antibiotics, but when left unchecked, the infection can spread to joints, the heart and the nervous system, according the Centers for Disease Control and Prevention. There are plenty of articles about how not to contract Lyme — but what happens when you do anyway? Everyone’s experience with Lyme is different; here’s what one woman learned from her own.
Your symptoms may be mental or physical
While Jackson was in her mid-20s, she started to recognize more physical symptoms of the infection in her body: extreme fatigue, joint paint, loss of cognitive function and memory loss. "I went from being able to snowboard for six or seven hours at a time to two to three hours, tops," she remembers. Her vision rapidly declined, and she couldn't drink even one beer without getting a hangover.
She began forgetting people's names; she would get lost in her own neighborhood. Neurological issues began to impact arm and leg movement, and she developed muscle twitches in her face. "It was truly like dementia," she says. "I knew it was more pain than the average 25-year-old should be in."
You may be misdiagnosed
Doctors told Jackson they suspect she's had Lyme disease for most of her life, but she was only successfully diagnosed two years ago. Jackson says Lyme disease is known as the "great imitator," and due to a severe lack of information about the infection, it can go misdiagnosed for years.
"The very first doctor I went to was a 'Lyme Literate' doctor and I was officially diagnosed a few weeks later," says Jackson. "Usually, people with symptoms of Lyme are bounded around from doctor to doctor, oftentimes for years, undergoing needless procedures and invasive tests."
There is no one-size-fits-all treatment for Lyme
Jackson says she had to drop out of work and nursing school to undergo full-time treatments for her infection. After two years of intense antibiotic treatments, Jackson says her health was still rapidly diminishing. "Now I'm on what I like to call 'Chapter 2' of my journey," she says. "It involved a whole new set of doctors, new ideas for treatments and lots and lots of holistic and alternative medicine. Oh, and another loan from the bank—most insurance doesn't cover Lyme treatment."
Living with Lyme is really freaking tiring
"Pretend you just ran a marathon and forced your body far past what you ever thought it was capable of," says Jackson. "Then imagine how your muscles and joints would feel when you woke up the next day. Or try reading an article on physics with a massive hangover. Now, imagine feeling that every morning."
Unlike an acute injury that heals over time, Lyme is a chronic illness that presents itself daily, which can be both physically and mentally exhausting. Jackson compares living with Lyme to becoming elderly: There's a loss of independence, a feeling of isolation and the realization that your body doesn't function like it used to.
"There's a common joke among young people who have Lyme: '30 going on 85,'" laughs Jackson. "That's exactly how it feels. I've had to give up my job, put school on hold, sell my truck and drain every last dollar I've ever saved on medical treatments. It's an excruciating emotional process."
Little things will feel harder to do
Jackson says living with Lyme means pushing her limits on a daily basis, whether it's struggling to get out of bed and take a shower, doing errands or cooking a healthy meal. "Some days you just can't count on your body or brain to function properly at all," she says.
But many people can still do all those things they’ve always wanted to do — seriously
Jackson says she still hikes, snowboards and swims — just more slowly than she used to. "Lyme hasn't changed my outdoor athletic life too drastically," she insists. "My energy levels are low, and my recovery time is longer, but if anything, having Lyme only makes me more determined to stay outdoors and push my body, climbing higher than I thought I could or swimming farther. Every time I'm outdoors exploring, I'm pushing myself to stay out longer."
Jackson says changing her eating habits has been one of her most effective lifestyle changes. "I upped my intake of raw veggies tenfold, and I focus a lot on gut health," she explains. "I take time every day for self care, whether that be an Epsom salt bath, sauna session, giving myself a foot rub or simply setting aside time every day to pray or take a nice walk."
Most recently, Jackson backpacked solo for five weeks in Maui, Hawaii: “Traveling alone for five weeks while chronically ill was one of the hardest and most rewarding things I have ever done. It restored all the confidence I had lost in myself during this health journey.”
You will regret not checking for ticks more frequently
"Had I known how dangerous and life-changing one tick bite could be, I would have protected myself every single time I went into the woods and I would have inspected my body religiously," says Jackson.
Ticks are incredibly difficult to spot, but if you find one and safely remove it, you can send it to a lab to get it tested for Lyme. Still, because tiny ticks can attach and fall off of you without you ever noticing, it's important to educate yourself about the warning signs of initial acute Lyme infection and get yourself to a doctor as soon as possible if you notice anything.
"An incredibly huge portion of the population has never even heard of Lyme, and if they have, probably not much," says Jackson. "Most people are under the impression that it is a mild, acute infection that can be cured in a few weeks. They have no idea that, left untreated, it can become a multi-systemic chronic infectious disease that has no cure and is difficult and expensive to put into remissions."
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