Lyme disease is becoming increasingly prevalent but still remains misdiagnosed in many people forcing them to suffer physical and neurological ailments. Three women share their battler with Lyme disease.

Danielle Walczak  

A fully functioning seventh-grade-girl who loved playing basketball, being outside and hanging out with her friends considered herself a normal teen but in a matter of a month found herself, paralyzed, speechless in the hospital, suffering from short-term memory loss.

Three years later Courtney Tewksbury was diagnosed with Lyme disease, which would begin a long battle to become healthy again.

Lyme disease is a bacterial infection spread in the body after a blacklegged tick bite. In Maine Lyme has had an increase in confirmed cases: 801 cases were confirmed in 2011 according to the National Centers for Disease Control and Prevention. Beginning in rash, symptoms usually last about 10 days with proper treatment and antibiotics. However a misdiagnosis can lead to years of treatment and multiple doctors.

This was the case for Tewksbury.

Tewksbury, a high school senior in New Hampshire, had three other tick-borne diseases along with Lyme causing symptoms to show up when she was in seventh grade. A misdiagnosis left her living three years with symptoms and incorrect treatment until she was diagnosed with Lyme disease in 2009.

Misdiagnosis is surprisingly common when it comes to Lyme disease.

It is estimated 1 out of every 10 cases of tick-borne illness is reported, according to the International Lyme and Associated Diseases Society.

Elizabeth Clark, a junior nursing major at Husson University, has been battling the disease since 2008.

She was also misdiagnosed.

“It’s very common for doctors to think it’s all in the patients head. The infectious disease specialists I went to told me he didn’t think Lyme disease existed,” said Clark.

According to the Center for Disease Control and Prevention Clark didn’t have enough bands on her test to be diagnosed with Lyme disease. After being tested four separate times for Lyme, she always found herself a few bands short.

“There is a great debate about Lyme disease,” she said. “It’s called Lyme wars. There is a lot of heated debate about the topic.”

Tewksbury never even saw a tick bite this led doctors to believe that she had everything from Multiple Sclerosis to Rheumatoid Arthritis.

According to Clark, “they say 30 percent of people get a bull’s eye rash, but the truth is that less people get the rash. Most people don’t even know what it is. It can be in a place you can’t see. The rash goes away quickly,” she said.

Ticks are most prevalent in May and August but it is possible to get bit anytime of year. Lyme disease is found everywhere in the State of Maine especially wooded areas, high grass and in brush or leaf piles. The highest rates are on the eastern seaboard and in Cumberland and York counties but are becoming more common in northerly areas according to the Bangor Daily News.

Six years after acquiring Lyme disease and Tewksbury continues to take medication but hopes to be off in the fall. Tewksbury has experienced some of the most widespread symptoms one can get from Lyme.

When the Lyme hit her neurological system it attacked her spine and thus caused enough pain for her body to freeze.

“I was in a wheel chair. I physically could not move my legs at all. The same thing happened with my arms. They would seize up. I had the symptoms of someone who would have Cerebral Palsy,” said Tewksbury.

Tewksbury’s body wasn’t the only thing that was affected, “my personality degraded to that of a five year old. If someone came over to see me I would have no recollection of that after. It was debilitating,” said Tewksbury.

In these times, the soon to be graduating senior said she took her life hour for hour, causing her to miss out on many other activities people her age were doing.

“I didn’t know if I was going to wake up fine or if I was going to sit in school and not know where I am. I missed out on a lot,” she said.

Fatigue caused Tewksbury to miss school dances and sleepovers. “Seeing everyone else around you and not being to do those things is hard. It’s embarrassing because you never know what position you’re going to be in. It was scary, I like being control of what’s going on around me and many times I wasn’t able to,” she said.

Lyme disease has changed Tewksbury who was inspired to begin a major in nursing at Salisbury University next fall.

“I just learned that things happen. I never thought I’d be in that position. I never gave up in school. I learned I am a pretty strong individual that I never really knew,” she said.

Tewksbury has had to deal with many challenges. One that sticks out to her was when she was refused at a restaurant while she was in a wheelchair. “People were pointing at me and kinda laughing,” she said.

“I learned not to judge people, not to make fun of people based on appearance or how they may talk, anything of that matter. It’s easy to make fun of some one,” she said.

Tewksbury isn’t alone; Clark said her doctors think some of her symptoms are permanent.

“Some damage isn’t reversible,” she said. “I’m hoping most of it will go away. I was undiagnosed because people are judgmental and if you don’t physically have something, they will judge you.”

Clark started experiencing symptoms in 2008, her junior year of high school, after she got into an accident. According to Clark, fearful traumatic experiences can awake Lyme that is dormant inside of you.

“I started noticing that I was seeing black spots in my vision. I was having trouble with my fine motor skills. From there it just kind of progressively got worse,” Clark said. “I always felt like I had ants on me.”

The Lyme War continued for Clark as she battled with doctors.

“Lyme disease can be misdiagnosed for a million things. They thought I had fibromyalgia. They thought I was insane and that it was all in my head,” she said. Fibromyalgia is a widespread body pain that shows up in joints and muscles.

Tewksbury thinks people are still uneducated about Lyme. She stresses the severity of the disease.

“You need to be your own advocate. I went through many doctors. They always thought it was something else. You need to believe in yourself and what you’re feeling and keep going further,” Tewksbury said.

Clark thinks it is very important to be your own advocate. “Too often I feel doctors rely a lot more on lab work than on their own eyes and what they see in their patient. I had practically 18 out of 20 symptoms of Lyme disease at first, but not all doctors could see that,” she said.

Education is also important for prevention according to Clark. “I never was taught to do tick checks after I went out in the woods. Now I kind of pester all of my friends to do a tick check if we go hiking. In the nymph stage a tick can be the size of a pen tip. Unless you are really looking for [it] you can’t really see it.”

Katelyn Mallet, a Psychology major and Studio Art minor at the University of Maine has been symptom free since her senior year of high school.

Mallet still goes fishing, hunting and hiking but always makes sure to check for ticks.

“People don’t realize what it can do. It affects all parts of your body. I would definitely tell people to wear their deet and bug spray. If you see a tick on you, don’t just brush it off because the head could still be in there,” she said.

Mallet was diagnosed in 1999 when she was in second grade. “It was really hard to get diagnosed with it because the doctors didn’t believe Lyme existed,” she said.
Mallet experienced symptoms ranging from optic neuritis, which caused her to lose her vision to seizures.

“The biggest thing is it made me grow up really fast,” she said of her battles with Lyme. “Going through all of those doctors and having something serious happen made me see the world a different way,” she said.

How to prevent Lyme

Professor of applied Entomology, Andrei Aloykhin provides insight on the causes of Lyme.

Danielle Walczak

In Massachusetts the only hepatitis viruses and sexually transmitted diseases have more incidents than Lyme disease amid infectious diseases, according to Dr. Catherine Brown of the Massachusetts department of Health.

Lyme disease is an important tick borne disease, which according to Professor Aloykhin is a relatively recent problem but is a significant issue that keeps expanding.

According to the International Lyme and Associated Diseases Society the number of cases of tick-borne illness occurring each year has increased twenty-five-fold since the disease was first tracked in 1982.

Deer ticks are a small ubiquitous tick. Their preferred hosts are deer and humans, but despite their name can be found on many mammals and other vertebrates such as birds or lizards.

Aloykhin said Lyme disease is a considerable concern in Maine, especially in southern regions.

The higher prevalence of ticks in southern Maine can be related to the lack of bio diversity in that area, according to Aloykhin.

One way to prevent ticks is to try and reduce exposure to ticks by reducing the number of ticks.

“Fragmentation of forests, when we cut down forests and develop them and things like that even when there are plenty of forests left we have decreased bio diversity,” said Aloykhin.

As bio diversity decreases there are fewer hosts for ticks. “By decreasing biodiversity by removing competitors and removing alternative hosts, by removing predators we actually promote Lyme disease,” said Aloykhin.

Aloykhin said Lyme is sometimes misdiagnosed.

It is estimated 1 out of every 10 cases of tick-borne illness is reported, according to the International Lyme and Associated Diseases Society.

Aloykhin said the key is to have timely and proper diagnosis. “Prevention is very important, we cannot just rely on treating it after infection as occurred,” he said.

The best way to control personal prevention of ticks is to wear tick repellants and long pants tucked into socks when doing outdoor activities. Always check for ticks upon return from wooded, leafy, or long-grass areas.

If you suspect you have been infected with Lyme or bit by a tick seek immediate medical attention.