Women living with debilitating tick bite illness say it could happen to anyone

Published: .
Updated: .

Every summer, we hear about the potential danger of mosquitos and the West Nile virus. But every time you and your kids go outside, you're also at risk for another dangerous disease caused by ticks.

Cases of Lyme Disease are increasing in Indiana and ticks right now are especially active. It is a preventable illness.

Hoosiers living with Lyme are now warning others to take precautions to avoid getting this devastating, complicated, often mysterious disease.

A Drain on Family Life

Rebekah McKissick has battled Lyme disease for 25 years
Rebekah McKissick has battled Lyme disease for 25 years. (WTHR Photo)

Rebekah McKissick doesn't know what "normal" is anymore. Her Lyme disease has not only taken away her energy and caused severe pain, even more heartbreaking for the Indianapolis mother, it has taken away precious time with her children.

Rebekah spends many of her days on her couch or in a hammock outside watching her children, ages 4, 5, 10 and 12, play around her. They stop for a hug and a quick chat. But it's far from the active hiking. biking and outdoor time that she used to spend with them before a tick bite changed her life. "I just miss being there for my children on a daily basis, being present," she says.

Rebekah McKissick - Lyme disease

Rebekah says her days with Lyme disease, a debilitating and complicated illness, are best summed up as feeling like she's "straddling between two worlds of the able-bodied some days and the severely disabled other days."

Sometimes she feels so bad, her daughter has to help her get dressed.

"Most days I can pick two things to do. Something like emptying the dishwasher or it could be making one meal or cleaning up after a meal. Some days I have good days and I can do a lot more and some days I don't even get to pick two," Rebekah explains.

25 years ago Rebekah had Lyme disease as a child. Just last year she got it again after a hike at Eagle Creek. Her flu-like symptoms started three days after that hike. Then her body just couldn't handle the borrelia bacteria from the recent tick bite. It broke down – she couldn't read, couldn't drive, she was simply exhausted.

Like many people who get Lyme disease, Rebekah never saw the tick, she never felt it. But she did notice an unusual rash shaped like a bullseye on her arm.

"There's a red middle and then an outer circle like the target bullseye," Rebekah explains. That is a classic, tell-tale symptom of the disease. So luckily for her, she was diagnosed quickly.

“I just miss being there for my children on a daily basis”

"I thank God that I was able to see a doctor that just knew right away, this is Lyme," she said.

She started treatment with two weeks of antibiotics. But for her, that is just the beginning of her long-term treatment. Rebekah now takes supplements and prescriptions daily for a course of treatment that could take three years to fully rid her body of the bacteria.

But for a busy mom, three years is a lifetime.

Losing a Career

Ella Janssen's days are regimented by her medication schedule.

Dozens of prescription pills and supplements help ease the former critical care nurse's symptoms of chronic Lyme disease.

The debilitating illness forced her to give up a career she loved.

For the last 2 and a half years, Ella has been tediously tracking her symptoms, her good days and her bad. She hopes the color-coded spreadsheets may one day help unravel an answer to what her body needs to heal.

She has chronic Lyme, with at least 16 varying symptoms every single day.

But right now, she knows there is no easy fix, and it's a difficult reality to face she says, "People get treated and they don't get better."

The 59-year old's goal now is to get in remission.

"My job is to take care of myself and get well. Period," she explains.

With the 90 pills a day and reminders to take them set on her I-phone, Ella's determined to face her Lyme disease head on.

A tick bite in 2012 gave her Lyme disease. About a week after the bite the symptoms began. But like many people who have Lyme, the illness went undiagnosed for years.

"It started with fevers and strange rashes like huge swelling of hands and fingers and ankles and feet. They thought I had rheumatoid arthritis or lupus or something like that. I wanted to run a Lyme test and she said, 'we don't have Lyme in Indiana. You don't need a Lyme test," Ella remembers from some of her early doctor visits.

But Lyme disease IS in Indiana. And more people are being diagnosed with it.

Ella is finding hope now that she simply knows what's wrong. She's had marked improvement over her last year of treatment. But still, she says it's "really, really, really scary because you don't expect to die from being bit by a bug." She's dealing with joint, nerve and brain damage which cause constant exhaustion. She has cloudy thinking and muscles that can give out at any moment.

"I used to be a voracious reader. Reading a book now is pretty much impossible," Ella says, "My husband, when I go somewhere, I have to text him just about every hour to let him know I'm ok."

Ella says she misses her job. What she's gone through, she equates to a series of losses.

"You lose your job basically. You lose a lot of your social contacts because the people you work with they're part of your family, " she explains, "You lose the ability to drive yourself, cook your meals or at least without my husband standing there to make sure I didn't burn myself."

Now - as she fights back toward health she's fighting for awareness about the preventable tick-borne illness that has changed her life.

"I don't know what kind of day I'm going to have and I don't know if I get up good in the morning that I'm going be good in the afternoon," Ella explained. "I can't take too much coming at me because my brain can't process it. I used to be a voracious reader. Reading a book now is pretty much impossible. I can't even get into a story on Dr. Oz. I don't think I'll ever get back to where I was."

Raising Lyme Disease Awareness

These are two women who feel they've lost themselves to the disease. They want their stories to help raise awareness so others can prevent it – or get diagnosed early, after finding a tick or experiencing symptoms.

Tiny ticks are the carriers.

"Basically they bite you and they regurgitate every nasty thing they have in them," Ella explained.

And there's a lot in them we don't want in us. Ticks infected with the borrelia bacteria spread Lyme disease. But ticks also can carry many other diseases like Rocky Mountain Spotted Fever, which recently took a young Plainfield girl from perfectly healthy to dangerously sick in just a few days.

Kenley Ratliff died after getting bitten by a tick while camping.

"We were not expecting to leave the hospital without our baby," said Kenley's mom, Kayla Conn.

The tiny blood-sucking insects, that attach and feed on animals and humans, hang out in grasses and brush. You're more likely to come in contact with them in the woods.
But ticks are also in parks, on your pets and in your yard.

Dr. Kimberly Lentz of New Horizons Integrated Medicine specializes in tick-borne illnesses. She devotes her entire practice to Lyme disease.

She says she even had a patient get a tick bite and contract Lyme from mulch brought to their house. "Just because you live in suburban Indianapolis, doesn't mean that you're risk-free," Dr. Lentz cautioned.

Experts say this summer is an especially bad one for ticks and Lyme disease cases are on the rise. "This year's been particularly bad because we had a mild winter so ticks didn't die," Dr. Lentz explained. "We are getting anywhere from 10-15 new patient inquiry phone calls a week."

According to the CDC, at least 300,000 people a year are diagnosed with Lyme. Data from the Indiana State Department of Health shows a steady increase in cases in the Hoosier state: 112 in 2014, 139 in 2015 and 148 last year.

But Dr. Lentz believes those numbers are grossly under-estimated. "I, myself, we see more (patients) than that in a year, just here," Dr. Lentz said. "If the patient hasn't had a bullseye rash and they don't have joint pain, they don't count them sometimes because they didn't meet the criteria the health department has established to say that this is a true positive test."

Dr. Lentz admits that Lyme Disease is a complicated illness that's tough to diagnose and if not diagnosed right away, it's tough to treat.

The first problem can be recognizing the tick. Unlike a mosquito, most people don't even know they got bitten.

That's because the tick injects a numbing agent when it attaches to your skin.

Nymph ticks are most infective and they are tiny, only the size of a poppy seed.

If someone does get infected with Lyme, symptoms are misleading, often mimicking other illnesses.

What do ticks look like?

According to the CDC, Deer ticks (also known as blacklegged ticks) are common in Indiana.

The ones that spread Lyme disease are often nymph size, which is the size of a poppyseed. Since they are so small, a person may not notice one on their body right away.

In most cases, the tick must be attached for 36 to 48 hours before the Lyme disease bacterium can be transmitted.

Diagnosis Difficulties

A bullseye rash is a symptom of Lyme disease
A bullseye rash is a symptom of Lyme disease. (Courtesy of the CDC)

Doctors in Indiana, she says, aren't always trained to spot it.

"The variety of symptoms make it difficult for doctors at the primary level to identify because it could be numerous different things. When I was in medical school, I was taught that everybody saw the tick, everybody got a bullseye rash and everybody's knee got swollen and red and that was the Lyme disease diagnosis. But that's not the case. It can really affect any part of your body," Dr. Lentz explained. "No two patients look alike. It's the people that don't get the bullseye rash and sort-of have this slow, insidious onset of what looks like chronic fatigue or fibromyalgia or headaches or odd neurological symptoms, those are the people - they get missed!"

She says another problem is that the test for Lyme often produces a false negative.

"Most of the patients we see have already been to multiple doctors before they see me," Dr. Lentz said.

The CDC recommends a 2-step test for Lyme disease. It can be done with one blood sample but the test is sometimes criticized for having too many false negatives.

Lyme is much easier to prevent than it is to treat, which is why taking precautions outdoors is so important. Bryan Price, senior vector-borne epidemiologist with the Indiana State Department of Health has mission of educating the public and health care providers about the dangers.

"You should treat any tick or any mosquito as potentially carrying a disease. It's playing the odds basically," Price said. To stay protected, watch where you walk. "Try to stay to the center of the trail instead of walking on the edges where the vegetation is higher," Price said, "that can cut down on the chances of ticks getting on you."

So can wearing bug spray that contains 20-25% DEET. "That will really help keep the ticks off of you. I mean they do work," Price said.

Insect repellent containing DEEP should not be applied to pets. The chemical can be toxic to dogs and cats when ingested at high doses.

Dr. Lentz recommends families consider setting aside specific play clothes for the kids and hiking clothes for adults that are treated with permethrin - a non-toxic, unscented liquid available at some outdoor supply retailers.

"Take your clothes, you hang them up in the garage, you spray them, saturate them with the spray. Let them dry. It doesn't smell," Dr. Lentz explained. "The nice thing about permethrin is when the ticks land on that clothing, they die and fall off. That treatment, if you do it yourself, should last about four or five washes. Then if you have exposed areas of skin, that's where you spray your bug repellant."

Check for Ticks and Take Action

FILE - In this May 15, 2017 file photo, ticks are displayed that were collected by South Street Veterinary Services in Pittsfield, Mass.
FILE - In this May 15, 2017 file photo, ticks are displayed that were collected by South Street Veterinary Services in Pittsfield, Mass. (Ben Garver/The Berkshire Eagle via AP, File)

Once you come indoors, experts say do a tick check, paying special attention to where ticks like to hide. "Around the nape of your neck, in your hairline and things like that, inside your elbows, inside the back of your knees," Price explained.

It takes 36 hours from when a tick bites you until Lyme disease is actually transmitted.

If you do find one, remove it right away.

Experts say don't just pull it off; don't burn it off; don't use things like nail polish or essential oils.

Be sure to remove the ticket carefully — with tweezers.

"You want to grab the tick as close to the skin as possible and just gently pull until it lets go," Dr. Lentz said. "Don't yank it or twist it. You really want to make sure you get right at the surface level and not squeezing the body of the tick to pull it out because that could act just like a syringe and you could be inserting organisms into your body."

Also, experts say tell your doctor right away if you get a strange rash, with fatigue, fever or pain. Lyme symptoms usually start several days after being outdoors.

The message of prevention and recognition is one that Hoosier women living with Lyme want people to take seriously so that families stay protected from this devastating disease.

"If they recognize it sooner, you don't get to where I am," Ella said.

"My kids, they know to spray down and they know now too to look for ticks," Rebekah said. "Educate yourself and educate your children too."

There are support groups for people who have Lyme disease. Both Ella and Rebekah are part of Indiana Lyme Connect. The group often holds seminars to discuss treatment options, symptoms and share new information for those who have or think they may have Lyme disease.