Living life with Lyme SCV: Resident Looks to Turn Her Diagnosis into Awareness for Others


By Michele Lutes
Signal Staff Writer

Santa Clarita resident Sara Sterkel, 31, was on a camping trip 18 years ago, when she was bit by a bug on her shin, a normal occurance for campers. For her, it would be a turning point in her life.

At age 13, she sat in the doctor’s office to hear the bug that bit her was a tick carrying Lyme disease.

“To think this could be the next 50 years of my life is unbearable,” Sterkel said. “I’ve always been a very independent person, and all I want is to be able to take care of myself. It’s very difficult for me to ask for help from people.”

She has suffered in silence with an invisible chronic disease for years, but she is now using her struggles to advocate for others while continuing to fight for her life.

“(Doctors) looked at the rash, they looked at the bite and they looked at my symptoms,” Sterkel said. “They tested me and I tested positive for Lyme disease.”

They told her and her mother, “Don’t worry about it; it’s not common, and you’ll be fine.”

She was just a kid, unable to advocate for herself, she said. “You look at your parents and look at the doctors and you trust them.”

Putting her trust in others, Sterkel went on her way, and for the next 13 years, she experienced symptoms that would come and go, such as flu like symptoms and a diagnosis of fibromyalgia.

“I was what they call, a typical, classic case. I had the signs and I still wasn’t properly treated,” Sterkel said.

Sterkel was born and raised in Santa Clarita, graduated from Canyon High in 2005 and attended CSUN, graduating with honors while working seven part-time jobs to put herself through school. She loved to do volunteer work with animals, children and adults with special needs and the elderly. While pursuing her teaching credential at the University of La Verne, with only four classes left, her life turned upside down.

On December 15, 2013 while driving near the Highway 14 and Interstate 5 split, she had a Transient Ischemic Attack, or TIA, also known as a “mini stroke,” she said.

She spent almost a year in the hospital as doctors ran tests, but failed to properly diagnose her.
For the next two years, she was in and out of the emergency room, experiencing life-threatening and debilitating symptoms.

Seeing more than 20 doctors, she was wrongly diagnosed with multiple diseases, all the way up to cancer, she said. “I am sure I saw double that, but I lost count after 20.”

When seeing an oncologist to look into her symptoms, the doctor confirmed it was not cancer, it was Lyme disease, she said. “They asked me, ‘Have you ever heard of something called Lyme disease?’”
She remembered she had it when she was 13, and the doctor sent her to get re-tested.

“I found an internal medicine doctor in Thousand Oaks, they re-tested me and I tested positive, not just for Lyme, but for co-infections, too,” Sterkel said. “Ticks carry more than one bacteria. With the Lyme I also got Babezia, which is a malaria-like parasyte. It basically destroys your red blood cells, so I always feel like I am starving for oxygen.”

Being air hungry, Sterkel started her research to find the best plan of action for herself.

“I was thinking everything was gonna get better. And I quickly found out, that wasn’t the case,” she said. “The Center of Disease Control and Prevention, insurance companies and the pharmaceutical industries do not support or fund Lyme disease. They do not believe it exists in a chronic stage.”

Sterkel has late stage chronic neurological Lyme disease, making everyday different.

“On a daily basis, my days consist of managing my symptoms, surviving. I am constantly in survival mode, like fight or flight,” she said. “It changes minute to minute, hour to hour and day to day.”

Her disease is like a 24-hour, 7-day-a week, 365-day-a-year job, except she’s the one paying thousands to try to get better.

Once she received the diagnosis, she began to search for doctors, but since the CDC, insurance companies and pharmaceutical industries don’t believe in the chronic stage, there are not many doctors who treat it.

“The doctors that do treat and try to bill, they end up being scrutinized,” Sterkel said. “They lose their license, they get sued, and they get ostracised from the medical community. It’s horrible.”

Her doctors’ visits generally run between $300 and $650 for a single visit, she said. “Sometimes I can be there once a week, every two weeks, or multiple times a week. And then IVs, supplements and everything like that, nothing is covered by insurance,” Sterkel said. “It’s literally all out of pocket”

She has attempted to fundraise money to help her get into remission and help advocate for others with similar conditions.

“I have been suffering in silence for five years, and I want to be able to give a voice to the voiceless, for the hundreds and thousands who are also suffering unnecessarily,” she said.

Sterkel has tried to sell 25Score cards and collect recyclables, but due to her health, her hard work trying to fundraise for her medical expenses are continuing to set her back from remission.

There are doctors who offer treatments that could save Sterkel’s life, she said. “I would leave the doctor in tears because they are offering treatments that could give me quality of life, but I don’t have the money to do it.”

A GoFundMe has been created to hopefully help take the financial burden off her shoulders as she lives one day at a time fighting to stay alive and advocates for others who are in a similar position as her.

“I want to spread awareness and educate people, to prevent others from going through the suffering that I’ve gone through,” Sterkel said. “If somebody gave me the information I am trying to give to other people, my life would be drastically different right now. I would of got proper treatment probably, and I wouldn’t be where I am at today”

Five years after her life changed forever, she shared her story for the first time as a guest speaker at Lunch Mob, she was invited by Ed Bernstein, the organizer of the a business networking group.

“I’m pretty inspired,” Bernstein said, “(Her story) is gonna touch people, just like it touched me.”
Sterkel is not the only one going through the battle. “Many celebrities are recently coming forward with their battle with Lyme Disease,” she said.

Shania Twain, Daryl Hall, Kris Kristofferson, Alec Baldwin, Kelly Osbourne, Ally Hilfiger, Yolanda Hadid and Avril Lavigne are just a few. Lavigne recently shared her struggles in a newly released song, “Head Above Water.”

“I feel like I’m dying constantly, a very long, slow painful death. It never stops, it never goes away,” Sterkel said with tears in her eyes. “I can’t be honest or be myself, because this isn’t something that is just gonna go away tomorrow.”

She is continuing to fight a war within side, but all she wants is “to not be suffering from a day to day basis,” she said. “All I want is to have a full 24 hours where I’m not suffering.”

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