GoFundMe For Westfield Native Whose Lyme Disease Went Undiagnosed

WESTFIELD, NJ — Until recently, Westfield High School graduate Kayla Seigelstein, 25, worked in Maryland matching home health care aides to chronically ill patients. Then the active young woman became bedridden herself.

Kayla, who enjoyed rock climbing and running, felt sick on and off in 2017, but it took over a year for doctors to diagnose her with Lyme disease and related infections.

Kayla is now living with her mother and sister in Bedminster. "I want to be able to run again and feel free," she said last week. "I have learned how important it is to treat our bodies and mind with respect and never take anything for granted."

Her sister Dana Seigelstein has set up a GoFundMe for her, as her health insurance won't pay for many of her treatments.

"The CDC believes Lyme and co-infections are treated with one round of antibiotics, which is true for those who catch the tick immediately," Dana said last week. "For those like Kayla, who went for two years undiagnosed and has chronic Lyme, it is a very different story."

"Every single time I went to the doctor," Kayla said, "I was told I had a viral infection. Looking back on those two years, if only one person had suggested that I might have a tick-borne illness, I would not be in my current situation."

Kayla graduated from Westfield High School in 2012 and then attended Towson University in Maryland, obtaining her BS in gerontology (the study of aging) and minoring in family studies. At her job in Maryland, she managed 25 patients with chronic and terminal illnesses and worked with their nurses.

"She was very physically active with walking to and from work, running, rock climbing, riding her bike around DC, and traveling," said her sister. "She was always with friends having a great time and making the most out of life. She also volunteered for the Alzheimer's Association."

That ended when she started feeling extremely tired.

"I [got] sick, I would say, every five to eight weeks," Kayla said. "I would come home from work, eat, and immediately go to sleep, as I could not function. I had been in the hospital in October 2017 with the same symptoms I exhibit now, yet I was told it was just a viral infection."

She became sicker in March of 2018 and moved in with her family that April.

Kayla eventually was diagnosed with Lyme disease, which is spread by ticks, as well as the related infections Bartonella and Babesiosis.

The CDC explains, "Lyme disease is the most common vector-borne disease in the United States. It is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system ... Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics."

Kayla says she doesn't know where she might have been bitten by a tick. She also didn't suspect Lyme because she didn't see a telltale rash or red mark on her skin.

Dana said her family never imagined they'd be setting up a GoFundMe account.

Dana said, "Insurance will not cover doctor appointments, blood work, treatments, and alternative treatments...The CDC and doctors who are not Lyme literate believe we are making up our symptoms and it's all psychiatric. All [my sister] wants is to be able to work and live an independent life again. She has spent all of her savings on her treatment and her family has spent exorbitant amounts of money as well."

Dana said Kayla has taken antibiotics through IV and orally for 21 months. "For chronic Lyme patients, it typically takes 12 to 18 months," she said. "However, Kayla's co-infections of Bartonella and Babesiosis are extremely stubborn and resistant to antibiotics. She recently went to a new doctor in Connecticut to get another opinion and will be starting pulse therapy, two weeks on antibiotics, two weeks off."

Kayla said, "As a 25-year-old, my life has been on hold for almost two years now. Watching my friends travel, grow in their careers and as professionals, making memories, and really just doing the simple things like going out to eat together. I cannot do that."

But she said she wants to raise awareness.

"I want others with chronic illnesses to know that they are not alone," she said. "The difficult thing about Lyme disease is that when people look at me, I look 'completely normal,' yet I am screaming and crying on the inside. I come across many people who do not believe me that I am sick or think I am making it up. In reality, I spend most of my time pretending I am ok."

She advised, "Trust and listen to your body — if something doesn't feel right, only you know best, and you are your strongest advocate."

Dana thanked everyone who has helped out. "Words cannot express how much everyone contributions mean to her, and how fortunate she is to have the most amazing people in her life," she said.

The GoFundMe is here. Kayla can be reached at kaylaseigelstein@gmail.com.

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