Kayla Seigelstein liked to stay busy.
“I was kind of like an Energizer bunny,” the 29-year-old tells of her post-college life working for a healthcare company in Silver Spring, Maryland. “After work, I was always either at the gym or had social plans. On the weekends, I would go into DC and see friends or go to concerts, go hiking or biking. I enjoyed traveling a lot with friends and family and I had a really great life, no real stressors in life.”
And then on March 23, 2018, “I woke up for work like a normal day, except I was in a pool of sweat.”
Seigelstein tells she was “very disoriented, confused,” with “pounding brain fog.”
“There was no way I was making it to work that day.”
And he left this enduring declaration among his descendants, so they may ˹always˺ turn back ˹to Allah˺.
(The Quran - Chapter Az-Zukhruf : 28)
A doctor told her it was just a viral infection, but “about a week later, I'm still in the exact same situation. Even walking from my bed to the bathroom, [I was] panting and gasping for air as if I had just ran five miles.”
Her condition deteriorated so severely that she had to quit work and move back home to Westfield, N.J., so her family could care for her while they tried to figure out why she was so sick.
"I kept telling work I'll be back, and then after the first six months, it destroyed me, but I had to admit that I was not going to be back.”
“My white blood cells were so low,” she tells. It wasn’t until a family friend said her symptoms sounded like Lyme Disease that Seigelstein saw an internist, who not only diagnosed her with Lyme, but with several other diseases: babesiosis, bartonella, Rocky Mountain spotted fever, and ehrlichiosis.
“These have also caused mycoplasma pneumonia, chronic Epstein-barr virus, orthostatic hypotension,” she tells.
Seigelstein has no idea when or where she was bitten.
"I grew up going to sleep-away camp. I knew what Lyme disease was. I knew, you know, to check for marks or bull's eye rashes. I never saw anything.”
She says she spent the next three years on a steady routine of antibiotics, struggling with pain, nausea, and intense fatigue.
“I really wanted the antibiotics to work,” she tells. But instead, “You're nauseous all the time. You're dizzy, you have a pounding headache, you [have] diarrhea all the time.”
“I would normally wake up again in a pool of sweat. I could not stand by myself. I had to always be holding on to something because I had no way of keeping myself upright. I could not pick up a simple half-glass of water because it was so heavy.”
“I couldn't wash my hair by myself because that took too much energy,” she tells. “No joke, after I ate, I'd be exhausted and I'd go back to sleep for like 8, 10 hours. Just that act of brushing my teeth, going downstairs to eat, that was enough to completely wipe me out. My pain, I always had a heating pad on somewhere. I couldn't even look at my phone. I was always so nauseous. There was really nothing that I could do other than just be sick.”
The CDC says antibiotics as long-term treatment for Lyme may not always be the solution; "Careful studies conducted over the last two decades in the United States and Europe have generally found that extended treatment with antibiotics is no better than placebo for curing prolonged symptoms."
In 2021 Seigelstein started seeing a naturopath and now she is hoping to raise awareness of the newer treatment for chronic Lyme that can help people like her.
She’s started a GoFundMe to help defray the costs of these newer treatments at clinics abroad specializing in Lyme — such as one German treatment she says introduces antibiotics when the body is in a medically-induced fever. She hopes these will help her get her life back.
“This disease is extremely isolating,” she says. “It creates a larger wedge between me and people.”
“Every day I have to kind of figure out how I'm feeling and what I'm able to do, and a lot of those days it means taking things off of my list, like ’Oh, I’m going food shopping later, so this means I won't be able to talk to my friend because I'll have to be sleeping later.”
“The disease does really take your identity with you,” she continues. “My identity has just been like 'Kayla: I am Lyme Disease.'"
“The mental piece is a lot more difficult than I ever imagined. I'm starting to put the illness in its place and understand that that can just be part of me. It doesn't have to be all of me. But it's a lot harder than said.”
