What It's Really Like To Live With Lyme Disease: Ally Hilfiger Opens Up

Photo: Ally Hilfiger

Ally Hilfiger, the producer, actress, and daughter of fashion designer Tommy Hilfiger, battled chronic health issues since she was a child. It took years before she learned Lyme disease was at the root of her symptoms. She chronicles her journey in her new book, Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me. In this excerpt, which has been edited and condensed, she shares what it's really like to live with Lyme.

The excruciating joint pain and flulike symptoms had been part of my life ever since I was a little girl.

My parents and doctors dismissed my complaints about my knees feeling achy and hot. I was told it was growing pains. They treated the constant bouts of strep throat with bubblegum-flavored antibiotics and never looked into my health in any comprehensive manner.

As the years went on, I felt as though my brain was not working as well as the other kids’ in my class. When I got tested, they told me I had attention deficit disorder, ADD. When I stopped being able to read, they said I had a learning disability and sent me to a specialist. When I couldn’t remember the information I had studied for four hours the night before a test, they told me to study harder. When I couldn’t wake up for school or keep my eyes open during class, they told me I needed to go to bed earlier and exercise more. When I told them I had pounding headaches several days a week, they told me to drink more water or “pop a couple of Advils,” even when the headache was so strong I couldn’t lift my head from my desk. When I was in agony from severe hip pain and random joint pain, they said, “It’s probably rheumatoid arthritis. Or maybe it’s multiple sclerosis. Or it sounds like fibromyalgia. Or it could be...”

Who is “they,” you ask? My parents, teachers, doctors, and the people in between.

It felt like I was severely bruised all over and that someone had exfoliated my skin with sandpaper for one hour straight.

When Ally was finally correctly diagnosed with Lyme disease as a young adult, she was put on a course of medication and antibiotics. Still, it'd be a long time before she began to feel better.

My doctor had warned me that though he'd found dormant Lyme in me, the only way to know that it was actively affecting me was to take the antibiotics. He also warned me about the Herxheimer reaction ...

Want to take a guess at what a Herxheimer reaction is? You know how some people get a little sick after they've taken a flu shot? Well, a Herxheimer reaction, colloquially known as "herxing," is something like that, only about a million times worse ... It would be an understatement to say that the meds made me feel like shit. I felt like tractor-trailers-had-run-me-over-in-the-middle-of-the-desert shit ...

The only good news is that the severe version of the notorious "Herxheimer" that I went through indeed proved that I had Lyme disease. And that was a relief.

Now, as you might imagine, trying to function like a normal human being while herxing can be a bit tricky, especially when doing things that require you to be awake. I would visit friends and ask to lie down on their couch as soon as I walked in the door, or, hell, I even rested on those window seats at cafés just to get four minutes of shut-eye ...

Taking showers proved too painful for my muscles and skin, which were now throbbing and crawling with pain. The water pressure had to be that of a trickle because of my weak and sensitive muscles. Getting out of the shower and drying myself off with a towel, or putting on my daily dose of body moisturizer, was a task I dreaded greatly. It felt like I was severely bruised all over and that someone had exfoliated my skin with sandpaper for one hour straight. I quickly took to air drying and not caring about having dry skin in the winter ...

I had to stop working at my mom’s company. I felt like a 4-year-old, and the menial tasks like sorting the swatches were overwhelming me. My brain was like a fog machine in a Steven Meisel shoot. Did I explain the brain fog? It feels like you have done about six bong hits consecutively and are trying to speak at a White House press conference.

I don’t know how people work during a Herxheimer, or tolerate heavy antibiotics while fighting a disease. All I could do was lie in bed, or on a couch, or in a bathtub, or on a floor, or on a window seat, or in the backseat of a car, or...you get it, right? When friends would come to visit me it was like they were visiting John and Yoko during a bed-in, except I didn’t have a John ...

After three or four months of this—ahem. Let me write that again in case you didn’t catch it the first time, after three or four months of herxing, I started to feel a little better. I was able to get out of bed for lengths of time, and I could accomplish one or two things a day.

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Excerpted from: Bite Me:How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me. Copyright© 2016 by Alexandra Hilfiger. Published by Center Street/HBG. All rights reserved.

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