Ally Hilfiger on How the Long-Term Effects of Lyme Disease Landed Her in the Psych Ward

Imagine suffering from a range of ailments that totally upended your childhood, and then having a psychotic breakdown at 18 that led to institutionalization. That’s what happened to Ally Hilfiger, daughter of fashion designer Tommy Hilfiger. When she was 7, Hilfiger was bitten by a tick, but not diagnosed with Lyme disease until 19. For all those years in-between she was dealing with intense long-term effects of Lyme disease that just kept getting worse, but because she wasn’t seeing any Lyme-literate doctors, nobody knew what was going on. Once she learned that chronic Lyme was to blame, everything fell into place — but her journey to health was far from linear, and underscores how little most doctors understand about the long-term effects of Lyme disease. 

*This is a short clip from Hilfiger’s full interview— click here to watch the whole thing.*

You can also listen to an audio version of this interview on The WellBe Podcast.

Her Lyme Disease Story Begins — But Nobody Knows It Yet

When Ally Hilfiger was seven years old, after she and her family had gotten back from a vacation on the East Coast, Ally’s mother found a tick on her. She removed the tick and sent it off to get tested, which, as Hilfiger says, “is more than most mothers would have done in the ‘90s.” The results came back inconclusive, which wasn’t a very helpful answer. Not knowing what to do with that information, they continued on with life as normal. 

Shortly after that, the pain started, beginning in her knees. She was continually bending and straightening her legs to get rid of the stiffness. After that came many bouts with strep throat, along with severe fatigue. Eventually, the pain moved up to her hips, and then her head. She started getting migraines, and often couldn’t get out of bed. “I went through my childhood with a lot of severe pain, both physical and emotional,” Hilfiger reflects, looking back on that time. 

Things became even more concerning when her symptoms became neurological: her ability to focus, read, and retain information began to decrease at a rapid speed. Nobody could understand  what was causing it, so they chalked it up to ADD and learning disabilities.  

Then, at age 13, Hilfiger got in a snowboarding accident that dislocated her right hip, and that’s when her symptoms really began to intensify. She had shooting pains down her limbs and back, migraines that would leave her bedridden for days, and her ability to read or retain information was completely gone. Three years later, she found herself experiencing severe anxiety attacks that would require emergency room visits. One attack was so bad that the doctors said if they hadn’t called the paramedics so soon, she likely would have had a heart attack. 

But still, nobody knew what was happening or what to do.

A Lack of Lyme-Literate Doctors 

Lyme disease is pretty misunderstood today, but it was even more misunderstood back then, and it was nearly impossible to find Lyme-literate doctors. The doctors Hilfiger did see went through a panoply of different conditions they thought she might have — rheumatoid arthritis, multiple sclerosis, fibromyalgia, anxiety disorder, a learning disability — but none of them explained all of her symptoms. “It was all very confusing,” Hilfiger says. 

It wasn’t that the doctors didn’t suspect Lyme at all. In fact, they did multiple Lyme tests, but each one came back either negative or on the borderline (meaning only one out of the 10 bands  tested for in the Western Blot test showed irregularities, where a positive result generally requires four or five). Still, even the negative tests showed enough Lyme disease antibodies present that if she’d been seeing Lyme-literate doctors, they would have suspected something was amiss.

“The doctors just weren’t as educated as you would have hoped,” Hilfiger says. “And my parents didn’t know anything about Lyme disease either, and I lived in an area where it was running rampant.” And so, the disease continued to go unchecked.

The Long-Term Effects of Lyme Disease Land Hilfiger in the Psychiatric Ward

With no other alternative, Hilfiger kept moving forward with her busy life. She was acting in an Off-Broadway show, and also producing and starring in the MTV reality show Rich Girls when her neurological symptoms worsened dramatically: her ability to process information, understand what people were saying, or retrieve words plummeted. These were all long-term effects of Lyme disease, but she had no idea; she thought she was losing her mind. Overridden with anxiety and panic, she would cry herself to sleep every night.

Everything came to a head when Rich Girls aired, just as Hilfiger was about to turn 19. All of a sudden everything caught up with her, and she experienced a severe mental breakdown.  “I had a complete psychotic episode for about two months,” she remembers. Her parents had no idea what to do, and ultimately her dad decided that the best and safest choice was to have her taken to a mental institution. He sedated her, put her in an ambulance, and when she woke up, she was in a psychiatric ward. She didn’t know why she was there, or how she had gotten there.

Finally Getting a Lyme Disease Diagnosis 

Thankfully, when Hilifiger met with her doctor, the panic of those initial moments in the psychiatric ward immediately gave way to relief. The doctor walked in the room, took one look at her, and said, “You’re okay. I’m going to get you out of here. I know you’re not crazy, and you’re going to be okay.” Hearing these words gave her a sense of profound comfort.

Even within the confines of the hospital, though, Hilfiger continued to experience extreme memory loss, night sweats, headaches, an inability to make decisions, overwhelming fatigue, and confusion. The doctor asked if she’d ever been tested for Lyme disease, and Hilfiger told her that yes, she had. That’s when the doctor informed her of something nobody had told her up to that point: that 50% of the Lyme tests in America at that time were inaccurate. 

Hilfiger was then sent to a specialist who took an array of new tests and bloodwork, which came back showing off-the-charts levels of  Lyme disease. She finally had her diagnosis. Looking back, Hilfiger feels grateful that she had the particular doctor that she had, who had seen many patients dealing with the long-term effects of Lyme disease and knew how to recognize it. “She might have been the first of her kind,” Hilfiger says, paving the way for more Lyme-literate doctors to follow. 

Taking the Conventional Medicine Approach to Treating Lyme

With her new diagnosis, Hilfiger started on an antibiotic protocol, and was on and off both oral and intravenous antibiotics for about 7 years. This, of course, did a number on her gut health, though she didn’t understand that at the time. She was told to take probiotics but wasn’t instructed on how to take them properly, and didn’t have any guidance on how to structure her diet or medications. She was 20 years old, and so went about her life as many 20-year-olds would: “I was smoking Marlboro lights, drinking Diet Coke, and eating cereal.” 

Even on the antibiotics, Hilfiger could barely leave her bed at first, but after a few months her symptoms began to clear. An ambitious person by nature, Hilfiger would immediately dive into work as soon as she felt well enough — but inevitably, after 3 to 6 months of working herself into the ground, her body and brain would start to shut down again. Joint pain would set in, and she wouldn’t be able to get out of bed or remember people’s names; she would forget where she was going while driving. 

This cycle repeated for years: four or five months of being bedridden, then she would feel better and work for a few months, and then her symptoms would flare up once more. “It was a crazy merry-go-round, a vicious cycle, just up and down, up and down all the time,” Hilfiger says. 

Seeking Out Integrative Treatments for Chronic Lyme 

After about seven years of this seesawing health, Hilfiger told her father that she couldn’t do it anymore. The short windows of feeling healthy were not enough to keep her taking these intense medications that weren’t even working. She refused to live the rest of her life that way. “It was either, I was not going to live like this, or I was going to live like this and live a very miserable life,” Hilfiger says.

After dabbling in Chinese medicine and doing one more round of antibiotics — neither of which worked — Hilfiger decided to try a new approach and give it everything she had. There was (and still is) very little research on chronic Lyme disease (also known as post-treatment Lyme disease syndrome), so she had to do her own research and really put her faith in the healing process.

Her father found a German homeopathic doctor, and she decided to work closely with him. He put her on a very strict detox diet, did a detox IV — where her blood got taken out, run through IV lights, and put back in — and was on a strict regimen of diets and supplements. After that, they focused on removing all toxins from her life, whether it was the kind of water she drank, the foods she ate, or even the types of movies she watched (mental toxins are a thing!). It was intense, and it took two and a half months despite the fact that they’d expected it to take one month, but it worked. She felt great.

In fact, she felt good enough that she jumped right back into work. She launched a clothing line, and her life became incredibly busy once again. In all the busy-ness, she didn’t keep up with her vitamins or her diet, nor did she keep her stress levels in check, and this led to a very serious relapse. “I was just on my knees, freaked out, freaking out, crying a lot,” Hilfiger remembers. Doctors found parasites in her body, among a host of other issues that had arisen, all stemming from her lingering Lyme disease and a lack of proper treatment.

So she committed, yet again, to finding a treatment that would work. This time, she went through a battery of different approaches: Ayurvedic medicine, astrology, meditation, different types of diets, craniosacral therapy, Reiki, homeopathy. “It was wild,” Hilfiger says. “I did everything.”

All her efforts didn’t have the intended result. Instead of feeling better, she ended up in the ER with a 48-hour migraine, and the doctors discovered an aneurism in her brain. That’s when she knew she needed to seriously reconsider things.

Finally Finding a Treatment for Chronic Lyme that Works

“I knew I had to make some major, major changes,” Hilfiger says. So she shut down her clothing line, and she and her now-husband moved to the Caribbean for three months. There, she went back to many of the practices she’d kept up when she was working with the German homeopath. She focused on keeping out all forms of toxins by removing stress, eating clean, and cultivating positive energy. In the end, this turned out to be the best treatment she could’ve asked for. Slowly, the long-term effects of Lyme disease that she’d been experiencing for decades started to fade.  

When she and her husband returned to the States, she knew she couldn’t go back to New York City and the lifestyle associated with it, so they relocated to California. In this new environment, she was able to stick with her low-stress, clean-eating, toxin-free lifestyle. She didn’t jump into any new, all-consuming work projects, choosing instead to channel her ambitions into creative and restorative endeavors like painting and drawing. 

It worked. Hilfiger kept her symptoms at bay since then, even going on to write a memoir, Bite Me, about her experience with Lyme, and dedicating herself to educating the public on chronic Lyme disease. “Now, I’m talking to a lot of fellow Lyme sufferers and trying to spread awareness because this country does not understand what Lyme disease is or what it looks like, because you look normal on the outside,” Hilfiger says.

If you’re struggling with chronic Lyme (or any other chronic, misunderstood health issue) and want help finding practitioners who know how to help you get better, The WellBe Holistic Health Concierge Service can help. Write to us today and we’ll help put you on the path to healing. 

The WellBe Takeaway on Ally Hilfiger’s Story and the Long-Term Effects of Lyme Disease

Lyme disease is one of the most misunderstood widespread diseases of the modern age, and Hilfiger’s story makes that abundantly clear. What we do know is that it’s transmitted by ticks, and Lyme disease symptoms include fever, headache, fatigue, and skin rashes. We also know that if it’s not diagnosed or treated early  — as was the case with Ally — much more serious problems can occur. If left undiagnosed and untreated, long-term effects of Lyme disease can set in, manifesting in a number of different ways, including joint pain, issues with the brain and nervous system, digestive problems, reproductive issues, and, you guessed it, disrupted function of the nervous system and brain. Yikes.

More people like Hilfiger are sharing their chronic Lyme stories and raising awareness about the disease, but there’s still a long way to go. To keep yourself healthy, make sure to protect yourself from ticks as much as possible, properly remove any ticks if you do get bitten, and if you believe you may have been bitten by a Lyme-carrying tick, make sure that you visit a Lyme-literate doctor.

Have you or a loved one ever contracted Lyme disease? What was your experience? Tell us in the comments!

 

Watch the full WellBe interview for more of Ally Hilfiger’s incredible story, or listen to her interview on our podcast. (She and WellBe founder Adrienne Nolan-Smith are childhood friends!)

The recovery story above is anecdotal and specific to this particular individual. Please note that this is not medical advice, and that not all treatments and approaches mentioned will work for everyone.

Have you or a loved one experienced Lyme disease? What was your experience? Tell us in the comments!