Imagine suffering from a range of ailments that totally controlled your childhood, and thenhaving a psychotic breakdown at 18 that led to institutionalization. For Ally Hilfiger, that was the reality of the bulk of her childhood. When she was 7, Hilfiger was bitten by a tick, but not diagnosed with Lyme disease until 19. For all those years in between, Ally Hilfiger’s Lyme disease symptoms — such as severe fatigue, joint pain, difficulty retaining information, fainting spells, shooting pains, migraines, and serious anxiety attacks — grew worse. No one could figure out what was causing her physical and neurological complications.
When Hilfiger was seven years old, after she and her family had gotten back from a vacation on the East Coast, her mother found a tick on Ally. 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 out 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 and 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 a complete inability to read or retain information. By 16, she was 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 would have likely had a heart attack.
But still, nobody knew what was happening or what to do.
A Lack of Lyme-Literate Doctors, and a Misdiagnosis
Lyme disease was even more misunderstood back then than it is today, and Lyme-literate doctors were rare. 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. “It was all very confusing,” Hilfiger says.
All the while, the doctors had done many Lyme tests, and each one came back either on the borderline — meaning she was only missing one out of the ten bands on the blot test — or negative. But even the negative tests showed enough Lyme disease antibodies present that they should have pointed doctors toward Lyme.
“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.
A Lyme-Fueled Breakdown Lands 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 began to really present themselves. Her ability to process information, understand what people were saying, or retrieve words plummeted. Overridden with anxiety and panic, she would cry herself to sleep every night.
When Rich Girls aired, as Hilfiger was about to turn 19, everything caught up with her and she experienced a severe mental breakdown. “I had a complete psychotic episode for about two months,” she says. Her parents had no idea what to do, and ultimately her dad, fashion designer Tommy Hilfiger, 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
But the panic of those initial moments in the psychiatric ward soon gave way to relief, as she met with her doctor. The doctor walked into the room, took a look at Hilfiger, and said to her, “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 Hilfiger a sense of profound comfort.
Even within the confines of the hospital, though, she continued to experience severe memory loss, night sweats, headaches, an inability to make decisions, extreme 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.
Her doctor sent Hilfiger to a specialist, who took an array of tests and bloodwork, which came back showing off-the-charts 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 with Lyme 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 Lyme Disease Treatment
With her new diagnosis, Hilfiger started on an antibiotic protocol, and was off and on 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 (learn more about the far-reaching ways that your gut can impact your health in our comprehensive gut guide). She was told to take probiotics, but wasn’t told how to take them properly. She was 20 years old, didn’t have any guidance to structure her diet or medications, 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, she 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. 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: 4 or 5 months of being bedridden, then she would feel better and work for a few months, and then her symptoms would flare up again. “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 Lyme Disease
After about 7 years of this, 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, she decided to give it one more go, and give it everything she had. She saw a German homeopathic doctor that her father had found, and really gave this round of treatment her all. She went 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 the types of movies she watched. 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 Lyme disease and the lack of proper treatment.
So, she committed, once again, to finding a treatment that would work. This time, she went through a battery of different approaches: Ayurvedic medicine, astrological methods, meditation, different types of diets, craniosacral therapy, Reiki, homeopathy. “It was wild,” Hilfiger says. “I did everything.”
The end result of all her efforts was that 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 Lyme Disease Treatment 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, focusing 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 Lyme disease treatment she could’ve asked for.
When she and her husband returned to the States, she knew she couldn’t go back to New York City, and 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 endeavors like painting and drawing.
And, it worked. She’s 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.
Conclusion: The Importance of Sharing Lyme Disease Stories and Creating More Lyme-Literate Doctors
Lyme disease is one of the most misunderstood widespread diseases of the modern age, and Hilfiger’s story brings that into stark relief. 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 (often referred to as chronic Lyme disease). Undiagnosed and untreated Lyme can manifest 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.
Thankfully, more people like Ally are sharing their lyme disease 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.
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!
Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy, and Almost Killed Me