I First Had Lyme Disease in 2010. I Never Really Got Better.

The author has spent a decade fighting persistent Lyme disease symptoms — and convincing those who don’t believe him that his illness is real

Karl Bode in Lincoln Park, Seattle. Photography by Ian Bates

This story is part of “Tickpocalypse,” a multi-part special report.

My first run-in with Lyme disease had few of the usual hallmarks of the illness. I never had the trademark bull’s-eye rash. I never even saw a tick. And despite adhering to all the standard treatments, I’ve never fully recovered. Nearly 10 years later, I still suffer from an often-debilitating array of symptoms that modern medicine has no concrete answer for.

My experience with the disease began shortly after my wife and I bought a home in the Hudson Valley in upstate New York. While clearing dead trees and leaves from the property in the summer of 2010, I became viciously ill. After spending several days in bed with a fever that peaked at 103 degrees, I headed to my local doctor to be sure I hadn’t contracted a plague.

Given that we had moved just a few hours away from Old Lyme, Connecticut — where the disease first surfaced in 1975 — the doctor prescribed a two-week course of the antibiotic doxycycline, the gold standard treatment for Borrelia burgdorferi, the bacteria that causes Lyme disease. Follow-up blood tests (both the Western blot and ELISA) confirmed that his guess was correct.

I slowly began to feel better.

It didn’t last.

About a month later I began to experience bizarre new symptoms, starting with the sudden development of severe arthritis in my hips and hands. Then came recurring and debilitating headaches, chills, cold sweats, frequent bouts of disorientation, vertigo, and even depersonalization, a terrifying sensation of feeling as though you are somehow outside of your physical body.

After a few months I returned to the doctor. My blood work was normal, with the exception of the positive Lyme tests. This time, I was prescribed a 21-day course of doxycycline to see if we couldn’t “knock this out.” The same thing occurred again: For about a month I started to feel more like my old self before the symptoms roared back — with a few new ones in tow.

I developed insomnia and an extreme sensitivity to caffeine, sugar, and dairy. I suddenly found that if I pushed my body at all with too little sleep or too much exercise, it would falter like a car trying to run on a mixture of gasoline and lemonade. When that happened, I’d experience a sensation that felt like someone was running an electrical current through my nervous system.

There are many theories about what is happening to people diagnosed with Lyme like myself, but there are few hard answers. I’m part of an undetermined number of Americans suffering from what’s known as post-treatment Lyme disease syndrome, or PTLDS. (While often called “chronic Lyme,” the latter is not recognized by the CDC as an official diagnosis.)

“Over the years I’ve found that the complexity of the disease tends to result in press coverage and a public dialogue that fixates on controversy and quackery, but not the underlying institutional failures driving patients to these alternatives in the first place.”

To be clear, the majority of people with Lyme disease tend to recover with standard antibiotic treatment if the disease is caught early and treated properly. But there’s an unspecified number of people for whom symptoms persist long after antibiotic treatment ends.

There’s no scientific consensus on how many people struggle to get better. When I reached out to the U.S. Centers for Disease Control (CDC) for hard data, the agency directed my attention to a 2015 prospective study suggesting that the total was around 5%. Other studies suggest that between 10 and 20% of people with Lyme exhibit sometimes severe symptoms after completing the recommended standard antibiotic treatment regimen.

“Information related to disease outcome is not collected by states as part of routine disease surveillance, which makes it more difficult to quantify,” a CDC spokesperson told me.

Bode has experienced symptoms ranging from fatigue to depersonalization.

For me, the disease has settled into a recurring cycle of relapses where I feel okay for a few weeks (or months, if I’m lucky), only to have the symptoms flare up again when my body is under strain. If I get too little sleep, too much exercise, or even a bad sunburn, I risk spending weeks derailed by what feels like the fusion of a migraine, motion sickness, and a nasty flu.

Dr. Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University, told me in a phone conversation that new studies are slowly starting to erode the conventional medical belief that Lyme is always easy to treat.

“In the 1990s, early 2000s, people who were talking about chronic Lyme disease were considered to be phonies, or quacks, or people who had psychological problems as the primary cause of symptoms, and they were debased really by some academics,” Fallon says.

In the years since, he adds, reputable animal studies have steadily emerged showing Lyme bacteria may persist beyond antibiotic treatment. Studies have also found that the invasive nature of the bacteria can sometimes trigger severe but poorly understood autoimmune dysfunction in the wake of the initial infection.

Dr. Elena Frid, a New York neurologist with a specialization in infection-induced autoimmune disorders, agrees that the tide of understanding related to Lyme disease and PTLDS is slowly shifting. That’s not just due to newly emerging scientific studies, but also to story after story after story showing people struggling to reestablish equilibrium years after infection. “More and more physicians, especially in the Northeast, are becoming more aware of Lyme, its many mimicking symptoms, and its complications if not treated promptly,” she says.

But while a consensus has slowly emerged that PTLDS is a very real and debilitating illness, how to treat it remains elusive. That failure often drives people toward a rotating array of scientifically unsupported alternatives. In a country where the supplement industry is barely regulated and dubious pseudoscience is mainstream, there’s no shortage of snake-oil salesmen lined up to take money from people suffering with Lyme.

On any corner of the internet on any given day, you can find people with Lyme disease huddled together in various forums, desperate to find answers to what plagues them. From coffee enemas to scientifically unsound homeopathic remedies, it’s easy for these people to stumble down a rabbit hole of half-truths, empty promises, and internet conspiracy theories.

Like most people with Lyme, I’ve tried pretty much everything in a bid to get better. I’ve gobbled up herbal tonics, CBD oil, a universe of different probiotics, antibiotics, anti-parasitics, and an endless array of supplements promising myriad purported benefits. Most provided little, if any, comfort. I’ve personally found that an anti-inflammatory diet that eliminates caffeine, dairy, grains, and sugar notably helps to reduce my symptoms. I’ve also found yoga and stress reduction hugely beneficial, but far from a cure.

Misdiagnosis and missed diagnosis only adds to the confusion surrounding the disease. Lyme disease testing — which can only determine if a person has experienced an immune response to Lyme but not actual bacterial load — is frequently derided as unreliable by many doctors. Fallon says there are more accurate tests that he believes will emerge sometime over the next five to 10 years.

Confused and desperate, many people with Lyme flock to “Lyme literate” doctors (LLMDs), who, citing the unreliability of Lyme testing, are willing to make a diagnosis based exclusively on symptoms. While this can help people overlooked by substandard treatment and testing, it can also occasionally result in people with similar disorders being misdiagnosed with Lyme disease.

With no scientific consensus on what causes persistent symptoms and how to treat them, such options aren’t covered by insurance, leaving people like me to fund treatment entirely out of pocket. I’ve visited several LLMDs with mixed results. Most are compassionate professionals eager to listen and experiment within the confines of the law. Others push dubious cures and prolonged courses of antibiotics that have, particularly in instances of potentially unconfirmed Lyme diagnosis, proven fatal.

Finding a trustworthy LLMD can be difficult and expensive for Lyme patients. The LLMDs I consulted in New York offered initial consultations ranging from $800 to $2,000, with each follow-up visit costing anywhere between $300 and $500 each. For many, these alternatives are priced well out of reach.

Over the years I’ve found that the complexity of the disease tends to result in press coverage and a public dialogue that fixates on controversy and quackery, but not the underlying institutional failures that drive patients to these alternatives in the first place.

Lyme is often dubbed the “great imitator” because as the spiral-shaped bacteria burrows into essential bodily systems, it triggers a wide variety of symptoms that run the gamut from facial paralysis to dementia.

“I don’t really care what my problem is called. I just know that my life has been profoundly altered after my run-in with the bacteria.”

These symptoms are often mistaken for other illnesses ranging from Alzheimer’s to multiple sclerosis, and erroneous treatments for those conditions can often make Lyme disease symptoms worse. Duke oncologist Dr. Neil Spector spent years suffering from heart problems so severe he needed a heart transplant. His Duke colleagues failed to recognize Lyme disease as the root of the problem.

If even Duke oncologists are being misdiagnosed, what’s the chance that an average American is getting an accurate diagnosis at their local health clinic?

The suffering that PTLDS causes often results in patients who look healthy to the outside observer but are actually anything but. This not only causes confusion among friends and family, but it’s a major reason why funding lags behind other diseases and disorders that are more visibly devastating.

Some studies claim that suicide rates among people with Lyme tend to be notably higher than the general population. Fallon recently told the Poughkeepsie Journal that while Lyme disease can certainly cause depression, more research is needed to determine the impact of the disease on overall mental health.

Despite recent progress, Bode says the medical system has failed him.

For many Lyme patients, depression sometimes comes with the territory of having an illness that’s poorly understood and has no obvious cure. Countless people with Lyme I’ve spoken to have told me how friends, family members, and doctors often refused to even believe they were ill because of the confusion and stigma that historically surround the disease.

Further complicating public awareness is the fact that Lyme disease, per se, is only one part of the problem.

While Borrelia burgdorferi is the most common U.S. variant of the bacteria, Borrelia afzelii and Borrelia garinii are more common in Europe, and aren’t likely to be tested for if a patient contracts the diseases overseas and returns to the States.

Similarly, ticks carry a wide variety of co-infections including babesiosis, anaplasmosis, ehrlichiosis, relapsing fever, tularemia, and Rocky Mountain spotted fever. In the past two decades, seven new tick-borne germs have been discovered. And as warmer weather from climate change widens tick season, the problem is accelerating.

Often these illnesses aren’t tested for in states where they’ve historically been less prevalent, and many of these peripheral illnesses come with their own confounding symptoms. A bite from the lone star tick in Texas, for example, may result in the development of an allergy to meat, highlighting the poorly understood nature of these infections.

Nine years after my initial diagnosis, it remains a week-to-week struggle to maintain something vaguely resembling normalcy. I have little to no latitude when it comes to diet, stress levels, and self-care. I’d be thrilled to be told I suffer from some other undisclosed illness, but a dozen doctors and countless tests later, my symptoms and positive Lyme tests are the only red flags.

I don’t really care what my condition is called. I just know that my life has been profoundly altered after my run-in with the bacteria.

My journey through the corridors of mainstream medical dysfunction has left me certain of at least two things. One is that the American healthcare system is ill-prepared for this growing surge in poorly understood tick-borne illnesses, and we’re failing people with Lyme on a monumental scale. Two, the scope of our tick-borne illness problem is exponentially worse than what’s currently understood, something that’s likely to become clearer with the rise of more accurate testing.

In the decade since my original diagnosis, my wife and I have moved to Seattle, in no small part to reduce the statistical chance of re-infection. I’ve made slow but notable progress, thanks to a new, affordable doctor who’s willing to listen and experiment within the boundaries of common sense, something that is well out of reach for countless patients worldwide.

If you spend any time reading the newswires or talking to friends and neighbors, you’ll quickly learn that my story is far from unique. I’m choosing to believe scientific inquiry holds an answer, waiting just over the horizon. For those wondering how they can help, simply listening to and believing in these patients would be a solid start.

This story is part of “Tickpocalypse,” a multi-part special report.