After years of symptoms and misdiagnoses, one patient shares how he learned he had a life-altering condition that challenges medical experts.
About the expert
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Highlights
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You’ve probably heard of Lyme disease—the bacterial infection caused by Borrelia burgdorferi that’s usually transmitted to humans through tick bites. But chronic Lyme disease remains a much more challenging medical mystery, says Amy Offutt, MD, an integrative medicine physician and the president of the board of directors for the International Lyme and Associated Diseases Society (ILADS).
Prompt treatment with antibiotics can cure early Lyme disease, she explains. But if not adequately treated, the infection spreads, evades the immune system, and interacts with the body in more complex and treatment-resistant ways.
Below, Dr. Offutt explains why chronic Lyme is so puzzling—and her patient, Christian Scarborough from Texas, shares his decades-long search for answers.
What is chronic Lyme disease?
“Chronic Lyme disease, in its most precise medical definition, is a multi-system illness that lasts continuously or intermittently for at least six months and is caused by an active, ongoing infection of a member of the Borrelia burgdorferi sensu lato bacterial complex,” Dr. Offut says. “This definition differs, however, from the definition that I think many of my patients would share.”
She says that many of her patients with chronic Lyme spend months or years finding help to address issues like persistent fatigue, muscle and joint pain, cognitive issues, and neurological complaints. Two of the main issues people encounter? These symptoms overlap with many other conditions, and there’s no single test that can definitively confirm or rule out chronic Lyme.
“How I knew I had chronic Lyme disease: A patient’s story
By Christian Scarborough from Texas, as told to Leslie Finlay, MPA
Christian grew up on a farm in Virginia, where he and his brothers would spend their days outdoors among livestock and woodlands, picking ticks off themselves, assuming nothing out of the ordinary.
“Then I started having all these symptoms as a teenager, but no doctor ever made the connection with a vector-borne illness,” he says. “And the thing is that I come from that generation of ‘just rub some dirt on it.’ So nobody really thought anything of it when I was 16 years old.”
Years of misdiagnoses
As a teenager, Christian was put on medication to treat what his doctors diagnosed as arthritis. “That was about the same time I started developing insomnia and anxiety and all kinds of other issues like that. And again, nobody looked further. They actually started giving me sleeping pills at 16 years old.”
“Fast forward to a few years ago, I’ve had three total joint replacements—shoulder, hip, and knee—all before I was 60 years old,” Christian says. “And again, nobody connected it to what they’ve now designated as Lyme arthritis.”
He later developed severe gastrointestinal (GI) issues. “I started developing diarrhea almost every single day, multiple times a day, and I started losing weight rapidly. By the time I saw a doctor, I had lost 30 pounds in a little over three months,” he says. After a series of tests—including one to rule out pancreatic cancer—he was diagnosed and treated for Irritable Bowel Syndrome with Diarrhea (IBSD).
“But I got worse and worse,” Christian says. “I was incredibly frustrated. I kept losing weight. I started this venture at 192 pounds and 7% body fat, and I got to 149 pounds. I looked like a skeleton, zero energy, nothing, and just constant diarrhea every day.”
The path to a chronic Lyme disease diagnosis
According to Dr. Offutt, diagnosing chronic Lyme is difficult, nuanced, and very individualized. But when Christian first met Dr. Offutt, one key clue stood out: his neuropathy. “I told her how my last two fingers feel like they’re constantly coming in and out of novacaine, I’d get shin pain at night, and she said, ‘You’ve got Lyme,'” he says.
Tests revealed he had three vector-borne illnesses, though this labwork is highly specialized, requiring molecular-level DNA analysis. “According to Dr. Offutt,” Christian says, “there are only two labs in the entire country that are really qualified to do this.”
This diagnosis felt vindicating for the 16-year-old version of himself who took arthritis medication and sleeping pills. “It’s frustrating because a lot of people don’t believe that you have Lyme, including both of my insurance companies. I just wish they could be in my shoes for one day.”
Treating chronic Lyme disease
There’s no one-size-fits-all treatment for chronic Lyme, Dr. Offutt says. Treatment may include antibiotic therapy, but supportive therapies are typically also necessary. The inflammation, nutritional deficiencies, immune dysfunction, and co-existing conditions related to chronic Lyme often require tailored approaches.
“Left untreated, the infection and associated inflammation may lead to long-term, multi-system complications affecting the nervous system, joints, heart, and cognitive function,” she says. “The infection can also compromise the immune system, making patients more susceptible to other illnesses and reducing quality of life.”
After his chronic Lyme diagnosis was confirmed, Christian explains his treatment has involved (but is not limited to):
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Antibiotics, including a strong IV antibiotic called Rocephin. “You have to mix it with lidocaine (an anesthetic) because it’s so painful,” he says.
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Vowst, a newly-approved fecal transplant, to address recurrent C. diff infections from long-term GI issues and antibiotic use.
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Immunoglobulin antibodies to help ease gut inflammation.
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Low-dose naltrexone, a drug traditionally used in addiction therapy, but at low doses is thought to reduce gut inflammation and immune dysfunction.
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Additional therapies, such as ozone therapy, to support his immune system and procaine IV treatments to help manage neuropathy.
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Nutritional support, including supplements, weight-gain shakes, and a low-FODMAP diet to support malabsorption issues caused by Lyme.
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Mental health care to work through the anxiety tied to chronic illness. “Most of your feel-good chemicals are made in your gut,” he says, so the amount of those healthy gut bacteria may be very compromised “if your gut is shot, like mine.”
Living with chronic Lyme disease
“I am optimistic,” Christian says. “[My doctor] said early on that all the drugs in the world won’t get you well if you don’t have the right mindset. I know I have to remain positive, and I’m hoping for remission this year.”
Still, recovery hasn’t been straightforward. “Right as I started getting better with my gut, I started having absolutely horrific Lyme arthritis breakouts—full body, like I had broken bones. And recently I’ve developed these things called digital mucosal cysts on my fingers.” Surgery is the only option for these cysts—but it’s risky, especially for a musician like Christian. He says that severe brain fog also persists.
The illness has taken a toll on his active lifestyle as well. “I’m that guy who’s the black belt in multiple martial arts. And until recently, I haven’t been able to exercise at all because I would create a calorie deficit,” he says. “I almost hate food at this point because for the last two years I’ve been cramming about 5,000 calories a day down my throat just to try and maintain weight. At least now, I’m slowly gaining some of the weight back, and I’m slowly getting back into exercise.”
“But one tough thing is that people look at me, especially now that I put a little weight back on, and they’re like, Well, you must be doing great. They have no idea about the cysts I’ve had drained twice, but keep coming back. Or the times when neuropathy just pops up—I’m sitting on a stool at a restaurant and when I put my foot down, I collapse on the floor because my bones feel like they’re broken.”
Even so, Christian believes he’s progressing in the right direction. “I just think it’s a darn slow process. But two years ago, I was this emaciated thing, I couldn’t do anything. So I’m grateful to [my doctors].”
What causes chronic Lyme disease
While the medical community continues to study why Lyme persists in some people, underlying health vulnerabilities seem to play a role, Dr. Offut says. These can include any factor that compromises immune function, such as:
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A pre-existing illness.
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Lifestyle factors like poor nutrition or chronic stress.
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Inadequate treatment of the initial infection.
Christian says that complications from his birth may have contributed to his case. But one trigger stands out as a possible explanation for his serious escalation of Lyme-related health issues. “I have learned that sometimes [the infection] lies in wait for a certain opportunity when your system is weak, and then it just unleashes itself like crazy.”
He shares that his mother was sick with pancreatic cancer—and not long after her passing, he had to have emergency colon surgery. “I’m thinking I was weak and my immune system was down, and I wasn’t very strong emotionally at that point, watching my mom go like that.”
What to do if you think you have chronic Lyme disease
Dr. Offutt says that there are several key signs that indicate it’s important to seek medical evaluation for Lyme disease, especially if symptoms persist or worsen despite initial treatment. These signs can include:
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Persistent or worsening fatigue, muscle, and joint pain.
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Cognitive difficulties such as memory problems, confusion, or brain fog.
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Neurological symptoms like numbness, tingling, or facial palsy.
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Unexplained fevers, night sweats, or recurrent flu-like symptoms.
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New or persistent cardiac symptoms such as palpitations or chest pain.
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Symptoms that interfere significantly with daily activities or quality of life.
From his experience connecting with others with chronic Lyme, Christian shares that three symptoms seem to pop up again and again: arthritis, neuropathy, and shin pain.
“If someone suspects they have chronic Lyme disease, the first step is to consult a healthcare provider experienced in diagnosing and managing tick-borne illnesses—preferably one familiar with an ILADS approach,” Dr. Offatt says. “We have a provider search that was accessed more than 37,000 times in 2024.” Be sure to bring your doctor a detailed history of symptoms, prior tick or flea exposure, and treatments received.
Still, she acknowledges that there’s stigma surrounding chronic Lyme disease within the medical community: “Many patients report that they are more informed about their condition than the clinicians they consult, underscoring the urgent need for ongoing education, clinical humility, and a more patient-centered approach to care.”
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