A patient’s painful experiences and an expert physician’s thoughts
After years of symptoms and misdiagnoses, a patient recounts how she learned she was battling a life-changing illness that poses a challenge to experts.
You’ve probably heard of Lyme disease — an infection caused by the bacterium Borrelia burgdorferi, which is usually spread to humans through tick bites. But chronic Lyme disease remains a much more challenging medical mystery, says Amy Offutt, MD, integrative physician and chair of the board of directors of the International Lyme and Associated Diseases Society (ILADS).
Early-stage Lyme disease can be cured with prompt treatment with antibiotics, she explains. But if not treated properly, the infection spreads, evades the immune system, and affects the body in more complex, treatment-resistant ways.
Below, Dr. Offutt explains why chronic Lyme disease is so mysterious, and her Texas patient, Christian Scarborough, shares his decades-long search for answers.
What is chronic Lyme disease?
“Chronic Lyme disease, according to the most accurate medical definition, is a multi-organ disease that lasts for at least six months, either continuously or intermittently, and is caused by active, ongoing infection with a member of the Borrelia burgdorferi sensu lato bacterial complex,” says Dr Offutt. “However, this definition differs from the one that I think many of my patients would share.”
He says that many of his patients with chronic Lyme disease spend months or years seeking help for problems such as persistent fatigue, muscle and joint pain, cognitive problems and neurological complaints. Two main problems people face? These symptoms overlap with those of many other diseases, and there is no single test that can definitively confirm or rule out chronic Lyme disease.
How I knew I had chronic Lyme disease: one patient’s story
Christian grew up on a farm in Virginia, where he and his siblings spent their days outdoors, among animals and in the woods, picking ticks off themselves and thinking nothing of it.
“Then, as a teenager, these symptoms started, but no doctor associated them with a vector-borne disease,” he says. “The thing is, I’m from a generation that says, ‘just rub some dirt on it’. So no one thought anything of it when I was 16.”
Years of misdiagnosis
As a teenager, Christian was given medication to treat what doctors diagnosed as arthritis. “Around the same time, I started having insomnia, anxiety and all sorts of other problems. And again, no one looked into it further. By the time I was 16, I was already on sleeping pills.”
“A few years ago, I had a total of three joint replacements – shoulder, hip and knee – before I turned 60,” says Christian. “And again, no one made the connection with what is now called Lyme arthritis.”
Later, he developed severe gastrointestinal (GI) problems. “I had diarrhoea almost every day, several times a day, and I lost weight quickly. By the time I saw a doctor, I had lost 14 kg in just over three months,” he says. After a series of tests, including one that ruled out pancreatic cancer, he was diagnosed with irritable bowel syndrome (IBS) and treated for it.
“But my condition continued to deteriorate,” Christian says. “I was incredibly frustrated. I kept losing weight. I started at 87 kg with 7% body fat and lost weight down to 67 kg. I was skin and bones, had no energy, and had constant diarrhoea every day.”
The road to a diagnosis of chronic Lyme disease
According to Dr Offutt, diagnosing chronic Lyme disease is difficult, nuanced and highly individualised. But when Christian first met Dr Offutt, one important sign stood out: his neuropathy. “I told him that my last two fingers felt like they were constantly under the influence of Novacaine, and my shins hurt at night, and he said, ‘You have Lyme disease,'” he says.
Tests showed that he had three tick-borne diseases, although this laboratory test requires very specialised molecular-level DNA analysis. “According to Dr Offutt,” says Christian, “there are only two laboratories in the whole country that are actually capable of doing this.”
This diagnosis confirmed what the 16-year-old had suspected, as he was taking medication for arthritis and sleeping pills. “It’s frustrating because many people don’t believe you have Lyme disease, including both of my insurance companies. I wish they could be in my shoes for a day.”
Life with chronic Lyme disease
“I’m an optimist,” says Christian. “[My doctor] told me early on that all the medicine in the world won’t help if you’re not in the right frame of mind. I know I have to stay positive, and I hope to go into remission this year.”
However, recovery has not been easy. “When my stomach started to improve, I had terrible bouts of Lyme arthritis – it affected my whole body, as if my bones were broken. Recently, I developed what are known as digital mucoceles on my fingers.” The only treatment for these cysts is surgery, but this is risky, especially for a musician like Christian. He says he continues to suffer from severe brain fog.
The disease has also affected his active lifestyle. “I’m the guy who has black belts in several martial arts. And until recently, I couldn’t train at all because it would have caused a calorie deficit,” he says. “Right now, I almost hate food because for the past two years, I’ve been stuffing myself with 5,000 calories a day just to try to maintain my weight. At least now I’m slowly regaining my weight and gradually getting back into exercise.”
“But one of the difficult things is that people look at me, especially now that I’ve gained a little weight, and say, ‘Well, you must be doing great.’ They have no idea that my cysts have been drained twice, but they keep coming back. Or about the times when I suddenly get neuropathy — I’m sitting in a restaurant on a chair, and when I put my foot down, I collapse because it feels like my bones are broken.”
Despite this, Christian believes he is moving in the right direction. “I just think it’s a really slow process. But two years ago, I was a skeleton, I couldn’t do anything. So I’m grateful [to my doctors].”
What causes chronic Lyme disease?
While medical science continues to investigate why Lyme disease persists in some people, it appears that underlying health vulnerabilities also play a role, says Dr. Offut. These can include any factor that compromises the immune system, such as:
- A pre-existing illness.
- Lifestyle factors such as poor nutrition or chronic stress.
- Inadequate treatment of the initial infection.
Christian believes that complications during his birth may have contributed to his case. But one trigger stands out as a possible explanation for the worsening of his Lyme disease-related health problems. “I’ve learned that sometimes [the infection] just waits for a certain moment when your body is weak, and then it just goes crazy.”
What should you do if you think you have chronic Lyme disease?
According to Dr. Offutt, there are several important signs that indicate the need for medical evaluation to rule out Lyme disease, especially if symptoms persist or worsen despite initial treatment. These signs may include:
- Persistent or worsening fatigue, muscle and joint pain.
- Cognitive difficulties, such as memory problems, confusion, or brain fog.
- Neurological symptoms, such as numbness, tingling, or facial paralysis.
- Unexplained fever, night sweats, or recurring flu-like symptoms.
- New or persistent heart symptoms, such as palpitations or chest pain.
- Symptoms that significantly impact daily activities or quality of life.
From his interactions with others suffering from chronic Lyme disease, Christian shares his experience that three symptoms appear again and again: joint inflammation, nerve damage and shin pain.
Source: weborvos.hu
