Will Lyme Disease Kill You

Lyme disease is a widespread and often misunderstood infection that has touched about 15% of people worldwide, as indicated by a recent BMJ Global Health report. Its mysterious symptoms make proper diagnosis challenging and can potentially lead to complications. Due to its elusive nature it is thought that Lyme disease is fatal and can kill you.

Though Lyme disease is curable with antibiotics still it has potential to cause fatalities. According to the Centers for Disease Control and Prevention (CDC), 11 fatal cases of Lyme carditis occurred worldwide between 1985 and 2019.

So, the question remains that can Lyme disease kill you or you can survive it? Let’s get to the answers.

What is Lyme disease?

Lyme disease is an infectious illness caused by the bacterium Borrelia burgdorferi and transmitted through tick bites, primarily by deer ticks. It manifests in various stages, with early symptoms including fever, fatigue, and a characteristic circular rash. If left untreated, Lyme disease can progress to affect joints, the nervous system, and the heart.

Accurate diagnosis can be challenging, as current antibody-based tests may yield false negatives, especially in the early stages. Early detection and treatment with antibiotics are crucial to prevent severe complications. Lyme disease is prevalent in certain regions, emphasizing the importance of tick awareness and prevention.

Why it is Hard to Diagnose Lyme disease?

The most significant challenge in Lyme disease lies within its diagnostic procedures. A comprehensive review of 13 studies assessing the CDC-recommended two-tier test has revealed an alarming 49-65% sensitivity rate, applicable to all stages of the illness. This implies that individuals infected with the Lyme-causing bacteria have a 35-51% chance of receiving a false negative result.

For those unfamiliar with Lyme disease, this might appear astonishing. How can a diagnostic test be as uncertain as the flip of a coin? However, those intimately acquainted with Lyme grapple with this harsh reality. The underlying issue behind these disheartening outcomes is clear. The test seeks antibodies, which peak weeks after the initial infection. This renders the test ineffective during the earliest, most treatable stages of infection.

Moreover, individuals in the advanced, chronic stages often exhibit suppressed immune systems. Weak immune responses result in lower antibody levels, making titers fall below detection thresholds. Furthermore, antibody tests are futile for individuals previously diagnosed and treated but still suffering symptoms. They can detect exposure to the pathogen but cannot confirm an active infection.

Direct pathogen detection, rather than tracking the immune system's response, presents a more promising diagnostic approach. However, for Borrelia burgdorferi, the Lyme disease-causing bacteria, direct detection proves more challenging than anticipated. Borrelia hides in tissues, making it elusive in blood samples. With bacterial counts as low as 0.1 per mL of blood, conventional PCR's detection limits fall woefully short.

Nonetheless, scientific progress offers hope. The Lyme Borrelia Nanotrap Antigen Test, developed by Galaxy Diagnostics, offers a breakthrough by detecting Lyme through urine samples. Borrelia settles in the bladder, releasing unique proteins. Through sample enrichment techniques, this assay can identify these proteins, confirming infection across all disease stages, even post-treatment. Published results boast a remarkable 100% sensitivity rate in early-stage patients with the distinctive Lyme rash, marking a significant improvement over the current diagnostic status quo.

Is Lyme disease completely curable?

Beyond accurate detection, Lyme and tick-borne illnesses present another critical challenge. Whether antibiotics can effectively clear the infection or not. This is a topic of intense scientific debate.

Recent research sheds light on the matter. The good news is that if Lyme disease is caught early most patients can recover. The not-so-good news that most patients translates to 56.8%. A study from Johns Hopkins University found that out of 234 patients promptly diagnosed and treated, 56.8% regained their health, leaving 43.2% with persistent symptoms. It's almost like flipping a coin.

Among those with persistent symptoms, roughly two-thirds can eventually return to normal life, while the remaining third face a diminished quality of life. This group is labeled as having Post-Treatment Lyme Disease (PTLD), a term that perplexed me during Russ's illness journey.

Debate rages among scientists. Some argue that PTLD arises from persistent Borrelia due to inadequate antibiotic treatment. Others contend that it's not Borrelia but some other immune issue causing PTLD. This debate adds complexity to understanding and addressing these lingering symptoms.

Can a person die from Lyme disease?

Lyme disease-related fatalities are exceptionally rare. However, Lyme carditis, an outcome of Lyme disease that disrupts the normal electrical rhythm of the heart, affects approximately 1 to 10 individuals per 100 Lyme disease cases in the United States. In certain instances of Lyme carditis, a phenomenon known as heart block arises due to interference in the signaling between the heart's upper and lower chambers.

Lyme disease is left untreated or if it progresses to an advanced stage, it can affect vital organs such as the heart or nervous system, potentially leading to life-threatening complications. However, with prompt diagnosis and appropriate treatment, which typically involves antibiotics, the vast majority of individuals with Lyme disease recover fully and do not face a significant risk of death.

Outlook with or without treatment

Lyme disease can be treated with oral or intravenous antibiotics, particularly when diagnosed early, effectively clearing the infection and preventing bacterial spread. In later stages, when symptoms have developed due to the bacterial spread, antibiotics can alleviate these symptoms. However, some symptoms might persist for years or never fully resolve.

Without treatment, Lyme disease can result in the bacteria remaining dormant in various body parts for an extended period. Later, weeks, months, or even years down the line, these bacteria may reactivate, leading to complications affecting joints, the brain, heart, other organs, or the nervous system. When these lingering symptoms prove challenging to treat, it's referred to as post-treatment Lyme disease (PTLD) or chronic Lyme disease (CLD).

Long-term complications of Lyme disease

Lyme disease can lead to a range of long-term complications but deaths directly linked to Lyme disease are extremely rare. The severity of these complications often depends on factors like the stage at which the disease is diagnosed and treated.

One of the most common long-term complications is Post-Treatment Lyme Disease Syndrome (PTLDS), which can affect individuals even after they've received antibiotic treatment. PTLDS can bring about persistent symptoms such as fatigue, joint pain, and cognitive difficulties. These symptoms can be debilitating, impacting a person's quality of life.

Lyme arthritis is another potential long-term complication, particularly in cases where the initial infection wasn't promptly treated. It often manifests as painful, swollen joints, commonly the knees, and can last for months. While not typically life-threatening, it can cause significant discomfort and mobility issues.

In more severe cases, Lyme disease can lead to cardiac complications such as Lyme carditis, affecting the heart's electrical system. This can result in symptoms like heart palpitations, chest pain, and fainting. While rare, if left untreated, Lyme carditis could potentially be life-threatening.

Neurological complications can also arise, including Lyme meningitis or encephalitis, which can lead to symptoms like severe headaches, stiff neck, and cognitive disturbances. These complications, if not addressed promptly, can have long-lasting effects on the nervous system, although they rarely result in fatalities.

In some instances, Lyme disease can cause chronic neurological conditions, like Lyme neuropathy, resulting in persistent numbness, tingling, and weakness. While these conditions can profoundly affect one's quality of life, they are not typically associated with a risk of death.

Case Studies of deaths with Lyme disease

Peter Smith

In June 2017, 25-year-old Peter Smith, a college graduate from Temple University, sought medical help at Mercy Hospital in Portland, Maine, for a spreading rash and flu-like symptoms. Despite symptoms that aligned with Lyme disease. He was misdiagnosed twice with allergies, delaying the correct diagnosis. Tragically, the Lyme bacteria had already entered his heart, causing the rare and severe condition known as Lyme carditis, occurring in only 1% of Lyme disease cases.

Five days after his second misdiagnosis, Smith was correctly diagnosed at Maine Medical Center, but it was too late. He passed away at home eight days later. In January 2023, Smith's parents filed a lawsuit against the doctor, hospital, and hospital system, ultimately winning a $6.5 million settlement for wrongful death.

Nichole Bell’s husband Russ

Russ's struggle with Lyme disease was tough and changed his life profoundly. It all began with a tiny tick bite in the woods he loved. But this bite introduced a fierce enemy into his body called Borrelia burgdorferi, which causes Lyme disease.

At first, Russ had subtle symptoms like tiredness, joint pain, and occasional headaches. He thought it was just regular stress. But over time, things got worse. He was often so tired that he couldn't get out of bed, and he felt constant pain and weakness.

Russ started visiting doctors, doing tests, and trying to figure out what was wrong. This was frustrating for him and his family, especially his wife Nicole, who saw him suffer. Lyme disease is hard to diagnose, and the usual tests often didn't work well, leaving people like Russ in the dark about their illness.

By the time Russ got a Lyme disease diagnosis, it was already advanced. The bacteria had taken hold, and treatment was tough. He had to take antibiotics, and his journey was filled with ups and downs. Unfortunately, he got dementia and said goodbye to the world. 

Final Words

Though Lyme disease is treatable but due to its misdiagnosis, many people fall in the chronic trap. The bacteria can multiply and reach the heart to cause Lyme carditis that causes death due to heart blockage. The only cure lies in prevention and early diagnosis and treatment. If you think that you are having symptoms that may relate to Lyme disease, seek medical advice before it’s too late.