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Why Lyme Disease Is Often So Difficult To Diagnose And Treat

From medical professionals and public policymakers to parents and outdoor enthusiasts, more and more people are talking about Lyme disease. Why the sudden surge in interest? Perhaps it’s because Lyme disease incidence is increasing at a rate that some consider alarming.

According to the World Health Organization, over 360,000 cases of Lyme disease have been reported over the last two decades. And the International Association of Medical Assistance to Travelers (IAMAT) reports that the risk of contracting Lyme disease is present in nearly 40 countries around the world. Of course, these statistics don’t take into account the enormous number of undiagnosed and misdiagnosed cases of Lyme disease.

What is Lyme disease, and why is it often so difficult to diagnose and treat? Bearing in mind the potential threat this illness poses for global health, it’s important for healthcare providers and patients alike to educate themselves about Lyme disease.


What is Lyme disease and how is it contracted?

Lyme disease is a bacterial infection caused by Borrelia burgdorferi, a corkscrew-shaped bacterium. It is transmitted to humans by Ixodes ticks (also known as black-legged or deer ticks) that are typically found living in wooded areas or long grass. These ticks become infected with Borrelia burgdorferi when they feed on rodents or other small mammals, as well as certain birds. When a tick carrying Borrelia burgdorferi bites a human, the bacterium spreads from the tick to the bitten human, leading to Lyme disease.


What are the symptoms of Lyme disease?

Lyme disease is generally described in two stages: early and late. Although diagnosis and treatment during the early stage of Lyme disease will ideally prevent the illness from progressing, it’s important to be aware of the unique symptoms that occur during each stage. In the early stage of Lyme disease, symptoms include:

  • Erythema migrans, an expanding red rash that sometimes resembles a bullseye or target
  • Headaches and neck stiffness
  • Fever
  • Fatigue
  • Joint pain and swelling
  • Weakness or paralysis of facial muscles
  • Lightheadedness or fainting
  • Heart palpitations or chest pain


Chest pain can be a symptom of Lyme disease.


Some of the symptoms of late-stage or chronic Lyme disease are:

  • Fatigue
  • Muscle aches
  • Joint pain
  • Headaches
  • Impaired cognition (including memory loss, trouble concentrating or ‘brain fog’)
  • Neuropathy (including nerve pain, numbness or tingling)
  • Sleep problems
  • Changes in mood
  • Digestive issues


How is Lyme disease diagnosed and why is diagnosis often difficult?

Lyme disease is often diagnosed clinically, based on a patient’s symptoms and reported exposure to ticks. There are blood tests for Lyme that can be useful diagnostic tools, but only under specific circumstances. If a person is tested in the first couple weeks after exposure to Lyme disease, antibodies may not have had enough time to develop, meaning the person might test negative for Lyme even though they’ve been infected with the disease. False negatives can occur for other reasons, too, making blood tests for Lyme somewhat unreliable. Scientists are working to improve the sensitivity of these tests, particularly during the first few weeks after infection.

Aside from testing inaccuracies, there are a number of factors that make diagnosing Lyme disease difficult. Not everyone who is exposed to Lyme disease experiences symptoms like the tell-tale bullseye rash. And even if a person is presenting symptoms, physicians who aren’t trained to recognise signs of Lyme disease may either miss them completely or misattribute them to a different illness.

All of this difficulty around clinical diagnosis is exponentially exacerbated if a person infected with Lyme doesn’t realise they’ve been bitten by a tick. Without the tick bite as a starting point, a patient or practitioner would have no real reason to consider Lyme disease as a possible diagnosis.


How is Lyme disease treated?

Just as symptoms of Lyme disease are generally grouped according to early and late stages of illness, so are treatment approaches. Early-stage Lyme infection is treated with antibiotics. Patients typically are either prescribed a course of doxycycline for 10 days to four weeks, or a combination of cefuroxime and amoxicillin for two to four weeks. (Experience shows that the infection must be treated for four weeks to avoid chronic infection. This complies with ILADS standards.)

In cases where Lyme disease is caught early, this type of antibiotic therapy can be extremely effective – some experts say up to 90% of infections are cured this way. The unfortunate reality of the situation, though, is that many early-stage Lyme patients given standard antibiotic treatment continue to experience symptoms. For these people with late-stage or chronic Lyme disease, other antibiotics (including some given intravenously) may be indicated. However, patients with chronic Lyme disease don’t always respond well to treatment.


Antibiotics are typically used to treat both early- and late-stage Lyme disease.


So many challenges face patients with chronic Lyme disease who are seeking treatment. It can be hard to find a physician who will even consider diagnosing chronic Lyme, since some medical professionals don’t even believe the illness exists. And those practitioners willing to diagnose and treat chronic Lyme disease often struggle to help patients manage their many symptoms effectively.

We still have much to learn about Lyme disease, but arming ourselves with information is a good first step in overcoming difficulties associated with diagnosing and treating this complex illness.