Lyme disease is still a somewhat misunderstood condition around the world. With some doctors ignorant of the symptoms and proper treatment of Lyme, many people are left to battle the illness on their own. Because complications can arise if the disease is left untreated, individuals have begun to push for more effective tests to check for Lyme. In fact, there is a growing demand for the NHS to adopt a German-style Lyme disease test throughout the UK in hopes of better diagnosing the illness.
What is Lyme disease?
Lyme disease is an infection that is spread to humans by ticks that carry the Borrelia burgdorferi bacteria. It was first studied in the US back in the 1970s and has continued to spread around the globe in the past couple of decades. It was previously thought that there were around 3,000 new cases of Lyme disease per year in the UK and around 65,000 cases per year in Europe. However, a new study suggests that the number may actually be 2–3 times that amount, with close to 8,000 reported cases in the UK alone and possibly up to two million in Western Europe. Although more research is needed to verify these findings, numbers are expected to continue to grow as Lyme disease awareness expands, and as ticks become more prevalent due to climate change.
The main symptoms individuals experience with Lyme disease can include:
- A red bullseye rash
- Extreme fatigue or tiredness
- Joint or muscle pain
- Flu-like symptoms (including headaches, fever, malaise)
Patients might also suffer from changes to their mood, sleep patterns and appetite. These symptoms tend to appear in people with acute Lyme disease, but can differ from person to person and can change throughout the course of a patient’s treatment and recovery. When treated with a course of antibiotics, most of these symptoms dissipate and the patient eventually recovers. However, Lyme disease can become chronic if left untreated for too long (or if a patient for some reason doesn’t respond to a course of antibiotics). Chronic Lyme disease can present with the above-mentioned symptoms, as well as:
- Cognitive difficulties
- Decreased short-term memory
- Difficulty concentrating
- Speech problems
- Limited or impaired mobility
It’s believed that more severe symptoms develop because the infection has spread to the brain and other tissue in the body. Treatment for chronic Lyme disease often includes antibiotics administered through injections or intravenously while the patient is hospitalised.
Can you test for Lyme disease on the NHS?
Currently, it is possible to test and get treatment for acute Lyme disease in the UK through the NHS. However, the lack of Lyme literacy in the mainstream medical community means that patients are often misdiagnosed or simply dismissed. There are two Lyme disease blood tests available on the NHS that a doctor can decide to run, but these tests are not always 100% accurate (especially when a patient is in the chronic stages of the infection). The best test for Lyme disease is still being researched, but there have been some recent breakthroughs in diagnostic accuracy for a German-style test.
What is the German-style Lyme test?
There has been a lot of pressure from within the Lyme community to create a test that increases the diagnostic accuracy for Lyme disease. A new German-style ELISpot test (sometimes referred to as the LymeSpot or the LymeSpot revised) has been heralded as a breakthrough in Lyme diagnostic tools, as it’s much more sensitive than traditional blood tests. It can also provide doctors with crucial information concerning what stage of Lyme disease their patient is in (i.e. acute or chronic), and potentially even whether the patient has been exposed to Lyme disease in the past and the pathogen is lying dormant in their immune systems. This breakthrough has resulted in public pressure for the NHS to also adopt it, as the test is currently only available through specialised private practices.
A recent news story about a woman named Yen Lau described how she wasn’t able to obtain a proper Lyme disease diagnosis before her health completely deteriorated. She was misdiagnosed with chronic fatigue syndrome and fibromyalgia, even though she was convinced these conditions didn’t fully explain her symptoms. Lau had been tested for Lyme disease in the UK, but was told it was ruled out since the test was not done for the actual bacteria of infected ticks. Only later was the bacteria found in a test done by a German lab. Because of her story (and others like her), people are asking the NHS to consider including this new German-style LymeSpot test as part of their diagnostic process.
Doctors throughout the UK are joining their patients in urging the NHS to provide improved diagnostic tools. In fact, Scotland’s Chief Medical Officer, Catherine Calderwood, engaged in a written campaign to all of the country’s NHS boards and to general practitioners to be vigilant about accurately spotting and diagnosing Lyme disease. Medical professionals are hoping that their voices will eventually be heard, and the NHS will comply with instituting additional Lyme disease tests to help properly diagnose the condition.
Because there are so many people who have experienced the debilitating effects of Lyme disease, their quest to shed more light on the condition is understandable. In pushing for more comprehensive blood tests and other important diagnostic tools (not just the patient reporting their symptoms), individuals are hoping that Lyme disease can be treated more quickly and more effectively in the future. Their goal is to prevent cases of chronic Lyme disease from developing, if possible, and making it less likely that patients will have to endure severe and life-altering symptoms. With better diagnostic tools and a general improved understanding of how Lyme disease works, the medical community might just be able to alleviate Lyme disease symptoms around the world.