About Lyme Disease

I’m still learning! Work in progress.

Lyme Disease is caused by a bacterial spirochete, Borrelia burgdoferi, and is spread by ticks. It is the most common vector-borne disease in the US and the UK, with roughly 120,000 new cases in Europe every year [1]. Lyme Disease is a complex condition that can affect humans in many different ways. In the early stages of infection a variety of flu-like symptoms can occur including fever, malaise, fatigue, joint pain, muscle pain, swollen lymph nodes, headache and encephalopathy, which causes altered mental states. Early infection is also often accompanied by an Erythema Migrans (EM) rash, which looks like a bullseye. Although the EM rash is commonly considered to be a key symptom for a diagnosis of Lyme Disease, evidence suggests that up to 50% of patients do not get the rash.

If caught early, Lyme Disease often responds well to a course of antibiotics. However, even when treated, evidence shows that many patients have long-term difficulties with fatigue, joint and muscle pain, memory and concentration, and other cognitive difficulties [2]. If left untreated, Lyme Disease can attack the whole body including the nervous system, brain, heart and joints, and can cause significant immune impairment. LD also freqently attacks hormone-producing glands in the body, including the thyroid, ovaries, adrenal gland and pituitary.

A survey by the John Caudwell Lyme charity found that 69% of LD patients had been ill for at least two years before being diagnosed, with 29% of them having had symptoms for 10 years or more. The most common diagnoses that patients received before being diagnosed with LD were ME/CFS (nearly 50% of patients), depression (29%), and fibromyalgia (26%).

Standard blood tests for Lyme Disease are unreliable, with research suggesting the specificity of the test used in the NHS is around 60%, meaning that 40% of people who have Lyme Disease will test negative. There is huge debate about how best to treat patients who are not diagnosed early, because although many NHS doctors state that a short course of antibiotics will cure them, patient experience suggests that this is rarely the case.

In the UK, most patients do not receive adequate treatment on the NHS, and those that can afford to do so seek treatment abroad, privately. I have only recently been diangosed and am still, like many, many others, trying to navigate my way through the minefield that is Lyme Disease.

More information:

Caudwell LymeCo



[1] O’Connell S, Granstroem M, Gray JS, Stanek G. Epidemiology of
European Lyme borreliosis. Zentr bl Bakteriol 1998;287:229–40.

[2] Cairns, V. & Godwin J. (2005). Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms. International Journal of Epidemiology, 34, 1340-5.