Following a simple walk in the woods, Steven Williams’s life turned into a medical odyssey, which clearly illustrates how urgent it is to improve the diagnosis of Lyme disease (borreliosis) in cases where there is no migratory rash (erythema migrans).
In 2024, some 35,147 cases of Lyme disease were diagnosed in primary care in France. This estimate was published by Santé publique France (the French Public Health Agency) in 2026, but it does not take into account all hospital consultations. In the absence of characteristic symptoms, the diagnostic process can become a real obstacle course.
A sudden turn in life
Steven Williams, a Welsh civil servant and musician who was 39 at the time of his statement, had been leading an active life until March 2021. According to his account, it was then that he began to experience extreme fatigue, palpitations, digestive problems, and severe episodes of anxiety and depression.
These symptoms gradually made it difficult for him to carry out certain everyday activities, such as washing, watching television or taking out the rubbish. After seven months of medical consultations and several ineffective treatments, he says he was diagnosed with Lyme disease in October 2021.
However, the man never found a tick on his body and does not know exactly when he was bitten. As he was in the habit of taking long walks with his dog in the forests and mountains of South Wales, he assumes that the infection must have occurred during one of these outings.
The absence of a rash makes diagnosis difficult
Erythema migrans, a red patch that gradually spreads around the site of the bite, is the most characteristic symptom of Lyme disease. According to French guidelines, it appears in around 80 per cent of cases in Europe. However, it may go unnoticed if it is located on the back, the scalp or other areas of the body that are difficult to see. (Editor’s note: According to more recent studies, the classic presentation of erythema migrans may be less common than this; the characteristic redness appears in only around 30–60 per cent of cases.)
In the presence of characteristic migratory erythema, the diagnosis is clinical, and antibiotic treatment can be started without waiting for blood test results. In the absence of this, the doctor may request serological testing based on neurological, joint, skin or, less commonly, cardiac symptoms.
However, general symptoms such as fatigue, difficulty concentrating or anxiety are not, on their own, sufficient to diagnose Lyme disease. They may also be characteristic of numerous other conditions, which necessitates a systematic search for alternative diagnoses.
Why serology may initially be negative
The diagnosis of disseminated forms is based on three elements: the possibility of tick exposure, compatible clinical symptoms, and the results of biological tests.
Serological testing looks for an immune response to bacteria of the Borrelia burgdorferi complex. It usually begins with an ELISA test, supplemented where necessary by an immunoblot, which was previously often referred to as a Western blot.
A negative result from a test carried out too early does not necessarily rule out infection, as the body may not yet have produced sufficient antibodies. Conversely, a positive serology result on its own does not prove that persistent symptoms are caused by an active infection: antibodies may remain detectable even after recovery.
Private treatments that raise concerns
Steven Williams claims to have spent nearly 150,000 pounds sterling – approximately 175,000 euros – and to have taken out a second mortgage on his flat in order to fund private treatment in Germany, Mexico, the United States and India.
He states that he received intravenous antibiotics, whole-body hyperthermia, stem cell therapy and immunoglobulins. These approaches are not considered part of the standard of care for Lyme disease in France. Despite the sums spent, the man himself admitted that he had achieved only limited improvement.
His story also highlights the vulnerability of patients caught in a diagnostic limbo when faced with such costly treatments, the effectiveness of which remains uncertain. In the event of persistent symptoms, the HAS recommends a multidisciplinary assessment at a centre of expertise or a reference centre for tick-borne vector-borne diseases.
Gaining a better understanding of ticks living in France
French research now draws on the CiTIQUE programme’s tick collection (tiquothèque), which contains some 80,000 samples submitted by members of the public. This collection enables the study of the distribution of species and the various microorganisms they carry.
A removed tick can be reported and submitted via the Signalement Tique app or through INRAE’s CiTIQUE programme. However, this procedure, which is for scientific purposes, should never replace a medical consultation if spreading redness, a fever or unusual symptoms occur following exposure.
(C) Lyme Borreliosis Foundation
