Thirteen years later, Sylvie sees her again: a big red patch appeared on her thigh after a family celebration in the countryside. “At the time, I thought it was an allergy. I never would have thought of a tick bite. remembers this 62-year-old former nurse. It was only six years later, in 2015, that Sylvie was diagnosed with Lyme disease.
Six years of ” obstacle course ” during which she consulted multiple specialists in the hope of understanding the origin of her pain in the head, back, muscles and joints. “Today, I am no longer in crisis, but I have never found the rhythm I had beforeshe says. And I continue to take painkillers every day. »
An often complex diagnosis
Stories like that of Sylvie, Dr. Alice Raffetin hears almost every day. Since July 2019, this infectiologist at the Villeneuve-Saint-Georges hospital (Val-de-Marne), has been coordinating one of the five reference centers designated by the government to improve the diagnosis and management of the disease of Lyme, transmitted by ticks infected with the bacteria Borrelia (read below). “Some patients arrive with suitcases for additional examinations, she testifies. They saw dozens of specialists, multiplied MRIs… And sometimes came across charlatans, who misdiagnosed them with the disease or, on the contrary, missed it.»
Here, they are welcomed for half a day, the time to see the different members of the team – rheumatologist, neurologist, psychologist… First challenge, and not the least: make a diagnosis. “There is no direct test like we do for PCR to detect Covid”, reminds Alice Raffetin. Three elements must therefore be brought together “First, the fact of having been exposed to a tick, either because you have a bite, or because you have visited places of significant exposure. Then, the presence of clinical signs: damage to the skin, joints or the nervous system, but also more subjective signs such as fatigue, pain… Finally, the serological test, which allows you to see if you have produced antibodies against the bacteria Borrelia and therefore been in contact with her. »
Syndrome « post-Lyme »
Of the 200 patients seen each year, only 15% leave with a diagnosis of Lyme “proven or possible”. “Many are disappointed, because they would have liked to put a name to what they feel…”, emphasizes Alice Raffetin. The sick, on the other hand, receive antibiotics, a very effective treatment, but which is not always synonymous with a return to normal. “Antibiotics eliminate the bacteria, however, an inflammatory phenomenon may persist”, specifies the infectiologist.
A “post-Lyme” syndrome that is often difficult to accept. “Some patients find it hard to believe that they no longer have the bacteria because they still feel pain or fatigue. Especially since they read a lot of contradictory and disturbing things on the Internet”, reports Giulia Paoletti, the centre’s psychologist. To reassure them, she often uses the image of a burning house. “The house caught fire, the firefighters put in water and put out the fire. But then, everything remains to be rebuilt. It’s the same for the body », compare the practitioner, who offers them ” tools “ to better manage their symptoms, in particular through hypnosis or mindfulness meditation.“Whether they have Lyme somewhere or not, I don’t care. My goal is to help them, to start doing activities again. »
Global warming in question
If medical wandering remains a reality for many patients, it tends to be reduced. “It has gone from three years on average, to a year and a half today”, says Alice Raffetin. There remains the issue of care, very unequal from one territory to another. “The creation of reference centers has enabled a harmonization of practices, but there are still catastrophic paths. We must improve access to care throughout the territory. »
Especially since the incidence is increasing in France, with around 60,000 cases detected each year.. If better diagnostics partly explain this increase, global warming is also to blame. “Ticks don’t like the cold, but we have hardly had any winters in recent years. They are therefore active over longer periods. explains the infectiologist, while insisting: “Less than 5% of tick bites result in Lyme disease. Most of the time, nothing happens. »
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Five reference centers in France
In July 2019, five hospitals were designated as reference centers within the framework of the Lyme disease control plan: the University Hospitals of Marseille, Rennes, Clermont-Ferrand (associated with that of Saint-Étienne), Strasbourg (associated with that of Nancy), as well as the group intermunicipal hospital of Villeneuve-Saint-Georges (associated with the CHU of Créteil).
In a guide published in March 2022, the High Authority for Health recalls that these centers are primarily intended for « cas complexes ». In the event of symptoms, it recommends consulting their general practitioner, who can refer the patient to a Center of Competence for Tick-borne Diseases (list available on the websites of the Regional Health Agencies).
Information to know in the event of a tick bite can be found on the ameli.fr website.