When he arrived at Lannemezan hospital in 2011, Dr. Raouf Ghozzi was a specialist in internal medicine. He had heard of Lyme disease before. But quite a distance, frankly. It’s the time when it’s still little known. Misdiagnosed. One day, Alain Baqué, then director of Lannemezan hospital, received a phone call from an association mobilized against Lyme: dozens of patients complained of medical wandering and were persuaded to share the same evil. An “imaginary evil” for many specialists who refer them to psychiatrists. Doctor Ghozzi, trained in infectious and rare diseases, takes up the file and becomes head of a specialized service at the hospital which has just obtained recognition as a “center of competence” (see opposite).
“My first patients were distraught, the diagnoses were not good, after consulting neurologists, rheumatologists, pain centers, the symptoms persisted, they were in distress,” he said. At Lannemezan hospital, they are knocking on the right door. Doctor Ghozzi examines them, looking for a red spot in the shape of a halo on the body, characteristic of a tick bite. The patients continue to recite the list of symptoms: fatigue, headache, joint pain, fever, visual disturbances … For the doctor no doubt, it is Lyme who acts in silence. The only solution at the moment: prescribe one or more months of antibiotics. But Raouf Ghozzi quickly realizes that almost 10% of patients do not respond to the antibiotics administered. “Complex cases” for which the practitioner has no recourse.
If the disease is poorly treated it can lead to disability, heart problems and death. “The research started too late, we are still too bad in terms of understanding the pathophysiology,” he summarizes. A year and a half ago, a patient of Marseilles origin sought the doctor. The 45-year-old does not understand: he has been diagnosed with multiple sclerosis but the treatment administered has no effect. The doctor makes a new diagnosis: it’s Lyme disease. “We are faced with a devious and silent illness which can plunge patients into great moral distress: they do not feel understood and not considered,” explains Raouf Ghozzi. This distress sometimes pushes some patients to suicide.
20-year-old patient killed himself
Last year, a young man with Lyme disease from Tournay, near Lannemzan, died. “He suffered from convulsions, discomfort, lost vision in his left eye and spent five days in a coma,” said the doctor. He is accused of being hysterical and hypochondriac. The ordeal lasts five years. Up to the door of Doctor Ghozzi’s office, who put him on antibiotic therapy. Despite a lull, the symptoms returned until January 31, 2019 when the 20-year-old finally killed himself.
“He was a big guy of 2 meters and 110 kg. He lost 20 kg then he took them back. Some mornings he could not get up any more. The morning when he died, he could not shave”, said the young man’s mother.
In the doctor’s office, there’s not enough room for patients. While he gave 10 consultations per week in 2011 and 40 consultations per week the following year, he now follows between 500 and 600 patients per year who come from all over France and Spain. The specialist refuses to take on new patients due to lack of places in his agenda.
Its mission is to make the voices of the victims of this silent disease heard. He participated in a working group on the subject in 2012 for the High Council for Public Health and in the report of the High Health Authority in 2018 on the diagnosis of the disease, led by Marisol Touraine, then Minister of Health. The Valneva company, near Nantes, is still working on a vaccine. The way is still long. Patients know this only too well. But they also know today that they are no longer “imaginary patients”.
Four centers in Occitania
Lannemezan Hospital obtained the Competence Center for Tick-borne Vector Disease (CCMVT) certification issued by the Regional Health Agency on Thursday 2 January. This is essentially symbolic recognition because the establishment will not receive funding for this. In France, only five reference centers which have a research vocation benefit from a budget of 300,000 euros. Doctor Ghozzi had applied but the file was not retained for the Lannemezan service to be a reference center. In Occitania, there are now four competence centers: the Montpellier University Hospital Center, that of Nimes, the Hospital Center of Lannemezan and that of Perpignan.
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