the courage of Léane, 16 years old, suffering from Lyme disease

For two years, Léane has been fighting the disease. Suffering from Lyme disease, the teenager had to travel to Germany for treatment. Today, she is still not cured.

Every day, Léane suffers. Suffering from Lyme disease, an illness transmitted by ticks, the 16-year-old teenager has had to put her life on hold for two years. “It prevents me from doing the activities I did before, it’s a handicap in everyday life,” testifies this teenager from Doubs who was forced to stop playing handball when the illness broke out.

As a reminder, Lyme disease, also called Lyme borreliosis, is a bacterial infection transmitted by the bite of an infected tick. One of its first symptoms is the presence of erythema migrans (red plaque) but this is not always the case. It is accompanied by flu syndrome, fatigue, joint and muscle pain. Without treatment, neurological, joint, cardiac and ophthalmological complications are possible.

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For a long time, the diagnosis was not made. At 14, Léane began to have health problems. “They were mainly headaches which very quickly became daily with no treatment which relieved it,” testifies Valérie, her mother. Subsequently, the young girl’s condition worsened: discomfort, increasingly prolonged loss of consciousness, loss of strength in the legs, mini-paralysis and severe fatigue. “So we started to do investigations. We went to the treating doctor who quickly referred us to specialists,” says Valérie, who works as a nurse.

According to her, none of the health professionals were able to explain the symptoms. “And the more time passed, the more the symptoms increased. New ones appeared with more and more regular memory loss, major problems with concentration and speech,” she remembers. For two years, Léane and her family went through a “medical desert” with hospitalizations and visits to the emergency room.

It was very difficult. We feel so helpless in the face of our child’s suffering. It’s terrible, apart from being there, there’s nothing more we can do.

Valérie, mother of Léane suffering from Lyme disease

“Little by little, we are talking more and more about Lyme disease. We had this intuition, but the doctors didn’t believe it”. Léane was negative in the only test that exists in France to detect this disease.

For the last symptom, she found herself paralyzed from the legs down. He was told that all the tests were negative, that it was psychological and that he needed to see a psychiatrist.

Valérie, mother of Léane suffering from Lyme disease

After this event, the family began to look towards Germany. “We contacted France Lyme and they directed us to a clinic in Augsburg in February 2024,” she explains. From the first consultation, the diagnosis was made: Léane was indeed suffering from Lyme disease. “The doctor told us that it was a chronic form of the disease”.

The test that detects Lyme disease in France detects the antibodies, but not the bacteria. It only detects about half of the people actually infected according to France Lyme. Borrelia, the bacteria responsible for Lyme disease, mutates regularly. “So it hides in the cells and produces a kind of shell around it. Thousands of people don’t keep any antibodies.” underlines Valérie.

So that Léane can be treated in Germany, her family has already had to pay 20,000 euros. To help the family financially, friends opened an online fundraiser. When the teenager began treatment at the end of February 2024, her condition worsened. “It’s a good sign, because this bacteria won’t let itself be done,” specifies his mother.

Léane is not recognized as sick in France, because they do not recognize German tests.

Valérie, mother of Léane suffering from Lyme disease

During the month of August 2024, the teenager is hospitalized for more intensive treatments. “Unfortunately, it hasn’t gotten any better,” his mother whispers. Léane still suffers from generalized pain. Her right hand is temporarily paralyzed, which sometimes prevents her from writing and she has difficulty walking. Currently, in her first year at a vocational high school, Léane misses one day of classes per week due to fatigue. “But she manages to maintain an academic level despite everything. She impresses us,” smiles Valérie.

Currently, the high school student has to swallow 44 tablets per day. In Germany, doctors told him his treatment would last about two years. “It’s approximate, it could be longer”, says Valérie.

According to Public Health France, over the period 2009-2020, between 25,000 and 68,530 cases of Lyme borreliosis were diagnosed each year. Since 2009, the trend has been towards an increase in the estimated annual number of cases. And these figures are probably underestimated. Reporting a case requires the presence of skin symptoms which are only present in 30 to 50% of cases. The actual number of cases is believed to be two to three times higher than official estimates.

There is a large regional disparity in the incidence of Lyme disease in France. “The tick is very present in Haut-Doubs”, notes Annie Juillard-Dehos, Franche-Comté representative of the France Lyme association. Generally speaking, ticks are more present in certain regions of the north-east of France and the south-west.

According to a study by the National Research Institute for Agriculture, Food and the Environment, Inrae, published on April 27, 2021, Burgundy-Franche-Comté is the region most affected by the presence of ticks carrying pathogens. 43% of ticks analyzed in the region were in fact carrying a pathogen. The west of France would be less affected by the phenomenon. In Brittany, only 18% of ticks analyzed carry pathogens. This could be explained by the difference in climate.

If you have been bitten by a tick and you experience characteristic symptoms (rash, fever, joint pain, headache), it is crucial to go to the doctor. “He will prescribe antibiotics in large doses,” informs Annie Juillard-Dehos. Early diagnosis and treatment are important to avoid potential complications.

Some tips to protect yourself from ticks:

Cover yourself : preferably wear light-colored clothing with long sleeves, high socks, pants to slip into the socks, sneakers and a hat.

Use repellents : The repellent must be adapted to your skin. It can be applied to clothing following the instructions in the product instructions.

Avoid tall grass and dead leaves : do not sit or lie down directly on the ground, avoid shrubs, stay in the center of the hiking trails.

S’examiner : Check that ticks are not present in your clothes, body or hair.

Remove the tick with a tick remover without crushing it, then disinfect it and note the date of the bite in your health record.

Monitor the area : if redness appears around the stung area, consult your doctor who will prescribe appropriate treatment.