Une piqûre peut vous handicaper à vie : la MALADIE DE LYME – Enquête – GD

Plongez dans l’enfer invisible de la maladie de Lyme, cette épidémie silencieuse qui bouleverse des milliers de vies à travers le monde.

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Dans cet épisode, découvrez comment une simple piqûre de tique peut déclencher des années de souffrances physiques et psychiques. À travers les témoignages poignants de patients comme Johanna et Judit, vous comprendrez pourquoi cette maladie est si difficile à diagnostiquer et pourquoi tant de malades se sentent abandonnés. Entre batailles médicales, errance diagnostique et silence des autorités sanitaires, suivez l’enquête sur l’une des pathologies les plus controversées et méconnues de notre époque.

“LA MALADIE DE LYME”
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#MaladieDeLyme #ScienceNow #ÉpidémieSilencieuse #SantéPublique #Tiques #Borrelia #ChronicIllness #Médecine #EnquêteScientifique

We could go, I don’t know,
fifteen years ago, maybe a summer without having one. That never happens. These are modern ventires. 50 cents a year, which I
take away, is the minimum. The bacteria is spreading
more and more among ticks. And so, when they bite,
they contaminate. The headaches, I think all my
neighbors heard my screams from the pain. For 16 years, doctors
told me: It’s all in your head. No, sir, you are not sick. It’s psychosomatic. Go see a psychologist
or a psychiatrist. Sir, you are crazy.
This is what we tell the sick people in concrete terms. It is the largest global epidemic
transmitted by a vector. Number one. There is a culprit, obviously,
in this story. And this one is invisible, or almost. There is only one small creature that carries
a great threat: the tic. This mite, barely a few millimeters long,
transmits a dramatic yet little-known disease:
boreliosis or Lyme disease. The Pyrenees are one of the
most affected regions in France. Here, breeders and mountain guides have
seen them proliferate in just a few years. Whether we’re hiking or even cycling,
where we go faster, they still manage to hang on. I don’t know if it’s during
breaks or during practice. But sometimes there are
tick nests. It happened to us once while hiking
that someone sat down in the grass during lunch
and got back up. He has maybe 200 or 300 ticks on him.
All year round. Even in winter, sometimes,
with the dog walking during the day on snowshoes, we were only on the snow. We come back at the end of the walk,
the dog has caught ticks. As we started the walk
on the snow, we stayed there. So it looks like it’s invulnerable. Invulnerable and camouflaged. Perched on the lookout at the top of tall
grass, the tick is a solitary hunter. It can wait for its prey to pass by
for several weeks. Its weapon is the rostrum, a sort of harpoon which digs into the skin of its victim up to the
blood vessel from which it feeds. His meal can last for several days. Engorged with blood, the creature can then
go from the size of a pinhead to that of a peanut. But
the little vampire is only really dangerous if it is
infected by bacteria. It is this association of evildoers
between the tic and the bacteria that spreads the terrible Lyme disease. She inoculates a bacteria
called Borelia. Its full name is
Borrelia Borreliorfferri. The inoculation is done at the skin level
and there is a redness that appears, but which is not constant,
approximately two times out of three, and often goes unnoticed. The person, their family,
the pharmacist or the doctor, from above, it’s useless,
it’s a small insect bite, and does not offer treatment. And if we do not treat,
the disease will evolve quietly, in a form that is first called
subacute, that is to say over a period of a few weeks, then chronic,
that is to say over a period of a few months to several years. And the disease can progress like this for 10
years, 20 years, 30 years or for the rest of your life if you are never treated. A few weeks of antibiotics taken
after the bite are enough to stop the infection. But if it is not treated in time,
it is a spiral. This bacteria is a little
time bomb. It can migrate to the heart,
arteries, joints or even the brain. It can lie dormant within us for years
and suddenly awaken when our immune system declines. This is the terrible experience that
Johanna Lefèvre had. For seven years,
his life has been punctuated by his visits to Professor Perronne,
the head of the infectious diseases department at Garches hospital. Have you had
any chest pains again? No.
You will try these pericans No. Maybe I’ll listen to
your heart again because… Okay.
Otherwise, there is no… For walking, there is no
muscle weakness, it is more fatigue. Paradoxically, the legs are better,
it’s the arms… In Johanna’s case, the bacteria transmitted
by the tic has notably reached the heart and the central nervous system. I went to pick lily of the valley
with my children in May 2006. I ended up with a tic
that I didn’t see at first. A tiny tic. I only saw her after two
days when she was full of blood. And I went to see my doctor. He told me it was an allergy
to insect bites and that it was a seasonal infection. And since my throat was sore,
he gave me some lozenges to suck on. Johanna’s case is quite typical
because she was a woman who was in great shape, who was always dynamic,
sporty, who had lots of projects, her children, her job. And after a walk in the woods,
his life changes completely. And it’s true that at the beginning,
it’s difficult because a little tic sting like that doesn’t seem bad. Besides, I found in the file,
she had left me the photo of her migrant heir on her thigh. And it’s true that at first,
the doctor said to him: Oh, it’s nothing. And then, we see that very quickly,
signs appeared such as great fatigue, headaches,
joint pain, weakness when walking. And
after about two months, she saw one of the assistants in the department because she
couldn’t take it anymore, she did n’t understand what was happening. Johanna is a teacher. His passion is teaching
his students to read and write. But Lyme disease turned her life upside down
and forced her to make a constant effort. She lost much
of her immediate memory. So, to cope,
she created rituals for herself. I always have to put my medication in front of my eyes, so in the middle
of the table most of the time. So, I have to always put
things in front of me or write them down, put post-its so I don’t forget. But well,
it’s always very complicated because even the post-its, I forget them or I don’t
pay attention. I have serious problems concentrating. I work a lot
with my smartphone now. This is my 50 euro brain. I work with my phone for all gestures, all the gestures of daily life.
To memorize them? Yes, actually,
I photograph just about everything. My students know that I walk by with my
phone and everything that’s on the board, everything that’s in the classroom,
everything they do, I take pictures of. And I take pictures
to remember things. Even in stores, when I pass by,
when I have to think about something, I take pictures and write it down. I have post-it notes on my phone
that pop up all the time. Names of students,
because I forget that too. What I have to do, I I had to make
the notebook models for my students. Come on, Maggie. The disease is invisible,
but the battle is constant. On days when Johanna is not teaching,
the bed is her ally. Both an office, living room and living space. Lying down on weekends is
the only way she can stay fit on school days. But before his illness was identified,
some doctors had concluded a curious diagnosis. I made an appointment with a professor
of infectious diseases who, after a three-minute interview,
told me that I was suffering from fenientism and that it was
the occupational disease of teachers and that he too, from time to time,
felt like staying in bed. Since then, Johanna has learned to identify
the symptoms of Lyme disease and their strange comings and goings. How can I understand that one day
my face hurts so much it’s almost unbearable,
but the next day my face does n’t hurt at all. But on the other hand,
I’m so tired that I can’t move from bed
because my heart is not well. And three days later,
my arm suddenly swells up and it suddenly becomes
tendonitis or inflammation in the joint. So, for those around you, it’s very, very, very difficult to understand and manage. Other patients have
lived in ignorance of their illness for a very long time. Judith Alberta has no memory
of being bitten by a tick. An airline pilot, then captain,
she sometimes suffered from occasional fatigue at the beginning of her career,
but nothing to worry about for a woman who flies at 20,000 feet. And then one day
the disease woke up. It was much later,
when I joined Air France, when I worked
as an instructor, that I really had problems,
pain, especially in my joints, especially in my back, in my
neck, and vision problems. I started having
speech problems and it really caused big problems in my
work, in my training. So much so that after a
number of years, I was forced to stop working and
simply leave the company. I couldn’t work anymore. It took him years to
put a name to the illness that suited him. Bounced from specialist to specialist,
Lyme disease was never mentioned to him. 37 medical consultations in ten months,
between June 2008 and April 2009. Nothing.
Madam, you have nothing. You have nothing. So, I went through MRIs,
scans, scintigraphies, cystoscopies, biology. We looked for everything, but
found nothing. Madam, listen, go see a psychiatrist. It took on proportions that no
doctor could understand. They didn’t understand what was happening. A total fog and
infernal pains, burning in the muscles, in the stomach, in the lungs,
in the forehead, in the eyes, burning, burning, burning,
but a pain, a permanent pain that meant that there were times,
winters when I said to myself: But this is not possible, I am not going to
continue like this. I can’t imagine going through
another year like this. This is not possible. This medical wandering is the ordeal
inflicted on many patients. In addition to suffering physically,
the patient suffers from not being recognized. This is the astonishing paradox
of Lyme disease. Objectively common,
it remains unknown to doctors and poorly diagnosed. Partly because in France,
specialists in this pathology can be counted on the fingers of one hand. To
find a doctor who specializes exclusively in Lyme disease,
one can go to the United States, to the state of New York. Dr. Horowitz L’Ice
opened a specialized medical center there. Around a hundred new patients
rush there every month. The
doctor is one of the few who can effectively diagnose this disease
with its many different forms, because he has developed a method. What symptoms are you still suffering from? Lyme disease is
a multisystem disease. So what I do
is I take the patient’s history and I give them
a questionnaire with 38 questions about a lot of different symptoms. And it’s when I see that they have several
of these symptoms combined that I start to wonder. Not just joint pain
or exhaustion, but also if they sweat during the day,
at night, if they have chills, a bit like malaria. If they have moments of exhaustion
that come and go, muscle pain that
moves throughout the body. One day, one place,
the next day, another. If they have tingling and burning
that comes and goes and problems with memory, concentration, then they
are young and shouldn’t have it. If they have all these symptoms at once,
and they say: I am hyper sensitive to light, to noise, I ca
n’t fall asleep at night, I have insomnia, I am anxious, depressed. And all this for no reason. If all of these symptoms combined are
present, then that is when I suspect donkey disease. I am truly grateful to them.
Really. Because when I got here,
I looked horrible. I was pale. My eyes were all red. It was 30 degrees outside. It was summer, yet I had
four layers of jacket and sweater. I was completely frozen. It’s been a hard road. And that’s when her cognitive problems
worsened and she began to experience memory loss. She no longer recognized
the time that was passing. She didn’t recognize my mother. She didn’t know who I was anymore. The young patient’s improvement
is partly due to a very complex combination of treatments. But even after 20 years of practice,
the American doctor and his team are still feeling their way. Patients are not
immune to relapses. Sometimes you see
a patient arrive for the first time. He has a lot of difficulty speaking. He is so paralyzed in his face that he
cannot speak to you. And then, when he comes back after six months
of treatment, he is able to engage in a real conversation. Now everything is so much better.
It’s a pleasure. The problem is that sometimes,
six months later, it starts again. And there, again, some have
great difficulty speaking or walking. If
this curious disease interests Americans, it is because it has been
feared here for a very long time. The northeast of the country is one
of the most affected regions in the world. For centuries, Indians avoided
crossing certain valleys in spring and fall, a
time of heightened morality. Those affected could
be suffering from an incurable illness. In 1972, it was again in the United States,
in the small town of Lime, in the depths of Connecticut,
that a mysterious epidemic of arthritis struck young children. No one thought of it as a
bacterial disease, because at the time, it was believed that antibiotics
had kept all infections away. It was not until 1982
that the American scientist, Willy Borcke-Dorfer,
established the link between ICT and the transmission of the
Borelia bacteria to humans. Borelia is not
just any bacteria. She is intelligent. It changes appearance,
moves very quickly and infiltrates all tissues and bones. This small spiral is a
formidable enemy for researchers. At the University of New Haven
in Connecticut, Professor Eva Sapie
heads a laboratory dedicated to the study of borrelia and its mysteries. What is surprising
is that Dr. Borgdauffer discovered borrelia almost 30 years ago. And here we are still with the same
problems treating these Lyme patients and eliminating borelias. So, either we haven’t been asking the right
questions for 30 years, or the borelia is much too clever. And we really need to know it better
to eradicate it completely. Borelia can take
many forms. The three most common are the spirochet,
the cystic form and the biofilm. Biofilm is a very special form. It’s like an abrivisc
that the borelia makes for itself. When attacked by the
immune system or antimicrobials, the bacteria can hide there. It is an extremely virulent bacteria. And the problem is, she knows how to
change her appearance, how to hide in the body. It enters the cells
where it hides. It forms blisters, bits
of DNA like theirs that wander around. And the immune system
rushes to it. But it will hide in cells
that become a target for your immune system and
thus trigger an autoimmune reaction. And it’s found in places where
antibiotics don’t penetrate well. It seeps deep
into the joints, into the eyes, into the deep tissues of the brain. Antibiotics do not penetrate
these tissues well and cannot eliminate it. This bacteria is
extremely intelligent. It has more DNA than
any bacteria on the planet. A
bacterium so intelligent that, with the complicity of the ticks
that carry it, it continues its colonization with impunity. In the United States,
the figures published by health authorities in 2013 were ten
times higher than in 2012. There are reportedly more
than 300,000 new cases per year in the country. It’s an epidemic that is spreading. I was in Europe, in France,
Germany, England and Belgium. We have
a global epidemic before us. Two or three years ago,
I was in China. They have a Lyme problem. So this is a global problem
that we need to address. The epidemic, which developed from
two main foci, one in the United States and a second
in Eastern Europe, spread to Asia. Today,
new outbreaks and new strains of Borelia are constantly being discovered around the world. In Africa,
boreliosis is the most widespread infectious disease after malaria. A team of French researchers,
led by Dr. L’Unecôte d’Apèze, North and West Africa,
has highlighted the importance of the disease in around ten countries in
North and West Africa. We are here in Senegal,
in the dispensary in the village of Dielmo, south of Dakar. For more than 20 years,
we have studied malaria in this region, but at the same time,
we have been interested in all the other pathologies. And the number one pathology after
malaria in the neighboring village of Dielmo was precisely boreliosis,
with some years, up to a quarter of the
village’s population developing the disease. And indeed, it is almost always
confused with malaria, often even confused with
drug-resistant malaria, when it is something completely different. So it is a boreliosis which is,
as we said, bacterial, but extremely widespread
in a whole part of Africa. Alright.
All right. Thanks to Dr. Trape’s teams, the
entire village became aware of the threat posed by this disease. The village chief said that he How does
she understand boreliosis? For him, boreliosis
is like malaria. But it’s even more serious than malaria. Because if you have borreliosis,
you have a strong pride. And at least you feel like
your bones are breaking inside. Health monitoring combined with
good prevention makes it possible to control the infection as soon as it appears. Every day,
we go to each concession to see who is sick, who is not sick
and, for example, systematically take their temperature, take
the children’s temperature. And whenever we observe
symptoms, whatever they may be, on the one hand, fill out a questionnaire
and on the other hand, carry out biological tests. To stop the spread
of the disease, the doctor has his own method. He sets traps. Not tick traps,
but rodent traps. Because if the tick is only the vehicle
used for the crime, the real culprit is the rodents. These animals are the primary
reservoirs of the Borelia bacteria. They do not develop the disease,
but they transmit it. Just one of these small mammals can
carry nearly a hundred ticks and contaminate them. And when
the tick later feeds on another vertebrate like us, it passes
the infection on to us. There we captured 11 specimens
last night belonging to four species. Here we see a gerbilliscus,
an ervicantis, and we have two different species of mastomis. So we’re going to take
blood samples from them and then other samples for further studies
in the laboratory, to see if they’re infected with borelia. And these rodents, armed with their cargo
of ticks, even infiltrate homes. The little girl that Doctor Trape comes to see
was probably contaminated in her room. This is the big one, huh?
This is the big one. This is the big one. Is that you?
There you go, that’s fine. No, are you okay? Oh my, she’s crying, she’s intimidated. Apparently, everything is back to normal. She had 10 days of
antibiotic treatment and normally… There, normally,
she’s cured now. We will see if there are
rodent burrows in the rooms in particular, in the houses,
because rodents are omnipresent in the fields, in the forest,
but also in the houses, as there are food reserves. This is the bed. So. Yes, there is an active burrow there,
probably a mastodon burrow, dug under the floor of the hut,
there are definitely ticks inside. The person sleeping in this bed had
bubbling last week. And that is most certainly the explanation. The mastomy burrow put,
which is right next to the bed. So the ticks probably got out
of bed and were attracted to the sleeper and transmitted the disease to him. Since about 30 to 40 percent of
ticks are infected in this region. There, it’s clear.
You can go. The rodent was captured along with its
conspecifics, but the ticks remained at the bottom of the burrow. It’s the vacuum cleaner that becomes taboo. One, two, three, four, five.
Yes, there, here. So. There you go, there are some who are quite full. It’s tick harvest time. They will suffer the same fate
as their rodent friends. Dr. Trappe will test
their level of contamination. The world is far from
understanding the danger posed by this spreading disease. And Europe is not immune. Partly because the forests,
more fragmented than before, have seen the predators
of these small contaminated rodents disappear. More rodents mean more
ticks, and therefore more chances of the bacteria spreading. The infernal trio of rodents, ticks
and bacteria has a boulevard in front of him. The bacteria responsible for
Lyme disease are usually carried by small forest rodents. So, you should know that roughly
10% of field mice are reserved for the reservoir. 20, 30% maximum of voles
are reservoirs. And when it comes to chipmunks,
between 30 and 70% of chipmunks can be reservoirs of these bacteria. The chipmunk is him. A charming little squirrel
who came from Siberia. How did it end up
in our European forests? Because it is sold in pet stores. With its
Walt Disney-style plush look, it appeals to children who want to keep it as
a pet. But the squirrel has
sharp teeth and uses them to bite. Many foster families
solve the problem by releasing him back into the wild. The chipmunk is home to a large number of ticks. It can host several
hundred ticks. And it has been estimated that about
chipmunks infect eight times more ticks in the environment than the two
rodents, the vole and the field mouse. And there, the basis, prevention would require
that we start by no longer selling these animals in pet stores in such a
way that we eliminate or at least minimize the number
of individuals that are released. While few European countries are
aware of the risk of Lyme disease, Germany has
taken the threat seriously. Tick ​​control is
displayed here in all pharmacies. But yes, we know that there is a problem
that we can have in catching ticks. We know we have to remove them
as soon as we see them. Maybe it’s There’s
already a bit of an epidemic. We have quite a few people who catch
illnesses because of this. We are in a region, there too,
on the banks of the Rhine, also the Black Fort, opposite the Vosges. We have a lot of ticks that
transmit diseases, especially boreliosis or Lyme disease. No country in the world
currently records the number of patients with boreliosis. But in Germany, we have figures
that indicate epidemic proportions. Since every year the number
of sick people increases by 10 to 15 percent. According to estimates,
one to two million people in Germany, out of 80 million
inhabitants, are affected, or one in 80. On the other side of the Rhine, in France, there is no official talk of an epidemic. On the contrary. Lyme disease remains
classified as a rare disease. For this Alsatian general practitioner,
this affair is simply medical denial. It is not a rare disease
because in the general medical community, we
can find hundreds of cases of it. So, it is no longer a rare disease. Now, when we look at
the German figures and the French figures, we can ask ourselves some questions. Opposite us, a few kilometers away,
they have 200 times more than at home. Of course Lorin
is a good border. She stopped Chernobyl,
everyone knows that. She also now stops
Lyme disease. So why, in France, are
we not taking stock of the progression of this disease? It’s hard to believe,
but according to Professor Perronne, in France,
it is the official screening system that is responsible for the underestimation of
the number of sick people. The whole problem with this disease
is that it was declared a rare disease 30 years ago. And so, all the serological tests
carried out to diagnose it are done in such a way that we can never
detect more than 5% of HIV-positive people in a given population. It’s like putting a ceiling on it. There is a ceiling, exactly. That’s why, moreover,
when you do… The same person, I experienced it
in my patients, with the same test, had tests done in different cities
in France almost on the same day or the same week to get
different results. Otherwise, as mentioned,
patients who test negative in one region
may test positive in another, as the sensitivity of the screening test
differs from region to region. Added to these questions is
scientific uncertainty. The very reliability of the screening test is
now widely questioned. This screening test is
not very It’s terrible. It has been published in the
medical literature. It has a sensitivity of 55.56%. These are figures
from John Hopkins University. A sensitivity of 55%. It’s like tossing a coin. In the United States,
patients are beginning to be informed about the lack of effectiveness of this test. But here, it’s radio silence. Typically,
for most infections, a second, more specific test is performed
to confirm the result of the first, but not for Lyme disease. We have tests that are not
100% satisfactory at the moment. What we are asking for
is for people to have undeniable authority to say: We
have this, we have this, we have this. There is a goal. This is a controversial subject. This is a controversial topic. So, we are forced to stay at our
small level in our small laboratories. We do what we think is best,
but we don’t have a judge of the peace, we don’t really have a consensus to
know calmly what we can do. What we need is an informed consensus
, not a consensus of denial. Deliberate strategy, lack of
political will or simple inaction. The least that can be said
is that the health authorities are maintaining the vagueness. And the scientific controversy does
not end there. The medical world is not unanimous on the form of the disease itself
. Lym. Can it become chronic? Is it scalable? Should the treatment be
one-off or long-term? Officially, in France,
the National Reference Center for Lyme Disease recommends three
weeks of the antibiotic, possibly renewable only once. For
those who follow the official doctrine, the chronic form of the disease
does not exist. Today, we cannot accept
that Lyme disease is considered a chronic illness. There may be some after-effects,
probably articular, even neurological, it’s possible,
but not chronic diseases. In other words, after a certain time,
the microbe is dead and that’s it. On the other hand, the microbe may have caused some
damage and this damage can be given, whatever it is. At least that
‘s how I see things. According to our New York expert,
however, it’s the opposite. He believes that
one-off treatment does not always work. The battle against the bacteria must
therefore sometimes be fought over the very long term. There are many diseases in medicine. Leprosy, for example,
which has to be treated for a long time. So, it is not new in medicine
to prescribe antibiotics for a long period of time. When I give a treatment,
I don’t usually give just one antibiotic, I combine them. As with tuberculosis,
if we understand the biology of the bacteria, we must
combine treatments. This is how I get good results. All right. If the disease is so resistant,
it may also be because borrelia has accomplices. It is often a battalion of
pathogens that ICT transmits. And it is this cocktail which,
according to some specialists, is at the origin of the
persistence of symptoms. Ticks are small syringes
with legs that are capable of inoculating a huge number of microbes. I remember a scientific article
that talked about the menagerie of tics, so many
bacteria, parasites and viruses had been identified. Fortunately, not all of them are harmful to humans
or animals, but among all the microbes found
in ticks, some ticks have a percentage
of microbes that can be harmful. The rates of coinfections found
in this disease are extremely high.
It’s incredible. It was found that, along
with Borelia, the tick also transmitted a host of bacteria or parasites such as
mycoplasmas or filarial nematomas. But this idea is still so
new that it is difficult to get accepted. After
many years of suffering that officially had no name,
Judith finally benefited from complex and exceptional treatment. I started flying again
in January 2011, after the first three or four months of treatment,
which was initially an alternative treatment, then allopathic treatment,
with extremely high doses of antibiotics . And which really allowed me to take
a step forward, to find my spirit again, to find tenfold energy,
a state, an extraordinary health allowing me to take the wheel again. Airnav, runway 32 left. If not possible, you will see… If Judith has gone back into the air,
the illness still weighs on Johanna’s shoulders. After seven months of treatment,
I had five minutes where I said to myself: I feel better. It died down after that,
but I had five minutes. And the next day there were ten. And the next day, there were 10 hours. There was one o’clock, ten o’clock. And little by little, things
started to get better. But the first seven months were
just a never-ending descent into hell. And
all the time juggling with treatments,
knowing what decides, do we increase,
do we decrease, do we remove a drug or add another one. So it was lace. But it’s fine now. But I still take antibiotics. Science’s fight against
Lyme disease has only just begun. Researchers around the world
are working on new avenues. Screening, vaccines, stem cells,
genetic engineering, plant-based treatment:
an all-out offensive against a multifaceted disease.
Informed. But in France,
research is still in its infancy. The problem
is that it is very difficult to conduct research,
at least clinical research, on Lyme disease,
because there is no funding. For the moment,
the pharmaceutical industry is not interested because we use
old antibiotics like penicillin or tetracyclines
which are no longer worth anything, which are generic. And then, from the industry’s perspective,
Lyme remains a rare disease, a source of controversy, so it doesn’t see a
very good return on investment. So, we’re going around in circles a little bit
because when we say: But you have to progress through science and we want to
do it, we don’t have the funding to do it. I believe that the priority would be
to obtain funding to advance research. While waiting for the miracle cure, Judith, the airline pilot, ended up fighting with her own weapons. She first published a book
that recounts her long medical journey. And then, two years ago,
she founded L’âme sans frontières with other patients and doctors. Its objective: to defend what medicine
claims to ignore and to push the authorities to finally become aware of the epidemic. Hello, yes, good morning. And the least we can say
is that his initiative has had an impact. I say Albertin. In 18 months, I handled about 18,000
emails and 18,000 phone calls. It is often a very
significant distress that people share with me. We have the ability to direct
people to doctors who are competent,
doctors who are trained in new approaches to treating
Lyme disease. We have the opportunity, of course,
to listen to them and put them in touch with other members of the association. We also have the possibility, if necessary,
to direct them to a lawyer who can help them on the legal level
in the context of nests marked with situations of job loss or
dismissal. Once a year, in Strasbourg,
Lyme Sans Frontières organizes meeting days
which allow patients and doctors to be informed
about current research. Patient associations like
Judith’s are campaigning in particular for long-term treatments to be authorized in France
. When I had my three weeks
of antibiotics in the hospital, I was discharged. After a week,
I continued the treatment at home, but after a week,
when I left, logically, I asked what the follow-up was. I was told there weren’t any. And I found that very surprising. After almost two hours
of travel, I’m no longer surprised by anything. But it’s still worrying
because it means that if we don’t come out of this treatment well,
we’re a bit abandoned. Unfortunately, I believe that the situation
is complicated enough to allow us to consider going far away,
even if it means getting treatment abroad. To obtain expert opinions,
patient associations do not hesitate to bring them from far away. Our
New York specialist is here. He came to say loud and clear
that this disease with its 1,000 symptoms requires a
completely new medical approach. People who come
to me who are sick say: I saw 20 doctors,
I’m still sick, I don’t know what to do. I’ll show you,
it’s almost like someone coming to a doctor, saying: Doctor,
I have pain in my feet. There are 16 nails in the feet. And the doctor pulls two nails. And then the patient comes back, he says:
I still have pain in my feet. And the doctor said:
I pulled out nails. There are still 14 other
nails in the feet. I’ll show you. The speakers who came
brought, I believe, a vision, already a positive vision,
that is to say that we can perhaps not cure Lyme,
but in any case live very well with Lyme and with convincing,
factual elements, which are divergent, certainly from what is said consensually
in France, but information that they will be able to exploit. So, first of all, we’re going to restrict the funnel
in which they see all this information swirling around and with
which they can’t do anything. The associations also help patients
fight legally to have their illness recognized. Lyme disease often prevents
those who suffer from it from having a professional life. We must therefore do everything possible to ensure that
the pain is not compounded by major financial difficulties. I was on sick leave for three years
and from one day to the next, I saw a medical advisor who
told me that I was 100% fit to work, who did not take my symptoms into account,
despite the fact that I gave him German analyses,
French documents which clearly proved that I was
physically deficient, chronic fatigue, and the neurologist who wrote a letter. He received me for, let’s say, five minutes. They told me: Politeness was not there
and sir, you will go back to work. So, since that day,
no more daily allowances. So, I live without finances. Patients find themselves in a situation
of abandonment, abandoned by medicine, abandoned by social security funds
which tend to say that at a certain date, at a given time,
estimated by a medical advisor from a fund, they are able to resume
professional activity, when this is not the case,
because they are affected by this illness which is chronic and disabling. So, we are in
social security type disputes, in the Social Security Court
, where we are fighting to obtain
recognition of a situation of disability,
of incapacity to resume professional activity, to obtain the payment
of daily allowance, therefore compensation,
which will allow these people to receive treatment. Defend what AIME has randomly struck. Judith has made it the fight of her life,
but she is not the only one to take to the streets. In France, in Europe and even throughout the world, protests are being organized. Soul detected, city saved. Soul detected, city saved. In 2013, the first World Lyme
Disease Awareness Day
brought together tens of thousands of protesters from Vancouver
to Warsaw and from Melbourne to Oslo. If the disease is multifaceted, the fight must be too. Geneviève Perello founded the
Borelia Network with other sufferers. Its objective: to try to shed more light
on the contradictory flow of information circulating
about Lyme disease. Geneviève suffers from a
neurological form of the disease: neuroboreliosis. Paralysis, speech problems,
she fights in her own way with the strength she has left. Among themselves, the sick
call themselves neurobes. We are all neurobeasts
in the boreliosis network and we are not capable of long-term work on distance effort. Finally, the long term
would be almost an hour. Because we have to fight. And that’s
why we said to ourselves: We’re going to take it slowly,
but we’re going to manage to get this across. That is to say, we don’t have the strength
to get this across any other way. You can’t hit the table. Sometimes you just can’t move. So it’s in front of her computer that she
tries to make things happen. First of all,
so that the surrounding mountains are
finally informed about the danger of ticks. His region, the Pyrenees,
is one of the French areas where the disease is most prevalent. There is not, at least,
the information to raise the minimum alarm. There is not. Just like in pharmacies,
in nature recreation areas. There is nothing to be found that addresses either
the possible infestations with panels, for example, or the dangers that this poses. Because it bothers hoteliers,
restaurateurs, everyone who has activities in the mountains. It is still very difficult,
for example, for a mayor, in front of his town,
to display a small sign saying: Be careful, there are ticks here. He’ll say: But the baker will
never come and set up shop because we won’t have any. If they want…
Anyway. It’s
really a big problem because if we don’t want to speak out and if we put up with it,
how far will we go? Why isn’t there information
in all pharmacies? Why is there no prevention
that comes down from the State and is carried out throughout the territory,
with loudspeakers, with large signs, in all medical offices,
with documentation. Why is there no
systematic training for all doctors in the country? Since we know that ticks are
everywhere. In French forests,
unlike in many countries around the world, there is no
information on ticks. The walker’s charter,
prohibited behaviors, and fire risks are written in black and white. But nothing is said about the small
mite carrying bacteria. Here is one of the only prevention signs
in France. In the Seignard forest, near Paris. It was Johanna who had it posed
with the support of the mayor of her town. If I had had this blister pack before I got
sick, I wouldn’t be sick today because I did
n’t know it existed. When I was bitten by the tick,
I never heard of Lyme disease. I didn’t know this existed. And the time it took us to find,
that it took me, that it took the doctors to find, probably would have been
much shorter and I would have been given treatment very quickly and I would
probably have been healthy. So that’s what was missing. 3 million visitors pass through
this forest every year. Apart from the town of Hyères,
the neighbouring municipalities did not consider it necessary to inform walkers
of the risk of tick contamination. The precautions to take
are, however, very simple. The day I got my injection was May 1st, and
it was very cold. I was dressed in jeans
and covered shoes. The tick still climbed
up to my waist by my ankle. So, simply,
putting the pants in the sock protects almost
completely from tick bites. Pull up your socks,
avoid tall grass, wear covering clothing,
use repellents, examine yourself carefully when returning
from a walk and, if necessary, remove the tick with tweezers or a
tick remover, but never with your fingers. These are
paltry gestures when we know the tragedy that
Lyme disease represents today. Essential gestures, the pathology
and mechanisms of which remain a mystery. Is Lyme disease
really still a rare disease? Why impose a screening test
that is not considered reliable? Why are
long-term treatments not allowed if the disease, as some claim,
can become scientifically chronic? And finally, in the face of so much
scientific uncertainty, why is research so poorly funded? This story is like a
modern medical thriller. Who benefits from the
disease being so neglected? Who benefits from people
not being treated? Some say it could
be the pharmaceutical industry. By keeping people sick,
it could continue to treat them over the longer term. But that seems a bit simplistic to me. I don’t know if that’s really the reason
or if it’s just a form of inertia. I don’t know why this situation
exists in France to this extent, at this level.
I can’t explain it. Are these issues
of conflict of interest? Is it ego issues? Is it about
power? I don’t know. I don’t have the answer,
but the situation is really much more difficult in France
than in other countries. What is needed
are real specialized centers for these patients,
where doctors would be specifically trained, like
cardiologists or neurologists. We need specialists
in these chronic diseases. Research is still in its
early stages, but the threat of Lyme disease is now pressing. So it is a race that
science and health authorities are facing. A race that can be won if
everyone finally agrees to recognize the danger.