Posted on 12-04-2015 at 5:59 p.m. - Edited on 13-04-2015 at 11:16
Reading time Reading time: 4 minutes
Interview by Rozenn The Carboulec.
Christian Perronne
Infectious disease
Young Rock singer Avril Lavigne recently announced that she was suffering
from Lyme disease. Bedridden for five months, she said she "felt she was
going to die." What is this disease, mainly transmitted by tick bites? An
update with Christian Perronne, Head of Infectious Diseases at the
University Hospital Raymond Poincare in Garches (Paris-Ouest-France).
Lyme disease is mainly transmitted through tick bites (D.COLE / SIPA)
Lyme disease was described for the first time a little more than 30 years
in the Lyme area of the United States (Connecticut).
It is also known as "Lyme borreliosis" since the cause is a bacterium of
the family of Borrelia. It had already been studied in the past century,
and it is thought that the disease – or related diseases - have ancient
origins. The genome of Ötzi, the famous "Ice Man" who was found mummified
in 1991 was indeed full of Borrelia.
1st phase: a red patch around the bite
Lyme disease is transmitted mainly by tick bites. Ticks pump blood, which
contains Borrelia, and the re-inoculate another host later. Many animals,
such as rodents, birds or deer are reservoirs for this bacterium.
In general, a tick bite goes unnoticed, people will only remember
approximately one in three.
In the primary phase, it causes an erythema migrans around the bite: a
bull’s eye patch, it is usually round, red with a lighter center and darker
edge, it can sometimes be purplish.
In general, people do not see the tick and they think they have been bitten
by a spider, but the features described above are specific to the disease.
If you notice them, consult a doctor immediately.
Characteristic erythema migrans of Lyme disease (Wikimedia Commons)
Fatigue, paralysis, meningitis: symptoms are numerous
Untreated, the rash will often disappear by itself, but some people can
produce new bull’s eye rashes, long after the bite.
The patient is entering the second phase, which can be insidious, the
symptoms are multiple yet they often go unnoticed.
The affected person may experience heavy fatigue, unusual joint and muscle
pain. They may also suffer from a more rheumatic or neurological form with
memory problems, concentration, eye damage, meningitis, paralysis (often
facial), but also heart damage, skin problems...Lyme can truly manifest
itself in the whole body.
Patients are told that it is in “all in their heads”
This can be a real danger, because doctors often focus on the most obvious
symptom, without ever making the link with Lyme disease. This situation can
last months, weeks, years even. As a result, doctors may be treating
patients for another illness or the patients are told that it is all in
their heads, it is depression, and we, infectious disease specialists, end
up treating patients who have in fact landed in psychiatric care.
In my consultations, I see sick people every day, some are in absolutely
dismal states. Some have a 20-year gap in their lives, some have had to
stop working, some have lost their spouse and their work, some even commit
suicide.
The disease is not rare: the test are bad
The only way the disease can be detected today is through a serological
test: if it is positive, the patient can access treatment, but if it is
negative, patients are simply abandoned and left wandering without a
diagnosis.
This serological test is controversial today as it was calibrated primarily
using an American bacterial strain. As a result, many European patients
have never been diagnosed.
In France, the number of cases is officially 43 cases per 100,000 people,
but in reality numbers are much higher. Lyme disease is classified as a
rare disease, but this is completely wrong, it simply reflects how bad the
tests and the treatments are.
Coping as we can with treatments
The only thing experts have managed to agree on is what should be done in
the primary phase: at least two weeks of antibiotics should be prescribed.
But the problem is that in 80% of cases it is not done, doctors are simply
not willing to give antibiotics for a tick bite.
In the secondary and tertiary phases, the American and French consensus
recommends that patients be treated for three to four weeks. If the illness
persists, a second class of antibiotics can be tried, but this will not
heal not every patient.
After this period, it is “terra incognita”: everyone does as s/he pleases
and some doctors even resort to using unauthorized products. Treatments are
individualized: antibiotics, antifungals, antiparasitics are used, they
probably also work on co-infections ... In the long term, herbal medicine
may work well on some patients and it may be a plus, as it might enable
doctors to avoid giving antibiotics for too long.
Medicine is not capable today of properly treating this disease. The
reasoning being : why should money be spent on scientific research for an
“imaginary or rare” disease? Nobody is going to care.
A one-year waiting period for my consultations
When the disease has become chronic, because of lack of early diagnosis and
treatment, 80% of patients relapse, and as a result, doctors are even more
incredulous. Some tell me that they have "never seen any Lyme". My opinion
is that they simply have not recognized that one of their patients had
Lyme! and they have been treating him/her for something else. I personally
have a waiting period of one year for my consultations, it is utter madness
...
It is known that the bacteria keeps waking up from dormancy in cycles. Once
you are infected, in many cases, you will never get rid of it. Some
patients suffer from moderate forms but others are very ill, and their
whole lives can become living hells. Some patients, for example, can become
bedridden after 10 years of illness.
In the US, a vicious and brutal war has been taking place for decades. It
has been fueled by a handful of “experts” who refuse to recognize Lyme in
its chronic form. Yet, on a positive note, three US states and Canada have
recently voted a law to formally recognize chronic Lyme disease and to
encourage research. In France, we are lagging far behind: a bill aiming at
obtaining better ways to diagnose, treating and preventing Lyme disease was
recently rejected by the National Assembly.
