The early days
My experience of Lyme disease started in the early 80s. I used to work in an infectious and tropical disease department in the old Claude Bernard hospital in Paris. I met a young senior registrar, Dr Eric Dournon who learned from the CDC about the “new” disease called “Lyme disease”. He developed the culture of Borrelia burgdorferi and realized the first Lyme serologies in France. Thanks to Dr Dournon, I learned a lot about the first patients diagnosed with this “new rare” disease, especially about the diversity of symptoms and many atypical forms. During my internship, I worked in a rheumatology department in the Bichat hospital. The head of the department was the famous Prof. Marcel Francis Kahn who was one of the major rheumatologists, a great specialist of auto-immune diseases. He knew Prof. Stephen Malawista, a codiscoverer of Lyme disease. Prof. Kahn told me, at that time, that in the USA, after the availability of the first Lyme serologies, some patients followed for auto-immune diseases, such as lupus or rheumatoid arthritis, or psychiatric disorders had been cured with antibiotics. Lyme disease could be considered, after syphilis, as the new “great imitator”.
I was fascinated. After this early initiation, I discovered the disease in the real life. It was not the same than the one described in articles or textbooks. Meanwhile, Eric Dournon had created a National reference centre for Lyme borreliosis and then became professor of infectious and tropical diseases in the Raymond Poincaré university hospital in Garches, in the Paris area. He was perfectly aware of the poor sensitivity of serology. Unfortunately Prof. Dournon died in 1992. His National reference centre was moved to the Pasteur institute in Paris, in the leptospirosis lab. In 1994, by chance, I was appointed as professor of infectious and tropical diseases in the Raymond Poincaré university hospital on the position previously occupied by late Prof. Dournon, to be head of the medical department. When I arrived, the National reference centre had gone from my hospital for already two years. Years later, microbiologists from Strasbourg in Alsace started collaboration with the Pasteur institute lab. In 2012, the centre was transferred in Strasbourg.
I often tried to speak with colleagues of this important medical problem but none was interested in this “rare” or “imaginary” disease. At the end of the 90s, I was involved in research, chaired several working groups to make medical guidelines based on evidence and participated in several consensus conferences. I was naïve and thought can it will be easy to progress rapidly in the Lyme domain. I continued to take care of patients, to increase my experience and to write research projects to get funding. I discovered that while it was possible to get funds for HIV, tuberculosis or hepatitis C, it was impossible to get money for Lyme disease.
Upholding the Hippocratic oath
Hearing from chronic Lyme patients that I was the only hospital physician in France to take care of them and improve their condition, I accepted with enthusiasm to help associations of patients and supporters. For me it was a treason to the Hippocratic oath to abandon all these suffering patients. In the early 2000s, some mayors, senators and deputies, alerted by patients, started to contact me. They received many complaints from people rejected by the health system: countrymen, hunters, forest workers... Thus the Ministry of health asked the French High council for public health (Haut Conseil de la Santé Publique, HCSP) to evaluate data about Lyme and associated diseases. Two reports were made, a first one on prevention in 2010 and a second one on diagnosis and treatment in 2014. Both reports are available, in French, on the HCSP website (Haut Conseil de la Santé Publique).
In France, I met a group of physicians, mainly general practitioners, the Chronimed group, who took care of many chronic Lyme patients and also of patients suffering from several chronic idiopathic diseases. They were following, as myself, the theories of Charles Nicolle who was director of the Pasteur institute in Tunis, Nobel prize winner in 1928. He postulated that most of chronic inflammatory or degenerative disorders have an infectious origin that could not be detected by the classical tools of microbiology. He created the concept of hidden infections (“les infections inapparentes”).
In the 50s, Willy Burgdorfer published on African borreliosis (relapsing fevers) and the concept of hidden infections, which he called “occult infections”. In my book “La Vérité sur la Maladie de Lyme”, I propose to call them “crypto-infections”. This term includes acute or chronic events, whatever the symptoms or the microbes involved in the disease process and whatever the mode of transmission. Gastric ulcer, due to Helicobacter pylori, is a good example of crypto-infection. Ulcer was previously considered as a psychosomatic disease.
Political history in France
Very few physicians, in hospitals, accepted to follow me. I would like to thank Prof. Jérôme Salomon and Dr Barbara Vidal-Hollaender for their help. I published a review of the medical literature showing that routine diagnostic tests were not reliable (Perronne, Front Cell Infect Microbiol, 2014). The low sensitivity of Lyme serologies is now confirmed by a meta-analysis (Cook & Puri, Int J Gen Med, 2016). A report from the European Centre for Disease Prevention and Control (ECDC), released in April 2016, confirms that the serologic tests are not well calibrated. The main cause is that it is quite impossible to define populations of ill patients suffering from chronic Lyme for sure and of healthy controls, some of them being infected without knowing it.
There were several associations of patients and supporters. They were working separately and were not well recognized by authorities. They often used non-scientific and non convincing arguments. I worked with a small number of doctors (Dr Raouf Ghozzi, Dr Thierry Medynski and Dr Louis Teulières) and a PhD researcher in immunology, Hugues Gascan, to create a federation of the associations, including a scientific council of physicians and scientists. Thus actions are now stronger and more professional. In September 2015, the French federation against tick-borne diseases (Fédération Française contre les Maladies Vectorielles à Tiques, FFMVT) was created. Three associations (France Lyme, Lympact and Le Relais de Lyme) joined with a college of physicians and researchers. The slogan is: “Patients Physicians Researchers Together”.
A scientific council was created and I was asked to chair it. Dr Raouf Ghozzi, a hospital specialist in infectious diseases, working in Lannemezan in the Pyrenees, was elected president. The creation of the federation FFMVT had a tremendous impact. Advocacy could be based on scientific arguments and medical literature, showing that evidence was on the federation side. The scientific support dramatically increased consideration by media, politicians and health authorities.
Lyme in the French media
Before 2015, it was not possible to speak about chronic Lyme disease in the French media. Some journalists, such as Chantal Perrin, Bernard & Benjamin Nicolas, Gwendoline dos Santos, Isabelle Léouffre, realized fantastic reports. In July 2016, the Lyme cause obtained the cover page of the weekly magazine « L’Obs » with the title : “Maladie de Lyme. L’épidémie qu’on vous cache. 100 médecins lancent l’alerte. (« Lyme disease, this epidemic that is hidden from you! The 100 physicians raise the alarm »). The article was written by Emmanuelle Anizon.
Hundred physicians followed me, helped by the major contribution of Dr Raouf Ghozzi and Dr Thierry Medynski, and signed a petition, “The appeal of the hundred”. The appeal was asking for a political and medical change about Lyme disease and other tick-borne diseases. This appeal on the front page of a major journal had a tremendous success. It was followed by a significant increase of the media coverage of the topic.
The medical condition of many Lyme patients improves with prolonged anti-infectious treatments following the short-term antibiotic treatment officially recommended. Journalists were convinced by their medical history, especially when they were cured after years or decades of medical errancy. In 2014, the French High Council for Public Health (Haut Conseil de la Santé Publique) has acknowledged the lack of sensitivity of Lyme serologies and has recommended that, in the absence of reliable diagnostic tests, an empiric antibiotic treatment is to be given to patients with a probable Lyme borreliosis or another crypto-infection.
However, situation is blocked, despite the fact that the persistence of Borrelia sp. after antibiotic treatment is now evident in the literature. Not a single study has evaluated a really prolonged antibiotic or anti-infectious treatment versus placebo. In four published randomized studies, the duration of treatment evaluated versus placebo was short, from four weeks to three months maximum.
Legal actions by patients
In June 2016, a consortium of 150 (and now 200) patients attacked the Lyme serology manufacturers for the inaccuracy of their tests. French judges are asking manufacturers to provide arguments to prove that their tests are valid. A difficult task when a meta-analysis show that they are not.
In September 2016, the health authorities, Minister of health, Director general of health, High authority for health (Haute Autorité de Santé, HAS) acknowledged that there is a great public health problem and that diagnostic methods and treatment strategies should be revised. The Minister of health acknowledged publicly that many chronic Lyme patients are abandoned and rejected by the health system. She announced she was launching a National plan against Lyme disease and other tick-borne diseases. For the first time, public funds were given for research. A research project of a national cohort of patients was planned.
In February 2017, a patient with paralysis in a wheeling chair, in failure of different lines of treatment given in neurology, was cured after three months of anti-infectious treatment, which I prescribed despite a negative Lyme serology. Before treatment, she sent her blood to a veterinary lab. She had to give the name of a dog to have her blood tested by PCR. The PCR was positive for Borrelia. Thanks to the anti-infectious treatment, she could practice ski again a few months later. She felt betrayed by the medical system and lodged a complaint at the penal court against person unknown (‘contre X’ in French), for aggravated deceit.
A multi-disciplinary group of experts was set up at HAS, including representatives of medical societies, physicians from several specialties, microbiologists, general practitioners, the National reference center for Borreliosis, patients, Lyme literate medical doctors and a PhD researcher from the federation FFMVT. The goal is to try to find a consensus for diagnosis and treatment. If not possible, the federation asks for the possibility to have two standards of care accepted. The working group met for the first time in March 2017. The expected date for conclusions is before the end of 2017.
Defending human rights
The emergency is to stop prosecutions against physicians and biologists who do their best to save patients. New diagnostic methods, such as PCR for Borrelia sp. or for co-infection agents, should be rapidly evaluated on cohorts of patients. Judges and psychiatrists should be aware of the terrible consequences of the disease on the huge number of patients kept in confinement in psychiatric wards, for the only reason that nobody understands the cause of their condition.
Paediatricians should stop accusing parents to be the cause of the disease of their child, while it is a curable organic microbial disease. These issues represent a violation of human rights.
Thus, in 2017, I have joined the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. The members of the Ad Hoc Committee represent highly skilled professionals from all the regions of the world. They serve as leaders, clinicians and professors across numerous well respected academic and research centres. Our report was shared with the United Nations (UN) Human Rights Council Special Rapporteur responsible for health and human rights.
The World Health Organization has recognized Lyme borreliosis as a multi-region “disease of consequence” for decades. In August 2017, the ECDC published a handbook and manual tool for the prioritization of infectious disease threats that includes Lyme borreliosis among the 30 most threatening diseases of public health importance. The time has come to stop discussing anymore and to act to save lives.
Prof. Christian Perronne, MD, PhD
Department of infectious and tropical diseases. University Hospital Raymond Poincaré, Garches, France. Greater Paris University Hospitals, University of Versailles – Saint Quentin, Paris – Saclay.
Christian Perronne, MD, PhD, qualified in Internal medicine, is Professor of Infectious and Tropical Diseases at the Faculty of Medicine Paris-Ile de France-Ouest, University of Versailles-St Quentin (UVSQ), Paris-Saclay, France. Since 1994, he is chief of a Department of Medicine at the Raymond Poincaré University Hospital in Garches, Greater Paris University Hospitals group (Assistance Publique – Hôpitaux de Paris). Qualified in Bacteriology and Virology by the Pasteur institute, he was vice-director of the National Reference Centre on Tuberculosis and Mycobacteria at the Pasteur institute in Paris until 1998.
He is past-president of the French College of Professors of Infectious and Tropical Diseases (CMIT), co-founder and past-president of the French Federation of Infectiology (FFI) and past-president of the French National Technical Advisory Group of Experts on Immunisation (CTV). He was chairman, at the French Drug Agency (ANSM, ex-AFSSAPS), of the working group making national evidence-based guidelines for the antibiotic treatment of respiratory tract infections. He was president of Superior Council for Public Hygiene of France from 2001 to 2007.
He was president of the Communicable diseases commission at the French High Council for Public Health (HCSP), making recommendations for the public health and vaccination policies until 2016. He was principal investigator of several major clinical trials on HIV, mycobacterial infections and viral hepatitis at the National AIDS and viral hepatitis research agency (ANRS). He was member of the scientific committee of the French Institute of Research in Microbiology and Infectious Diseases (IMMI, INSERM) until January 2013. He was president of the National Council of Universities (CNU), subsection Infectious and Tropical Diseases. He was vice-president of the European Technical Advisory Group of Experts on Immunisation at the World Health Organization. He is a member of a research unit at the Pasteur Institute and INSERM: UMR 1181 “Biostatistics, biomathematics, pharmaco-epidemiology and infectious diseases” (Bio2PhEID lab).
He is author or co-author of more than 300 scientific publications in peer-reviewed journals. Since 1994, Christian Perronne is involved in the management of chronic Lyme and associated diseases. He is leading a coalition of patients and physicians for the recognition of chronic Lyme disease and other crypto-infections in France. He is cofounder and vice-president of the French federation against tick-borne diseases (Fédération française contre les maladies vectorielles à tiques, FFMVT) and president of its scientific council.
Perronne C. Lyme disease antiscience. Lancet Infect Dis, 2012 ; 12:361-2
Perronne C. Lyme and associated tick-borne diseases: global challenges in the context of a public health threat. Front Cell Infect Microbiol, 2014 ; doi:10.3389/fcimb.2014.00074
Perronne C. Critical review of studies trying to evaluate the treatment of chronic Lyme disease. Presse Med, 2015 ; doi: 10.1016/j.lpm.2015.06.002
Borgermans L, Perronne C, Balicer R, Plasek O, Obsomer V. Lyme disease: time for a new approach? Br Med J, 2015; doi: 10.1136/bmj.h6520
Perronne C, Lacout A, Marcy PY, El Hajjam M. Errancy on Lyme diagnosis. Am J Med, 2017; doi:10.1016/j.amjmed.2016.12.001
Lacout A, Marcy PY, El Hajjam M, Thariat J, Perronne C. Dealing with Lyme disease treatment. Am J Med, 2017; doi:10.1016/j.amjmed.2016.12.039
“La Vérité sur la Maladie de Lyme » (The Truth about Lyme Disease), in French, Odile Jacob Publisher (Paris)
Interviewer: Huib Kraaijeveld
Call to action: 'A Matter of Dignity'
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