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- Herausgeber: Hammersmith Health Books
- Kategorie: Ratgeber
- Sprache: Englisch
- Veröffentlichungsjahr: 2020
The accepted message is that humankind has largely conquered infectious disease with a mixture of antibiotics and vaccines yet it is becoming clear that chronic hidden or latent infections (Crypto-infections) lie behind many of today's big killers, including heart disease, dementia and cancer. From his experience as one of France's - and the world's - leading ID specialists, Dr Perrone examines the threats that both Lyme in particular and Crypto-infections in general pose and how we can rise to the challenge.
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‘Knowledge of infectious diseases teaches men that they are brothers and that they stand in solidarity’.
Charles Nicolle (21 September 1866 – 28 February 1936) Awarded the Nobel Prize for Physiology or Medicine in 1928
‘This book is a very necessary document, which sheds light on the issues of Lyme disease that are affecting patients worldwide.’
Professor Jack Lambert, Infectious Disease Specialist, Dublin, Ireland
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Dedications
To Claude Capelier, philosopher and writer, who has encouraged me during the writing of this book and who, with great foresight and intelligence, has helped me with the writing and editing.
To my family, my wife Véronique and my four daughters, Lætitia, Lorraine, Aurore and Natacha, who have always supported me with all their love, even if it was difficult for them to see my passion for my friend Borrelia take all of my attention and time during all these years.
To the patient groups in Ireland for supporting the work of translating this book into English.
To the European Lyme Resource Centre, an educational centre established in Dublin, Ireland, which will serve as a support for patients and healthcare providers alike (https://www.lymeresourcecentre.com/index.php/).
To Professor Jack Lambert, founder of the European Lyme Resource Centre, located in Dublin, Ireland, who enabled the translation of this book. Jack Lambert wrote the foreword for this book and an up-date of the situation in Great Britain and Ireland.
To the translators, Gordana Avramovic and Dr Georges S Kaye.
Contents
A translator’s note
The embrace of intelligence is proffered with two arms: that of curiosity and that of scepticism. Within such latitude one would expect a good man, bearing sound ideas and displaying the patience of Job, to succeed. Not a bit of it! The history of medicine, of science, and generally of thought and human endeavour, is replete with tales where good turns or good deeds or good ideas ‘do not go unpunished’.
The physician William Harvey in the early seventeenth century paid the price. In an epoch-making tome, Harvey fulsomely described the proper operation of the circulation of blood around the body, the first to counter 1500 years of orthodoxy dating back to Aristotle. The philosopher Bacon fired Harvey in punishment for heresy: Harvey had dared to question the masters of medicine.
Semmelweis in the mid-nineteenth century fared worse: he died in misery, having lost his wits and health long after he lost all else. It was several decades before the proof Semmelweis gave the world was accepted, that puerperal fever, the killer of millions of women in childbirth through the ages, proceeded from the accoucheur’s hands being infected by the common Streptococcus bacterium – several decades, during the span of which many more women died who might have survived. The pity of it. The shame of it.
Even before fully entering Professor Perronne’s narrative, whilst merely gliding over it, the similarity between Semmelweis’s world and struggle, and our own – terrifyingly xcloser to us than Semmelweis’s – leaves one incredulous. From contemporary colleagues and scientists, we had expected better. With greater force yet, we do and shall expect better. Again and again Semmelweis analysed the evidence and demonstrated his thesis, beyond the criminal threshold of proof; again and again the chorus of Polly-Burgdorfer-Scrimenti echoed this struggle trying to prove the truth about Lyme disease.
We take heed, and hail Professor Perronne’s narrative. We thank him for his part and role in persisting and explaining the truth. We applaud his candour and clamour, and, through the professor’s work, we celebrate the many who refused to be gagged or constrained on the long road to seeking answers. Dr Georges S Kaye, internal medicine specialist London, UK
Preface
A global scandal, one of the most astounding in the history of medicine, is now attracting the attention of media and public to Lyme disease and other hidden or ‘crypto’ infections. The primary cause of Lyme is known: a bacterium transmitted by ticks. There are effective treatments to fight it. Yet for years, health authorities and a large section of the medical community colluded (and widely continue to collude) in refusing to recognise the reality of this chronic infection and the sequelae which are often life-threatening. As a consequence of this neglect, a great number of people who are suffering tremendous pain and unimaginable distress have languished in diagnostic limbo for years. More often than not, these patients have been labelled as fabricators, hypochondriacs or plain lunatics. Millions of patients worldwide, gripped by symptoms caused by hidden, chronic infections, end up in psychiatric care or are condemned to endure stultifying and ineffectual treatments, or inappropriate surgical interventions.
Such a tragedy invites us to reflect upon the victims abandoned to terrible suffering and surreal courses of treatment, but it must also make us recognise the courage and determination of those doctors and scientists who identified the disease, who have explored its causes, and who have developed effective treatment strategies. Beyond this it behoves us to confront a crucial question: why is there such collective dissembling, or at least neglect, on the part of experts and governments alike and how can we attempt to put an end to this injustice? xii
Answers to such questions open up prospects of unexpected depth and richness. Whilst it would be absurd to posit a conspiracy of ill-will on the part of authorities worldwide, and specifically in America, it is nevertheless important to analyse this narrative, and seek accountability on the part of the institutions that steer, evaluate and control medical research and therapeutic trials. This is no trivial task. To such institutions and procedures falls the awesome responsibility of acting as guarantors – our guarantors – of scientific objectivity, probity and rigour. In the case of the Lyme episode, rigour turned into rigidity, and procedures morphed into dogma, to the point of thrusting us into blindness. The case of Lyme disease demands fresh perspectives and, to say the least, minds less closed and insights less constricted. In short and in Bachelard’s analysis: ‘Beware lest scientific tools turn into impediments – epistemological obstacles’!
How do we achieve a deeper understanding of such processes without forfeiting the benefits of the current system’s framework? A reflection on this subject is an opportunity better to define the characteristics of a group of imperfectly understood maladies, caused, as is Lyme disease, by hidden infections, for which I here propose the designation of ‘crypto-infections’.
Christian Perronne
Acknowledgements
On behalf of countless patients, I would like to warmly thank all the sufferers in France and around the world who are leading the fight for the recognition of chronic Lyme disease and related diseases – patients whose daily courage commands respect and admiration in the face of a mountain of denial and rejection. Many are enduring a terrible fight, without help.
Then I would like to thank the few doctors in my hospital department who have believed me and helped in the care of the sick.
I would also like to thank the nurses, nurses’ aides, and secretaries of the department who did not fully understand this complex disease, or these patients who were so difficult to understand and treat, but who trusted me, especially after seeing some spectacular results in severely disabled patients.
Other doctors I would like to thank are:
The courageous general practitioners, in particular those of the Chronimed group, who, under threat from France’s Department of Social Security, treated and saved tens of thousands of patients, often in distress.Professor Luc Montagnier, Nobel Prize winner in physiology or medicine, for his support for the cause of Lyme disease and associated diseases.Dr Philippe Bottero, a courageous pioneer condemned for having saved thousands of sick people.The doctors in the Department of Social Security and in the xivOrder of Physicians, still a minority and obliged to remain discreet, but who show me their increasing solidarity.I would also like to thank these patient support associations
The first patient support associations: the Tiquatac.org site, the Nymphéas, SOS-Lyme and Lyme Éthique, true pioneers who, without any means, cleared the ground and made certain political figures aware of the problem.The first major association, France Lyme, which provided a national dimension to the debate.Other associations like Lympact, Lyme Sans Frontières (Lyme Without Borders), the Relais de Lyme, le Droit de Guérir, Orne Lyme, Vaincre Lyme, Lyme Team.Judith Albertat, former president of Lyme Without Borders, who gave a new impetus to the fight during her presidency.The French Federation Against Tick-borne Diseases, bringing together patient representatives (France Lyme, Lympact and Le Relais de Lyme) with a scientific council composed of doctors and researchers. Its slogan ‘patients, doctors, researchers together’ is a superb model for advancing the cause of patients with serenity and on a scientific basis.My thanks too to the leaders and numerous volunteers of the French Federation Against Tick-Borne Disease (FFMVT) who, while fighting against their fatigue, their pains and their handicaps, joined me to carry out remarkable work, in particular to help others in distress.
I am indebted to the scientific journals, journalists and the media, in particular the medical and scientific journals and journalists who have had the courage to publish works diverging from the imposed ‘dogmas’:
Chantal Perrin, journalist, who produced the first major report on the disease and the associated scandal for France xv5 television. The report was a huge national and global success and paved the way for media debate. Chantal later wrote a remarkable book on the subject with Roger Lenglet.Gwendoline dos Santos of the newspaper Le Point, who, through her talent, inaugurated a series of spectacularly successful media events, triggering an epidemic of downloads. This public enthusiasm for the Lyme cause was confirmed by the enormous impact of several reports by other journalists on different television channels and in several newspapers.Isabelle Léouffre from Paris Match who was able to highlight the poignant testimony of patients.Emmanuelle Anizon from L’Obs, who, aware of the scale of the problem, mobilised herself and produced a major report that made it possible, through its fallout, to publicise the Lyme disease problem throughout France, with a relay in all national newspapers.The many doctors who signed a petition published in L’Obs.The courageous sick, more and more numerous, who agreed to come out of the shadows to testify to the media.I must also thank the political figures who gradually saw the immense repercussions on the health of their fellow citizens and who joined the fight.
My thanks too to the patients, doctors and researchers from all over Europe but also from other continents with whom I am in regular contact.:
Professor Michel Franck, from the veterinary school in Lyon who developed research projects on PCRs.Jenna Luché-Thayer for her extraordinary global combat in the defence of human rights. Her commitment at the head of a global coalition is very powerful.Professor Jack Lambert from Dublin, for his intelligence, xvihis commitment, his desire to work with me and other university colleagues to develop scientific research, education and communication in Europe. Thanks to Jack Lambert and his financial help, this English version of my book exists.Dr Georges Kaye, specialist in internal medicine in London, who speaks perfect French and English. Georges Kaye called me a few weeks after the publication of my book in 2017 to tell me that he read it with enthusiasm. He came to see me in Paris and started the translation of my book. We remain friends.Gordana Avramovic, research project manager at the University College of Dublin, Ireland, who is working with Jack Lambert, and accomplished a feat by translating the main part of this book in a short period of time.My wife, Dr Véronique Perronne, specialist in internal medicine and in infectious and tropical diseases, who joined me in 2018 in my department to help me in the management of chronic Lyme disease and other crypto-infections. Cheerful thanks for her huge help and support.My thanks too to the French but also English, Swedish, Finnish, Polish and Australian doctors whom I helped in their defence during the violent attacks against them by the health authorities of their countries.
I would also like to thank this institutional leader who wished to help advance research: Ms Marisol Touraine, former Minister of Health, and her advisers for having become aware of the problem and deciding to act
About the translators
Gordon Avramovic MA Linguistics, BSc is Research Project Manager at University College Dublin, Ireland.
Dr Georges S Kaye is a specialist in Internal Medicine running a private general practice in London, UK. xviii
About the author
Christian Perronne, doctor of medicine and of science, is Professor of Infectious and Tropical Diseases at the Faculty of Medicine Paris-Île-de-France-Ouest, University of Versailles-Saint-Quentin-en-Yvelines (UVSQ), Paris-Saclay. He was Head of the Department of Medicine at the Raymond-Poincaré University Hospital in Garches (Hauts-de-Seine) of the Greater Paris University Hospitals group (Assistance Publique-Hôpitaux de Paris) from 1994 until December 2020, when he was asked to step down because of his public statements on the management of the Covid crisis.
A former graduate of the Pasteur Institute in bacteriology and virology, he was Deputy Director of the National Reference Centre for tuberculosis and mycobacteria at the Pasteur Institute in Paris until 1998. He is former President of the Collège des Universitaires de Maladies Infectieuses et Tropicales (CMIT) and co-founder and former President of the Fédération Française d’Infectiologie (FFI, French Federation of Infectiology).
He was president of the French National Immunization Technical Advisory Group (CTV) from 2001 to 2007, the committee in charge of national vaccine recommendations. At the Medicines Agency (currently National Agency for the Safety of Medicines and Health Products, ANSM), he was a member of the anti-infective treatment group from 2000 to 2006 and chaired the working group to develop national evidence-based recommendations for the proper use of antibiotics in respiratory infections. xx
He has been principal investigator of several National AIDS Research Agency (ANRS) clinical research trials on HIV infection and viral hepatitis. Christian Perronne was President of the Conseil Supérieur d’Hygiène Publique de France (Superior Council for Public Hygiene of France). He was Chairman of the Communicable Diseases Commission of the High Council for Public Health (HCSP) from 2007 to March 2016, which develops recommendations for public health and vaccine policy for the Ministry of Health. He was President of the National Council of Universities (CNU), Infectious and Tropical Diseases subsection from 2007 to January 2016. He was a member of the scientific committee of the Institute for Research in Microbiology and Infectious Diseases (IMMI), a thematic institute of the Institut National de la Santé et de la Recherche Médicale (INSERM, National Institute for Health and Medical Research) from 2009 to 2013.
He was a member of a research unit at the Pasteur Institute and INSERM: UMR 1181 ‘Biostatistics, biomathematics, pharmaco-epidemiology and infectious diseases’ (Bio2PhEID lab). He was Vice-President of the European Expert Group on Immunization (Etage) at the World Health Organization until 2015. He was Vice-President of the French Federation against Tick-borne Diseases (FFMVT). He is author or co-author of over 300 referenced international scientific publications.
Foreword
This book tells of the experience of a French ‘Lyme’ doctor, Christian Perronne, and readers may think it is a uniquely Gallic experience. Sadly, however, it is not. Every ‘Lyme’ doctor worldwide has had very similar, if not identical, experiences to those of Professor Perronne. And many infectious disease doctors who treat Lyme patients find they are working in a ‘vacuum’ without support; they are often ‘isolated’ from their peers because of their ‘belief’ in chronic Lyme, or they cannot perform research studies because all of their research proposals are turned down. Yet they come up with the same observations and conclusions that have been deduced in France – that patients are not making up these illnesses, that there are many occult infections out there that are being missed by clinicians (crypto-infections), and these infections are the trigger for a cascade of infection, inflammation and autoimmunity. And these infections are being missed for many reasons: poor diagnostics, a lack of willingness on the part of the ‘conventional’ medical community to look beyond their ‘comfort zone’, and other agendas. While Borrelia, the bacterium causing Lyme disease is the prototype, it is clear there are multiple infections that are triggering these conditions; but it is hard to move forward with a plan to better understand, investigate and treat these conditions where there is so much resistance and ignorance, and where there are political dealings behind the scenes by the ‘conventional’ medical community to block progress. xxii
I have been ‘confronting’ Lyme for the last six years in Dublin, Ireland, and have worked with the patient groups in the UK and Ireland to better understand the situation these patients are battling with. The first issue relates to testing: the ‘powers that be’ stand by the fact that tick-borne infections are rare, that the current testing method is accurate, that alternative testing (i.e. by private laboratories within the EU) is not accredited and the tests are not validated, and that patients with ‘Lyme-like’ illnesses can have any one of many conditions including ‘mystery, as yet undiscovered, retroviruses’, but never Borrelia. When I have treated patients with chronic Lyme in my public hospital, my colleagues have refused to support my longer courses of treatment as these do not follow the official ‘guidelines’, but these same colleagues turn around and treat other infections for longer periods of time than set out in the ‘guidelines’ for those infective organisms. Indeed, I have seen many of them give patients in their private practices longer courses of treatment, but they do not do it in the public hospitals.
I have identified that many patients in Ireland have other infections besides Borrelia, especially Anaplasma and Chlamydiapneumoniae but my microbiology ‘colleagues’ in the public system have banned me from testing for other tick-borne infections as being ‘a waste of resources’. When I send samples for testing to the laboratory that these colleagues ‘control’, these samples are thrown away. I have asked for meetings with them to discuss this problem and to educate them; no response.
I was asked by Tick Talk Ireland, the patient group, to review a ‘final draft’ of an Irish health executive document on Lyme disease in Ireland, which stated that ‘even without treatment, Borrelia spontaneously disappears’. When the patient group asked me to ‘challenge’ these statements, I did so; I was subsequently told the document was just an ‘early’ draft and that it was under review. This wording was eventually removed from the Irish Lyme health executive document. xxiii
I have attempted to conduct research and get approval for my Lyme research project through my hospital’s research ethics committee. It took 15 months to get approval as ‘one unidentified reviewer’ did not approve of my ‘off licence’ use of antibiotics, and I had to get a letter from another infectious disease consultant to say that he agreed with me doing research on this subject. This has never, ever been required for any research ethics proposal at my hospital before, and, by the way, my most recent Covid-19 research proposal was approved in a record 15 days (not 15 months!). Why?
I then tried to set up a Lyme resource centre in Ireland, focused on educating the public, training GPs and developing research; I announced plans and set up a launch. My public hospital ‘colleague’ went around and recruited a cadre of consultants, and even the hospital CEO, who were misinformed about the goals of the LRC. I was banned from conducting the launch on hospital premises and had to book a hotel nearby to conduct the launch, attended by dignitaries and patient groups from Ireland and the EU. Why?
I have conducted training sessions for GPs on tick-borne infections as I have seen many patients coming in to see me with a missed Lyme diagnosis, often instead diagnosed with ‘cellulitis’ or ‘ringworm’ when it was clear they had had a tick bite or had been in a tick-suspect area and had systemic symptoms consistent with tick-borne infections. I had many patients coming down from Donegal, in the northern part of the Republic, with these unexplained symptoms, and a group of these rural people who had been chronically unwell but with negative Lyme tests, and who had been ‘fobbed off’ by their GPs as ‘psychiatric’ or making up their illnesses. I saw many of these people who had a clear history of tick-bite exposure yet whose GPs would not even entertain Lyme as a possibility and refused to even conduct a Lyme test, having already caterogised them with another ‘blanket’ diagnosis: fibromyalgia, chronic xxivfatigue syndrome, functional neurological syndrome, chronic pain syndrome and others. Furthermore, in Donegal, where I found a cluster of chronically infected patients near GlenVeigh, who had these ‘mystery’ illnesses, and who got better with my longer course treatment, I was asked to talk on the Donegal radio station. I mentioned that I thought there were many missed diagnoses and that GPs were not adequately trained in tickborne infections.
I have conducted studies on Borrelia in ticks in Donegal, and we found about 6% of ticks were positive for Borreliae, including the cause of relapsing fever borreliosis. Either way, these patients were sick, and I believed in the genuineness of their illnesses; I was treating them and planning a training programme for GPs in Ireland (and the UK). I had done the same for STIs (sexually transmitted infections) in Ireland and have trained over 1000 GPs and nurse specialists over the years in these infections, with good success and appreciation.
Shortly after the radio interview, I was visited by a senior member of UCD (University College Dublin) who had received a complaint from a GP who said I had ‘slagged off’ the GP on the radio. I had to write an apology. I also received a very nasty letter from a GP group in Donegal, saying they did not support the way I diagnosed Lyme disease nor my approach to treatment, and they would not work in partnership with me to get their patients better. This GP group had no alternative diagnosis to offer, but clearly their impression was that the patients were ‘nuts’ and the cause of their symptoms could not be Lyme disease or any other associated tick-borne infection. Thus, while I teach the GPs about STIs, and this is widely appreciated, when I try to teach about Lyme disease, many reject this offer. They stand by the ‘mantra’ of the health authorities in the UK and Ireland that discount and discredit tick-borne infections as ‘rare’ and often ‘made up’ by patients. It should, however, be noted that studies conducted by xxvUCD researchers have shown that ticks on animals in Ireland are carrying Borrelia, Anaplasma and Babesia.
Not all GPs have been resistant. A number in Donegal who accept that their patients have these ‘mystery’ illnesses and are willing to entertain the idea that there may be an underlying infection despite negative tests, have worked together with me and their patients to get them better.
What then is the current status of Lyme disease and other tick-borne infections in Ireland? And what is the thinking of infectious disease specialists here? As in France and most other countries, it is not encouraging. Early on I reviewed a number of teenagers who I thought had Borrelia infection. They had positive test results from private laboratories and convincing histories of tick-borne infections. I was visited by one of the IDSI (Infectious Diseases Society of Ireland) doctors, who warned me off seeing these patients, and indeed pointed out to me that one of the patients had been hospitalised with a problem that was a parental one – a sort of ‘Munchausen’s syndrome by proxy’. This was a scary informal meeting where I felt quite threatened, but why blame the parents?
Later, I was asked by the Irish senate (the ‘upper house’ of Ireland’s Oireachtas), by their medical subcommittee, to provide an introduction to the hearing on tick-borne infections. This meeting was set up to give the Irish patient group, Tick Talk Ireland, a forum to present the difficulties they were having, including neglect and indeed abuse at the hands of many GPs and consultants in Ireland when they raised the issue of ‘Lyme disease’. As requested by the chair of the Medical Committee, I was asked to provide my presentation ahead of time, which I did. I had planned to leave this meeting within 15 minutes, to go back to patients at my hospital who had booked appointments that morning. During my 10-minute introductory statement, members of the Department of Health and about 10 consultants from IDSI, arrived at the hearing and walked in ‘en masse’. Were xxvithey there to support the patient groups? Following my introduction, I was then asked by the Medical Committee to respond to a signed petition from all members of IDSI (except one, me!), which gave a ‘narrative’ on Lyme disease. It basically said they supported the Swiss consensus guidelines of 2016 that stated there was ‘no such thing as chronic Lyme’ and that a short course of treatment cured most people. As I had never seen this IDSI petition (I was somehow omitted although I am on their mailing list as an IDSI member), I was really unable to discuss the Swiss guidelines as I had been denied the courtesy of receiving the document ahead of the meeting though I had provided my document ahead of time.
(Following the meeting, I reviewed the Swiss guidelines. They refer back to IDSA 2008 communications that fail to recognise chronic, persistent infection. The IDSI petition, put together by my ‘colleagues’, failed to include most of the new data on persistent infection that I had provided in my presentation.)
I finally escaped from the meeting and left to go back to my patients, an hour later than planned. I later heard the ‘Spanish Inquisition’ against Tick Talk Ireland continued for a few more hours, all recorded on Irish TV and later distributed on YouTube. An Irish political champion, Mark McSherry, later told me, ‘We were ambushed’.
I lost a lot of sleep over this event, having been ‘stabbed in the back’ by my ‘colleagues’. And indeed they had done the same to the patient groups. Why would members of the Irish Department of Health and the medical consultants of Ireland show up in such force? I thought, as public servants, we were there to support our taxpayers and especially our sick ones, and help them to get better. I guess not.
I have applied for research grants through the EU to study tick-borne infections, most recently for an ERC grant for ‘high risk’, new innovations. I have previously received $1.2 million funding for HIV at the National Institutes of Health, and c.€2.4 xxviimillion from the Third Health Programme EU for hepatitis C. My application to better understand tick-borne infections and chronic infection was strongly supported by three of the reviewers, but one reviewer scored me so low that my grant became ‘non-competitive’, disqualifying me from re-applying to the EU for this project the following year. This reviewer’s comments, which were very personal in nature, included the following: ‘The PI appears to be a follower of the movement ‘Lyme-literate physicians’ and International Lyme and Associated Disease Society’ that identifies ‘chronic Lyme’ in many more individuals than would be justified by the responsible and rational application of consensus guidelines for the diagnosis and management of this and related infections. The PI is entitled to his opinions and the promulgation of these as he sees fit, but for scientific proposals of merit such conjecture should be backed up by empirical evidence and a more vigorous research plan.’
Consequently, I can well understand Dr Perronne’s experiences with being ‘ostracised’ within France, with patient groups not being supported and with many patients being ridiculed. (The doctors in Ireland say this never happens but the patient groups here have put together a list of comments made, and they are not kind.) And all Lyme-treating clinicians, not just in France but worldwide, are in a fight for better understanding of these mystery illnesses with no support from the wider medical community.
I have recently put together a position paper on congenital Lyme disease which has been rejected by a number of UK journals. At the same time, a journal article recently accepted by the British Medical Journal (BMJ) which ‘summarises’ current knowledge about Lyme, once again rejects the possibility of chronic Lyme infection and, when reviewing the literature provided by ILADS (the International Lyme and Associated Diseases Society), states that the authors do not accept the ‘evidence-based’ publication provided by ILADS though this brings together all of the xxviiiupdated literature on Lyme infection. Instead, the BMJ review regurgitates the IDSA publication from 2008, re-regurgitated in the Swiss guidelines in 2016, and now re-re-regurgitated in 2020 and accepted by the BMJ. Who are the reviewers that accepted this publication? Maybe the same ones who are on the EU ERC committees? It is clearly a closed shop.
So what keeps Dr Perronne and myself and other ‘Lyme-literate physicians’ going? We clearly do not enjoy these attacks and ambushes and behind the scenes ‘character assassinations’. The only tangible reward is that of seeing some very lovely and appreciative patients get better with these ‘non-guideline’ directed treatments.
To see the patients I have treated from Donegal, and from other parts of Ireland, from Scotland, Wales, England and within the EU, get better after many years of illness, has been truly rewarding. Their ‘alternative’ diagnoses faded away – that is, their chronic psychiatric conditions lifted; their chronic pain syndromes disappeared; their fibromyalgia vanished; their chronic fatigue syndrome evaporated. And the joy of seeing them get better, when so many other doctors had ‘given up on them’ because they couldn’t find anything wrong, is the true reward. Therefore, the conclusion reached by multiple other GPs and specialists – that they must be making up their illnesses or they must be ‘crazy’ – cannot be right.
There is inspiration too in seeing a few GPs in Ireland be prepared to consider chronic crypto-infection rather than follow the mantra passed down to them by closed-minded consultants, like Chinese whispers, that: Lyme is over-diagnosed and very rare; there are no ticks in Ireland; the ticks in Ireland don’t carry Lyme; tests used in Ireland are perfect; most people get better even without treatment; if you are still sick after a short course of antibiotics, then it is post-treatment Lyme disease syndrome and no further treatment is allowed; we don’t accept the German diagnostic tests because they are not accredited (though the xxixIrish public health service ran their Covid-19 tests in these ‘non-accredited’ German labs’ and they accepted these results). It is worth noting that the Tickplex Plus test that many patients get is a licensed test in Finland, not Germany!
Every now and then an Irish GP cops on when s/he says his/her patients get better with longer courses of treatment, and s/he supports this treatment. This is admirable and I thank them. And I thank every patient (mostly farmers and rural residents of Ireland) who have been so strong to fight for their health, and despite many negative consultations, and often negative comments from those who could not find an answer, have persevered and proactively worked to seek appropriate testing and treatment. These patients have really inspired me. The actual mechanism of why they get better will never be understood unless the EU eliminates ‘negative’ reviewers from their panels, and indeed negative reviewers from the medical journals, who accept nonsense and deny new science.
But for a Lyme-literate physician, it is a dangerous ocean to swim in; truly we are swimming in shark-infested waters. And throughout the UK and Ireland patients continue to be discredited and those doctors who take care of such patients are ostracised. The patients and the ‘Lyme-literate’ doctors know they are doing the right thing and these doctors are treating patients with the best of motives. But how do these treatments work? We don’t know because the powers-that-be deny the existence of these conditions. And this fight has been going on for 30 years. Dr Perrone is not the first to fight this war, and he will not be the last. His story in France is similar to my story in Ireland, and similar to the stories of doctors in the USA, Canada, Sweden, Holland, and the UK. We all have had the same personal experiences, patient experiences, and scientific observations, often made independently. It is a tough uphill battle; IDSA is a powerful organisation, 20,000 or more strong. ILADS is made up of fewer than 1000 medical professionals with different expertise from the xxxIDSA doctors. It is truly a scenario of David versus Goliath. We are all rooting for David. And for Christian Perronne.
Dr Jack Lambert
Consultant in Infectious Diseases and Genitourinary Medicine at the Mater Misericordiae University Hospital and Rotunda Maternity Hospitals, with a teaching appointment at UCD School of Medicine and Medical Science; Director of the National Isolation Unit for Highly Infectious Diseases at the Mater Misericordiae University Hospital; a member of the National Viral Hemorrhagic Fever Committee of the Health Service Executive (HSE) Ireland
Introduction
To put all that follows in this book into context I would like to begin with an up-to-date set of figures regarding the current known incidence of Lyme disease in countries that are key to what follows in later chapters:
Annual reported Lyme borreliosis in Europe has ranged from 65,000 to more than 200,000.1,2 In 2014 and 2015, an incidence of 117 Lyme borreliosis cases per 100,000 inhabitants was found in the Alsace region of France.3In France in 2018, the incidence increased by 104 cases per 100,000 inhabitants. In 2016, the most affected region was Limousin (617 cases per 100,000), followed by Lorraine and Poitou-Charentes. Alsace was fourth (281 cases per 100,000).4In Germany, based on a retrospective analysis of health insurance data, an incidence of 261 cases per 100,000 was found for the reference years 2007 and 2008.5In the US, the incidence is still growing and the disease has spread across the 50 states. In 2016 in Connecticut, the incidence of cases was found to be 1980 per 100,000.6In addition to Lyme disease due to some species of Borrelia bacteria, there are other pathogenic species of Borrelia which are never routinely looked for and other micro-organisms, mainly bacteria and parasites, which may be responsible for concurrent infections, the so-called ‘co-infections’. As borreliosis and co-infections are often not apparent, hidden away within 2our bodies, I call them ‘crypto-infections’. I’ll explain more extensively the choice of this word, at the end of Chapter 1. As no tests are done routinely for most crypto-infections, there are no reliable statistics worldwide.
If we look at what happens to patients who recovered from the acute Covid-19 disease due to the new coronavirus SARSCoV-2, we observe that some of them develop a persistent syndrome (post-Covid-19 syndrome), with fatigue, multiple pains and various disorders, a syndrome very similar to chronic Lyme disease. A hypothesis is that dormant crypto-infections with bacteria and/or parasites are awakened by the acute coronavirus infection. We’ll see in this book that similar phenomena occur after other acute infections, such as infectious mononucleosis (glandular fever), infection with cytomegalovirus, dengue or Chikungunya. These possible interactions between different kinds of infections should be better explored.
The current situation regarding tick-borne infections in Ireland and the UK
The situation in the UK and Ireland seems even worse than in France as described in detail later in the book. There is a downplay of the number of cases, virtually no recognition of chronic Lyme disease, no recognition that tests are unreliable and little understanding of the multiple tick-borne infections that a patients can be infected with from a single tick bite. In addition, there are no specialist treatment centres and in the UK not even any treatment specialists within the NHS.
Guidelines
Most UK specialists follow classic IDSA guidelines (see page 322), and in many ways are more restrictive than many other countries. The UK NICE guidelines that came out in 2018 focus 3only on early Lyme infection and stick by the usual mantra that Lyme is rare and easy to diagnose, that most doctors are ‘skilled’ in making a Lyme diagnosis, and that a short course of antibiotics will cure most individuals with ‘confirmed’ Lyme disease. Current guidelines are ‘better’ than the previous guidelines in that they allow three weeks of oral antibiotics, and then another three weeks of an alternative course of antibiotics. However, they do not provide guidance on other possible tick-borne infections that doctors should consider, and do not significantly address the issue of chronic persistent Lyme. The wording, specifically from the 2018 guidelines, to address the chronic disease state, is:
‘Explain to people with ongoing symptoms following antibiotic treatment for Lyme disease that:
continuing symptoms may not mean they still have an active infectionsymptoms of Lyme disease may take months or years to resolve even after treatmentsome symptoms may be a consequence of permanent damage from infectionthere is no test to assess for active infection and an alternative diagnosis may explain their symptoms.’Comments from individuals in patient groups include:
‘I would say that the NICE guidelines fail to acknowledge uncertainty, and base their findings on very weak and questionable scientific papers, ignoring basic science and other types of evidence. Their evidence review was very narrowly focused on clinical papers published more recently, which meant that some of the more interesting research that happened earlier and different types 4of research were not included. The final recommendations were to some extent a slight improvement on past policy and practice, for instance, it was recognised that there wasn’t always a rash and that Lyme disease existed more widely than was previously advocated. However, these are only some slight changes and not enough to bring about better diagnostic practices. In particular, the guidelines around testing interpretation are extremely restrictive and fail to acknowledge the poor quality of outcomes from testing, thereby excluding a lot of patients with negative test results. This of course leads to cases being missed, and again, as suggested earlier, is circular reasoning. If you exclude people with negative test results from a Lyme diagnosis, you can argue that anything that happens after that isn’t Lyme disease but something else. It’s a self-perpetuating paradigm which leaves no space for individual, contextual, clinical history, and assessment for those at risk.’
The Irish guidelines discuss prevention and diagnosis of Lyme disease but do not go into detail on treatment. Most Irish consultants choose to follow the NICE guidelines or the IDSA guidelines.
Testing and numbers of cases
The numbers of cases in the UK and Ireland are hugely debated. You must get a lumbar puncture to count in Ireland, and you must have a laboratory diagnosis to count in the UK. So while Ireland says there are fewer than 20 cases annually, and ‘guestimate’ maybe 200 to give ‘lip service’ to the patient groups, there may be as many as 2500 in Ireland based on my estimates. Meanwhile, the UK records around 900 cases per year, but this number is based on strict serological (blood) testing; this does 5not include those with the EM (bull’s eye) rash that did not get a test, and many tests are called ‘false positives’ where indeed they could be weak positives. Also, many with Borrelia infections never get a positive test. The current official estimate for the UK is around 2000 to 3000 new cases of Lyme disease per year. However, a study in 2019 concluded that the number is more likely to be around 8000. Without accurate diagnostic tests the debate will continue.
When patients present themselves with the results of alternative testing, not ‘blessed’ by the UK and Irish authorities, they are told these tests are not accredited or not validated. However, these results are often from private laboratories accredited by the International Organisation of Standardisation (ISO) within the EU. The same UK and Irish authorities sub-contract to have testing done for other infectious diseases to these same laboratories, and utilise these tests in the public hospital system to assist with diagnosis; and indeed use these test results to influence patient treatment. On the other hand, some of the UK tests which are accepted are not ISO-accredited. Thus patients are in a difficult position trying to understand the double standards involved.
GP education
While the UK and Ireland state they have education and treatment regarding Lyme in place, this mostly consists of websites with some basic information, which practitioners seldom access. In both countries, there is an attempt to downplay the extent of Lyme disease and the presence of co-infections, and there are no robust training programmes for GPs to assist them in early diagnosis and early treatment. GPs in some areas are requesting more education because they feel the NICE guidelines do not meet their needs. The Royal College of General Practitioners (RCGP) ran a one-year Spotlight project which resulted in development of an online ‘Lyme Disease Toolkit’ (www.rcgp.org.uk/clinical-and-research/resources/toolkits/lyme-disease-toolkit.aspx). 6 Training materials were developed but the project was shelved before many courses could be run.
Denigration of patients
Lyme disease is extremely politicised in the UK and Ireland and, rather than embracing new challenges to support and better understand patients, they are denigrated if they do not get better following standard treatment. If patients go to health practitioners with a history of Lyme but negative tests, they are given alternative diagnoses. In many cases these are psychiatric diagnoses, and many complain of being treated unkindly and disrespectfully by these doctors.
Access to private care
To access private care is quite difficult in UK and Ireland, and many patients travel internationally to access therapy. Only the well-off can get private appointments and private treatments, which they have to pay for themselves. No support comes from the public or private healthcare system or insurance companies in the UK or Ireland.
A number of doctors in the UK and Ireland who treat chronic Lyme and co-infections in a way that does not accord with the official ‘guidelines’ have been faced with Medical Council investigations. However, when the same doctors treat patients ‘off licence’ or extend or change treatment for other infectious diseases that do not fit the ‘guidelines’ they can do so without consequence. Many infectious disease doctors extend treatment for bone and soft tissue infection for periods well beyond the ‘guidelines’ based on their clinical assessment of the conditions, and are applauded as the patients get better. When what we call ‘Lyme-literate’ doctors (those who understand the condition 7clinically) do the same, they are criticised or even formally investigated by the Medical Council as they are not following guidelines or are prescribing ‘off-licence’. The common situation is that patients get better, there are no complications from the carefully monitored treatment, and the patients have no complaints. However, complaints come from other doctors or authorities who are not patients because they disagree with ‘non-guideline’ based treatments that have got patients better. This does not happen for other diseases, which once again raises the question as to the motivation of the UK and Irish doctors and medical authorities.
Political activity
Patient groups have tried to work with National Health Service (NHS) bodies in the UK and the Irish Health Executive (HSE) without much success. They are rarely included as a ‘token’ on committees, and their concerns for the recognition of chronic infection with tick-borne infections are largely ignored.
Patients from UK and Ireland have approached governmental authorities to be their champions and advocates. Very few have had the courage or insight to support these patients in a sustainable way, and any action seems to be directly related to political rather than humanistic and medical concerns. A few shining stars include Mark Mc Sherry TD in Sligo Ireland, Alexander Burnett MSP and Donald Cameron MSP in Scotland, and Michelle Donelan MP and the Countess of Mar in England.
In the UK House of Commons, an All-Party Parliamentary Group on Lyme disease was formed but, although there was good initial interest and several meetings, interest appears to have waned and the group’s website is no longer functioning. In Scotland, a parliamentary motion by Alexander Burnett MSP led to a 2017 debate in the Scottish Parliament on ‘Lyme Disease: the Need to Do More’.8 Despite demonstrating a good understanding 8of the issues, little more has actually been achieved since. A patient petition lodged in 2017 has taken so long to be considered by the Petitions Committee that the committee membership has almost completely changed since the first meeting was held.
In Ireland, the patient group Tick Talk called for a public hearing by the Irish Government’s Medical Committee in the Irish Oierechtas. At that committee, members of the Department of Health and Infectious Disease consultants from throughout Ireland made an unexpected submission which pilloried both the patients and the clinicians treating patients outside of the guidelines. This was all recorded on YouTube. It is difficult both for patients with chronic infections and for doctors looking after such patients to experience such ‘stabs in the back’ and to lack support to assist patients chronically infected with these treatable infectious diseases.
Summary
In summary, the situation is bleak in the UK and Ireland. There is an unwillingness for the ‘powers that be’ to look at all of the scientific literature on tick-borne infections. The guidelines fail to be ‘inclusive’ and cherry pick the research articles they use to support their biased point of view. The UK NICE guidelines have excluded all studies of Lyme from before 2001, although many of the sentinel studies to support chronic persistent infection exist in this literature. Is this an innocent oversight on the part of Public Health of England, or an intentional omission?
An individual from one of the UK charities has summarised the situation as follows:
I think it’s really quite astounding that an illness that clearly is increasing at an exponential rate, and that is now a risk in many different environmental physical situations, including gardens, allotments and parks, etc, should not be considered9a priority for research, or policy development. I believe that the problems lie within the Department of Health, within which there is a reluctance to acknowledge any issues that need resolving and where there’s a lot of scepticism about what needs to be addressed.
Tick-borne infections are increasing worldwide, with evidence of spread in the UK and Ireland. We are taxpayers, paying for governmental health representatives and clinicians. Instead of supporting Lyme patient groups, the medical community has denied support and treatment, failed to listen to patient representatives and failed to support research. Government has failed to provide a support framework or funding to support the well established condition of chronic tick-borne infection. To deny that chronic Lyme disease occurs is to deny the right to a decent existence for UK and Irish patients, which is indeed a ‘human rights’ violation. Having been denied medical care and support, patients reach the conclusion that taking legal action based on being denied basic human rights is the only way forward: against the UK NHS and Irish HSE and DOH which do not recognise their plight; or against doctors who have failed to adequately diagnose and treat them. 10
Chapter 1
The problem of Lyme and other crypto-infections
Microbes have coexisted with human beings since the dawn of time and, for better or worse, they have contributed intimately to the organic balance, not to mention the structure and components, of our cells. However, understanding the role of microbes in the genesis of diseases is a long-term task that is far from complete. New microbes emerge regularly, such as the SARS-CoV-2, the new coronavirus responsible for the Covid-19 pandemic.
