professor christian perronne – transcript · professor christian perronne – transcript recorded...

Professor Christian Perronne – Transcript Recorded December 23rd 2019 (edited for contextual understanding)

Sharon Whiteman

So, ladies and gentlemen, my name is Sharon Whiteman and I'm on the board of the Lyme Disease Association of Australia and it's my great pleasure and privilege to have Professor Christian Perrone tonight, we're recording this on the 23rd of December just before Christmas. And part of our intention of the board of the LDAA is to offer our Lyme disease patient community in Australia and New Zealand some hope and to recognize that even in times where it seems hopeless which so many people have been expressing to us, that there's people…... And I'd also like to say that our Australian doctors are effectively silenced either through being deregistered or restricted in their practice, but the world's watching and the world is standing up for us and Professor Perrone is one of those. So, I think in times of trauma it's really important to be seen and to be heard and to be believed and these doctors in this short series of a global view on Lyme disease is going to demonstrate that to you.

So, you may not have had the pleasure or the privilege to know anything about Professor Perronne. He's an MD, PhD qualified in internal medicine. He's a professor of infectious and Tropical Diseases at the University of Versailles-St Quentin, France. Since 1994 he is the chief of the Department of Medicine at Raymond Poincaré University Hospital in greater Paris, University Hospitals Group. He had major responsibilities with several institutions including Pasteur Institute in Paris. He's the vice director of National Tuberculosis Reference Center, French College of Professors of Infectious and Tropical Diseases he's the chair. French National Technical Advisory Group of experts on Immunization, he is the chairman; French Drug Agency, chairman of several working groups making evidence-based recommendations. Superior Counsel for Public Hygiene of France the chairman; French High Council for Public Health, chairman of communicable diseases commission. National Council of Universities, chairman for infectious and tropical diseases; European Advisory Group of experts on Immunization at the World Health Organization vice chairman. He was principal investigator of several major clinical trials. He's the author or coauthor of more than 300 scientific publications in peer reviewed journals. Since 1994 Christian 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 or stealth infections and is the co-founder and vice president of the French Federation Against Tick-borne Diseases and president of Its Scientific Council. He is author of a book, “the truth about Lyme disease.” Professor Perronne, thank you so much for being here tonight.

Professor Christian Perrone

Thank you, Sharon. Good evening. It's morning here which is the evening in Australia. I'm very glad to be with you today.

Sharon Whiteman

So, can you tell us a little bit about how you ended up being involved in championing Lyme disease patients from the beginning?


I was very young, at the time I was a young resident and my senior Registrar came back from the US, from the CDC in Atlanta, he was there for another topic Legionella, but he discovered at the time that he was speaking in the US about a new disease. It is not so new we know now but it was new at the time and he came back in his pockets with kits to revise culture of Borrelia burgdorferi and also serology and he was the first guy in France to consider this disease and to do something to diagnose patients. So, I've learned a lot with him, and he got a position of Professor in infectious disease in the hospital where I work now and years later unfortunately he died young and I was nominated Professor in this hospital 2 years after his death. He created in France the first national Reference Center on Lyme disease, it was in my hospital but as he was dead the Reference Center was moved before I arrived 2 years later to the Pasteur Institute in Paris but at the Pasteur Institute they didn't really believe in Lyme disease, they were not very well motivated and they didn't do anything. So, after that the center was moved to Strasburg in the eastern part of France and there the experts are very strongly anti-Lyme minded and it was a big problem in France, but I will always continue to take care of the patients.

Sharon Whiteman

We were having a chat earlier and you found that patients even though the medical advice at the time was that 3 weeks is enough for you consistently were noticing some patients relapse after that and needed longer.


Yes, when I started to take care of Lyme patients it was in 1994 and later and at the time the controversy was not so difficult because it was published in a major medical journal the New England Journal of Medicine, the Lancet that you have patients with positive culture of Borrelia burgdorferi of the tissues with negative serology. It was not a real controversy at that time, I don't know what it became afterwards. So, it was something that was acknowledged in the medical literature and in my personal experience because at that time the recommendation was to treat for….. persistent cases to give 3 weeks of antibiotics. Many people were improved after three weeks but the problem is that when I stopped the treatment they relapsed afterwards. So, I didn't understand why at that time and I could treat them once or twice and more and always they experienced a relapse. So, I saw that there was a big problem and when I discussed with my colleagues who didn't believe in the disease and they felt that the test was perfect and that a three-week course of treatment would cure everybody but we know that all this is a big lie.

Sharon Whiteman

And so, you've gone on now to persist and actually that situation has changed, there's quite a lot of controversy in France now, isn't there?


The controversy in France is still ongoing. It was much better a few years ago because at the time the Minister of Health, she changed afterwards, was convinced that there was a huge medical problem that many French patients, thousands of them were in medical wandering, they couldn't find any solution, they suffered a lot but they were completely rejected by the medical system. And at that time, the minister said that publicly in the media and she launched big French national plan for Lyme disease and other tick-borne associated diseases. So, we worked together with anti-Lyme and the pro-Lyme people and we could write together a text that was not perfect but was rather good texts compared to what existed before. But unfortunately, during the last meeting with the other people who didn't agree completely they said okay we’d sign some texts, we agreed and two days later they sent an email to the whole France saying this text is a scandal we won’t sign it. I don't know what happened in 2 days, but I think they had huge pressures from different lobbyists to say no you should never sign this. And unfortunately, these people who were in the group could influence all the French learned societies and in those societies only a few people spoke with not the whole society, there was no democratic interview of all the members of the society, just a small group said okay we don't believe in chronic Lyme. And it's a pity because when we were in the group we could rely on scientific evidence because the fact that serologic tests are not perfect it's completely proven in the medical literature that there is no single text proving that serology is 100% reliable as many people continue to say, it's completely fake information. Because if you look only at Borrelia burgdorferi there is a very good meta-analysis published by Cook and Perin in 2016 showing that only for Borrelia burgdorferi sensor stricto, there is less than 60% sensitivity for the test and that's only for once spacious but we know that there are several species for the group Borrelia burgdorferi sensor latu and for the other species there is not a single test. We know now that you have 10 or 20 species of borrelia who can keep exactly the same disease but that's not included in the serologic kits so you can never diagnose all these people.

And for the persistence of borrelia after 2 weeks or 3 weeks or even 1 month of treatment is not fully demonstrated in the medical literature that borrelia may persist because borrelia when it is attacked by antibiotics and sometimes also by the immune system they switch from this spirochetal form, mobile form to a round and mobile form, they hide in the tissues, in biofilms and they escape the antibiotic. It is not a true resistance because they remain susceptible and sensitive and they grow again afterwards, the antibiotics is still working so it's an escape.

So, you have studies invitro many of them; you have studies in the animals especially Monica Embers

in the US did a really fantastic job in monkeys, in macaques showing that borrelia was persisting after several months of antibiotics. And you have, I think, 20 Medical publications in very good journals showing that you can recover borrelia in culture by PCR. PCR is the amplification of the DNA of bacterium even after several weeks or month of treatment, all that is proven. Why the international medical community doesn't read the medical evidence? They should change their glasses I think.

Sharon Whiteman

So, again the denial of chronic or persistent Lyme disease is also nonscientific.


Denial is not scientific at all because we have also proof in the medical literature. But you have misinformation which is lead by the Infectious Disease Society of America and we know that people in the IDSA and in CDC in Atlanta are corrupt people. I say that publicly because I signed this with Jenna Luché-Thayer she was an American woman who….. a government organization in Africa, in Asia, everywhere, she was in herself and we went to Geneva at the United Nations, with 2 special rapporteurs and we co-signed public reports about that, where we say that there was in the US a legal corruption authorized by the law because all of these people have the patents on the very bad serologies that are marketed everywhere in the world. They win a lot of money and they're able to block any new tests that could be much better. How are they authorized to win a lot of money on that test and to block a new good test, that's not ethical but it’s authorized in the US and that’s a major problem.

Sharon Whiteman

And so, you think that that challenge in the US is reflected in Europe and obviously here in Australia as well?


And I think that there's a small group of experts in the US who said for decades that Lyme disease is a rare disease, it is very easy to diagnose, very easy to treat. They organise a system, I don't know in detail how they did that, but they control all the medical societies in the world. They control all the national reference centers in every country, and they copy the same sentences without any scientific reference, and they influence also governments. So that's a huge medical scandal worldwide.

Sharon Whiteman

And I know a few days ago when we had the same kind of chat with Dr. Horowitz he was saying that there is no other disease that is so politicized like Lyme disease.


Of course, there is not the single other disease with this same denial. Because in France a biologist was sentenced to jail and 200,000 euros penalty, she was fired from the Board of Biologists, her lab was closed because she did Western blot that was more sensitive than the official Western blot. Do you imagine another disease if it is tuberculosis, I don't know what, where people condemned at such major penalties just to try to do more sensitive test? And when you see all these physicians everywhere in the world fired by some board of physicians because their only crime is to treat patients who are suffering and they cure some of them and they improve their medical condition, why are all these physicians attacked? It's a great scandal. Fortunately, in the US because I think that US government is realizing that they were in a very bad condition, there are millions of patients with Lyme disease now in America, the attack against physicians has nearly stopped. I know one or two cases sometimes but now they are protected by laws and the great news if you follow the news just a few days ago there is a new law in the US who I think goes on our side and protects more and more the physicians and will give a lot of money to fund research. Because I think the biggest problem with Lyme for 30 years there was not a single funding for research. Now it’s changing and the good sign for me is that pharmaceutical industries are coming back into the area. Before they were completely out, probably people said that no don't go Lyme is very easy to diagnose, to treat, there is no money to make. Now they are realizing that there are lots of people infected, millions and millions everywhere; there are lots of species of borrelia that are not even diagnosed today so they have to develop new diagnostic tests. We have a lot of co-infections with Rickettsia, Francisella, Coxiella, Bartonella, Babesia and so on or maybe vaccines. So, I think now the industry's changing and that's a good sign for us because some major funding in the medical field come from the industry.

Sharon Whiteman

Yeah and sadly in the United States a Senator had to die before that action to really get across the line, isn't it?


Yes, that’s a pity and this Senator died from a viral infection - Powassan virus. That shows that tick-borne diseases are not only bacterial you have borrelia and all the bugs that I talked about but also parasitic, babesia, now we are finding in my own research Theileria another parasitic form well known by the vets but not by the medical community. I think that in the cases of failure of treatment with antibiotic, anti-parasitic drugs some patients are infected with viruses. And we know now it's not yet very well published

but we got some work showing that some viruses may have a chronic course in humans and may probably be involved in this chronic causes of the disease.

Sharon Whiteman

Professor, what are your thoughts on the global prevalence?


Oh, it's difficult to give a number because as you know all the numbers are based on the current serology which are bad and only Borrelia burgdorferi sensor stricto extended in some countries to other species garinii and afzelii and with a very low sensitivity cut off so I think all the numbers are highly underestimated. But now if you look at the official recognition in the US they acknowledged for more than 2 million patients, I think it's much more. With some European researchers we made an estimation in Europe unfortunately it was not published because we were rejected in all the medical journals. Unfortunately, the journals are controlled by our opponents and they rejected papers which do not support their thoughts. We estimated it was really strict minimum more than 1 million new cases each year in Europe. So, I think there are millions and millions and even if it's not the Borrelia burgdorferi even sensu lato giving the Lyme disease we know since the 1920s from Charles Nicolle who was a French expert, he was directors of the Pasteur Institute in Tunis in Tunisia and in the 20s he published about relapsing fevers in Africa and he said that many chronic inflammatory diseases, degenerative diseases were due to chronic infections. And he showed at the time that many high-grade fever cases in Africa were not due to malaria but were a consequence of borrelia infection. It's still the case now because you have more recent studies confirming that from French teams, American teams, African teams that you have no diagnostic test developed for relapsing fever in Africa, why? And if you have high grade fever Africa they said okay it’s malaria, if the test is positive no problem. But if the test for malaria is negativity they say, it’s a test negative malaria case. Okay for malaria is accepted. But you're not allowed to say it maybe a borrelia case was negative test because there is no test. So that's a great scandal. Why? Because we are not allowed to speak about Lyme disease due to an American policy. Why can’t we have access to diagnosis in Africa, Asia, everywhere in the world and in Australia? I saw that your government said that it is no longer Borrelia burgdorferi in ticks, I think it's a fake news because you have several publications which showed that Borrelia burgdorferi could be found in ticks, many people were contaminated I saw the references about that. And even if it's not in some cases Borrelia burgdorferi it may be other species, Australian species, it may be other species rickettsia species. We know that rickettsia may give a chronic infection. It’s not nearly one century when we had the epidemics of typhus with rickettsia, it could be chronic in some cases. You can have Coxiella burnetiid, Q fever they are frequent in Australia normally diagnosed with serology, but I have many cases now with positive PCR and negative serology. So, we think now that serology is not very good for this disease also. So, it's not important just to focus on Borrelia burgdorferi sensu stricto there are many more bugs involved.

Sharon Whiteman

That's a very important point, isn't it? And are there other diseases that would set the precedent where there's not a blood test for or whether there's scientific or medical uncertainty or a gap where patients are denied medical and health care like the cohort of Lyme patients are?


I don’t know another disease like that where patients are rejected but now that we were looking more at the accuracy of serologies I realize now that several of these are very difficult to define the cut offs. Because for example when I was a young physician for me brucellosis serology was perfect but now it's published but you have many cases of several sero-negative brucellosis. The same thing I discovered from Q fever; it is the same thing for many. Why this? Because if you are an Elisa manufacturer, the machine is automatic, it's not the fault of the machine, you have to define the cut offs on populations of patients and controls. If I think the example of HIV it was very easy when Montagnier and the others could capture the HIV virus because you could take 100 patients be sure that they were HIV infected by culture and then you calibrate your machine to have more than 95% positive. Then with your machine you go to blood donors, healthy blood donors and you check that they're less than 5% false positive. So, it's very easy to calibrate. Of course, it's never 100% in medicine but if you cross with two different techniques to reach nearly 100% accuracy.

In Lyme disease it was impossible to do that. But why don’t they don't recognize that? It is completely published by the European CDC, you have the American CDC in Atlanta, now we have ECDC in Stockholm that published a very good report in 2016 saying be very cautious about on this perfect serologies which are heralded by national reference centers and manufacturers because these serologies were not carry calibrated, were not defined on good populations. How can you select from the population 100 patient with Lyme disease and you are sure they have Lyme? It's impossible. Signs and symptoms, either there are symptoms only subjective: pain and fatigue, you cannot measure it or if you have objective signs, all the patients have objective signs, the ECG is not going well, you have palsies, you have joint problems, arthritis, the MRI is not normal and so on. But these anomalies are not specific of Lyme disease, you can see the same thing in other diseases. So, it's impossible to make, for example, a clinical score that is possible in other diseases, then you should rely on biology but it's impossible to have gold standard in biology because culture is not often positive from some blood at least. If you remember Willy Burgdorfer said if you want to search for bug in the blood it's very difficult, it's better to take a piece of brain. But I cannot take the brain of my patients.

So, sensitivity of culture is poor, PCR the amplification of DNA is not so good at the present time, it is maybe good but not sensitive enough. So, it's impossible for defining population of ill patients. So, if you look at the official recommendation which were completely officially published by the IDSA, by the European group that was called EUCALB the European Union Concerted Action against Lyme Borreliosis; they said the serology should be defined only on healthy blood donors. It’s completely stupid to define the cut offs on healthy population but that is a law and they put the cut off at 5%. It's not allowed to detect more than 5% Lyme people in Ratana community. It's completely stupid because in some areas in the world much more

than 5% of the population has antibodies. I don't say that they are all ill because you can have antibodies and be in good condition, but they have positive antibodies, but they are not allowed to be detected. So, it's not a scientific approach.

I have one of my colleagues who is a vet biologist saw how serologies were accepted and recorded by the different countries and authorities it is the same thing in France. I asked the drug agency which is in charge of the validation of the kits they say, oh, we compare with the previous test which is officially recognised. But the previously officially recognized test are not good, it is proven by meta analyzes and my friend he came back in history to see what was the first test that was recommended in the US which served as a gold standard to compare another further test. And it was a test published by the CDC in Atlanta saying we have done a very good test done by reference lab with a reference technique so it's perfect. And when experts wrote to the CDC to say, what was the reference lab? What was the reference technique? They never answered. You should see interview by Willy Burgdorfer, and they are asking, and he says they gave the results of the serologies before doing the research. Willy Burgdorfer said that himself because he knew that at that time, so that’s a pity. These serologic tests for me has strictly no value.

Sharon Whiteman

That's a big challenge that it is for treating patients, isn't it? Because that's what doctors are taught, one test, one disease, one treatment. So, your experience what is best practice for this situation? You've got a patient presenting with symptoms and they've got negative serology, what's your advice for doctors?


In France, the report was published in 2014 as the high council for public health has been asked by the minister of health at that time to make some recommendations and a report about Lyme disease and the experts were not experts of borrelia. There were not a National Reference Center because they wanted independent experts not too much influenced by the Infectious Disease Society of America. And this people who were high level researchers were amazed to see the low level of evidence of serology, they say that it was not good, they saw that there are many borrelia species or coinfections. I was not in the group because I was the Chairman of the Council, but I don't want to be inside because they would say that I would have influence so I'm happy not to have been inside at that time.

But what they wrote, I was very glad it was exactly what I was thinking. They said either we wait 20 years to have good scientific results or we abandon all these patients. As we have no accurate test today either for borrelia or no test at all for the other species of bacteria, parasites we should recommend at least one-month empiric antibiotic treatment. Empiric means it's used as a diagnostic test. We do that sometimes for tuberculosis because all cases of tuberculosis are not proven by culture or serum and it's recognized in by official medical authorities everywhere. It's accepted for tuberculosis but not for other diseases. And they said we should recommend that in France that the GPs could treat it they have a strong feeling that it could be Lyme disease, the test is negative, they have another disease that’s not present so we should try and if

there is a response, the response may be an improvement or sometimes may be at the beginning worsening because of the Jarisch–Herxheimer reaction then the physician should be authorized to continue the treatment longer.

But the High Council for Public Health published report on the internet in French but it was not really a very strong recommendation that could be followed by all the communities. So, more recently it was published last year in June 2018, the High Authority for Health, HAS is a group where I participated in this group but also with anti-Lyme people with the National Reference Center, we said the same thing. So now in the official French recommendations it's written that any GP can try a one-month empiric antibiotic treatment to see if there is a response in his patient.

Unfortunately, all the societies needed by the National Reference Center was very upset by this text because it was the official recognition that their diagnostic serologic test was not good at all so they couldn’t accept that. So, they organized the huge lobby to block these official recommendations. And if you’ve seen the literature the French Infectious Disease Society published recently the so-called guidelines, the new French guidelines about Lyme disease they are terrible, they're worse than the ideas. Because they are not official at all, they are not recognized by the authorities. Unfortunately, the French official guidelines are only written in French not in English so there is misinformation, and this is exactly the same thing in the US. If you see last year in November 2019 the official working group, the tick-borne disease working group of the US Department of Health and Human Services published a very good report, they said diagnostic tests are not very good. They say we ignored before many other species and co-infections; treatments we have never been correctly evaluated; there was no money for research and so on. Everything is written even for the so-called PTLDS- Post-Treatment Lyme Disease Syndrome, it was a very bad syndrome invented by the IDSA to say all these patients who continue to have complaints after two- or three-weeks antibiotics it’s in their head, they are not really ill it's psychosomatic and so on. Now it’s fully written and among all the possible factors including psychosomatic factors but also environmental factors you may have the persistence of microbes: bacteria, parasites and viruses, that's a major point that PTLDS is not anymore a post infectious disease syndrome, it may be a persistent infection. So, this official report from the American Minister of Health was a major breakthrough. And it's completely amazing to see that the Infectious Disease Society of America, the IDSA published recently the so called New American Recommendations that are terrible, they are worse than their own so-called recommendations of 2006. It is written in a paragraph; you shouldn't look for Lyme disease in people with neurologic syndrome. You should not look for Lyme disease in patients with joint problem. You should not look for Lyme disease in patient cancer proven. You should not look for Lyme disease in patients with psychiatric problems and so on. So, there are horrible recommendation and if you look there was a very important protest worldwide with more than 80 or 90 organizations who wrote response one point by point and based on scientific evidence.

Sharon Whiteman

So that's all pretty bad news really, you know, that looks like…. but on another level, they're sort of backing themselves into the corner that it’s all obviously biased and non-scientific.

I mean, on one hand, it would seem very hopeless and very bad news but for patients today, it's also like they're backing themselves in the corner because it's so ridiculously non-scientific.


Yes. I think I'm at the same time optimistic and pessimistic because when I look at the medical literature and the results of recent publications coming from different countries the scientific evidence is on my side, is on the side of the patients, is on the side of the Lyme doctors. But where I am a little bit pessimistic I see that especially in Europe and also in Australia and in other countries all the health societies, the governments are more and more opponents to the Lyme disease cause and I see the same thing in France where the former minister was very open minded and it was going forward with your recommendations and now for 2 years is terrible because the Academy of Medicine, all the medical societies made a huge lobby to some Governments to obtain that they nominated clinical reference centers where the physicians are strongly anti-Lyme and I was candidate to be a reference center but I was rejected because they said I was too close to the patients. You know for physicians it's a huge problem to take care of his patients. It is not normal now if you look that way they are badly minded.

So, now in France it's going back. I think it will go in a good way in the near future. Fortunately, I have the support of more and more patients, the support of the media and the media’s support is important, I think.

Sharon Whiteman

And do going back to the fact of being a denied a very vilified disease, what is the impact? You know, in Australia our survey shows that it's on average 10 years to diagnosis, what's the impact of delayed treatment because of that denial? What do you see in this cohort of patients?


It may be very long because I see patients sometimes they have three decades of suffering, of medical wondering. Some saw 18 physicians, 20 psychiatrists before finding a Lyme doctor who sometimes cure them in a few months, so that's terrible. It's the same thing everywhere. So, it's not only I cannot do a mean duration of wandering but it's very important. And some administrators in the word afraid saying if we follow the Lyme disease cause because it would be a future medical cost for the community. That's completely stupid because so wondering during two decades it's a major cost for the societies, it is a direct cost of the disease but also on the indirect costs you have the sick leave to pay, you have all the hospitalization, thousands of non-useful examinations, MRIs and so on. And with some Belgian University colleagues, we just wrote an article about that which we submitted a medical journal, so it's not yet published. But so, it's stupid to be narrow minded to think that because if you cure somebody who is ill for 20 years with six months of doxycycline with a bit of hydroxychloroquine. They are generic drugs and they just cost a few bucks, it's not a good way of seeing things. But as you know, in the United States as in France we have most of the medical insurance is public but with a compliment with private companies but in the US is mainly completely private we know that the insurance companies for medicine gave a lot of money

to the IDSA experts to say that Lyme disease doesn't exist but it was proven by judges, they were condemned, they escaped the tribunal because they were protected but there's a new trial going on now, that's not normal. And I think all these insurance companies are not well advised because he could cost less treat these patients.

Sharon Whiteman

Yeah, then to look after them through disability and lose their productiveness in society and their jobs and their careers and their communities.

And so why do you think, what is it that you'd like to say to…. like in Australia as far as I know, there's only 1 infectious disease that's openly supportive of Lyme disease and has been for a long time, he's one of the doctors that you'd say he's been in the trenches and then there's a couple that I know sort of around two or three that are sort of not 100% against it but it's such a terrible situation for doctors that they don't stand out. What do you say to infectious disease doctors that stay entrenched in the position of like in Australia it says there's no evidence of Lyme disease in Australia?


Because I think that when there are all these denials started in the United States the experts from the IDSA controlled all the major editorial committees, all the major medical journals - the New England Journal, the Manson journal; they could publish or what they wanted even if it was not evidence based. If you look at all the articles published in the New England journal about Lyme disease the methodology is very poor, it's not usual for such a prestigious medical journal. But if a physician in Europe, in Australia reads paper is the New England Journal for them it's medical the Bible, they say it's a truth even if it's completely fake news.

So, I think these medical publications completely misled all these physicians. Because now young physicians rely only on publications, they want everything to be proven. So, if you have not a serologic test which says Lyme is a certitude they say no we can treat. That is a bad evolution of medicine now because when I was younger my former bosses were much more open minded, at that time many diseases were not completely proven, and they had their own personal experience they could publish about it. If I published that I cured many patients with this diagnosis or this diagnosis now I'm not accepted in the journal they say what you said is impossible. Why do they say it’s impossible? I did it.

I think that's we were attacked by the huge lobby which is anti-antibiotic. And I it's funny because I was the first in France to alert the minister at that time it was a long time ago about sometimes the access of prescription antibiotics for viral infections and so on. So, I was very much concerned by that. But now the huge problem of antibiotic resistance is first the use in animals. Officially now in Europe it's not allowed anymore but we know that it continues a lot in the US. And in humans, the major problem is in hospitals, people in intensive care units with cancer, with chemotherapy, very immunoexpressed and the big resistance problem is with hospital molecules, hospital antibiotics. If we give more doxycycline or amoxicillin the simple old antibiotics for people in the community that's not a problem really for the

antibiotic resistance issue in our country but our opponents they make the confusion and say, oh, look at all these Lyme Doctors were foolish people, charlatans, they give antibiotics for tired people, people who have pain in the toes and they it's a great menace for the health security. That's completely fake information.

Sharon Whiteman

And so, what do you think are the solutions Professor Perronne?


The solution is to be open minded, to fund research, to fund research is also not only to fund the current official labs recognized by IDSA and national French centers because they will take the money to make bad research and to say we confirm that Lyme doesn't exist. So, money should be given be a call, a public call for projects and the attributions, the dispatchment of funds should be under the control of association of patients. Because what is terrible in Lyme? When I started my career in medicine it was the beginning of AIDS, the patient's, the HIV positive patients were present everywhere. They were present in National Agency for AIDS research, they were present in the scientific council, the board of the agency. I was the younger physician responsible for clinical trials I had to discuss with the representatives of the patients the patients and it is recognized in any disease not in Lyme. So, the first thing is to give a little bit of representation to the patients to say no we don't agree you give this money to a lab who is strongly against the disease.

And also waiting for the results of research we should authorize in other countries to do what was recognized in France. But now it's a bit control attacked to authorize any GP to give an empiric antibiotic treatment as a diagnostic test and to allow longer duration of treatments. Of course, I can hear now all of the authorities saying he is saying stupid things, we cannot evaluate all of this. We agreed in France where it has been done but all the evolution of the science symptoms and all the different treatments given should be recorded on databases to evaluate that as a scientific approach and to follow a cohort of patients because they say Perronne he says he cures people but it's not true, it's just a guru effect I don't know why. I published that I cured hundred patients, but they say it’s an open study, it is not good. If thousands of physicians published and their data was good registering of clinical data in the time, what happened? Did they receive? What is the result, many are cured? It would be a major point. And after that will be convincing funding bodies to give money to make a good randomised study to confirm all that. But all the randomised studies against placebo were very badly defined, they are all short. The maximum was three months, it's too short three months. Three months is good for some patients but not enough for others. At three months, if I was doing the evaluation they did in the New England Journal of Medicine my results would be very bad because at three months of 20% of my patient are very happy, they say thank you, you saved me but 20% are very upset saying I’m much worse than before the treatment and they want to attack me. And most of them they have some signs and symptoms which are going better, some are still worse. But if you wait one are two months more you can see that these people are much better, and they are going

toward recovery. But they stopped the studies much more too early so it's impossible to conclude but they conclude no, no it’s done we have done the randomised studies, it's finished. So that's not honest in the scientific point of view.

Sharon Whiteman

So, your advice then to the doctors in the trenches and patients and family who are facing this very long-standing denial, what would you say to them? Where's the hope in the future? I know you say science.


I know that it's very difficult to find an open-minded physician who could give thorough treatment and if it's not possible some can go abroad but it may be very expensive, and treatments are not reimbursed in many cases. Otherwise you can use also phyto-therapy because now I use it more and more, it's very effective. I don't use it at the acute phase of the disease but mainly at the maintenance phase and thanks to that I see less and less relapses.

Sharon Whiteman

Is that like ozone?


Many plants have a strong anti-infectious effect so they are not toxic and turns out very current herbs that we can use in the kitchen also but at the good dosage. It really works, it saved many people in many countries who didn't have access to pharmaceutical drugs. I don't say that it's ideal, but it can be a possibility waiting for better times.

Sharon Whiteman

What’s your comments on the human rights of people to have Lyme disease included as part of their differential and to have doctors actually looking at the science as opposed to sort of the repetition of non-scientific dogma?


I think the denial of chronic Lyme disease it's a strong violation of human rights. And I co-signed with General [name missed56:31] 2 reports that we gave to special rapporteurs in the UN because it's not normal

that the whole world or the whole continents Lyme disease patients or patients with other kinds of borrelia relapsing fever cases and other confections are not recognised, have no access to good diagnostic tests, have no access to treatment; they are rejected and sent to psychiatry and they are completely for the severe cases they are handicapped, they cannot work anymore, sometimes they lose their husband or their wife and they lose their job. A lot of them commit suicide. It's difficult to have an accurate number because when you commit suicide is never due to Lyme it’s is due to depression but through the associations of patients everywhere we know that we have thousands and thousands of suicides due to Lyme disease because it's impossible for patients suffering so much for years and years to hear every day it's in your mind, you're not ill, you invent your own symptoms and so on. So, it's a true violation of human rights.

Sharon Whiteman

And so, for someone watching this today that might be feeling some of those things, what would you say to them?


I think now the governments cannot stay like that without acting. It's not normal because I think all these people, politicians have access to the data. Of course, a politician is not able to read a scientific paper, but they should not only rely on the same people. But it's very difficult because all the institutions and all the countries are following the IDSA. So, I think the only way to change things now is to rely on the media because the media presents populations, they can present in the journals on the TV cases of people who were ill for 20 years and who now recovered from paralysis and so on. And this has a major impact on people, and it may have an impact on politicians.

I see in France, for example, the current times the minister of health was is going back but more and more parliamentarians, senators are now in my favor and they wanted to pass laws. Recently a law which was asked by a group of parliamentarians was rejected by the government, it was voted at the Senate. But when the two chambers are in opposition they should have a common group, working group to say we agree or don't agree but it was rejected recently after the pressure from the French government. But I can tell you today that many parliamentarians, senators are very upset by that. They see everyday people in their town, in their circumscription who are suffering every day, the parliamentarians are senators are like physicians they see people coming to complain and I think that this political support will be rising in the future.

Sharon Whiteman

I think that you're right Professor Perronne that there is hope and that not only people like yourself and Dr. Horowitz are speaking up, but politicians are. I think it's time for people to listen to the science.


Yes.

Sharon Whiteman

When we connected before we started, you told me that you have a soft spot for Australia, what's in your heart to leave people with today that are watching?


I love Australia because my parents lived there for 2 decades and my brothers and sisters were born in Australia. I was the youngest of a family born in France, but I suffer a lot because I see that all the Australian patients suffer, the physicians are attacked, the government’s say there is no Lyme disease in Australia, that is not evidence-based. I say you should join in associations and fight with good arguments providing medical evidence. Well, if we succeeded a little bit in France it’s because I created the French Federation Against Tick-borne diseases. It's a combination of associations of patients who are accepted to join and also scientific consult with physicians, researchers, some professors so we could have a unique message based on evidence.

Sharon Whiteman

Fantastic. Professor Perronne, thank you very much.


Thank you.

Sharon Whiteman

I really appreciate your time and your expertise. We might be calling on you for some of your support.


Okay, thank you. Bye, bye.

Sharon Whiteman

Bye, bye

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