I
just returned home from Europe, after lecturing in France, Holland, and
Italy. It was a wonderful experience. I had a chance to meet with local
doctors, patients, and Lyme advocates
and now have a better understanding of the current
medical/sociopolitical issues surrounding Lyme and co-infections in
these European countries. To sum it up, Europe is in dire straits. They
are in the middle of a spreading epidemic of tick-borne disorders, yet
embroiled in the same scientific/intellectual battles over the diagnosis
and treatment of these tick-borne diseases that have gone on during the
past 4 decades in the United States. The result? MANY patients are
suffering. This is the 1st of 3 consecutive posts which will discuss the
situation in Europe.
The
first stop on the lecture circuit was the 7th International ILADS
European conference in Paris. The moment I arrived at the hotel,
sleepless and jet lagged (I don’t sleep well on planes), there was a
meeting, so I had to immediately change into a suit and tie. This took
place in the bathroom downstairs in the hotel, as my room wasn’t ready
at 9:45 am. I lugged my baggage into “le toilette” as the bathroom
attendant looked at me quizzically, while shaving and changing into
clean clothes. She clearly was wondering why I couldn’t afford a regular
room, with bags sprawled out all over the bathroom floor. I then lugged
the baggage back upstairs to be stored, as I had to immediately go to
the HAS, i.e., “Haute Authorite de Sante” in Paris. This literally
translates into the “High Health Authority”, which is the equivalent of
one of the branches of our CDC in the US. Professor Christian Perronne,
who is a French infectious disease specialist who works in private
practice and at the governmental level, invited Dr Sam Shor, Dr Ron
Wilson (OB-GYN) and myself to participate in a scientific dialogue about
Lyme, at the governmental level. We would participate in an important
discussion to help the French people, and the goal was to try and reach a
consensus and update the present French Lyme guidelines. Our testimony
would be part of the medical-political process.
So, double espresso and flaky croissant in hand (thank you, Barbara Buchman), we took the metro system and arrived at the HAS one hour later. Ron and Sam didn’t speak French, so Dr Perronne and I translated some of the meeting for them. They spoke in English about their experience with diagnosing and treating Lyme disease. Then it was my turn to speak. Although I am fluent in French, as I did my medical training in Brussels for 7 years, it is nevertheless challenging to be sleep deprived and give cogent scientific arguments in another language. However, I believe it went well, although it was clear that physicians around the table (GP’s, infectious disease doctors, rheumatologists, neurologists…) were split with differing views on the science. I gave out scientific documents highlighting in the medical literature the problems with testing, evidence of persistence, and newer studies on “persister” drugs that were published and helping resistant patients, so I also let “the science speak”. We did not reach an 80% “consensus”, but according to Professor Perronne, the meeting may lead to the establishment of two sets of guidelines to help French patients, which is a step in the right direction.
The next day was the 7th ILADS European conference. Dr Sam Shor gave an overview of tick-borne diseases; Dr Carsten Nicolaus discussed case studies; Dr Robert Bransfield, Dr Jyotsna Shah, Dr Sin Hang Lee, and Dr Christian Perronne discussed testing for borreliosis (as well as discrepancies between published data and recommendations), with Dr Sara Moutailler and Dr Franscisco Veas discussing new generation PCR’s and Next Generation Sequencing (NGS) for improving the diagnosis of Lyme and associated co-infections. I gave two lectures on co-infections on day one, and one talk on day two, discussing the treatment of persistent Lyme disease and co-infections using anti-mycobacterial drugs. This was based on the two studies that Dr Freeman and I published last year on Dapsone and pyrazinamide, with updates in 200 patients. We hope to publish the newest results for those 200 Dapsone patients later this year. The recent Dapsone study results were able to be tabulated thanks to a generous grant from the Bay Area Lyme Foundation. We data mined 200 charts in detail, which showed highly statistically significant results in patients who were on the Dapsone protocol for longer periods of time (up to two years) compared to our first study.
Other European speakers at the ILADS conference included Dr Leona Gilbert from Finland, who discussed the pathophysiology of Lyme; Louis Teuliéres, MD, PhD, who is one of the French Chronimed members (Chronimed is a scientific group that I belong to, of open-minded French speaking doctors) gave a fascinating talk on the development of bacteriophages (viruses) targeted against borrelia. There were also talks on treating complex chronic infections in autistic children (Dr Laura Alonso, Spain; Dr Phillipe Raymond, Chronimed France), with Dr Kenny DeMierlier (Belgium) discussing current treatment options for ALS. Dr Marjo Valonen, MD, from Finland gave a talk on her experience with herbal and nutritional interventions for co-infections in Scandanavia, with Dr John S. Lambert from Ireland, discussing the Irish experience with Lyme disease.
The conference finished with Dr Natasha Rudenko, PhD, from the Czech Republic discussing the genetic diversity and geographic distributions of Borrelia burgdorferi Sensu Lato Species in Europe, with Dr Judith Miklossy from Switzerland showing strong published scientific evidence that Alzheimer’s disease can be associated with chronic Lyme neuroborreliosis.
Overall, it was a great ILADS conference and was wonderful seeing old patients (some came from the US!), American friends (Mary Beth Pfeiffer, prize winning journalist on Lyme disease, who is writing a book on Lyme, came to Paris for the conference), as well as European friends, including French author Sophie Benarrosh, who wrote the recent Lyme book, “Non, ce n’est pas dans ma tete, ni dans la votre” [No, it is not in my head, nor in yours!].
The photos below are of Chronimed members Dr Marc Arer, and Phillipe Raymond picking me up, with photos of myself with Barbara Buchman (executive director, ILADS), Sophie Benarrosh, Dr Ivan Boucher (Belgium) and Dr Judith Miklossy (Switzerland), Dr Christian Perrrone (France), and finally photos of myself and Lee outside the hotel, with Dr Freeman, Dr Krikun, Mary Beth Pfeiffer and my wife Lee dining with me in an outdoor café in Paris after the conference. Next stop, Amsterdam.
So, double espresso and flaky croissant in hand (thank you, Barbara Buchman), we took the metro system and arrived at the HAS one hour later. Ron and Sam didn’t speak French, so Dr Perronne and I translated some of the meeting for them. They spoke in English about their experience with diagnosing and treating Lyme disease. Then it was my turn to speak. Although I am fluent in French, as I did my medical training in Brussels for 7 years, it is nevertheless challenging to be sleep deprived and give cogent scientific arguments in another language. However, I believe it went well, although it was clear that physicians around the table (GP’s, infectious disease doctors, rheumatologists, neurologists…) were split with differing views on the science. I gave out scientific documents highlighting in the medical literature the problems with testing, evidence of persistence, and newer studies on “persister” drugs that were published and helping resistant patients, so I also let “the science speak”. We did not reach an 80% “consensus”, but according to Professor Perronne, the meeting may lead to the establishment of two sets of guidelines to help French patients, which is a step in the right direction.
The next day was the 7th ILADS European conference. Dr Sam Shor gave an overview of tick-borne diseases; Dr Carsten Nicolaus discussed case studies; Dr Robert Bransfield, Dr Jyotsna Shah, Dr Sin Hang Lee, and Dr Christian Perronne discussed testing for borreliosis (as well as discrepancies between published data and recommendations), with Dr Sara Moutailler and Dr Franscisco Veas discussing new generation PCR’s and Next Generation Sequencing (NGS) for improving the diagnosis of Lyme and associated co-infections. I gave two lectures on co-infections on day one, and one talk on day two, discussing the treatment of persistent Lyme disease and co-infections using anti-mycobacterial drugs. This was based on the two studies that Dr Freeman and I published last year on Dapsone and pyrazinamide, with updates in 200 patients. We hope to publish the newest results for those 200 Dapsone patients later this year. The recent Dapsone study results were able to be tabulated thanks to a generous grant from the Bay Area Lyme Foundation. We data mined 200 charts in detail, which showed highly statistically significant results in patients who were on the Dapsone protocol for longer periods of time (up to two years) compared to our first study.
Other European speakers at the ILADS conference included Dr Leona Gilbert from Finland, who discussed the pathophysiology of Lyme; Louis Teuliéres, MD, PhD, who is one of the French Chronimed members (Chronimed is a scientific group that I belong to, of open-minded French speaking doctors) gave a fascinating talk on the development of bacteriophages (viruses) targeted against borrelia. There were also talks on treating complex chronic infections in autistic children (Dr Laura Alonso, Spain; Dr Phillipe Raymond, Chronimed France), with Dr Kenny DeMierlier (Belgium) discussing current treatment options for ALS. Dr Marjo Valonen, MD, from Finland gave a talk on her experience with herbal and nutritional interventions for co-infections in Scandanavia, with Dr John S. Lambert from Ireland, discussing the Irish experience with Lyme disease.
The conference finished with Dr Natasha Rudenko, PhD, from the Czech Republic discussing the genetic diversity and geographic distributions of Borrelia burgdorferi Sensu Lato Species in Europe, with Dr Judith Miklossy from Switzerland showing strong published scientific evidence that Alzheimer’s disease can be associated with chronic Lyme neuroborreliosis.
Overall, it was a great ILADS conference and was wonderful seeing old patients (some came from the US!), American friends (Mary Beth Pfeiffer, prize winning journalist on Lyme disease, who is writing a book on Lyme, came to Paris for the conference), as well as European friends, including French author Sophie Benarrosh, who wrote the recent Lyme book, “Non, ce n’est pas dans ma tete, ni dans la votre” [No, it is not in my head, nor in yours!].
The photos below are of Chronimed members Dr Marc Arer, and Phillipe Raymond picking me up, with photos of myself with Barbara Buchman (executive director, ILADS), Sophie Benarrosh, Dr Ivan Boucher (Belgium) and Dr Judith Miklossy (Switzerland), Dr Christian Perrrone (France), and finally photos of myself and Lee outside the hotel, with Dr Freeman, Dr Krikun, Mary Beth Pfeiffer and my wife Lee dining with me in an outdoor café in Paris after the conference. Next stop, Amsterdam.
