Held in Paris, this was the first general European conference on tick-borne diseases. It was attended by researchers and health professionals from 19 countries across Europe and some from the USA, though understandably nearly half of the delegates were French. There was a small Scottish contingent and two speakers from England (one being from LDA). it is possible that England and Wales were represented in the on-line participants; we hope so.

LDA had been invited to send a speaker – that talk is in a separate news item. Patient organisations were also represented by Global Lyme Alliance, who fund some very useful research mainly in the USA, and France Lyme the local patient organisation. There were some useful conversations between us and useful conversations also with researchers and health professionals.

It is impossible to go through all the talks, but it is worth mentioning:

Updated Guidelines for Lyme borreliosis (LB) from Germany, France and Switzerland

• Although updated treatment recommendations were listed for EM (definite rash), LNB (spinal fluid evidence), Lyme arthritis (PCR of joint fluid) and ACA (PCR of skin tissue) there was no specific mention of disseminated LB without and without confirmed LNB. Perhaps this is because in Europe (unlike the UK) the vast majority are diagnosed early.
• The French recommendation for Amoxicillin is for a much higher dose than NICE recommends.
• LB with objective signs like arthritis, multiple EM, ACA skin rash, usually had longer treatment recommendations.
• These 3 guidelines often differed in duration of treatment, despite all the committees having completed extensive review of the literature. Does this indicate uncertainty in the best treatment?

Continuing symptoms after treatment for LB

• There seems general agreement that some people do genuinely have continuing symptoms following LB and that this can now be called Post Treatment Lyme Disease Syndrome (PTLDS). It was generally being described as confirmed diagnosis + recommended treatment + symptoms still at 6 months after treatment. The cause is unknown.
• Many speakers said that antibiotics do not help PTLDS and the French presentation stated a “Need for high-level clinical trials to improve pathophysiological understanding, diagnosis, and PTLDS patient care”. Note “patient care”, not patient treatment; but of course you can’t treat what you don’t understand. Treatment for PTLDS was:
  • Pain management
  • Physical rehabilitation
  • Psychological management
  • Regular clinical assessment
• In a talk on reducing the length of antibiotic treatment there were 2 slides on the agreement of what outcomes to record in trials. It was stated that “Sequelae or subjective persistent symptoms are not considered as failures.” So a patient might still feel considerable pain, but this was not considered treatment failure.
• Germany & France are both creating biobanks which they can use if new tests or biomarkers become available.

Other tick-borne diseases

• Alpha-gal Syndrome. This is a tick-acquired allergy to red meat. A tick can acquire alpha-gal (a form of sugar) from a mammal and then transfer it to a person. That person develops antibodies to alpha-gal which may then react with alpha-gal in red meat that is eaten. There have been a few UK cases. People with frequent tick bites are more at risk.
• Tick-borne encephalitis (TBE). A UK paper was mentioned in the session “Top papers about Prevention & Surveillance”. The paper describes how TBE cases were tracked and enhanced surveillance started. A Swedish study found that 70% of patients had persisting symptoms at 6 months. People over 50 years and with other conditions had more severe disease. TBE is increasing in Denmark.

Other points worth mentioning

• The One Health approach got attention: both humans and animals are affected by tick-borne diseases (TBDs). Dr Sally Cutler, from University of East London pointed out the many knowledge gaps in TBDs, particularly raising the question of what diseases may be caused by invasive ticks moving in to new environments, and raising awareness of the danger of ticks carrying anti-microbial resistance genes. Changes in land use, such as increased green spaces in towns, increase in woodlands and re-wilding road verges etc, increases the risk of tick-borne disease.
• Dr Cutler emphasised the lack of awareness of preventative measures – clothing, tick checks etc. Dr Claire Ancel from France described a TBD prevention programme in elementary schools around a forest in France. They assessed awareness in 5-9 year olds. Children had very poor awareness  at the start but after games etc were very much improved.
• There was a warning that people being treated with B-cell depleting medicines for conditions such as rheumatoid arthritis or multiple sclerosis have a difficult journey if they contract Lyme disease. A review of Lyme disease case studies in these people found that 80% of those with disseminated Lyme disease had negative serology and 36% had continuing symptoms after treatment. GPs need to be aware of this and not discount possible Lyme disease because of a negative test result.
• In the Netherlands 141 isolates of B burgdorferi were tested against doxycycline, amoxicillin, azithromycin & ceftriaxone. All were found to be susceptible; none of them resistant to any of those antibiotics.
• A study of LB cases in France found a low incidence in the west and south east, and higher if the east and the centre of the country. 96% of the cases had an EM rash recorded.

Some of the slides from the talks have been made available on the conference website. A second ETBD conference is planned for 2026. As the importance of tick-borne diseases in the UK increases, we hope that more people from the UK will attend.

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