The first PHE Lyme Disease Conference – 9 October 2013

The following are brief notes on what was said. See PDFs for speakers’ slides.

Introduction: Countess of Mar

• Background of conflict & uncertainty creates difficulty for both patient & physician.
• Effectiveness of antibiotics.
• Co-operation and help of Porton, praise for Tim Brooks in organising the conference.
• Avoiding the ‘dustbin of chronic illness’, the desperate seek private treatment with long term antibiotics. Can this be right?
• Disparity of cases treated and incidence of disease.
• Call for analysis of testing regimes.
• ‘Expert patients’ and support organisations need recognition.
• Short course treatment always leaves problems – residual cost of not dealing effectively with infection.
• Call for Tim Brooks to listen and question.

Overview of Lyme disease pathology & immunology (PDF 822KB), Tim Brooks, Head of Clinical Services, Rare & Imported Pathogens Laboratory, PHE

• Search for consensus.
• No complete set that says you have LB – people are different.
• Almost everybody makes antibody to conserved region of VlsE.
• Problems of identification and treatment of bacteria.
• Ingestion – attack – reproduction – secondary spread.
• Processes of infection and invasion is a pathological race
• 12 hrs for transmission – speed of removal of tick is important.
• Borrelia does not stay in blood for long – migrates to skin or CSF.
• Changes to avoid immune system defence – C6 is common to all.
• Need for research into untreated disease and reinfection.

Short and long term wins in Lyme disease (PDF 318KB) Stella Huyshe-Shires Chairman, Lyme Disease Action

• The pdf contains the full text of the presentation.

The patient’s need for scientific integrity (PDF 2.4 MB) Wendy Fox, Chair, Borreliosis and Associated Diseases Awareness UK (BADA)

• Lack of awareness of ticks.
• Misinformation on internet sites & lots of “snake oil”.
• GPs also uninformed & unaware.

RIPL Assays and Service (PDF 759KB), Tim Brooks

• RIPL provides a 24hr help line for imported diseases.
• Lyme now provides greater proportion of samples.
• Aim is reliability and consistency.
• Need to catch the bug where it is on the day – this is difficult.
• Single negative test should be repeated.
• Looking for what is causing an illness – the duck test.
• Co-infections: if they are indicated, can test for them

Lyme Disease in Scotland (PDF 519 KB) Roger Evans, Consultant Clinical Scientist, NHS Highland

• Raigmore Hospital Lab is funded by charging for the test. Would like central funding.
• 2013 now testing for whole of Scotland.
• 5000 samples.
• Incidence >450/100,000 2 yrs ago now >200/100,000 – an unexplained drop (may be EM recognition so fewer cases tested; some evidence that 2011 saw a decline in tick nos.)
• In process of evaluating 5 commercial tests v in-house test. Probably move to Mikrogen immunoblot.
• Using patient questionnaire to disseminate information to all clinicians.
• Not testing in cases where EM present.
• Reporting revision is required to address under reporting.
• R&D investigating non referrals.
• Checking on virulence and pathogenicity.
• Is the genome changing, what species are present, what other infections are there?

Lyme as a GP sees it (PDF 324KB) Iain Farmer, GP, Fort Augustus, Perth and Kinross

• Disparity of attraction of individuals to ticks
• Increase in virulence and prevalence in last 30 years
• In 1986 “something happened”
• Rash is a no –brainer – treat it don’t test it. In Scotland it is not a bull’s eye.
• Cellulitis is angrier & more inflamed
• Spoke to Highland Research Group, but no-one wanted to research “obscure disease”
• Need research into test for active disease.

Complex Lyme cases: the ID Physician’s view (PDF 811KB) Alastair Miller, Consultant Physician, Tropical and Infectious Diseases Unit, Liverpool

• Clinic sees about 20-30 patients pa
• One positive PCR last week – RIPL
• Went through Cottle paper on CFS.
• Talked about post infectious disease syndromes
• Has never seen cardiac presentations
• Acknowledged “a misprint” in BIA Position Statement
• “serology almost always positive”.

A Lyme Clinic in Winchester (PDF 2.2MB) Matthew Dryden, Consultant Microbiologist and Specialist in Infection, RIPL, PHE

• Network of infectious diseases services around the country
• Clinic will pilot until end December. Convinced there has been an increase in LB.
• Arthritis rare; only 2/508 cardiac; “Is there a psychiatric element?”
• CAN = “Chronic Arthropod-borne neuropathy”
• Wants strong relationship with LDA When questioned by SH “To develop & define the service?” said Yes
• Patients at the heart of everything – yes
• Paediatric needs highlighted

Comments from floor:

• Dr Saul Faust, Southampton paediatrician, highlighted importance of paediatric ID referrals.
• PHE Senior Health Protection Nurse, Herts expressed surprise at low recognition of cardiac cases. She had 2 cardiac cases recently – she followed them up to tell them of positive LB test result. Found they didn’t know and had had pacemakers fitted.

Next Generation Assays (PDF 274KB) Jackie Duggan, Principal Scientist, Special Initiatives, RIPL, PHE

• DNA degrades quickly – ie before it reaches the lab
• C6 does not elicit a high IgM response
• Will build panel of Bb strains. Won’t routinely offer culture for diagnosis.
• Plex-ID is one of 8. Abbott are developing concentration techniques for this.

Beyond the next generation: data mining and T-cell assays (PDF 180KB) Amanda Semper, Scientific Programmes Manager, RIPL, PHE

• Comprehensive slides.

Ticks, mammals and birds (PDF 5.3MB) Jolyon Medlock, Head of Entomology and Zoonoses Ecology, PHE

• Ixodes hexagonus (Hedgehog tick) becoming more important host for LB.
• Comprehensive slides.

Epidemiology of Lyme in England & Wales (PDF 872KB) Robert Smith, Clinical Scientist (Zoonoses), Health Protection Division, Public Health Wales

• No new information noted.

Research Plans and applications (PDF 168KB) Tim Brooks

• Detail in slides

Question Session, Chaired by Christine McCartney, Senior Advisor on Microbiology Services to the Chief Executive, PHE

• (chair) PHE on the starting blocks to have a very high standard of testing within a few months
• (chair) PHE to endorse LDA web site
• (Matt Dryden) Important to define what Chronic Lyme is with LDA
• (Tim Brooks) New guidelines will be state of the art at the time but not static – needs both ‘sides’ to buy in to be of any value.
• (Tim Brooks) Investigation pathway to ensure not missing something in seronegative cases. GPs need a different pathway.
• From floor: Occupational Health wants to join guidance group.
• (chair) Tim Brooks to draw up an action plan from the day

Many questions were submitted in writing, both before and during the day and there was not time to go through them all. PHE have said they will record and answer these questions publicly.

Other people have recorded notes from the day:

• This personal blog has a lengthy record of the final question session.
• PHE’s Public Health Matters blog, has an account from Christine McCartney who chaired the afternoon session

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