Wednesday, 16 October 2013


Details of conference program and attendees found here

A historic event - patients and patient advocate groups have been asking Department of Health for open dialogue over many years on the subject of Lyme Disease.

Conference slides from presentations from PHE here 

My notes.

I thought it was a good positive start of dialogue.

The Countess of Mar gave an excellent and enlightened introduction - clearly she is well informed about this disease and working hard to keep doctors involved with the process of working with patient groups and patients.

Dr Tim Brooks (RIPL Porton Down) spoke enthusiastically about ways forward with testing and looking at improving tests - his colleague went into detail about various tests available.

Stella Huyshe- Shires  chair of Lyme Disease Action did us proud making some very salient points forcefully - some may have been lost on the doctors in the audience who still think they have all the answers but hopefully by the end of the meeting some of them may realise they need to be more open minded talk and listen. Engagement - patient voice at center of every decision. Mentioned Ad Hoc International group that has held progress back -'This battle cannot be won on scientific front we need to mount a socio political offensive' Although patients appreciated Stella highlighting this remark my guess is that it was lost on the medics in the audience -(keep repeating it though)

Wendy did a presentation about awareness and educational work that BADA UK do and the need for much more, pointing out some of the problems of patients depending too much on internet and being mis led by 'Snake oil' medicines.

Dr Roger Evans Raigmore seemed to have a very open mind (recognises sero negativity I talked to him during the break and he pointed out to me that even with low % seronegativity  that could still be a significant number of patients) Currently involved with project with 18 surgeries in Scotland looking at all cases of LD even clinical diagnosis and EM to get a feel for the real figure which he believes is between 5 and 10% that of serology. Also looking at ways of improving testing and looking at more isolates - query Miyamotoi.

Ian Farmer GP from Scotland was greeted with a round of applause when he dismissed the testing as rubbish. He practices in an area where Lyme disease has high incidents which he finds in his patient population - pointed out the area is a popular tourist area - how many return home infected and how do they fare with diagnosis and treatment? One interesting point he made was that it was about 1986 when EM rashes started to appear and talking with locals it appears no reports of EM's prior to then.

Dr Miller talked confidently about the research at the Liverpool clinic details on LDA website previously discussed this research here - he repeated IDSA view with great confidence and I suspect it will take much much more before his views are changed - he believes there is no persistence of this organism beyond a short course of antibiotics and only those who meet epidemiology, clear objective symptoms of Lyme( mainly neuro such as Bells Palsy - as we don't get much arthritis in UK!!!) and has positive serology have Lyme Disease.

Dr Dryden impressed me both in presentation and answering my and others questions and in chats during breaks. I would recommend seeking consultation at his clinic - clinic is open to December in a trial capacity - if we don't use it we may loose it. He tells me that he intends following patients over time and keeping records he also says that if patients go elsewhere say to US Lyme docs he will still follow and may be prepared to discuss cases with Lyme Doctors ( not necessarily treating patient himself but until he talks to specialist doctors he won't learn).He agreed he might work with some of our Lyme friendly GP's at his clinic. Clearly he will work closely with Porton Down RIPL on a range of testing to try to establish underlying causes - biopsy lesions, monitor and evaluate serology over time,will encourage urgent referrals from doctors, and refer on if necessary to other specialists.

Jackie Duggan very interesting on testing methods and different tests. Plex-ID may start being used next year and can be primed to test for 8000 pathogens a variety of borrelia strains/species, Bartonella, Babesia etc

At that point I gave up taking notes.
Remainder of talks were interesting but nothing outstanding beyond what many of us have heard before.

Lots of useful questions and good answers far too many to list here.

Most important question for me was that PHE endorse LDA website thus doctors can go there for information- seemed to be accepted - time will tell.

Countess of Mar did an excellent summing up once again showing her thorough understanding of this disease - as much as any of us can in view of the many uncertainties.

I look forward to seeing what information from the presentations is available and what others perceptions were.

I felt after years of frustration and disappointment this was the start of something better, we deserve so much better and NHS budget could be cut reducing wastage on so many unhelpful consultations which was a point that was taken on board too.

Public Health England Health Matters blog, Conference wrap up - Lyme Disease and comments here

A more detailed summary can be found on Nicola's blog here the devil is in the detail so well worth reading.

Lyme Disease Action feedback here 

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