Sunday, 13 January 2013


Uncertainties in Lyme Disease.

The Lyme Disease Action project with the James Lind Alliance has now officially 

confirmed that there are uncertainties in Lyme disease diagnosis and 

treatment. Doctors and patients have agreed on the top 10 priorities for 

research at a workshop observed by the Department of Health and the Health 

Protection Agency.

To read all about this visit Lyme disease Action website link here  

UK Lyme Disease Priority Setting Partnership

The Top 10 Research Priorities

The following are the top 10 uncertainties in the diagnosis and treatment of Lyme
disease agreed by clinicians and patients.

 What is the best treatment for children and adults presenting with a) early Lyme 
disease without neurological involvement and not including erythema migrans and 
b) late Lyme disease of any manifestation? To include consideration of drug(s), 
dose, duration. 

 What key questions (clinical and epidemiological) should be considered to help 
make a diagnosis of Lyme disease in children and adults in the UK and would a 
weighting table be useful? 

 How effective are the current UK tests in detecting infections due to the 
genospecies and strains of B burgdorferi sl in the UK and which single test and 
what combination of tests performs best in diagnosing or ruling out active Lyme 
disease. Should stage of the disease and patient age be taken into account when 
interpreting these tests?

 What are the outcomes of cases where long term treatment has been used?

 What is the optimal course of action if symptoms relapse after a treatment course 
is finished?

 What is the optimal course of action if symptoms persist after initial treatment: 
should antibiotic treatment be continued until all symptoms have resolved or 
should a different dose or different antibiotic be used and what is the course of 
action if treatment appears to fail completely?

 Are continuing symptoms following conventional recommended treatment due to 
continued infection, or an immune response or other process?

 How common is relapse and treatment failure and is it related to disease stage, 
gender, co-infections or any other factor?

 Are there long-term consequences if treatment is delayed? 

 Can Lyme be transmitted via other means: person to person sexually, 
transplacentally or by breast feeding; through organ donation; through blood 

link here  

There were certainties - including 

Does EM provide an ‘accurate’ clinical diagnosis of LD?
Yes it does.
Stanek G, Fingerle V, Hunfeld K, Jaulhac B, Kaiser R, Krause A, et al. Lyme borreliosis: clinical case definitions for diagnosis and management in Europe. Clinical Microbiology and Infection. 2011 Jan;17(1):69–79.
Is EM a more or less ‘accurate’ sign of LD in children?
Yes. Reference as above
How is EM defined?
See Stanek et al 2011 as above for description of European manifestations.
Should tests to exclude LD be carried out in patients who have a tick 
bite but don’t get EM?
In symptomatic patients, yes. EM is not always present
Stanek et al 2011
Tuerlinckx D, Glupczynski Y. Lyme neuroborreliosis in children. Expert review of anti-infective therapy. 2010 Apr;8(4):455–63.

Sadly many Doctors are unaware of these certainties and thus miss that early 
indication of Lyme Disease for those of us who present with EM following tick 

The above top ten uncertainties are logged on the 

NHS Evidence – UK Database of Uncertainties about the Effects of Treatments (DUETs)  here and hopefully will attract much needed research.

Meanwhile the above uncertainties need to be recognised among our doctors. I was pleased to hear that the Dept of Health and the Health Protection Agency were present during this process. 

In correspondence from the Dept of Health, Earl Howe, 12.12.2011 via my MP Anne Milton .The Dept of Health says 'The Department is working with Lyme Disease Action (LDA) and I am aware that you as Health minister, have met with LDA representatives. We are supporting its initiative with the James Lind Alliance and await the findings of their review.'

I look forward to more information about these uncertainties being relayed to our treating doctors and consultants and changes to existing guidance from the Dept of Health via the Health Protection Agency reflecting that there are many uncertainties, instead of the current restrictive guidance based more on opinion than scientific data. 

1 comment:

  1. There is a Lyme petition at the following address:

    The petition will only be up until 2/10/13, and we need 25,000 signatures for the White House to review and respond.

    This is the best chance for raising Lyme awareness I have seen, so please spread the word!