Official guidance on the diagnosis and testing of Lyme disease contains worrying inconsistencies, according to a new research paper.  

Professor Alex Faulkner at the University of Sussex, and national patient organisation Lyme Research UK have revealed stark discrepancies between the different policy and clinical practice guidance documents issued by Public Health England and other health bodies.  

In a paper published in the journal Critical Public Health, the researchers also suggest that patients and patient groups should have greater involvement in decision-making processes, as their knowledge about the disease is often underestimated.  

Lyme disease is transmitted by certain animal-borne ticks and is increasingly common in both rural and urban parts of the UK. Recent statistics suggest that at least 3,000 people are infected in the UK annually – a figure which rises if private testing is recognised.  

Diagnostic tests (whether NHS or private) cannot be shown to be wholly reliable, leaving many patients to seek ‘clinical diagnosis’ complicating the diagnostic process, with some even trying to diagnose themselves. 

Recently, singer Justin Bieber announced he was suffering from Lyme disease, which has helped shine a light on the infection and how often it can be misdiagnosed.  

Currently in the UK there are increasing levels of concern about policy and practice related to Lyme disease testing and diagnosis. 

Alex Faulkner, Professor in Sociology of Biomedicine and Healthcare Policy at the University of Sussex, said: “The symptoms of Lyme disease can include a ‘bull’s eye’ rash, aching and swelling joints, neuralgia, problems of the nervous system and heart inflammation.  

“But we found that official guidance by Public Health England, the British Infection Association and NICE, all differ in their statements about the typical symptoms. Only NICE refers to the possibility of a later-stage rash, while joint pain and swelling were inconsistently referred to across the various sources we looked at.  

“These mixed messages are highly confusing for patients.” 

The authors recommend policy improvements to address and remedy these discrepancies found in official guidance.  

But their work, which analysed information from patient organisations’ documents, statutory policy and professional publications, as well as data from an online survey, also revealed that patients often have a far greater knowledge of the disease than they are credited for.  

Prof. Faulkner said: “Official policy makes it difficult for patients with long term symptoms to feel their illness is properly recognised, and maintains a hard boundary between the experience of the patient and public health practice.  

“In most medical research on patient knowledge, the focus is almost entirely on the experiential – medical professionals bring their expertise about diagnosis and treatment, and patients can talk about their experience of the disease. 

“But what we can show, is that patients and patient organisations can develop and deploy a much wider range of knowledge forms; knowledge that would be valuable in policy debates and decision making when it comes to testing and diagnosing the condition. 

“For example, many of the statutory medical and public health authorities don’t recognise long term chronic Lyme disease beyond a few weeks; but this is disputed heavily by various patient groups and some physicians.  

“By considering shared decision-making in medical consultations, issues like this could be better addressed.”  

Co-author, Kate Bloor said: ‘We need to relieve the difficulties of diagnosis, that patients and their doctors face (when the medical practice only 'fits' certain types of acute cases) for Lyme disease. It is particularly important to understand what patients groups’ views on current practices are, in a real human and experiential context - since this will assist in developing future and better knowledge.  

“This research illustrates the type of concerns, patients have about their illness being recognised and dealt with in the current policy and health system. For instance they wish a greater range of symptoms 'to be recognised' as potentially being Lyme disease -  as well as being considered for this disease, irrespective of 'how long' they’ve suffered from it.” 

The authors also suggest further research into the potential of non-standard tests, such as DNA-based methods, that might be more promising rather than relying on lab test results which are often uncertain.