Medical Research on Lyme Disease and Potential Claims

In this feature article, we consider, firstly, what Lyme disease is, before going on to consider the prevalence of Borrelia bacteria exposure in the UK and, more specifically, occupational exposure. We also provide an example of a Scottish industrial disease claim, which is both relevant and helpful to the handling of Lyme disease legal action. Finally, we discuss the latest National Institute for Health and Care Excellence (NICE) guidance, which attempts to pull together the academic research and clinical studies on Lyme disease to date, for the benefit of clinicians and patients.

Borrelia burgdorferi

Lyme disease, also known as Lyme borreliosis, is a bacterial infection, caused by Borrelia burgdorferi, which can be transmitted to humans from infected tick bites within 24 hours of exposure[i]. Borrelia garnii and Borelia afzelli are the two major subspecies of Borrelia burgdorferi found in Europe. In the UK, Borrelia garnii is the most prevalent sub-species.[ii]  

Tick bites, which are often painless, can only cause Lyme disease in humans if the tick has already bitten an infected animal.[iii] Not all tick bites, therefore, carry infectious disease.  Health effects may be reduced by removing the tick as soon as possible. In the USA, 90% of infected patients develop symptoms. Comparatively, in Europe, fewer than 50% of infections result in clinical illness[iv].

Testing

Usually, bacterial diseases are diagnosed by growing bacteria cultures. However, in the case of B. Burgderfori, this requires a special medium, typically unavailable in clinical microbiology laboratories. Testing methods for Lyme disease include ELISA and immunoblot blood testing, but this can give negative results in infected patients if blood is taken before the immune system has had time to respond by producing antibodies.[v] [vi]

Since the recognized clinical test for Lyme disease is a test for antibodies, rather than a test for live bacteria, a patient who tests positive may not actually be infected by live bacteria. It is also argued that, in patients who have been treated but show a positive blood test due to some antibodies remaining, active infection cannot be ruled out[vii]. Studies, published in 2017, showed that Lyme bacteria persisted months after infection in primates, even when treated with antibiotics.[viii] [ix] [x]

As a result, many believe the only reliable method to diagnose Lyme borreliosis is the typical red, bullseye-like rash (erythema migrans) at the site of the tick bite[xi], which is developed in 30 to 80% of patients, according to a range of different sources. Fewer than 40% of patients with early-stage Lyme disease are correctly identified[xii].

Nevertheless, it was reported, in February of 2018, that researchers at Columbia University’s Mailman School of Public Health have developed a new blood test that ‘promises to revolutionise the diagnosis of tick-borne disease[xiii] by identifying and distinguishing between 8 tick-borne diseases, including Borrelia burgdorferi.[xiv]

Symptoms

In addition to the bullseye rash, longer-term symptoms of untreated Lyme disease, or Lyme disease with unsuccessful antibiotic treatment, include[xv]:

  • Severe headache and neck stiffness;
  • Arthritis with severe joint pain and swelling, particularly large joints such as the knees (it has been suggested that this may be due to an overactive immune response)[xvi];
  • Facial palsy (loss of muscle tone or droop on one or both sides of the face);
  • Intermittent pain in tendons, muscles, joints and bones;
  • Heart palpitations or irregular heart beat (Lyme carditis);
  • Episodes of dizziness or shortness of breath (Lyme carditis)[xvii];
  • Inflammation of the brain and spinal cord (meningitis);
  • Nerve pain;
  • Shooting pains, numbness, or tingling in the hands or feet; and
  • Short term memory problems.

Long-term health effects of Lyme disease also include the skin disorders, acrodermatitis chronica atrophicans and borrelial lymphocytoma.

Acrodermatitis chronica atrophicans can appear months or years after the initial infection in patients usually over the age of 40. Hands and feet are most commonly affected.  Affected areas swell, redden and increase in size; in the feet, larger shoes may be needed.  After the initial months or years, the swelling slowly disappears and muscle wasting becomes more prominent.  The skin becomes thin and wrinkly and the blood vessels are prominently visible. 

Borrelial lymphocytoma is a rare manifestation of European Lyme borreliosis. The few studies that identify the proportion of patients affected found the proportion to be 1% to 2% of adults and 7% of children[xviii].  It is a solitary swelling, which may be itchy or feel sore, with a diameter of up to a few centimetres.  In children, it most commonly appears on the earlobe, and in adults, on the nipple.  When the ear lobe is affected, the skin is bluish-red.  Borrelial lymphocytoma lasts longer than an erythema migrans rash, and tends to resolve spontaneously, but this may take more than a year[xix].  In a study of 144 adult borrelial lymphocytoma patients, the median duration of the lesion after starting antibiotic treatment was 21 days[xx]

Treatment and Recovery

According to sources, such as the NHS and CDC (USA), most Lyme disease patients recover within a few weeks when treated with oral antibiotics. Studies have shown that prolonged antibiotic therapy is not helpful[xxi] [xxii] and can be dangerous[xxiii] [xxiv]. Results of a 2007 patient study were concurrent with this view.[xxv] As such, recognized authorities advise against long-term treatment with antibiotics[xxvi].

However, there are lobby groups, such as Lyme Disease UK, who find the notion that most people recover completely to be, ‘shocking, unjustified and misleading’. So-called ‘Lyme literate medical doctors’ (LLMDs) in the US argue that ‘The very real consequences of untreated chronic persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy’[xxvii].  Such bodies also sometimes advocate views such as, for example, Lyme disease can be passed from person to person.

Unsubstantiated theories of Lyme disease include:[xxviii]

  • Lyme disease can be sexually transmitted;
  • Lyme disease is not geographically restricted to areas with ticks;
  • Lyme causes autism, multiple sclerosis, homicidal behavior (“Lyme rage”), and other diseases;
  • B. burgdorferi forms antibiotic resistant cysts and exists within cells;
  • Blood test is of no value in the diagnosis of patients with manifestations other than those of the skin; and
  • Open-ended treatment with multiple antibiotics is needed.

‘POST-TREATMENT LYME DISEASE SYNDROME’ AND ‘CHRONIC LYME DISEASE’

Those bitten by ticks, who demonstrate longer-term symptoms of Lyme disease, such as persisting months of fatigue, are labelled sufferers of ‘post-treatment Lyme disease syndrome’ (PLDS). This is a medically acknowledged condition, which has similar symptoms to chronic fatigue syndrome or fibromyalgia. By contrast, so-called ‘chronic Lyme disease’ (CLD), the term given to those who report fatigue without any recorded incidence of a tick bite,[xxix] is not a medically recognised condition[xxx], and many experts argue that this should be distinguished from ‘post-treatment Lyme disease syndrome’:

‘Chronic Lyme disease is a misleading term that should be avoided. Post-treatment Lyme disease syndrome is the proper term for patients with a verified previous B burgdorferi infection who experience fatigue, arthralgias, or other symptoms 6 months or more after antibiotic treatment when all other conditions have been ruled out’. [xxxi]

Strle and Stanek, authors of a detailed paper on Lyme disease with an emphasis on European data, remarked that[xxxii]:

‘The designation chronic Lyme borreliosis should be reserved for patients with objective manifestations of late Lyme borreliosis (in Europe typically represented by acrodermatitis chronica atrophicans, chronic arthritis and rare cases of chronic Lyme neuroborreliosis without ACA) and not misused for: (1) symptoms of unknown cause with no (objective or valid) evidence of B. burgdorferi infection, (2) well-defined illness unrelated to borrelial infection (even with the presence of borrelial antibodies in serum), (3) symptoms of unknown cause, with antibodies against B. burgdorferi but no history of objective clinical findings that are consistent with Lyme borreliosis, or (4) post-Lyme borreliosos (post-Lyme disease) syndrome’. 

A 2007 review, published in the New England Journal of Medicine, describes 4 categories of ‘chronic Lyme disease’.  These are[xxxiii]:

  • Category 1: Patients have no objective clinical manifestations or laboratory evidence of infection with B. burgdorferi, and they receive a diagnosis based on nonspecific symptoms such as fatigue, night sweats, sore throat, myalgia, depression, and others.
  • Category 2: Patients have an identifiable illness or syndrome other than Lyme disease, and may or may not have a history of Lyme disease. They have received either a misdiagnosis or a diagnosis of another condition, e.g. multiple sclerosis, that they are unwilling to accept, and have sought a physician who is willing to diagnose and treat them for ‘chronic Lyme disease’.
  • Category 3: Patients do not have a history of objective clinical findings that are consistent with Lyme disease, but their blood samples contain antibodies against B. burgdorferi, as determined by standard testing. Patients in this category have at most only equivocal evidence of B. burgdorferi infection.
  • Category 4: Patients have symptoms associated with post-Lyme disease syndrome.

Data suggests that most patients presumed to have ‘chronic Lyme disease’ have category 1 or 2 disease.  Note that patients in these categories do not have evidence of active infection with B. burgdorferi.

A 2015 review of 7 studies, comprising 1902 patients referred for suspected Lyme disease, found that Lyme disease was, in many cases, diagnosed simply for lack of alternative diagnoses – ‘diagnosis of Lyme disease by exclusion’.  A common reason for referral of these patients was a positive blood test, but on clinical review the patients lacked clinical findings consistent with Lyme disease. False positive blood tests are common, as only a small proportion of those who test positive actually have active Lyme disease[xxxiv].

A number of celebrities have reportedly suffered from ‘chronic Lyme disease’[xxxv]. This has increased public knowledge, and potentially confusion, of Lyme borreliosis.

UK LYME DISEASE FIGURES

There are around 900 reported cases of Lyme disease in the UK each year, although it has been calculated that there may be 2,000 to 3,000 cases, or more.

In the UK, Lyme disease is most commonly acquired in:

  • New Forest;
  • Exmoor;
  • South Downs;
  • Thetford Forest;
  • Woodland and heathland in Southern England;
  • Lake District;
  • North York moors; and
  • Scottish Highlands and Islands.

The numbers of cases in England and Wales each year have increased steadily since 2001, but decreased between 2012 and 2014, and are shown in the figure below:

Figure: Number of confirmed cases of Lyme disease in England and Wales[xxxvi]

3.png

Figures, published by Public Health England in February 2018, show that in each quarter of 2017, the number of cases of Lyme disease was greater than the corresponding quarter in 2016. The greatest risk is posed between the months of April and October. In 2017, there were around 1,500 laboratory confirmed cases of Lyme disease[xxxvii]

Several factors have contributed to the increase in cases:

  • Increased awareness by health professionals and the public;
  • Greater access to diagnostic facilities,
  • More sensitive diagnostic methods;
  • An enhanced surveillance scheme, introduced in late 1996; and
  • More complete reporting of cases since 2000.

Other possible factors include:

  • Increased human population size.
  • Changes in geographical incidence of tick populations;
  • Successive, mild winters; and
  • Migration from central and eastern European countries.

Public Health England recommends that tick checks should be performed after longer periods of exposure to the outdoor environment[xxxviii].

PROGRESSION OF LYME DISEASE UNDERSTANDING IN THE UK

Several organisations advocate the existence of ‘chronic Lyme disease’ in the UK, stressing concern over negative blood test results ruling out genuine Lyme disease cases and concern that Lyme disease can be transmitted from person to person:[xxxix]

  • About time for Lyme;
  • Caudwell Lyme Disease;[xl]
  • Fight Lyme Now;
  • Justice for Lyme;
  • Lyme Disease Action (LDA); [xli]
  • Lyme Disease Campaign for Change UK;
  • Lyme Research UK;
  • Lyme Disease UK;
  • VIRAS;
  • Vis-à-vis symposiums; and
  • Well One Clinic.

In 2011, the British Infection Association (BIA) stated that its position is that[xlii]:

  • Over 1000 infections are diagnosed by blood testing, on an annual basis, in the UK. 15% to 20% of confirmed cases acquired the infection while abroad. It has been estimated that there may be an additional 1,000 to 2,000 unconfirmed cases per year.
  • B. burgdorferi infection can be asymptomatic.
  • Erythema migrans is the presenting sign in about 90% of patients. Borrelial lymphocytoma is another presentation that is uncommon in Europe (< 1% of cases).
  • Some patients with previously untreated infection can develop features of late-stage disease, months or years later. These manifestations can affect the skin, musculoskeletal or nervous systems.
  • Laboratory support is not required for a confidently-made, clinical diagnosis of erythema migrans. It should, however, be sought for all later manifestations of Lyme borreliosis, as the clinical features of disseminated and late disease are not specific to the infection.
  • Only a formally-defined syndrome specific for ‘chronic Lyme disease’ will obviate the need for previous clinical or laboratory evidence of B. burgdorferi infection. Until such time, a diagnosis of ‘chronic Lyme disease’ should not be made without this evidence.

In 2012, a study found that patients in the UK had been incorrectly diagnosed with Lyme disease, based on unvalidated testing carried out overseas. Patients were referred to an infectious diseases unit in Liverpool[xliii].  The patients’ previous management by NHS and non-NHS practitioners was reviewed. The researchers concluded that Lyme disease is over-diagnosed by non-specialists and that chronic fatigue patients were susceptible to mis-diagnosis in non-NHS settings. Among 115 patients, at least 53 unnecessary antibiotic courses had been given by non-NHS practitioners. These results reinforced concerns raised by previous authors regarding increasing diagnoses of ‘chronic Lyme disease’ in patients with persistent pain, fatigue, or neurocognitive symptoms, in the absence of clinical or serological evidence of previous Lyme Disease.

Lyme disease was discussed by the House of Lords in 2015, and in 2016 a petition for the government to investigate Lyme disease received over 10,000 signatures. On 22nd October 2015, the House of Lords held a short debate, with 8 speakers, on Lyme disease[xliv] [xlv].  Prior to the debate, LDA issued a briefing, which included five points of action.  These were to[xlvi]:

  1. Find out how many people in the UK are affected, and by what.
  2. Acknowledge within the NHS the uncertainties in diagnosis and treatment.
  3. Establish a partnership between LDA and the NHS.
  4. Develop UK guidance for health professionals and secondary care.
  5. Establish regional centres of expertise with specialized Lyme disease consultants.

The Government response, given by Lord Prior, was as follows:

'A big theme in the contributions from noble Lords has been the need to raise awareness, not just with the public but with GPs and clinicians.'

The main conclusions of the Government were:

  1. ‘Lord Greaves, raised the issue of a national inquiry. I do not think that we will go down that route at this stage.
  2. Secondly, on the point raised by the noble Lord, Lord Patel, about the NICE guidelines on how early we should start treatment with antibiotics, I will take that up separately with NICE.
  3. GP awareness: we can and must do more to raise awareness. That is possibly the most important thing that we should be doing.
  4. More research is needed to identify the basis of these persistent symptoms and define effective treatments.
  5. Patients need to have access to physicians with an interest in Lyme disease. Since the disease can be present in many different ways and can be confused with other more life-threatening conditions, in future this could be best done by establishing a network of interested NHS practitioners across the country with multidisciplinary experience’.

LDA gave MP’s a further briefing in November 2016, on progress to date[xlvii]. At the time, the report stated that ‘the current level of knowledge in the NHS’ was ‘very low’, and that there was a need for a pilot national clinic for ‘patients with a reasonable pre-test probability of Lyme disease’. It also stated that other tick-borne diseases could complicate diagnoses and treatment, but that doctors were unaware of them.

In 2016, a petition to the government to ‘Develop accurate NHS tests and effective treatment protocols for Lyme disease’ collected 10,851 signatures[xlviii]. The Government, in response, asserted that:

‘New systematic reviews and NICE guidance will inform research, services and educational material. The NHS will continue with validated tests, keeping any evidence of undiagnosed infection under review’.

The charity Lyme Disease UK published a response to the Government’s stance on Lyme disease testing and treatment[xlix].  Lyme Disease UK objected to the ELISA and Western Blot diagnostic tests (the current UK method), and argued that Lyme disease bacteria are persistent and ‘chronic Lyme disease’ requires treatment, and that co-infections with other pathogens need to be considered.

Systematic reviews on Lyme disease studies, carried out by a University College London research team, were published in 2017:[l]

  1. The nature and extent of research evidence on Lyme disease in humans[li]
    1,098 US and European studies were identified, with a steady increase in number since 2002.
  2. The incidence of Lyme disease in the UK and the type of surveillance systems in different countries[lii]
    Data indicated that just under 2 per 100,000 are infected with Lyme disease each year, in England and Wales. The rate has increased slowly by consistently over the last decade. The rate is Scotland is higher, and has declined since a peak in 2008-10. 
  3. Patient, clinician and researcher experiences of Lyme disease diagnosis[liii]Patients, clinicians and researchers reported uncertainty over the diagnosis of Lyme disease, due to timing and interpretation of laboratory testing resulting in inaccuracies, as well as wide-ranging symptoms reducing awareness among clinicians.
  4. Effectiveness of different approaches for preventing Lyme disease[liv] 
    Personal protection (such as wearing insect repellant or protective clothing) could prevent Lyme disease. Improvements in knowledge did not seem to result in fewer tick bites or cases.

An All-Party Parliamentary Group on Lyme disease, co-chaired by Simon Hoare, was formed in 2017[lv]. In January of 2018, the group hosted a ‘round table meeting’ to discuss the requests of Lyme disease charities, such as Caudwell LymeCo Charity, to:[lvi]

  1. Secure a budget for Lyme disease research from the Department of Health;
  2. Create several 'Centres of Excellence' for Lyme disease in NHS hospitals;
  3. Design a public information campaign & professional information campaign; and
  4. Research and press for a more Lyme disease-supportive social security and education system.

National Institute for Health and Care Excellence (NICE) guidance, referred to above, was published last week.[lvii] We report on the content of the guidance in the final section of this feature.

POTENTIAL FOR CLAIMS IN THE UK

As discussed above, the number of cases of Lyme disease being reported in the UK is increasing.

Claims might occur in the following situations:

  1. An outdoor worker remembers being bitten by a tick, has classic symptoms such as the rash, is diagnosed with Lyme disease, treated for several weeks and recovers completely.
  2. An outdoor worker recalls a tick bite, has diagnosis of Lyme disease and more complex manifestations of Lyme disease, such as heart or nerve involvement. Treatment may last for months.
  3. An outdoor worker has been diagnosed with and treated for Lyme disease and continues to have non-specific symptoms, e.g. fatigue, and is diagnosed with PTLDS. There is no evidence of current infection, but evidence of past infection, and doctors agree that current symptoms are likely due to past infection. Symptoms and effects on daily life may continue for months or years.
  4. A worker has non-specific, long-term symptoms that they attribute to ‘chronic Lyme disease’. They refer to lots of sources advocating ‘chronic Lyme’. They may or may not test positive for past infection. They may provide test results from an overseas laboratory showing current infection, obtained using unvalidated methods. They may work outdoors and assume they were bitten by a tick, or they may be a family member of an outdoor worker and claim the disease was passed to them by their relative. They may have received a diagnosis for another condition, e.g. chronic fatigue, that they are unwilling to accept. Their true condition may be being missed as they are pursuing a Lyme disease diagnosis.

At this stage, a claim in category 4 would likely fail, as the scientific and medical consensus, as discussed above, is that ‘chronic Lyme disease’ does not exist.  The patient’s suffering may be genuine, but a tick bite is unlikely to be the cause.  Patients in categories 2 and 3 are more likely to be able to demonstrate that their disease was caused by a tick bite.  They would also need to demonstrate that the tick bite occurred through the employer’s breach of duty.  These patients may require treatment lasting for several months (see table of manifestations of Lyme for the duration of the different symptoms) and their daily lives may be affected for months.

OCCUPATIONAL LYME DISEASE

HSE provides information on Lyme disease, including which workers are at risk, and control measures that can reduce the risk of infection.[lviii] Occupations that may be at risk include:

  • Sheep farmers, particularly hill farmers and those who work with dogs;
  • Deer farmers;
  • Game keepers;
  • Veterinary surgeons;
  • Agricultural workers;
  • Forestry workers;
  • Nature conservancy workers; and
  • Rural outdoor pursuits instructors.

Lyme disease featured in the 3rd instalment of our emerging risks in agriculture series (here).

MACECHERN V SCOTTISH MINISTERS [2011] CSOH 135

‘On or about the 3rd of September 2007 the pursuer developed serious symptoms, which were diagnosed later in Hospital as caused by Lyme Disease. That is a disease caused by the bite of an infected tick. The latent period between the bite and the development of serious symptoms is variable, but is likely to be at least some weeks rather than days. As a result of the said condition the pursuer has suffered loss, injury and damage. The pursuer worked as a forester for the Forestry Commission in the Lorne District for over 20 years. Between about April and October of each year the pursuer would be bitten by ticks approximately 2 or 3 times per week. He was bitten by ticks only in course of his work. The ticks came from the environment in which he worked on a daily basis’.

The 57 year old claimant, in the Scottish case of MacEchern v Scottish Ministers [2011] CSOH 135, sought £80,000 in damages for occupationally induced Lyme disease after 20 years of working at the Forestry Commission. The claimant alleged that symptoms of extreme pain were followed by delusions and internal bleeding, requiring lifesaving surgery.[lix]

Both parties agreed that ‘Lyme Disease is a bacterial infection transmitted by the bite of a tick’. It was argued that, post-1990, the defendant employer had breached its duty to protect its employees from the risk of ‘regular and frequent exposure’ to tick bites, ‘only in the course of his work’, since there had been:

  • An ‘... absence of a suitable or sufficient assessment ...’;
  • A ‘... failure to institute and enforce an adequate system for obviating or minimising the risks from tick bites which included failure to instruct routine use of “jungle formula” repellent, failure to give advice to wear cover-all clothing and failure to issue various specified protective clothing and footwear’; and
  • A ‘... methodology for the extraction of the tick which involved the use of Vaseline’.

As such, the claimant averred that these failures were causative of the loss, injury and damage that he had sustained.

The defendant, however, argued that the measures referred to were ‘"inadequate” such as to amount to a breach of their duty of care or breach of any statutory duty they may have had towards the pursuer’.

MacEchern was a proof before answer hearing. As such, the legal issues on liability were not discussed. However, the case provides a basis upon which claims may be brought against defendant employees, with Lady Clark having assessed the relevance of the case pleadings under common law and statutory provisions.

As for the common law case, defendant counsel submitted that the pleadings were ‘irrelevant’, as:

‘... the causa causans of the pursuer's injury was a bite by an infected tick ... that must be seen in the context of a situation where tick bites are common and for the most part non-infective’.

However, the judge concluded that there would be ‘no difficulty in concluding that the pursuer's case cannot be considered irrelevant’.

In respect of statutory provisions, the judge considered that each of the following Regulations were relevant to the claim and could be deliberated at a subsequent trial on liability, while also expanding on areas of potential dispute:

  • Regulation 4 of the Management of Health and Safety at Work Regulations 1999.
  • Regulations 4, 8 and 9 of the Provision and Use of Work Equipment Regulations 1998.
    • ‘All I can say is that there appears ... to be some dispute in this case about the tweezers. There is a complaint ... that since 2004 the use of “needle-point pincers” should be used. Whether Vaseline or any other thing provided by the Commission is equipment in this context, I think is best considered after proof’ (paragraph 25).
  • Regulations 4, 6, 9 and 10 of the Personal Protective Equipment at Work Regulations 1992.
  • Regulations 6, 7, 8, 9, 12 and 13 of the Control of Substances Hazardous to Health Regulations 2002.
    • Defendant counsel submitted that the ‘definition of “biological agent” in the 2002 Regulations included a micro organism but the dictionary definition of a “tick” did not cover a micro organism’. They also submitted that ‘a “forest” did not satisfy the definition of “workplace” in the 2002 Regulations which is framed in terms of “premises” ... a forest open to the air is not “premises”. They went on to argue that ‘It was never envisaged that the 2002 Regulations were designed to apply to an encounter with a living creature which has a potential for infection ... a tick is not of itself hazardous albeit certain ticks may carry a bacterial infection’.
    • By contrast, counsel for the claimant submitted that ‘the definition of “substance hazardous to health” in Regulation 2(1) includes “a biological agent”. A “biological agent” means any micro organism … or human endo parasite … which may cause any infection, allergy, toxicity or otherwise create a hazard to human health. a tick is clearly a parasite. Whether or not it is an endo parasite may be arguable ...
    • On the application of the COSHH Regulations, the judge reasoned that it was ‘necessary to take into account both the definition of “substance” and the definition of “substance hazardous to health” ... in relation to the latter definition under reference to Regulation 2(1)(c) there is no restriction or reference to workplace. That restriction or reference appears only in the definition in relation to 2(1)(e)’. She further stated that ‘A specific definition of “workplace” is given. That term is defined in reference to “any premises …” ... the Health and Safety at Work etc Act 1974 . “premises” includes any place, I have no difficulty in interpreting that as including a forest’.
  • The Provision and Use of Work Equipment Regulations 1998 (the 1998 Regulations).

NICE GUIDANCE

Last week, NICE issued new advice on Lyme disease for GPs and specialists[lx].  The guidelines cover symptoms for which patients should be checked, tests to confirm the diagnosis, and treatments.  The aims of the guidelines are to raise awareness of when Lyme disease should be suspected and for patients to be diagnosed and treated as soon as possible. 

According to the guidelines, doctors should use their clinical judgement to check symptoms. If the bullseye rash is present, Lyme disease can be diagnosed immediately, and antibiotics can be prescribed.[lxi] Since Lyme disease symptoms are also common in other disorders, NICE recommends using a combination of ELISA and immunoblot testing. As not everyone with Lyme disease will test positive, the guidance recommends that if the clinician suspects that a patient has Lyme disease, the patient should start taking antibiotics while waiting for test results.  It is also advised that the possibility of Lyme disease should not be ruled out in patients with symptoms but no clear history of a tick bite, but that caution is required in diagnosis of Lyme disease in people without a supportive history or positive blood test. This potentially opens the door to ‘chronic Lyme disease’ claims.

Professor Mark Baker, director of the NICE centre for guidelines, said:

‘This new guideline will help raise awareness and drive up the standard of care right now on the NHS so we can spot Lyme disease sooner and provide people with prompt treatment. Our committee reviewed the best available evidence and identified gaps in what we know about prevalence in this country and the benefit of long-term treatment options. Further research into Lyme disease should be a high-priority area in the UK so we can continue to improve care’.

As discussed above, some Lyme disease patients continue to experience symptoms after treatment. In this scenario, NICE says that a second course of antibiotics may be considered if there is a chance that the first treatment did not clear the infection.  However, the review of the evidence found that the benefits of prolonged antibiotic treatment are limited. NICE advises that if unexplained symptoms persist, clinicians should seek assistance from a specialist.  NICE also suggests that women who have Lyme disease during their pregnancy are encouraged to express any concerns about their baby to their doctor, and that the doctor should discuss this with a child health specialist. Clearly, NICE are under suspicion that Lyme disease can be contracted in a congenital manner.

With the arrival of this latest guidance, it is hoped that clinicians will be more prepared to deal with cases of suspected Lyme disease. However, NICE appear to validate symptoms of ‘chronic Lyme disease’, which could increase the number of occupational disease claims and shift medical consensus that ‘chronic Lyme’ does not exist. Further research on Lyme disease in the UK is necessary if we wish to know the full extent of the risks posed.

 

[i] Lyme Disease. Health and Safety Executive. http://www.hse.gov.uk/agriculture/zoonoses-data-sheets/lyme-disease.pdf (Accessed 25 January 2018)

[ii] British Infection Association. The epidemiology, prevention, investigation and treatment of Lyme borreliosis in United Kingdom patients: A position statement by the British Infection Association. Journal of Infection 62, 329–338 (2011). https://www.britishinfection.org/files/1514/4558/9412/PIIS0163445311000727_-_Lyme_Disease_BIA_Position_Statement.pdf (Accessed 5 March 2018)

[iii] Lyme disease. NHS Choices. https://www.nhs.uk/conditions/lyme-disease/ (Accessed 25 January 2018)

[iv] Strle, F. & Stanek, G. Clinical Manifestations and Diagnosis of Lyme Borreliosis. Lyme Borreliosis 37, 51–110 (2009). https://www.researchgate.net/profile/Xavier_Puechal/publication/24278239_What_Should_Be_Done_in_Case_of_Persistent_Symptoms_after_Adequate_Antibiotic_Treatment_for_Lyme_Disease/links/02e7e51d72fd9d22e6000000/What-Should-Be-Done-in-Case-of-Persistent-Symptoms-after-Adequate-Antibiotic-Treatment-for-Lyme-Disease.pdf#page=60 (Accessed 5 March 2018)

[v] Lyme Disease Action Newsletter 20 January 2015. Page 3.   http://www.lymediseaseaction.org.uk/wp-content/uploads/2015/01/LDA-Newsletter-Jan-2015.pdf (Accessed 5 March 2018)

[vi] Halperin, J. J. Chronic Lyme disease: misconceptions and challenges for patient management. Infect Drug Resist 8, 119–128 (2015). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4440423/ (Accessed 23 March 2018)

[vii] Tuttle, C. Lyme disease antiscience. The Lancet Infectious Diseases 12, 362 (2012). http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2812%2970054-3/fulltext (Accessed 26 March 2018)

[viii] Embers, M. E. et al. Variable manifestations, diverse seroreactivity and post-treatment persistence in non-human primates exposed to Borrelia burgdorferi by tick feeding. PLOS ONE 12, e0189071 (2017). http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0189071 (Accessed 19 January 2018)

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