This was picked up very quickly across the country and resulted in a surge of enquiries to LDA’s patient help email service. These included emails from patients who had seen the EM rash on themselves some years ago and suddenly realised that Lyme disease might be the cause of their manifold symptoms. This highlights the importance of public awareness, and we have to hope that GPs also saw the article.

Download your copy here.

Prof Bendelow began with the biomedical model of ‘modern’, ‘western’ medicine as epitomised by 19C ‘Germ theory’ which continues to hold sway. The idea of a single cause for a particular disease and the search for a cure led to the discovery of new medicines, including antibiotics. But as people live longer, the reality of chronic disease, possibly with multiple causes and uncertain remedy has emerged. During the 20C medical specialities burgeoned and technology advanced, deconstructing the patient and locating their various diagnostic parameters within the laboratory. In the 21C, limited resources have become stretched due to increasing demand; whilst at the same time medical advances outstrip restricted health budgets. The need for rationing means that in the 21C, patients need to be included as key stake-holders in the debate about uncertainties, rationing and best value in healthcare.

When I stop and think about chronic Lyme disease and the known uncertainties, it seems to me that we are not just struggling with a limited evidence base and understanding; but there seems to be a huge disconnect between the values of 19C germ theory, 20C laboratory medicine and the 21C culture of patient involvement as valid stakeholders in chronic illness. Patients have their own goals and are driven by the necessity to find information and take advice from fellow sufferers. As such, a valid body of patient expertise and an appetite for quality information has evolved over time. At the same time, it feels as if the 20C ‘Fast-Forward’ button propels Lyme disease patients from sick-bed to serology test kit before the truth of their stories can be heard and taken into account. Patients who are aware of the uncertainties and do not accept being processed in this way are vilified as being unscientific or ‘antiscience’, along with those who advocate on their behalf.

Prof Bendelow concluded by saying that she hoped values based medicine would take its place alongside evidence based medicine, opening the door and actively welcoming patient engagement and shared decision making. Within this context, the emotional experience of pain and chronic illness is not only valued but meets with the compassion and empathy it deserves.

Sandra Pearson

One of those moments when you wonder “what if I had done that…?”. What if, as I turned round from picking up my coffee at the conference reception and saw Sally Davies 10 yards away (the Dame Professor Sally Davies who is currently Chief Medical Officer) I had gone across to her and said “before your time, a previous CMO said that patients who wanted to know whether they had chronic Lyme could be definitively diagnosed by the HPA’s blood tests. This has been shown to be quite wrong but is still blighting the lives of patients. Can you do anything?”

Well, too late, we’ll never know, because someone else went up to her and the moment was lost.

Somewhere in a parallel universe. . . . . . .

The UK Cochrane Centre was holding a 21st anniversary symposium, and there were some very good talks. Including that from Sally Davies who said researchers must think about the outcomes that matter to patients and to practising clinicians. It is a pity she didn’t stay for the following day and hear Ben Goldacre lay into the Department of Health for pontificating in response to FOI requests that “there is a regulatory framework; it is impossible for medicines to be approved without proper procedure etc etc “ – when they must know that it is simply not true and manufacturers can wriggle their way out of any framework.

Now that the DH knows that it simply isn’t true that the HPA tests can “definitively diagnose” every case of chronic Lyme, will anything be said, or do we need a Ben Goldacre to turn things around? Well, time will tell as the world it is a-changing.

In the USA, it’s getting more dangerous by the minute as more and more people get sick; or think they get sick. The talk on “Overdiagnosis” by two Americans informed us that not only is March Brain Injury month, Colorectal Cancer Awareness month, DVT Awareness month (and several more), but this week is Root Canal Awareness week! Americans are being advised from every magazine, billboard and website, that although they feel perfectly well, they may not be. Apparently “If you have skin you are at risk of melanoma”!

Happily the NHS is not going to be exhorting us to come and have a free “scan of everything” to see if we have any “incidentalomas” which need operating on at great cost. However, neither is it, at the moment, offering us treatment for probable Lyme disease. How can anyone be surprised that patients get driven to the private sector which is bound to take their money for tests and treatment – valid or not valid.

So to answer the question posed by the symposium “How can Cochrane best support patients and practitioners in shared decision-making in the 21st century” I would say “by listening”. Listening to the patients who have documented that there are uncertainties in diagnosis and treatment of Lyme disease; and listening to the practitioners who say they found a longer, or repeated, course of treatment made a difference.

Engage with us and listen. There is a world of uncertainty out there, and sick people who need evidence to back up treatment to get their lives on track and their selves back to work and out of the NHS pillar-to-post system which should not be paying for all these multiple non-interventions and GP visits.

Just listen.

Lyme disease is an infectious disease transmitted to humans by the bite of an infected tick and, according to the BBC, there are now more deer in the UK than at any time since the last Ice Age.

As the UK’s largest wild mammal, deer support what seems to be a growing and spreading population of ticks. Deer themselves do not carry the Lyme disease bacteria but, by playing host to adult ticks and carrying these through urban parks (such as Richmond Park in London) as well as countryside (including country gardens), they spread the tick eggs, which start a new generation. These eggs hatch and the resulting ticks will feed on Lyme disease-infected mice and birds, pick up the bacteria and then pass them on to humans.

Ticks can be found all over the UK in gardens, woods, moors and parks. They are also found across Europe, Scandinavia and North America.  (NB: Not all ticks carry Lyme disease – infection rates in tick populations vary by tick species and geographic region.)

Lyme disease numbers have been increasing year on year, but nobody knows exactly why. The Health Protection Agency believes the figures of confirmed cases to be around 3,000 per year. Lyme Disease Action believes the true numbers are much higher – probably over 15,000 cases per year – as many go undiagnosed. The reason for the increase can’t be pinpointed exactly, but factors may include the large increase in the UK’s deer population, damper summers, milder winters, higher recreational use of parks and countryside and a modest increase in awareness of the disease.

Comments Stella Huyshe-Shires, chair of Lyme Disease Action, “The role of deer is twofold: they spread the ticks, but they kill off the bacteria. Overall, we don’t know whether their net effect on Lyme disease is good or bad; nature has a habit of being complicated.”

Lyme disease causes a range of unpleasant symptoms which may include a circular red rash, headaches, a stiff neck, extreme fatigue, muscle and joint pain, and disturbances of sight, hearing, digestive system and sleep. If left untreated it can progress to the joints, the heart and the nervous system.

 Lyme Disease Action is a charity striving for greater awareness of Lyme disease and associated tick-borne diseases.

Ends/7 March 2013

Note to Editors:

1) The Moorland Association represents the owners and managers of 850,000 acres of heather moorland in the North of England and strongly endorses the work of Lyme Disease Action. 350 square miles of tick-harbouring bracken have been controlled in the last decade in the UK, yet it is still on the increase. Moorland Association members have been responsible for a large proportion of bracken spraying to date, but the EU ban on Asulam – the only selective and safe herbicide – could lead to all the good work being undone. See http://www.moorlandassociation.org/ for more details.

2) A Lyme disease poster, showing how to remove a tick correctly, and leaflets on Lyme disease, are available for publication if required or, free of charge, for readers to take to their own local GP or veterinary practice. A fact sheet is also available on request. Tick removers can be ordered via the Lyme Disease Action website and cost from £4.99 including p&p.

Press: Issued by Lyme Disease Action’s press office (www.lymediseaseaction.org.uk).   

For more information, or to speak to Stella Huyshe-Shires, the Chair of Lyme Disease Action, please contact Sue Ockwell or Helena Hamlyn via email – press@lymediseaseaction.org.uk – or ring 020 8891 4440

They’ve seen it all before, of course, hundreds of times. Wow! A surfeit of architecture. Manchester (where we had the last JLA meeting) seemed full of confident Victorian statements: big solid buildings all demonstrating impressive wealth and power and certainty. Snarling stone dragons beside the door to the courthouse.

London is far more varied and never ceases to delight me. You walk past Georgian churches and have glimpses of St Paul’s. The Eye soaring above the Thames. More human somehow because of the variety and the underlying history everywhere. What really struck me was the eating places everywhere. Coffee shops, bars, restaurants. On every street, four, five, six in a row. No wonder Londoners need a London Weighting Allowance to keep this lot afloat. Recession – what recession?

Brilliant meeting. Met Sir Iain Chalmers, founder of the James Lind Initiative. He is aware of the hard time we have had getting doctors to participate in our JLA PSP and trying to persuade the Department of Health to listen to us.

Then walk back to Waterloo – coffee shops and restaurants doing even MORE business. Lights coming on in the dusk – absolutely beautiful over the river. What seemed like the entire population streaming through the station, trains announced at least one a minute; you’d think London would be empty after this exodus. Finally boarded. Thank heaven for a seat. 3 hours steadily travelling westwards.

Home. Dark hedges; water still running off the fields down the lane; smell of wet leaves. Stars in the dark sky and a bright planet in the West. Good to be back.

Stella Huyshe-Shires

Do ticks exist in central London and other cities? Surely I have to be somewhere rural to be at risk?

Lyme disease is found across the UK, in city parks (such as Richmond Park in suburban London) as well as in rural areas; you can be just about anywhere in the UK and a tick can latch on to you. The hedgehog tick and fox tick also carry and transmit Lyme disease so, wherever there are hedgehogs or foxes, there is a risk of Lyme disease: in overgrown urban gardens and town parks alike.

This all sounds a bit dramatic – I’ve always heard of ticks, but is it something that I really need to be concerned about?

There’s no need to be afraid – it’s more a case of being aware; knowing how to reduce the chances of being bitten, how to remove a tick and knowing what to look out for in the way of symptoms. We do know, however, that the number of confirmed cases of Lyme disease is on the rise[2]. The reason for the increase can’t be pinpointed exactly, but factors may include an increase in the UK’s deer population, damper summers, milder winters, higher recreational use of parks and countryside and a modest increase in awareness of the disease.

So, what should I do if I am bitten? How should I remove a tick? I’ve heard people talk about using Vaseline or burning them off.

Burning a tick off, squashing it with your fingers or smothering it in Vaseline or lemon juice is totally the wrong way to handle tick removal. Irritants such as these may cause the tick to regurgitate the contents of its stomach into the bloodstream of the person on whom it is feeding – increasing the chance of infection. Instead, ticks should be removed as quickly as possible with a tick removal tool[3]. If you don’t have a tick removal tool, use a thread of cotton wound round close to the skin and pull upwards or, alternatively, cut a slit in a plastic card and slide that under the tick’s body. If you have been bitten by a tick and notice any of the symptoms below, seek medical help straight away. Diagnosed and treated early, Lyme disease can be treated successfully with antibiotics.

Does everyone with Lyme disease get a rash?

Contrary to popular belief, not everyone who is bitten by an infected tick will get the text-book circular red rash – surveys have shown that around one in three do not see a rash. Other symptoms include headaches, a stiff neck, extreme fatigue, muscle and joint pain, and disturbances of sight, hearing, digestive system and sleep. If left untreated it can progress to the joints, the heart and the nervous system.

Do all ticks carry Lyme disease?

No. There have been few studies in the UK, but those that have analysed tick infection rates have found between 2% and 17% of ticks to carry Lyme disease. This is why awareness of Lyme disease is so vital, as people need to know what symptoms to look out for.

Will I know if I’ve been bitten?

Not necessarily. Ticks are tiny – the size of a fullstop on this page – and, because they inject their host with an anaesthetic, their bite does not cause irritation and can easily go undetected. UK studies report that about one in three people do not notice a tick bite and, as tick bites do not itch like mosquito bites, awareness is important to aid diagnosis.

So, what precautions should I be taking to avoid Lyme disease?

First and foremost, check yourself for ticks during the day and very carefully when you wash or shower after walking or cycling outdoors. Often ticks will hide in warm dark corners of the body, such as the groin, back of the legs, underarms or hairline. Remove any ticks found attached as soon as possible. When possible, wear long sleeves and trousers when walking through long grass etc., brush off clothing before going inside, use an insect repellent (look for those containing DEET) and try to avoid areas of overgrown vegetation. Says Stella Huyshe Shires, Chair of the charity Lyme Disease Action, “Everyone should enjoy the countryside, but it’s important to be tick-aware”.

Lyme Disease Action (www.lymediseaseaction.org.uk) is a charity striving for greater awareness of Lyme disease and associated tick-borne diseases.

Ends                                                                                                            12 February 2013

Note to Editors:

A Lyme disease poster, showing how to remove a tick correctly, and leaflets on Lyme disease, are available for publication if required or, free of charge, for readers to take to their own local GP or veterinary practice. A fact sheet is also available on request. Tick removers can be ordered via the Lyme Disease Action website and cost from £4.99 including p&p.

Press: Issued by Lyme Disease Action’s press office (www.lymediseaseaction.org.uk).

For more information, or to speak to Stella Huyshe-Shires, the Chair of Lyme Disease Action, please contact Sue Ockwell or Helena Hamlyn via email – press@lymediseaseaction.org.uk – or ring 020 8891 4440.

[1] Tick Bite Prevention Week is an annual national awareness week, which is organised and funded by the charity BADA-UK (www.bada-uk.org).

We do not know whether any of the relapsing fever Borrelia are present in the UK. B. miyamotoi appears to cause a very similar infection to that of the better known Lyme disease Borrelia (B. afzelii, B burgdorferi, B. garinii). The principle (but not the only) differences appear to be less frequently causing an erythema migrans rash and more frequently causing fevers. What is certain is that it is perfectly possible for a UK holidaymaker to contract this infection in Europe, and now we know also in the USA.

This report, therefore, simply highlights the uncertainties our recent project has confirmed:

• the species of Borrelia causing UK disease are not known
• the best test for detecting UK Borreliosis is not known
• the best treatment is not known

On we go to find more answers about the infections caused by these fascinating and complex organisms.

There is a fuller discussion of this news on our Research Papers page: Borreliosis: not just Lyme.

Krause PJ, Narasimhan S, Wormser GP, Rollend L, Fikrig E, Lepore T, Barbour A, Fish D. N Eng J Med 2013 Jan 17; 368(3):291-3.

Introduction

On 17th January 2013 news from America announced the discovery of ‘a new tick-borne infection that shares many similarities with Lyme disease’(1). The bacteria, which is not new, is called Borrelia miyamotoi , a relative of those which cause Lyme disease. Genetically, it is more closely related to the relapsing fever group of spirochaetes(2). Borrelia miyamotoi was first discovered in 1995 in Japan(3). Globally, it is transmitted by the same ticks that carry and transmit Lyme disease to humans.

The USA

In America, Borrelia miyamotoi was first discovered in Ixodes scapularis ticks back in 2001 by a team from Yale University(4). In addition to trans-stadial transmission (larva ->nymph ->adult), transmission from egg to larva was shown in 6-73% of the offspring of infected females, which is thought to be rare in Lyme disease. At that time the team concluded that ‘further work is needed to determine the potential public health significance of yet another zoonotic agent transmitted by this tick species.’

Europe

The first report of a B. miyamotoi -like spirochaete in an Ixodes ricinus tick in Europe was in Sweden in 2002.(5)

Evidence of human infection first came from Russia in 2011 (6). A study of 302 patients investigated for tick-borne infections showed that 17% were infected with Borrelia miyamotoi.(5) Confirmatory tests were ELISA (EUROIMMUN AG, Lübeck, Germany) and PCR. The time from tick bite to onset of symptoms (12-16 days) was longer, whereas the time from onset of symptoms to hospital admission was shorter (1-2 days), compared to Lyme disease. Erythema migrans rash was seen in only 9%, making clinical diagnosis more difficult. Apart from this, most patients presented with similar symptoms to Lyme disease, though the number and severity of symptoms was higher with B. miyamotoi . Relapsing ’flu-like illness with fevers as high as 39.5C occurred in 11% and symptoms included headache, chills, fatigue, vomiting, and myalgia. B. miyamotoi infection was treated with the same antibiotics used to treat Lyme disease: 14 days of oral doxycycline 200mg or IV ceftriaxone 2g per day. The consequences of untreated infection and any effects on pregnancy are currently uncertain. Co-infection with other tick-Borne pathogens may increase disease severity. The rate of tick infection in the area was 1-16%, which is similar to rates of infection with B. miyamotoi in ticks in Europe and America.

Current interest

The interest created in January 2013 arises from the January 2013 edition of the NEJM in which there is a case report of an ‘older immunocompromised patient’ with progressive mental deterioration who was diagnosed with meningoencephalitis caused by Borrelia miyamotoi, directly detected using microscopy and PCR of the CSF (cerebrospinal fluid).(7)

In the same issue, in a letter to the Editor, Krause et al. confirm human Borrelia miyamotoi infection in the USA, in all areas where Lyme disease is endemic.(8) Archived specimens from endemic areas (1999-2010) were tested for the presence of GlpQ antigen which is reactive to B. miyamotoi (and other relapsing fever spirochaetes) but not B. burgdorferi .(9) Results showed that 21% (n=3) of 14 patients investigated for a late spring or summer viral-like illness tested positive for this antigen, with rising convalescent antibody titres, suggesting recent infection. None were immunocompromised. Treatment was with doxycycline or amoxicillin.

Where now?

We do not know whether any of the relapsing fever Borrelia are present in the UK. B. miyamotoi appears to cause a very similar infection to that of the better known Lyme disease Borrelia (B. afzelii, B burgdorferi, B. garinii). The principle (but not the only) differences appear to be less frequently (maybe never) causing an erythema migrans rash and more frequently causing fevers. What is certain is that it is perfectly possible for a UK holidaymaker to contract this infection in Europe, and now we know also in the USA.

The Russian study(6) showed that the ELISAs currently used in Europe as a screening test for Lyme disease seem to be moderately successful at detecting B miyamotoi infections. However, we do not know whether these infections would be confirmed by an immunoblot : currently a critical step towards treatment in most of Europe. Krause et al gave no detail of their immunoblot and it is a pity that this study has been published as a letter as opposed to a peer reviewed paper which would contain corroborating data. The GlpQ antigen they report using would have reacted to other relapsing fever Borrelia as well and PCR does not appear to have been used to check, as it had been in the Russian study.

This report, therefore, simply highlights the uncertainties our recent project has confirmed:

• the species of Borrelia causing UK disease are not known
• the best test for detecting UK Borreliosis is not known
• the best treatment is not known

On we go to find more answers about the infections caused by these fascinating and complex organisms.

References

1. Yale News, January 16, 2013 http://news.yale.edu/2013/01/16/so-new-it-doesn-t-have-name-yale-researchers-discover-tick-borne-infection
2. Bunikis J, Tsao J, Garpmo U, Berglund J, Fish D, Barbour AG. Typing of Borrelia relapsing fever group strains. Emerg Infect Dis 2004Sep;10(9):1661-4.
3. Fukunaga M, Takahashi Y, Tsurata Y, Matsushita O, Ralph D, McClelland M, Nakao M. Genetic and phenotypic analysis of Borrelia miyamotoi sp. nov., isolated from the ixodid ticks Ixodes persulcatus, the vector for Lyme disease in Japan. Int J Syst Bacteriol. 1995 Oct; 45(4):804-10.
4. Scoles GA, Papero M, Beati L, Fish D. A relapsing fever spirochete transmitted by Ixodes scapularis ticks. Vector Borne Zoonotic Dis. 2001 Spring; 1(1):21-34.
5. Fraenkel CJ, Garpmo U, Berglund J. Determination of novel Borrelia genospecies in Swedish Ixodes ricinus ticks. J Clin Microbiol 2002 Sep; 40(9): 3308-12.
6. Platonov AE, Karan LS, Kolyasnikova NM, Makhneva NA,Toporkova MG, Maleev VV, Fish D, Krause, PJ. Humans infected with relapsing fever spirochete Borrelia miyamotoi , Russia. Emerg Infect Dis 2011 Oct; 17(10):1816-23.
7. Gugliotta JL, Goethert HK, Berardi VP, Telford SR 3rd. Meningoencephalitis from Borrelia miyamotoi in an immunocompromised patient. N Eng J Med 2013 Jan 17; 368(3): 240-5.
8. Krause PJ, Narasimhan S, Wormser GP, Rollend L, Fikrig E, Lepore T, Barbour A, Fish D. Human Borrelia miyamotoi infection in the United States. N Eng J Med 2013 Jan 17; 368(3):291-3.
9. Schwan TG, Schrumpf ME, Hinnebusch BJ, Anderson DE Jnr, Konkel ME. J Clin Microbiol 1996 Oct; 43(10): 2483-92.

Lyme disease in a Glasgow ID Clinic

This study looks at the ‘real world experience’ of an infectious diseases clinic in Glasgow using Outpatient Parenteral Antibiotic Treatment (OPAT), in the form of intravenous ceftriaxone, for treatment of suspected or proven Lyme disease. The conclusion given in the abstract is that “OPAT was an effective way of administering IV treatment for LB but should not be undertaken lightly due to the high rate of adverse events and low rates of success in certain patients groups seen in this study.”

However, there are other elements of the study that LDA thought worth drawing to clinicians’ attention. We present an outline of the study and LDA’s response below.

The paper is a retrospective review of all patients with suspected Lyme disease treated with outpatient intravenous ceftriaxone in Glasgow from January 2000 to June2011. It looks at outcomes, appropriateness of current guidelines when applied to the ‘real world’ of clinical practice and records any adverse effects of treatment. Most patients (91.7%) self-administered the treatment through a peripheral or central venous cannula following training.

Results

76 patients were identified and records were available for 72, of which 79% were treated from 2007.

The clinic deals with referrals for 7 of the 14 Scottish Health Boards in a ‘highly endemic region.’

• 68% of the referrals were from Greater Glasgow & Clyde Health Board.
• Median age: 42 years (range 15 – 89 years). 56% were female.
• 39% came from General practice and 38% from Neurology.
• The majority of patients had positive/equivocal serology; 18% of patients were seronegative.
• 76% had ‘potential tick exposure or risk factors for LB’ and 39% had recollection of one or more tick bites. 19% had ‘no recollection of a tick bite and no identifiable risk factor for LB.’

Suspected diagnoses at referral:

Neuroborreliosis 60%, Chronic Lyme borreliosis 17%, Lyme Arthritis 15%, Early Lyme borreliosis 4%, Cardiac Lyme borreliosis 3%, Uveitis 1%.

Common Symptoms included:

Nerve root pain and peripheral sensory problems 47%, Fatigue 44%, Joint pain 26%, Headache 15%, Muscle weakness 13%, Seventh Nerve/Facial palsy 10%, Cognitive problems 10%, Muscle pain 8%, Hearing Loss/ Tinnitus 7%, Inflammatory arthritis 7%.

In general: ‘A wide range of symptoms were reported and multiple symptoms common.’

Erythema migrans rash was present in only 4% of patients, with unspecified rash in 4%.

49% of patients were treated according to guidelines and 50% outside guidelines. Patients treated outside guidelines included those with negative serology, those who received longer or repeated courses of intra-venous treatment and 32% who received oral antibiotics following on from intravenous: median 3 weeks (range 1-8 weeks).

The median duration of ceftriaxone was 21 days (range 1-43 days).

Median follow-up was 4 weeks after stopping treatment (range 0-204 weeks).

Definite improvement was seen in 28% patients; modest/slight or transient improvement in 33% and no improvement in 36%. The authors combine the latter groups in their analysis.

The authors commented that ‘Patients’ treatment response according to serological status and adherence to published guidelines showed conflicting results.’

61% of those with positive serology who received prolonged therapy showed definite improvement as well as 23% of those with negative serology.

Poor outcome was seen in those with positive serology where guidelines recommended oral treatment (9% definite improvement), and those who received intravenous therapy as per guidelines (23% definite improvement).

Adverse reactions included a surprisingly high rate (18%) of neutropenia* (reduced number of neutrophils which are a type of white blood cell), abnormal liver function tests (11%), diarrhoea (6%) of which only one case was due to C. difficile, line infection (4%) with one patient stopping treatment as a result of severe sepsis. Less common were rash (4%), allergic reaction** (3%), headache, fatigue, nausea, oral thrush, shingles and dyspepsia (all 1%).

* One patient stopped treatment due to agranulocytosis (severe neutropenia) which then resolved. **One patient had anaphylaxis after the first dose of ceftriaxone.

The authors comment that their most striking finding was 18% rate of neutropenia, compared to less than 1% in other clinical trials of this drug, with agranulocytosis in less than 0.1%. Limitations of the study are that it is retrospective; it follows a small number of patients with a wide range of symptoms and has no pre-determined robust measure of success or failure of treatment.

The authors conclude that treatment ‘is likely to remain an individual physician patient decision based on a frank pre-treatment discussion of risk and benefit’.

 ~~~~~~~~~~~~~~~~~~~

In LDA’s letter of response we emphasised the need for more research as indicated by the James Lind Alliance process, which at the time was nearing its conclusion. We emphasised the high number of seropositive individuals who showed definite improvement with prolonged treatment (61%) as opposed to those treated within guidelines (20%). We argued that this was only ‘inconsistent’ because it appeared to cast doubt on guidelines when applied to the real world. We emphasised that this is the second UK paper to show improvement following treatment of seronegative individuals and call for improvements in study design.

We question whether the high rate of neutropenia could have been related to the group of patients, specifically querying whether other tick-borne infections such as Anaplasma, a known cause of neutropenia had been considered.

• The authors have not replied to our letter – we wonder if they agree with us?
• QJM is a high impact international journal.

~~~~~~~~~~~~~~~~~~~

Stricker, De Long and Johnson also responded, using a statistical method to show that in their opinion “the study demonstrated a significant benefit of prolonged vs. short-course antibiotic therapy in carefully chosen patients with ‘debilitating symptoms’ of Lyme Borreliosis.”

The authors, White et al, replied stating that application of Stricker et al’s statistical method was not valid and “subgroup analysis carried out in this fashion is fraught with errors in interpretation.” They call for the clinicians “to develop a larger, well-designed randomized control trial with robust outcome measures to provide clarity on this issue.”

~~~~~~~~~~~~~~~~~~~

A summary of all this?

• The evidence on the ground indicates that guidelines for Lyme disease are not being adhered to because they are inadequate
• They agree with this in the USA and in the Netherlands (the latter joined us for the JLA workshop)
• LDA’s JLA project has confirmed that there are uncertainties in both diagnosis and treatment.

What are we waiting for?