Press release – Lyme disease Guideline

Lyme disease Guideline – A step forward

Leading Lyme disease charity, Lyme Disease Action (LDA), welcomes the guideline on diagnosis and treatment of Lyme disease, published by NICE this week, as a small step in the right direction.

The recommendations standardising on longer treatment duration are particularly welcome as they increase the chances of early diagnosed disease being adequately treated. The Guideline points out that the evidence on treatment and diagnosis is often poor or non-existent and this is highlighted by the several research recommendations. There is a long way to go before a truly evidence-based Guideline can be produced for Lyme disease.

Andrew Gold, a Trustee of the charity, says

“LDA is also pleased that, at last, there is formal recognition of the uncertainties surrounding Lyme disease, identified by LDA five years ago, and the pressing need for more research.”

A notable omission is the lack of a recommendation for development of specialist clinics. Doctors are recommended to seek expert or specialist advice, but there are no experienced specialists in Lyme disease in the UK.

LDA Medical Director, Dr Sandra Pearson, says

“Our medical help line is regularly contacted by Doctors seeking help to find experienced NHS specialists in the treatment of Lyme disease.  For this reason LDA has been pressing for the establishment of a network of Lyme disease clinics, where expertise can be developed, and to which GPs can refer.”

LDA is concerned that, without an experienced specialist clinic, some sick patients, especially those with complex or late diagnosed disease, will continue to seek out alternative methods of diagnosis and treatment, some of which may have little or no robust evidence behind them.

“Because Lyme disease is a multi-system disease the route to treatment of difficult cases is fractured, with patients bouncing from rheumatology to neurology to infectious diseases and so on.” says Andrew Gold. “We need to get specialists working as a team.”

For 15 years LDA has argued for research and science in fighting this debilitating disease. The charity will continue to do that because, despite the undoubted gains in Guideline, there is a lot more to do.

ENDS

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For more information, images of ticks or a typical rash, or to talk to someone from the charity, please contact the LDA press team on press@lymediseaseaction.org.uk

Further information:

Notes for editors

  • The incidence of Lyme disease in the UK is much lower than on the continent with approximately 1500 laboratory confirmed cases in England and Wales in 2017. This total does not include those diagnosed clinically following the characteristic rash or because of a failure to test and a misdiagnosis. The true number of UK cases is unknown.
  •  Lyme disease in UK ticks: an average of about 6% of UK ticks carry Lyme disease though it varies from place to place and year to year from zero to the maximum found of 18%.  This compares with much higher levels in European ticks of 20-50%
  • There are inherent limitations in Lyme disease tests which are indirect tests designed to detect specific antibodies to the Lyme disease bacteria, Borrelia. International researchers are working to develop possibly “better” tests. There are recently discovered genospecies of bacteria which may not be as well detected by current tests.
  • There is scientific uncertainty around the cause of persistent Lyme disease symptoms following treatment. In any one case it could be due to inadequately treated disease, tissue damage or an auto immune reaction. There is currently no test in routine use which can identify a still active disease.
  • Because of the relatively recent rise in cases (first UK case reported in 1986) UK clinicians have relatively little experience of Lyme disease, and a tendency to rely on the blood test to both confirm and exclude a diagnosis of Lyme disease.
  • Lyme disease has symptoms which overlap those of other diseases and conditions. Because of the lack of a definitive test, patients with non-specific symptoms often seek diagnosis from private laboratories and clinics which may use alternative tests.
  • Much of the public is aware of “co-infections” – other tick-borne infections. These appear to be a lot less common in UK ticks than those in the USA and mainland Europe, though knowledge is incomplete. The presence of additional tick-borne infections is thought to complicate diagnosis and treatment. However, the NICE guideline is for Lyme disease only and therefore cannot cover diagnosis and treatment of other diseases in addition.
  • The uncertainties in diagnosis and treatment and the overlap of symptoms with other conditions with no definitive test have allowed a controversy to arise. This has been fuelled by the past refusal of UK authorities to recognise the uncertainties.
  • The chair of LDA, Stella Huyshe-Shires, sat as a lay member on the NICE Guideline Committee. She is presenting the guideline at a Scandinavian scientific conference, NordTick 2018, on April 12th.

 Issued by Lyme Disease Action,

Striving for the prevention and treatment of Lyme disease and associated tick-borne diseases.

Registered Charity Number 1100448 – Registered Company Number 4839410