The UK’s NICE Guidelines

by Janice Foster

In April 2018, the UK’s National Institute for Health and Care Excellence (NICE) published new guidelines for the diagnosis and treatment of Lyme disease.

While the new guidelines aren’t considered ideal by the patient community and their treating doctors, they are definitely an improvement on previous guidelines, and reflect the changing attitude towards Lyme disease that is occurring internationally.

Although the illness contracted in Australia is not currently considered Lyme disease, there are significant similarities. As a result, guidelines for Lyme are often referred to by our Government when discussing Lyme disease.

We hope the Australian Department of Health take note of the below key updates:

Diagnosis

Lyme disease should not be ruled out for patients with symptoms but no clear history of tick exposure;

  • Testing is not necessary for patients with EM (erythema migrans is a gradually expanding lesion or more commonly known as a bulls eye rash) rashes;
  • When testing patients without EM rashes, doctors are advised not to rule out Lyme if results are negative;
  • Patients should be educated that tests are 'limited';
  • Previously, if a patient’s ELISA result was negative, a Western Blot test would not be completed. The new guidelines require the Western Blot to be conducted regardless of the ELISA result, provided the patient has had symptoms for more than three months;
  • If tests are negative, doctors should consider consulting a specialist such as an infectious diseases specialist, a rheumatologist, or neurologist for an alternative diagnosis. Mental health experts were not mentioned, which is significant in that patients often report that their condition is dismissed as mental illness;  This attitude is also common in Australia. In their response to the Senate Inquiry’s Recommendations, the Department of Health specifically suggested that patients of Lyme-like illness receive care from psychiatrists.

Treatment

  • If a doctor has a strong suspicion that their patient has Lyme, antibiotic treatment may be started without waiting for test results;
  • Previously, patients were usually only prescribed 3-4 weeks of a single antibiotic. The new guidelines state “Further antibiotic treatment is now recommended as an option if persisting infection is a possibility”.  This is the first acknowledgement by a UK authority (that we are aware of) that Lyme may be a chronic infection.Generally, the guidelines recommend a second 3-4 week antibiotic regime, this time using a different antibiotic. They do not rule out any further treatment beyond that point, only recommending that it is not 'routinely' used.

While this is definitely an improvement, we are concerned that the International Lyme & Associated Diseases Society (ILADS) advice has not been followed.  ILADS support the use of a combination of antibiotics to deal with the different forms Borrelia burgdorferi takes to avoid eradication:

  • Previous guidelines recommended as little as 10 days antibiotic treatment in some instances. The NICE committee “decided that longer courses of 21 days of treatment should be offered as standard because of their concern at low cure rates in some studies and the lack of clear evidence for shorter courses”;This is a positive move. Often discussions regarding increasing antibiotic treatment length focus on the low risk of building antibiotic-resistant bacteria, rather than ensuring patients are given effective treatment.
  • Patients should be educated on herx (Jarisch-Herxheimer) reactions;
  • Like the recent UK inquiry into Lyme disease, the NICE guidelines note that further research into treatment is required;
  • Support for patients who continue to experience symptoms after treatment is recommended. Referral to social services for a care and support needs assessment is suggested;Doctors are also encouraged to liaise with patients’ families, educational institutions, and employers about the need for recovering patients to ease slowly back into their normal activities.

This professional and compassionate approach, if implemented, will be a welcome change to the many patients who have been ridiculed, and accused of faking ongoing illness.

The NICE guidelines are not perfect, but they are a definite improvement on previous recommendations. By promoting awareness of testing inaccuracy, the importance of prompt treatment, and the need for extended antibiotic regimes, the NICE Committee have shown an encouraging commitment to reviewing the current evidence with an open mind and a desire to improve patients’ lives.

This international trend started with the American Government’s decision to publish the ILADS guidelines on their treatment database, and will continue with the release of the French Government’s new guidelines in mid 2018. Infectious Diseases Specialist Dr Christian Perronne has revealed of the French Guidelines “…there will be no maximum for the duration of an antibiotic treatment. It will be left to the discretion of the doctor".

We look forward to reporting more about the changing approach to Lyme, and ensuring the Australian Government is aware of it.

You can read the NICE guidelines here.

You can read more about interpreting blood tests here.