The National Institute for Health and Care Excellence has today published guidance on Lyme disease, for NHS doctors, for the first time.
The official guideline can be read here.
Our summary of the guideline and FAQ
The 5-minute Caudwell LymeCo guide, What does the NICE guideline for Lyme disease say?can be read here.
There is a Frequently Asked Questions section at the end of our summary. If you have questions on the guideline, you can submit them as comments at the bottom of that page.
What are some new points in the guideline?
Until today, there has been no NICE clinical guideline for Lyme disease. Doctors relied on a variety of sources of information, and anecdotal reports we received from patients suggested that approaches to diagnosis and treatment were fairly inconsistent.
There are a few points in the guideline which we hope will lead to changes in the practices we have often had reported to us:
You can catch Lyme disease anywhere
The guideline debunks the idea that Lyme disease exists only in certain “hotspots” or “endemic areas” by stating that Lyme disease can be caught anywhere in the UK.
Tests should be repeated in various situations
There is a new pathway for testing which advises that patients are re-tested in various situations. This was developed in acknowledgement of the fact that tests can sometimes have incorrect negative results. A test may have an incorrect negative result if the test is done too soon after a person develops Lyme disease, for example. (This is because the test finds the patient’s antibodies to Lyme bacteria rather than the actual bacteria, and these antibodies usually take several weeks to develop.) If a patient still has symptoms that might be Lyme disease 12 weeks after a negative test, they should be re-tested. There are also other situations in which a negative test should be repeated.
Clinical diagnosis is encouraged because tests are not always reliable
Doctors are advised to rely on symptoms and the patient’s history of possible exposure to ticks, not just on the blood test result. If a patient has symptoms that the doctor believes are Lyme disease, a negative test should not rule Lyme disease out.
The risk of congenital Lyme disease is highlighted with recommendations to help mother and baby
The guideline states that Lyme disease is not only spread by tick bites but could also be passed from mother to unborn baby. It makes recommendations on how both mother and baby should be cared for.
Longer courses of antibiotics and higher doses are recommended
The courses of antibiotics recommended to treat Lyme disease are longer and, in some cases, at higher doses than previously recommended. The published research documented high relapse and treatment failure rates at lower doses. This means the treatments in the UK guideline are now stronger than the treatments recommended in the guidelines in various other countries.
Doctors are warned that Jarisch-Herxheimer reactions can occur
The guideline includes a warning about possible Jarisch-Herxheimer reactions when Lyme disease patients are treated. Doctors are advised to look out for this, and this recommendation may help avoid patients being taken off treatment when they do need to continue it.
Doctors are reminded that patients suffer brainfog!
There is a reminder to doctors that having cognitive issues such as brain fog means some Lyme disease patients will have great difficulty describing their symptoms properly.
The research recommendations will be fast-tracked into the Department of Health
The research recommendations give a roadmap of the research that is most needed to answer key questions on Lyme disease. Since they are produced by NICE, they are fast-tracked for consideration by the Department of Health, which is the source of government funded medical research.
What about Chronic Lyme patients?
The guideline acknowledges the fact that some people suffer long-term or permanent symptoms as a result of catching Lyme disease.
If a patient has had two courses of antibiotics and is still not well, the guideline tells doctors “do not routinely offer further antibiotics”.
What exactly does this mean?
Firstly, this is not a “do not do” recommendation in which doctors are specifically told not to do something. It leaves the prescribing of additional courses of antibiotics at the doctor’s discretion.
The guideline states that there is no blood test to find out which of these patients still have an infection with Lyme disease bacteria and/or which of them have tissues damaged by the infection, which may heal slowly or may not heal. Therefore the doctor will need to make a professional judgement on this. He or she will look for symptoms commonly associated with active infection, such as painful or swollen glands, fever, severe tiredness, headaches, all-over body aches and night sweats.
If a doctor is convinced there is enough evidence that a patient still has an active infection, he may decide to prescribe more antibiotics.
What if the doctor is still not sure whether the infection has gone?
Doctors are advised also to consider referring these patients to a specialist and/or discussing them with the National Reference Laboratory.
Why is this necessary?
The purpose of this consultation is to consider other types of Lyme disease test and / or tests for other tick borne diseases. There are some types of test for Lyme disease that may be able to find out if the bacteria are still present in specific parts of the body. They may require taking fluid from one of the joints, or from the spine, and they are far more complicated than a blood test. They are only useful in certain cases, and the doctors will make a decision on whether or not to do these tests based on the patient’s symptoms.
What if a doctor believes there is no longer an infection?
If a doctor believes that a patient no longer has an active infection and that the remaining symptoms are the result of tissue damage, the guideline recommends medication to help reduce the symptoms, rather than cure. In the Lyme disease guideline, this may include painkillers, sleeping pills, antidepressants, and anxiety medications.
Patients with ongoing symptoms of Lyme disease can be so severely affected that they are unable to go back to work or school and the guideline tells doctors to offer support for these people in applying for benefits or other practical help.