Prophylactic (preventative) treatment
The NICE Guideline for Lyme disease does not recommend prophylactic (preventative) treatment following a tick bite. The RCGP Lyme Disease toolkit does state that this can be considered for certain high risk cases (e.g. prolonged tick attachment in a Lyme endemic area, multiple concurrent tick bites or if immunosuppressed). However, you may wish to go to your GP to seek their advice and get the bite documented on your medical records.
Treatment for acute/early Lyme disease
The NICE Guideline for Lyme disease was published in 2018 and sets out guidance on diagnosis and management of Lyme disease. It aims to raise awareness of when Lyme disease should be suspected and ensure that people have prompt and consistent diagnosis and treatment.
Acute Lyme disease is treated with antibiotics. Please note that the type of antibiotic varies depending on whether you are an adult or a child or pregnant. It is also important to ensure that you are receiving the maximum amount of treatment recommended by the NICE guideline (each course should be between 17-28 days depending on the age of the patient, the type of antibiotic prescribed and symptoms), as some doctors may not be familiar with the guideline and may inadvertently undertreat the infection. It is essential that you complete each course of antibiotics. Make sure you have an appointment with your doctor before the end of the course to review your progress as if symptoms persist, you may require a second course of treatment, which if necessary needs to be prescribed as quickly as possible after the initial course.
You can see an infographic of treatment protocols here.
The NICE Lyme disease guideline states; ‘consider a second course of antibiotics for people with ongoing symptoms if treatment may have failed’. The second course of antibiotics is generally a different type to the first.
The NICE guideline says ‘do not routinely offer further antibiotics’ following two courses but this does not mean it is not possible to make a case for ongoing treatment if improvement is experienced on treatment followed by a decline when treatment is withdrawn.
Be aware of the Herxheimer reaction which is a worsening that can occur as the bacteria is killed. It is important for your doctor to distinguish between this reaction and a drug allergy. This reaction is usually short lived if it occurs.
It is important to note that you can be reinfected with Lyme disease. Having had the condition already does not make you immune to the bacteria that causes Lyme disease.
The NICE guideline frequently advises referrals to a ‘specialist’. It is important to be aware that currently, there are no NHS specialists who specialise solely in treating Lyme disease and depending on symptoms, you may be referred to an infectious diseases, neurology or rheumatology consultant.
Note: Be aware that if you are prescribed doxycycline, it can make you extremely sensitive to the sun even in winter. Ensure you stay upright for 60 mins after taking it and always take it on a full stomach. You can find more information on taking doxycycline here.
Many Lyme treating practitioners will advise that when on antibiotics you may also want to consider taking probiotics, ideally taken 2+ hours away from the antibiotic.
Things to tell your doctor
To help your doctor assess your case, it can be useful to make some notes covering what happened. For example: I spent the day in a park which had long grass and wooded areas. I found an embedded tick the next day and removed it. It was large and engorged. A week later I noticed a rash which started spreading (include photos if you took them). I then started to have headaches, neck stiffness, became light sensitive and feIt like I had the flu (mention any other symptoms you are experiencing). You may also wish to print a copy of the NICE guideline here so that you can have it with you during the appointment, or direct your GP to the online RCGP course for medical professionals.
Treatment for late stage Lyme disease
Treatment of late stage Lyme disease can be controversial. The best way to treat Lyme disease is embroiled in a highly political debate. One theory is that Lyme disease is an easily treatable, self limiting infection whereas another school of thought is that it’s an insidious disease, capable of evading the immune system and persisting beyond a short course of antibiotics, therefore requiring longer term treatment.
Regardless, persistence of Lyme disease after antibiotic treatment has been demonstrated in both animals and humans. This article from lymedisease.org explains further.
UK Health Security Agency
The UK Health Security Agency’s current view tends to agree with the Infectious Diseases Society of America’s (IDSA) view which doesn’t acknowledge Lyme disease as a chronic infection and short courses of antibiotics are generally recommended. However, recently the CDC (Centers for Disease Control and Prevention) have recently included Lyme disease in a list of diseases that can lead to lingering chronic symptoms. The CDC acknowledge that it is not fully known why some people experience chronic general symptoms after an infectious trigger, as in Lyme disease but do state that they intend to fund studies to learn more about how to recognise and treat patients who experience chronic symptoms following an infectious disease amongst their aims over the next year amongst other objectives. Link here
Any symptoms that persist beyond treatment have generally been ascribed to a condition currently known as Post-Lyme Disease Treatment Syndrome. One study conducted in the US showed that more than 50% of patients were still ill 6-12 months after a short term course of antibiotics, arguing the case for re-treatment. The NICE guideline for Lyme disease was published in 2018 and this is now the advice most doctors in the UK will follow.
Doctors who form the International Lyme and Associated Disease Society (ILADS) tend to recognise the need for longer courses of integrative treatment in some cases due to what they view as the persistent nature of the disease and also take into account possible co-infections and other aspects of chronic illness which may be contributing to symptoms.
This debate has divided the medical community and it can be suggested that it leads to possibly two standards of care. Doctors who do treat patients for longer than the recommended short courses of antibiotics may feel as though their practice can be questioned and frowned upon and patients can find themselves caught in the middle of the debate.
What to do?
Some NHS doctors are not aware or do not recognise the later stages of Lyme disease. The NICE Guideline focuses on treatment of the acute stage of the disease and doctors are limited on the amount of treatment they can prescribe. Patients who are still unwell after receiving a short course of treatment for Lyme disease are usually forced to seek private or alternative treatment if they can afford to do so. As there are so few Lyme treating practitioners in the UK, this can even involve trips abroad. There is also the issue of patients who were never treated during the onset of their illness and who have been misdiagnosed with other conditions for years.
Some patients choose to use a mixture of treatments from both conventional and alternative medicine. As there is so little research into the most effective treatment for late stage Lyme disease and its associated conditions, people usually discover that different treatment options suit different people and that there is no standard protocol.
Many of the Lyme treating practitioners look beyond simply a Borrelia infection and examine their patients for co-infections, opportunistic infections, hormonal imbalances, nutritional deficiencies, food intolerances, heavy metals and mould toxicity and many other pieces of the often complex puzzle.
If all causes of a patient’s chronic illness are addressed, Lyme treating practitioners usually believe that remission is possible but they are often wary of using the term ‘cure’ because there is a chance of relapse as these infections possess the ability to become dormant and reactivate if the body is under stress.
There are also many books available on the complexities of Lyme disease and chronic illness.