I think I may have Lyme disease, how do I find out?
The best option for anyone who suspects they may have Lyme disease is to write a brief summary and take it to their GP and ask for a blood test for Lyme disease. This summary should say:
- date of tick bite or tick exposure, if known. See About ticks so you understand where they live.
- description of any rash
- simple summary of history of illness with symptoms
The reason for putting this in writing (as well as explaining it) is that GPs have little knowledge of Lyme disease and may not know which symptoms are important; they will try to record the full consultation but are unlikely to have time to type it all onto your medical record. When, sometime later, the test result comes back, the GP is likely to phone the laboratory for advice and will look at the notes. These may just say “has CFS, wants testing for Lyme”. It would be more useful if they said “had tick bite followed by illness. Many symptoms including fatigue, numbness, joint and muscle pain…. etc”. Then the lab will be able to give better advice.
Keep your summary brief, because GPs don’t have time for a lot of reading, and ask the GP to add it to your medical notes. Don’t accompany it with a lot of information from websites, as the GP won’t know how to judge the information and is likely to discard it.
How do I approach a consultation with a doctor?
Because Lyme disease is not common in the UK, many GPs may never have seen a case and most consultants know little about Lyme disease. You may have done more reading than the doctor, but bear in mind that the doctor knows more about illness than you do and will be anxious to try to give you the right diagnosis and appropriate treatment.
- Keep a simple symptom diary day by day and take it with you in case you want to look something up.
- Make a brief note before your appointment of your main symptoms and how they have developed.
- If you have many symptoms to discuss with a GP, asking for a double appointment may be helpful
- Consider taking a friend or relative with you to remind you of things, or to take notes for you. When you are ill, it is easy to forget things.
- Don’t take a lot of printouts from the internet: stick to any relevant part of the NICE Guideline or a relevant abstract from below.
- As soon as possible afterwards, write down what was said during the consultation.
See also “What you may like to give to your GP“.
My blood test result is negative, so my GP says I can’t have Lyme disease.
If you have only recently fallen ill, you may have been tested too early. If it was some time ago, then think back to when you first became ill and try to remember whether you were given any medication, perhaps for something else, around that time because it may have affected the test.
The blood test detects antibodies to the disease and these take some weeks to develop sufficiently to register as positive on the test. If during these early weeks you had a short course of antibiotics (for a rash?) or immunosuppressants, then that may have stopped the antibodies developing and can lead to a negative test result.
The NICE Guideline section 1.2.17 suggests repeat testing if Lyme disease is still suspected despite a negative test result.
It is important that you give your GP pointers towards Lyme disease but that you also let the GP consider other conditions that he/she has more experience of.
See also https://www.lymediseaseaction.org.uk/about-lyme/tests/ under “Is the blood test always right”
My doctor says I can’t have Lyme disease, it doesn’t occur where I live
The NICE Guideline states “infected ticks are found throughout the UK and Ireland”
My doctor says I have had antibiotics so I must be cured
Treatment should be guided by how you feel. Many people carry on improving for some months after treatment. If you plateau, or if you get worse, let your doctor know that patients in the UK are often re-treated following a first short course, as this may give your GP confidence to treat.
Check whether you had the correct treatment – which antibiotics and what dose? The standard treatment for straightforward Lyme disease in adults is doxycycline 100 mg twice a day for 21 days. The NICE guideline, section 1.3.11, states “Consider a second course of antibiotics for people with ongoing symptoms if treatment may have failed.”
- A paper documenting a series of cases treated in Glasgow(1) relates how 43% of the patients treated with IV antibiotics were treated with either repeat courses or with longer courses. It found that those patients treated for more than the guidelines suggested actually did better.
- A paper documenting a series of cases in London also reports how several patients were re-treated.(2)
You can print off the abstracts (the summaries) of these papers to show your GP if necessary, but be careful of presenting too much paper!
You could point your GP to the Top Ten priorities for research – agreed with the National Institute for Health Research. We do not know why Lyme disease can sometimes be apparently so difficult to cure and we don’t yet know what the answer is. A recent paper studying a large number of people (3) confirmed that some people do continue to suffer symptoms and said
“these observations call for further research into the underlying mechanisms of persistent symptoms after treatment for LB”
1) Management of suspected Lyme borreliosis: experience from an outpatient parenteral antibiotic therapy service. White B et al. 2012 QJM. Oct 15;1–6. Available from http://www.ncbi.nlm.nih.gov/pubmed/23070203
2) Lyme disease in the U.K.: clinical and laboratory features and response to treatment. Dillon R et al. 2010 Clin Med. Oct;10(5):454–7.
3) Prevalence of persistent symptoms after treatment for lyme borreliosis: A prospective observational cohort study. Ursinus J, et al. 2021 Lancet Reg Health – Europe
Please can you let me know of a specialist in the UK
There are currently no UK specialists beyond the infectious diseases consultants in every region. LDA is working with government agencies to try to resolve this. We suggest that if at all possible you work with your GP who is responsible for coordinating your care. Use the NICE Guideline which gives some information to help GPs consider negative test results and relapses.
I have had a tick bite, should I have treatment?
The only time prophylaxis (ie treatment “in case”) is recommended is if an engorged tick (one that has a swollen body, indicating it has been attached for some time) is found on someone who is pregnant or is immunosuppressed. This latter can be if they are on cancer treatment or other immunosuppressants. Then a full course of antibiotics is recommended. This is because a very short course may not adequately deal with any disease if it is present but it will stop antibodies developing. Because the blood test for Lyme disease detects antibodies if the person then goes on to develop Lyme disease they are likely to have a negative test and this will complicate diagnosis.
The vast majority of UK ticks do not carry Lyme disease, so if you have had one tick bite infection is unlikely although it is of course a possibility