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.
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 will have stopped the antibodies developing and can lead to a negative test result.
Public Health England has produced a suggested referral pathway for GPs, which your GP can access on our Resources for clinicians page or you can download it directly and print it. It states amongst other things that
- If initial test is negative and symptoms persist, repeat test after 3-4 weeks
- Antibody response fluctuates in early disease
- Early treatment with inadequate antibiotics or immunosuppressants abrogates the immune response and can explain 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 of these papers to show your GP.
You could point your GP to our documented uncertainties The Top Ten list highlights many uncertainties in treatment – this has been agreed with the National Institute for Health Research. We do not know why Lyme disease can be so difficult to cure and we don’t yet know what the answer is.
1) White B, Seaton RA, Evans TJ. Management of suspected Lyme borreliosis: experience from an outpatient parenteral antibiotic therapy service. QJM. 2012 Oct 15;1–6.
Available from http://www.ncbi.nlm.nih.gov/pubmed/23070203
2) Dillon R, O’Connell S, Wright S. Lyme disease in the U.K.: clinical and laboratory features and response to treatment. Clin Med. 2010 Oct;10(5):454–7.
Available from http://www.ncbi.nlm.nih.gov/pubmed/21117376
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 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.