What to do if you think you might have Lyme disease

If you have just become ill

Time is of the essence. Delaying a visit to the doctor can make the difference between full recovery and chronic symptoms, so see the doctor right away if you suspect Lyme disease.

1. If you have been bitten by a tick, tell your doctor the details

If you removed a tick from yourself, give your doctor the exact date of the bite.

If you have been in a situation, or doing anything, that could have exposed you to a tick bite? Tell the doctor. Have you got a dog that you have ever removed a tick from? Have you been walking in the countryside? Camping? Do you like gardening? Have you been lying on grass, or visited anywhere in Britain considered to be particularly infested with ticks?

2. Show your doctor the rash, if you have one

If you have a rash that might be a Lyme disease rash, make sure you show the doctor. Rashes cannot be diagnosed from photos which means you need to get to the doctor while the rash is still there. Even though they cannot be used for diagnosis, do take photographs of the rash as it progresses because it may be useful to show other doctors in the future, if necessary.

If you have a circular bull’s-eye rash, this is proof of Lyme disease and you should be prescribed full Lyme disease treatment without a blood test.

Visit this page for photos of rashes if you are not sure what they look like.

3. Give a good description of all your symptoms

A lot of early Lyme symptoms are similar to those of many other illnesses, particularly flu. The strange symptoms, even if they are quite mild, may help your doctor evaluate whether Lyme disease is the cause.

4. Do you need a blood test?

If you do not have a rash, your blood test will need to be done right away. The sooner you start treatment the better. Most people need at least 6 weeks to develop antibodies, however, which is why your blood test should be repeated if it is negative or ambiguous. There needs to be an interval of 4 to 6 weeks after the first test, to make sure the antibodies have had time to develop before the second test.

If you have been ill for a long time already

If you have been ill for a long time before approaching the doctor wondering if you have Lyme disease, your doctor is less likely to consider Lyme disease high up in his or her list of possible diagnoses. This is often because Lyme diease has an abrupt start with severe symptoms for most people. Some doctors also believe that Lyme disease cannot last long because it clears up on its own – this is true for some people, but it is certainly not the case for everyone.

You are likely, in this scenario, to have visited your doctor to discuss these symptoms already. The following suggestions may help you “reboot” your conversation with your GP.

1. Let your doctor be the doctor

If you think you may have Lyme disease, bear in mind that you also may not have it! Never forget that your aim is to get the correct diagnosis and a cure, not to get a Lyme disease diagnosis if this is actually wrong. This may seem like needless advice, but we at Caudwell LymeCo do sometimes speak to people so convinced they have Lyme disease that they cannot converse with their doctor about anything else. They do not give their doctor the chance to evaluate whether they have any of the many, many other chronic illnesses which cause very similar symptoms indeed.

You may have had a Lyme disease test done at a private laboratory and got a positive result. Some people believe that private alternative tests are more accurate than the NHS tests, but there is no scientific evidence behind this claim at all. This means that a positive test result from a private lab does not actually prove you have Lyme disease. Visit our page on testing for more information on what is, and is not, scientifically proven about the reliability of different tests.

2. Describe your symptoms properly

You may have described your symptoms to your friends, your husband and about five other doctors already, but has the doctor sitting in front of you heard a good description yet?

Lyme disease affects many organs in the body, and you may get side-tracked into a detailed conversation with your doctor about the first symptom you mention and miss your chance to tell him about your other, equally troublesome, symptoms.

Write a list of all your current symptoms, ranked by how badly they are stopping you doing the things you used to do, and give this to your doctor at the start of yor appointment. Be ready to give an objective explanation of how bad each symptom is. Think in terms of what you can no longer do because of each symptom. For example, saying that you need to stop for a break half way up the stairs, because you are too tired to reach the top in one go, is more informative than simply saying you are very tired.

If you have already been ill for a long time and seen other doctors, remember that when your doctor asks about symptoms, he wants to know what your body is doing and how it feels. This is not the time to tell him about tests you have had done, or what other doctors have said to you.

3. You may need a double appointment

Appointments with GPs have to last a standard length of 10 minutes. Many doctors dislike this inflexibility as much as patients do. If you have a lot to discuss and know that you will need more time, ask the receptionist to book a “double appointment” so you will have 20 minutes with the doctor. Write a list of the points you want to discuss and give this to the doctor at the start of the appointment, so he/she knows everything you need to cover.


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