Frequently Asked Questions

frequently asked questions

Q: What is Lyme disease?

Lyme disease is an infectious disease caused by a spirochetal bacteria known as Borrelia. For more details, see our ‘What is Lyme disease?’ page here.


Q: Is it Lyme disease or Lymes disease?

The correct name of the illness is Lyme disease and not Lymes disease.
Learn more here.

 

Q: How do I remove a tick?

Please see our tick removal tips here.

Q. If a tick is attached for less than 24 hours, is there less chance of catching Lyme disease?

No. A common myth is that if you remove an infected tick before it has been attached for 24 hours or more, you can reduce the chances of catching Lyme disease. However, this theory is not supported by published research and so it is important to be vigilant and seek medical advice regardless of how long a tick has been attached to your body.


Q: I don’t remember a tick bite – can I still have Lyme disease?

Yes. Tick bites are usually painless and don’t normally itch. They can occur on areas of the body that you might not be able to see easily (i.e. your back, the back of your leg or your scalp). There are also mounting but unproven theories that the disease can be passed on by a variety of biting insects.


Q: Do I have the symptoms of Lyme disease?

There are many signs and symptoms of Lyme disease and it can mimic many different illnesses. This online questionnaire, designed by American Lyme disease specialist Dr Horowitz, enables you to find out what the likelihood is of your illness being related to tick-borne disease.

 

Q: I had a bull’s-eye rash – does this mean I have Lyme disease?

Yes. An erythema migrans (EM) bull’s-eye rash is diagnostic of Lyme disease and you should be treated accordingly. There may be some doubt as to whether you have a genuine EM bull’s-eye rash as a few other rashes can look similar, in particular ringworm and cellulitis. However, some EM rashes are atypical in appearance so it is always wise to take photos and show your doctor. See here for pictures of EM rashes.

 

Q: I didn’t have any noticeable rash – can I still have Lyme disease?

Yes. Figures vary when it comes to how many people report a rash following infection. In 2010, it was said that 56% patients presented with an EM rash but one study carried out at an Infectious Disease clinic in Glasgow discovered that only 4% of their suspected Lyme disease patients had an EM rash.

 

Q: What Lyme disease tests do the NHS do and how reliable are they?

The initial test offered by the NHS is called an ELISA test which is usually performed at your local hospital laboratory and takes a few days or possibly a week to come back. Although there have been no specific studies to find out the percentage of false negatives in the UK, the reliability of the ELISA test appears to be questionable and it’s important to be aware that a negative result cannot rule out Lyme disease. 

If the ELISA test is positive or equivocal, the blood sample is usually sent to the National Reference Laboratory at Porton Down in England or the NHS Highland National Lyme Borreliosis Testing Laboratory at Raigmore Hospital in Scotland. The Western blot (sometimes called an Immunoblot) is then performed. This is a slightly better test but may still miss cases.

You can request printouts of both of these tests and it’s advisable to do so for your own records.

Similar standard testing procedures performed in the USA appear to have a sensitivity of around 50% which means that approximately half the tests carried out could result in false negatives.

Please see our Testing and Diagnosis pages for more information.

Q: How good are the NHS at dealing with Lyme disease?

Whilst awareness does seem to be growing, many of our group members have experienced misdiagnoses and a lack of care from the NHS when it comes to Lyme disease. People also report bull’s-eye rashes being dismissed as well as incorrect tick removal by GPs and hospital staff. Doctors and other practitioners can take the e-learning course established by the RCGP and Lyme Disease Action although LDUK cannot vouch for the content of the course as we have not been given access to it.

To find out more about Lyme disease patients’ experiences, please see the Caudwell Lyme Disease website posts: ‘Survey on Lyme Disease Care on the NHS’ and ‘Lyme Disease on the NHS: What is the Problem?’

Medical professionals, vets and scientists are also encouraged to attend conferences hosted by Vis-a-Vis Symposiums and the Academy of Nutritional Medicine to learn more about Lyme disease.

Q: What private testing options are there?

There are private laboratories abroad which offer Lyme disease testing. It is important to remember that the NHS don’t tend to accept results from these independent laboratories which often leads people to seek private treatment for Lyme disease. 

If you are unable to afford private testing, you can apply for a testing grant through the charity LymeAid UK.

NB. Tests cannot prove the absence of Lyme disease. It’s always best to seek the advice of an experienced medical practitioner as sometimes a clinical diagnosis is necessary.

Please see our Testing For Lyme Disease page for more information.

 

Q: I had under a month’s worth of antibiotics for Lyme disease as a one off treatment –  can I still have the disease?

Yes. The standard short treatment with antibiotics reportedly leaves 63% of people with lingering symptoms. There is an ongoing debate regarding the causes of these symptoms but ‘Lyme literate’ doctors who follow the International Lyme and Associated Diseases Society (ILADS) guidelines argue that in a majority of cases, these symptoms can be caused by an ongoing Lyme disease infection or co-infections, resulting from a number of other organisms also transmitted through a tick bite.

 

Q: How do I find a Lyme treating doctor?

Due to differing treatment approaches, this can be a complex process. Please contact us directly through our Facebook public page or discussion group

 

Disclaimer: We are not doctors or medical professionals.