Lyme disease - Diagnosis 

Diagnosing Lyme disease 

Lyme disease can be a difficult condition to diagnose, particularly in its latter stages. This is because its symptoms are also shared by other, more common conditions such as infections and arthritis. Blood tests are important and useful in acute infection but don’t always confirm the diagnosis.

The characteristic pink or red "bull’s-eye" rash of Lyme disease can provide an important clue, and around 90% of people with the condition will develop the rash in the first three to 30 days.

If you do not develop a rash but develop flu-like symptoms followed by mid-late stage Lyme disease symptoms such as arthritis (join pain and swelling), headaches or depression, your GP may ask whether you have spent time in woodland or heath areas where ticks are known to live.

If it is possible or likely that you were bitten by a tick, your GP will refer you for tests to confirm a diagnosis of either Lyme disease or a different condition.

Testing

If Lyme disease is thought to be a possible cause of your symptoms, you will need to have some tests to confirm or rule out a diagnosis.

The tests need to be carried out at least a few weeks after you were bitten by the tick because it can take this long for the infection to develop. You may need to be re-tested if Lyme disease is still suspected after a negative test result.

The two tests that are used to help diagnose Lyme disease are:

  • enzyme-linked immunosorbent assay (ELISA) test
  • Western Blot test

These are described below.

ELISA test

The first test that you will have is a type of blood test known as an enzyme-linked immunosorbent assay (ELISA) test. The ELISA test looks for specific antibodies that are produced by your immune system to kill the Borrelia burgdorferi bacteria.

The ELISA test is not 100% accurate as it can sometimes produce a positive result even when a person is not infected with Lyme disease (known as a false-positive result). This may happen if a different condition is causing your symptoms, such as syphilis, glandular fever or rheumatoid arthritis. Therefore, a positive ELISA test is followed by a further test known as the Western Blot test.

Western Blot test

The Western Blot test involves taking a small blood sample. The proteins in the blood are separated using a process called gel electrophoresis and are then placed on a membrane (a thin sheet of permeable material). The proteins can then be studied for antibodies (used by the immune system) that are used to fight the bacteria Borrelia burgdorferi which causes Lyme disease.

If both the results of the ELISA test and the Western Blot test are positive, a confident diagnosis of Lyme disease can usually be made.

Last reviewed: 15/08/2011

Next review due: 15/08/2013

Comments

23 Comments

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Probitas said on 23 May 2012

More on the unreliability of current testing methods for diagnosing babesia and lyme disease here, from the American Red Cross and Clongen labs.

The bottom line is that there is no 100 % effective test for tick borne diseases,it has to be a clinical diagnosis.

The information on testing starts at 46:30 <http://www.livestream.com/skidmorevideo/video?clipId=pla_af9927af-d302-45e8-8e7f-eb93cf2f5a01&utm_source=lslibrary&utm_medium=ui-thumb>

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crowcity said on 03 November 2011

The manufacturers of both the ELISA and Western Blot tests state that a negative result should NOT be taken as meaning you don't have Lyme.

So how does the NHS get away with blatantly ignoring this and denying people further tests and treatment?

I hope that someone sues the NHS, or individual GPs or consultants, and maybe then they will take notice.

The HPA "expert" should be educating GPs and consultants, but does nothing.

We should push for a full enquiry into this.

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cazzh said on 19 September 2011

Six months prior to being diagnosed with Chronic Fatigue Syndrome, I had the typical bullseye rash (have photos to prove!) and my symptoms all kicked in starting with a stiff neck, unexplained fatigue and muscle & joint aches as well as occasional blurring vision etc. I did not realise what the rash had been (I got it after walking in deer inhabited woodlands locally) and so accepted the 'dustbin diagnosis' of CFS. When I did realise, I had to change GP to find one who would listen and who then referred me to an Infectious Diseases Consultant after being tested for Lyme Disease. (which of course came back negative!) He then tried to tell me that I had not got it despite the fact that I had had the rash with all the symptoms starting after it, because the test was negative! He also tried to tell me that Nottinghamshire is not known to have Lyme Disease! Err excuse me? I had to laugh!
So here I am, still with NO treatment and possibly harbouring an infection which could get worse, which could cause me to have all sorts of problems in the future! I cannot work, I cannot socialise like I used to and as for exercise, that is VERY limited! Thanks very much - not! It is time that a better test was used and it is also time that NHS staff were educated much more thoroughly in this dreadful disease as at the moment, many more like me are being left untreated and uncared for where possibly Lyme Disease is concerned!

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cazzh said on 18 September 2011

I had the rash though I did not know what it was at the time. (I do have photos of it to prove it though) My symptoms started with a stiff neck and fatigue then the muscle and joint stiffness kicked in too! I also had blurring vision from time to time. My short term memory went to pot and my concentration became poor. I was diagnosed after six months with Chronic Fatigue Syndrome! (of course!) I managed to get a referral to an Infectious Disease Consultant even after the negative (as usual?) tests. He told me I had not got it despite all the evidence! He even told me that Nottinghamshire is not an area known for Lyme Disease!!! He also trotted out the usual mantras about not believing what you read on the internet and that private tests are unreliable blah blah blah.
So here I am, just hoping that I will not get worse one day. No treatment. Nothing. Unable to work, unable to go out having fun like normal people. Unable to do the activities I used to love. Exercise? Very very limited. Thanks for nothing nhs

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User551378 said on 04 September 2011

Sometimes Lyme can be missed as too much reliance is placed on the appearance of a 'bull's eye rash'. This can be a problem in many ways, firstly not all patients experience a rash & those that do may not experience the typical bull's-eye pattern. Secondly, as the tick bite is painless the area of the bite may not be seen or the rash noticed (for instance back of the knee, in the scalp etc.), thirdly the rash may not be obvious on dark skin. Also the patient may get a uniform rash rather than the circular ring type rash associated with the typical bull's eye.

In a study by the University College Hospital of Galway 'Clinical Spectrum of Lyme Neuroborreliosis' they state that:

"The majority of patients (25/27, 93 %) presented between the months of May and October. While twenty-two patients (71%) had a rash at presentation, only 43% of patients presented with EM rash.

http://www.imj.ie/ViewArticleDetails.aspx?ArticleID=4785

This is hugely different to the 90% being expected among Lyme patients.

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Joanne Drayson said on 03 September 2011

Where do you get 90% of people get a Bulls Eye rash when there is research showing about 40% of people do not see an EM rash and as they are not always Bulls eye in shape doctors and patients often overlook them.
Testing- see this recent research from Netherlands
Large differences between test strategies for the detection of anti-Borrelia antibodies are revealed by comparing eight ELISAs and five immunoblots.
We investigated the influence of assay choice on the results in a two-tier testing algorithm for the detection of anti-Borrelia antibodies. Eighty-nine serum samples from clinically well-defined patients were tested in eight different enzyme-linked immunosorbent assay (ELISA) systems based on whole-cell antigens, whole-cell antigens supplemented with VlsE and assays using exclusively recombinant proteins. A subset of samples was tested in five immunoblots: one whole-cell blot, one whole-cell blot supplemented with VlsE and three recombinant blots. The number of IgM- and/or IgG-positive ELISA results in the group of patients suspected of Borrelia infection ranged from 34 to 59%. The percentage of positives in cross-reactivity controls ranged from 0 to 38%. Comparison of immunoblots yielded large differences in inter-test agreement and showed, at best, a moderate agreement between tests. Remarkably, some immunoblots gave positive results in samples that had been tested negative by all eight ELISAs. The percentage of positive blots following a positive ELISA result depended heavily on the choice of ELISA-immunoblot combination. We conclude that the assays used to detect anti-Borrelia antibodies have widely divergent sensitivity and specificity. The choice of ELISA-immunoblot combination severely influences the number of positive results, making the exchange of test results between laboratories with different methodologies hazardous.
http://www.ncbi.nlm.nih.gov/pubmed/21271270?dopt=Abstract

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Joanne Drayson said on 25 August 2011

I see we are past the date that these guides are due to be reviewed.
Perhaps it is too much to hope that in reviewing them attention is directed to the German Guidelines
far more relevant to the situation here in the UK.
So far most of the literature has been based on the IDSA guidelines but their view panel directed that European studies were not relevant to US because the different species found in Europe which differed in disease presentation and disease course consequently the IDSA Guidelines are just not appropriate for us to be following here in the UK.

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User551378 said on 28 April 2011

Lyme disease is often misrecognised as ME/CFS which means that the patient may not be tested for Lyme disease (especially where the doctor feels that Lyme is not a problem in his or her area). In a study in the States posted at the site for International Association of CFS/ME it was identified that many patients with CFS did improve with antimicrobials despite negative Elisa. Although seronegative in the Elisa test, many patients were positive in the Western Blot test &/or had existing tick-borne co-infections. http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx

A new test is being developed in Europe called Hilysen. They say : Lyme Disease is the most common tick-borne infection in Europe with around 85,000 new cases per year and its incidence is increasing due to climate change. Current laboratory diagnostic methods lack sensitivity and specificity to detect early cases as well as late manifestations of the disease such as chronic or autoimmune-related infections. For this reasons, disease incidence is underestimated as many cases go mis- or undiagnosed. Late, delayed, or inadequate treatment can lead to serious symptoms such as neuroborreliosis or arthritis, which can be disabling and difficult to treat. This is being funded by the 7th Framework Programme for research & technological development of the European Union.

"Due to the evident pitfalls of current laboratory methods, diagnosis has to be based on the clinical findings but since they are very diverse and may mimic those of many common diseases (arthritis, fibromyalgia, multiple sclerosis) patients suffering from symptoms of the chronic disease go through several months or years of repeated misdiagnosis and inadequate treatment. Besides, this represents a big economic burden for European Health Systems: Lyme Disease costs to society were estimated at €660 million with a cost per patient of €40,750 in 1993" http://www.hilysens.eu/index

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Shirley Fawcett said on 28 April 2011

Utterly disgraceful is far too mild a description for the NHS's attitude towards this disease - and towards the completely devastating impact that it has on people's lives.
Utterly disgraceful, too, is the figure of a 6% Lyme detection rate that the Southampton reference lab finally - with immense reluctance - has admitted to for the samples that it received last year from GPs who presumably had good reason to suspect Lyme as a possible cause of their patients' symptoms.
That is why - as the test manufacturers themselves admit - no diagnosis of Lyme should be based purely or even primarily on the serological results. The diagnosis should be a clinical one, based primarily on the cluster of symptoms.
After all, this is an extremely complex and very slow-reproducing spirochete which is seldom present in either blood or spinal fluid, but which instead burrows deeply into tissues of all kinds, causing endless pain and misery and sometimes indeed fatal injury to the patient.

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jaydee_97 said on 23 March 2011

The article says 'If you do not develop the rash, you will need to have some tests so that your GP can confirm, or rule out, a diagnosis.'

This is extremely disappointing. It is fairly well-known (and much research backs up) that confirming or ruling out a Lyme diagnosis cannot reliably be done via tests. The manufacturers of the tests themselves say they can be used to assist but the diagnosis has to be on a clinical basis, not the tests results alone.

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Self Treating said on 23 March 2011

I will never undertand how a test that is known to produce false negatives AND false positives can ever be regarded as even mildly reliable.

The new regime of Lyme being reportable is nonsense as long as the majority of cases are misdiagnosed as CFS, MS, Parkinsons etc. and the diagnostic test is so unreliable.

NHS, WAKE UP - Lyme is endemic in the UK and it's about time some positive action was taken to help sufferers.

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Darren Smith said on 14 March 2011

In the words of one of the strongest supporters in the UK of the useless ELISA test ,Dr Susan O'Connell there needs to be more" Education, Education, Education" for our GP's and Consultant's alike in the Regard of Lyme and Co-infections.

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suemary said on 23 February 2011

If there was a rating lower than "poor" I would give it to the NHS.Like many others I had a negative NHS ELISA,and was denied treatment,despite having a EM rash and severe symptoms.

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jacqui39 said on 16 February 2011

An American MD (Alan MacDonald) has discovered a link between Lyme disease and various neurological conditions including MS, Parkinsons and Dementia.

He noted that Syphillis (known at one time as the "great pretender" because it mimicked many diseases) could produce symptoms similar to MS, Dementia and Parkinsons. As Syphillis was caused by a spirochete bacterium he investigated whether MS, Parkinsons and Dementia could also be caused by a spirochete. Using DNA techniques he found the Lyme disease spirochete was present in most of the cases he examined!

This is an area that needs more research and perhaps blood samples of individuals with MS, Parkinsons and Dementia should be routinely screened using Stevenel Blue for microscopial contrast ( instead of DNA )

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jacqui39 said on 16 February 2011

Forgot to add. I suspect that the magority of people that have developed arthritis would test positive for Lyme as there is such a thing as Lyme arthritis but they dont realise this.

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jacqui39 said on 16 February 2011

Testing for Lyme and co-infections in UK is abysmal. 250,000 people have been diagnosed as having ME/CFS but many later diagnosed privately as having Lyme disease but this is denide by NHS doctors and government refuses to fund research, we are left to doctor ourselves. Patients are left housebound/bedbound some even unable to feed themselves, some commit suicide because of the disbelief that they are just imagining the pain, fevers etc.
Why the denial? Could it be that contaminated vaccinations and GERM warfare could be involved?

US have addmitted that Lyme is a manmade illness-a germ warefare agent, that is why there is no research into what is making us ill. UK government has secret papers that cannot be read for 70yrs, just like David Kelly's, a GERM warfare expert.

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sicktick said on 16 February 2011

The tests used are abysmal! I had 3 negative results before getting a positive once my tests were sent to america. How much longer is this going to go on for, the NHS are ruining lives because of this. I am so disgusted and angry that my life has been totally destroyed by these idiots and their stupid tests and appalling attitude.

How many more peoples lives are you going to destroy before something is done.

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LymieShirl said on 15 February 2011

When I first became unwell 3 years ago, the NHS endocrinologist refused to consider Lyme Disease as the cause.My suspicion that I was suffering from Lyme was totally dismissed as the NHS ELISA test was negative. I was diagnosed as suffering from CFS and told that no treatment was available. After 3 years of misery and poor quality of life I eventually approached the Breakspear Clinic who performed a Western Blot and confirmed Lyme.
In view of these findings, the NHS have today looked again at my case and prescribed a 3 month course of Cefuroxime ABX. I am optimistic that my health will imrove.
It has been a unecessarily long painful struggle to get recognition for my disease, I feel very sorry for the many sufferers who are fighting the same battle with the NHS.

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sjymusic said on 11 February 2011

It says here that, if the elisa is false-positive then they do a western blot but there is no mention of what happens when the elisa is false-negative. If it can be false-positive why cannot it be false-negative too?
I had a false-negative elisa test but my western blot (which I had to have done privately) was positive.
After several months of illness and constant badgering of my GP he reluctantly referred me to a hospital doctor who told me after a few minutes of checking that I wouldnt be able to come again. I was dismissed - presumably as a fraud. Following that my GP did nothing and I was forced to go private in search of help. It was either that or stay ill.
The NHS completely failed to help when I most needed it.

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jaydee_97 said on 11 February 2011

The biggest problem here, that I can see, is that a high proportion of GPs in this country seem to think that Lyme is something we get from abroad. I have known peole be refused tests because they hadn't travelled. Until this nonsense is stopped then no amount of guidance on this website will help, because they won't know to look for it.

I know from experience, after suffering for 3 years with symptoms that no GP or specialist could find a cause for. The patients are better educated in this subject that the medical fraternity - this HAS to change.

It could be helped by the UK representative (Sue O'Connell) who attended an important conference in the US last year and when she took her turn to speak, said we must educate our practitioners in the UK, but nothing seems to have happened.

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E Cowton said on 11 February 2011

Agree with previous comments. Anecdotal evidence from other countries suggests that best practice ought to be Clinical Diagnosis - start treatment - then test using established tests once the Lyme spirochetes have started dying off.

The theory is this: if you are take a blood test what you see is what is active in the blood at the time it is drawn; there is research evidence available that suggests once infection occurs the spirochetes leave the blood and head into other tissue - where a blood test won't detect them. Once you start to kill them off their debris eventually gets back into the blood where it once again can be detected.

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Probitas said on 02 December 2010

Lyme disease testing is unreliable. More evidence is emerging of just how unreliable the current testing can be.
Recently at The Institute of Medicine meeting on the gaps in understanding for Lyme disease, Benjamin Luft (Professor of Infectious Disease , Stony Brook, New York) presented some data on the inadequacies of the Two tier testing system for Lyme disease. According to his study, many positive cases (46%) of Lyme disease were missed by the Two tier testing system .
Hear his presentation here at 84 minutes in, the detail about testing is at 111mins :
http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12856&type=flv&test=0&live=0

What this means for patients is devastating. You may have a negative ELISA and Western Blot and told you do not have Lyme disease. This is not accurate for all patients.Until testing is improved, the diagnosis of Lyme disease needs to be a clinical decision.
I hope that the HPA will include this evidence from Luft when producing guidelines on diagnosis of Lyme disease. They haven't done so far.

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Joanne Drayson said on 23 September 2009

If you suspect you have been bitten by a tick baring in mind we are not always aware of a tick bite as the smallest is the size of a poppy seed and we cannot feel it bite because it injects an anaesthetic. Then read ILADS or Burrascano Guidelines and then discuss with your doctor. Only about 50% of people get a typical bulls eye rash. The rash is the hall mark of lyme and so it is not necessary or advisable to wait for a positive blood test, by then the organism has had chance to disseminate throughout your system.
Further details on charity website www.lymediseaseaction.org.uk

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