Diagnosing Lyme Disease

To diagnose Lyme Disease the first indicator used is the bulls eye rash or erythema migrans. However 70-80%  of patients with Lyme disease do not remember being bitten by a tick or having any rash. It is important to know that the bulls eye rash is a classic symptom of Lyme disease and no further testing is needed prior to starting an appropriate course of antibiotic therapy. Non presence of the rash should NOT be considered an indication that a patient does not have Lyme disease.

Official guidelines on diagnosing Lyme disease rely on a two stage testing. First an enzyme-linked immunosorbent assay (ELISA) blood test is done which looks for antibodies to the borrelia bacteria in the body. This blood test can show up negative during the first few weeks of infection until sufficient antibodies are produced. Chronic Lyme sufferers may also have a false negative result, due to the depleted immune system not being able to produce antibodies in sufficient numbers for the test to show positive. This poses a huge problem for patients who are infected by the disease but who get a falsely negative ELISA. If the ELISA shows a positive result then a ‘Western Blot’ blood test is done. This test also looks for antibodies but is much more sensitive than the ELISA test. If this is also positive then treatment will begin.

If you have been bitten by a tick, or if you think you have been bitten it is advisable to speak to your doctor as soon as possible. The key to treating this disease is an early diagnosis. If you are presenting any symptoms at all, seek medical advice!

Symptom List

Here is a list of the currently known symptoms of Lyme disease. Sufferers may have many of these symptoms or they may have only a few which is one of the reasons why diagnosis can be difficult without the presence of a bulls eye rash.

For a detailed guide of symptoms and treatment options for Lyme and other tick borne illnesses see Dr. Burrascano’s guide. Dr. Joseph J. Burrascano Jr. has been treating Lyme patients for 30 years and is regarded as the leading expert on Lyme Disease in the U.S.

  1. Rash at site of bite or on other parts of your body
  2. Unexplained hair loss
  3. Headache, mild or severe, Seizures
  4. Pressure in head, white matter lesions in brain (MRI)
  5. Twitching of facial or other muscles
  6. Facial paralysis(Bell’s Palsy, Horner’s syndrome)
  7. Tingling of nose, (tip of) tongue, cheek or facial flushing
  8. Stiff or painful neck
  9. Jaw pain or stiffness
  10. Dental problems (unexplained)
  11. Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose
  12. Double or blurry vision
  13. Increased floating spots
  14. Pain in eyes, or swelling around eyes
  15. Oversensitivity to light
  16. Flashing lights/Peripheral waves/phantom images in corner of eyes
  17. Decreased hearing in one or both ears, plugged ears
  18. Buzzing in ears
  19. Pain in ears, oversensitivity to sounds
  20. Ringing in one or both ears
  21. Diarrhea
  22. Constipation
  23. Irritable bladder (trouble starting, stopping) or Interstitial cystitis
  24. Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)
  25. Bone pain, joint pain or swelling, carpal tunnel syndrome
  26. Stiffness of joints, back, neck, tennis elbow
  27. Muscle pain or cramps, (Fibromyalgia)
  28. Shortness of breath, can’t get full/satisfying breath, cough
  29. Chest pain or rib soreness
  30. Night sweats or unexplained chills
  31. Heart palpitations or extra beats
  32. Endocarditis, Heart blockage
  33. Tremors or unexplained shaking
  34. Burning or stabbing sensations in the body
  35. Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis
  36. Pressure in the head
  37. Numbness in body, tingling, pinpricks
  38. Poor balance, dizziness, difficulty walking
  39. Increased motion sickness
  40. Lightheadedness, wooziness
  41. Mood swings, irritability, bi-polar disorder
  42. Unusual depression
  43. Disorientation (getting or feeling lost)
  44. Feeling as if you are losing your mind
  45. Over-emotional reactions, crying easily
  46. Too much sleep, or insomnia
  47. Difficulty falling or staying asleep
  48. Narcolepsy, sleep apnea
  49. Panic attacks, anxiety
  50. Memory loss (short or long term)
  51. Confusion, difficulty in thinking
  52. Difficulty with concentration or reading
  53. Going to the wrong place
  54. Speech difficulty (slurred or slow)
  55. Stammering speech
  56. Forgetting how to perform simple tasks
  57. Loss of sex drive
  58. Sexual dysfunction
  59. Unexplained menstral pain, irregularity
  60. Unexplained breast pain, discharge
  61. Testicular or pelvic pain
  62. Phantom smells
  63. Unexplained weight gain, loss
  64. Extreme fatigue
  65. Swollen glands/lymph nodes
  66. Unexplained fevers (high or low grade)
  67. Continual infections (sinus, kidney, eye, etc.)
  68. Symptoms seem to change, come and go
  69. Pain migrates (moves) to different body parts
  70. Early on, experienced a “flu-like” illness, after which you have not since felt well.
  71. Low body temperature
  72. Allergies/Chemical sensitivities
  73. Increased effect from alcohol and possible worse hangover

What To Do If You Suspect You Have Lyme Disease

Please note that we DO NOT have any medical experience. Any advice given is based on our own experiences with Lyme disease. Please consult your GP before making any decisions about your healthcare.

We have listed some options that are available to you in Ireland or the U.K. if you suspect that you have Lyme disease.

Contact your G.P.

If you suspect that you may have Lyme disease there are two options for blood tests available through your G.P. The results of these tests can take from 7 working days to 4 weeks to come back.

Blood Test Results

Please note that a negative blood test result should not be used to rule out a possible Lyme infection as the tests for Lyme can often be inaccurate for a number of reasons including recent antibiotic treatment, depleted immune system (your immune system can’t produce the antibodies that are searched for when performing the test for Lyme disease) and length of time since infection. Diagnosis MUST be made based on clinical findings, including symptoms. A full list of symptoms that have been associated with Lyme can be found here.

Testing and Treatment Guidelines written by an expert Lyme doctor from the U.S.

Please see Dr. Burrascanos Guidelines for treatment of Lyme disease and Co-Infections. This is a very useful guide to treatment that was written by a doctor in the US who has spent over 20 years treating patients with Lyme. I would highly recommend you have a read through this. On page 19 he speaks about treatment after being bitten by a tick. It may be helpful to show this to your doctor.

Further testing options

Another option for blood tests is to organise private testing. There are some labs that we know of both in Europe and America who carry out Lyme testing. Please note that your consultant may not accept overseas test results.

  • Armin Labs, a internationally accredited laboratory in Germany, specialised in diagnosing chronic Lyme and coinfections, viruses, parasites and the immune system. Special test kit for most sensitive EliSpot (reflects current activities of Lyme and coinfections) needed, results finish within very few days after arrival. Please visit their website.
  • RED labs-a lab in Belgium, focused on developing and performing specialty research and diagnostic tests for chronic immune disorders. Please visit their website.
  • IGENEX – This lab is based in California, US. They specialize in Lyme borreliosis testing amongst other things. More details can be found here. The Western Blot testing offered by Igenex helps to identify more Lyme specific antibody bands than those normally offered by other labs. They will post you out a kit and you can get the blood taken by a nurse at your local surgery (if your doctor agrees). You then send the blood by courier to the lab. It does take six weeks for the results to come back by post.
  • Melisa Labs – this test is for antigens not antibodies and considered far more accurate, particularly with regards to an active ongoing infection. More information can be found here.

Some doctors may prescribe antibiotic therapy to treat Lyme disease based on the results from any of the tests listed on the testing page on our site.

Further treatment options

NB: Tick Talk Ireland has no ties with or recommend any Clinic – we have listed for information only, all these are Private Clinics and may will not be covered with your Health Insurance, As always it is best to work with your own GP with any health concerns you may have. (It is up to each person to investigate each clinic personally).

Bull’s Eye Rash/Erythema Migrans
Less than 50% of people who are bitten by a Lyme infected tick will present with a bulls eye rash. This can be a useful diagnostic tool. Images of a bulls eye rash can be found here.

Record your symptoms

If you suspect you have Lyme then it would be useful for you to record your symptoms on a daily basis, this can then be used when you are meeting with doctors or specialists. It can be helpful to them when making a diagnosis. It can be helpful to you if you are finding it difficult to get adequate care for your condition. We have a symptom chart available on our website you can print it off and fill it in or save it to your desktop and fill it in using your PC. The symptom chart can be found here.

Follow us on Facebook

Tick Talk Ireland have a group and a Facebook page where Jenny, a Tick Talk officer, often posts updates and new information about Lyme disease and other diseases such as CFS, M.E. etc. View or join our group here.

Other Support groups in local areas 

Additional Information

If you have any further questions please see our FAQ’s where you’ll find an abundance of information on lots of subjects such as:

  • Testing and prevalence of Lyme in Ireland
  • How to tell the difference between a tick bite and a mosquito bite
  • Who is at risk
  • How to keep ticks from your garden

Links to use as guidelines after Seek Medical Advice

Further Questions?

If you have any questions, suggestions or comments you can contact us here.

Testing For Lyme

There are many types of tests for Lyme. Here we look at a couple of alternatives for you to consider.

NB: Tick Talk Ireland has no ties with or recommend any particular option – we have listed alternative labs for information only. As always it is best to work with your own GP with any health concerns you may have.

  1. Elisa Testing
  2. Melisa Testing
  3. Igenex Labs Testing
  4. Elisa vs. Western Blot Explained

Lyme Literate Doctors

Some people opt to use Lyme literate doctors for their testing in the UK. You would have someone check you over, ask questions about your history and then suggest further testing for you.

One place to try is the Breakspear Hospital Another ‘maybe’ is to see if you react to antibiotics. If your doctor is willing to try you on high dose doxycycline per Joseph Burrascano (recommended dose is 400mg – Click here for more details) and you worsen this may be a sign of bacterial die off, which could show that your health problems are indicative of bacterial rather than the post viral problems often associated with ME.

Elisa Blood Test

“The C6 Lyme ELISA blood test is intended for use in the presumptive detection of IgG and IgM antibodies to B. burgdorferi. In many regions, positive or equivocal results should be supplemented by testing with a standardised western blot method. The diagnosis of Lyme disease must be made based on history, signs, symptoms, and other laboratory data. C6 Lyme ELISA test can detect all of the major infectious European Borrelia species: B. afzelii, B. garinii, and B. burgdorferi. Negative test results should not be used to exclude Lyme disease”. Learn more here.

Please note that antibody response may not be seen in all patients, some antibodies may take time to develop or the patient may be experiencing symptoms from a different borrelia strain (or other tick-borne infection) not picked up in the testing. Please also note that anti microbials may sometimes affect test results. Learn more here.. It has been known for patients to receive a positive western blot even with a negative Elisa. Therefore, as mentioned in the test kit manufacturers notes above, the patient’s symptoms, history & clinical picture should all be considered & a negative should not be used to rule out infection.

For more information, check out our article looking at variances in test results here
or our newcomers guide here.

NB: There are some private labs who specialise in Lyme disease using T cell testing which may produce a different result to antibody assays, however not all doctors will accept the results for test done overseas. For information we have listed these separately to help you make an informed choice.

Elisa Vs. Western Blot Explained

If your first tier (Elisa) test is positive or borderline, a secondary test called an Immunoblot or Western Blot will usually be offered. This allows for specific protein bands to be seperated in an attempt to make the testing more specific to Lyme disease.

“The Borrelia ViraStripe IgG, IgM is an immunoassay with native antigens extracted from Borrelia strains B. burgdorferi sensu stricto and B. afzelii (Pko), supplemented with VlsE”. Learn more here

The test is normally sent to Porton Down in the UK for analysis. Please note that test strips were manually interpreted in the past, however these new assays are machine automated hopefully improving on accuracy.

As mentioned in the Elisa section above, antibodies may not be picked up in all patients & a negative should never be used to rule out infection.

With thanks to Peter Sotory for the following image:

Western Blot Test Process:

Check out our ‘western blot comparison‘ spreadsheet for a look at various bands tested across different labs.