Are doctors reluctant to diagnose Lyme disease?

doctor reluctant to diagnose lyme disease

A study by Tulloch and colleagues, published in the journal BJGP Open, examined the decision-making behavior of general practitioners (GPs) when applying Read codes to non-specific clinical presentations. The authors used Lyme disease as a case example and recruited GPs in the North West of England. [1]


Investigators asked clinicians to review 11 cases of Lyme disease to determine if doctors are reluctant to diagnose Lyme disease. They found that only 5 cases contained Lyme disease on their differential diagnosis list, and only 2 cases were coded as Lyme disease, writes Tulloch.

The Lyme disease case presentations varied:

  1. Classic erythema migrans (EM) rash
  2. Borrelial lymphocytoma of the ear lobe
  3. Acrodermatitis chronica atrophicans (ACA) with peripheral neuropathy
  4. Bell’s palsy following an “insect bite”
  5. Recurrent synovitis of the knees
  6. Multiple EM rashes after walking in Dartmoor
  7. Heart rhythm abnormalities
  8. Fatigue, post-exertional malaise, anxiety, headaches, and memory issues with a positive Lyme disease test from an international lab
  9. Fatigue, arthralgia, poor ability to concentrate, myalgia, mood swings
  10. Non-engorged tick attached to scalp
  11. Poor fine motor movements and a rash occurring 2 months previously at scout camp. (This patient had not been treated with erythromycin.)

The physicians cite several reasons for their reluctance in considering Lyme disease as a diagnosis.

  • “If I can’t diagnose, I will pick the main symptom to code. I will always do this unless I’m almost [100%] positive of the diagnosis. Sometimes, if I’m really not sure, I will write everything in free text and not code anything.”
  • “Lyme disease is a possibility here. But I wouldn’t leap to it without a history of a tick bite.”
  • “I would never write Lyme disease on a patient’s record until I had a positive lab diagnosis. I’m wary because of potential litigation, and I don’t want to cause problems for future doctors treating that patient.”
  • “I won’t code Lyme disease until they’d seen an NHS specialist. I’d be very suspicious if it [laboratory results] was a “high street” or “internet” lab, so I would arrange serology to be sent to a local lab.”
Doctors in England may be reluctant to diagnose Lyme disease for various reasons, including the lack of a positive blood test, investigators report. Click To Tweet

Some doctors were more familiar with Lyme disease through their own experiences.

  • “This is a tick; I’ve been bitten many times before.”
  • “I had a patient diagnosed in the last couple of months; a child with non-specific knee pain. We initially suspected an infected knee joint. He’s now been successfully treated and has been fine since.”
  • “There are so few [Lyme disease] specialists across the country. A friend of mine has Lyme, so I know the difficulties.”

The study, which enrolled only 8 general practitioners, involved case reviews rather than actual cases. Some of the doctors were unable to complete their case evaluation due to time constraints.

Editor’s note: Their results should encourage future researchers to look for any reluctance to diagnose Lyme disease in actual practice.

  1. Tulloch JS, Beadsworth MB, Vivancos R, Radford AD, Warner JC, Christley RM. GP coding behaviour for non-specific clinical presentations: a pilot study. BJGP Open. 2020.

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Susan Kayser
1 year ago

I reported various Lyme symptoms to 7 doctors spanning 5 years. Two used inferior (unethical tests, I believe) to rule out Lyme. I finally paid, out of pocket, $600 to Vibrant Labs (my blood was drawn by my local doctor and sent to their lab) and $400 doctor fee for interpretation (a total of $1000)! The results showed high zonulin, markers for a chronic inflammatory condition which I was diagnosed with, the crossing of the blood brain barrier and many additional problems. The test showed 14 tick borne pathogens identified as severe or moderate and 42 tickbourne pathogens rated as under control. Interestingly, many of the 42 “controlled” pathogens were in the 8 or 9 range where 10 indicates as problematic and indicative of Lyme disease. I also have a raging E Barr infection, numerous mycotoxins and various resistant pneumonias. After taking antibiotics for 5 months, I now have leaky gut, also proven by the test. All this and I do not meet the CDC criteria for Lyme which is SHAMEFUL! I do meet the alternative Lyme criteria. I have been housebound since July 2021 with excruciating bodily pain and severe fatigue. I have 0 quality of life. I contacted every Communicable Disease Doctor I could find in St. Petersburg, FL and I was REFUSED TREATMENT even when I asked to be seen for the pneumonias and mycotoxins. I do not know how these doctors can legally refuse me treatment. Lyme patients are scorned, told they are liars through action by some doctors, ignored, and DENIED TREATMENT by mainstream medical establishment. I now have an invoice for $17,563 + for upcoming Lyme treatment that mainstream medical refuses to assist with. Naturally, I have had to refuse much of the medical treatment that my Lyme specialist has recommended for me. I will attempt to limit my bill to $10,000 which I still cannot afford! This is a horrific injustice to all Lyme patients.

2 years ago

I have had the medicine for Lyme disease three times. Each time it made a tick bite that was getting progressively ugly vanish.
I have had to stop going into the woods in back of my house.
The third time it was not my doctor but some clinic and I had to talk the doc into prescribing, then he wanted to prescribe one pill instead of the standard regimen, I had to explain how the disease hides by partly going dormant.
I am lucky I heard and read a lot about this disease before I had my problems, my sister has it, in later stages you can’t get rid of it.