Why Doctors Miss Lyme Disease: Evidence From Clinical Cases
It’s often about hesitation to make the diagnosis.
And the need for certainty when certainty isn’t always possible.
Why doctors miss Lyme disease becomes clearer when clinicians are asked to evaluate real-world cases.
In a study by Tulloch and colleagues, physicians reviewed 11 cases consistent with Lyme disease. Lyme disease appeared on the differential diagnosis list in only 5 of the 11 cases. And just 2 cases were ultimately coded as Lyme disease.
Key insight: Even when Lyme disease fits the clinical picture, it may not be formally diagnosed.
Lyme Disease Symptoms Do Not Follow One Pattern
The cases highlight why Lyme disease can be difficult to recognize:
- Classic erythema migrans (EM) rash
- Borrelial lymphocytoma of the earlobe
- Acrodermatitis chronica atrophicans (ACA) with neuropathy
- Bell’s palsy after an “insect bite”
- Recurrent knee swelling
- Multiple EM rashes after outdoor exposure
- Heart rhythm abnormalities
- Fatigue, post-exertional malaise, headaches, memory issues, anxiety
- Fatigue, joint pain, poor concentration, muscle aches, mood changes
- Tick attached to the scalp
- Fine motor changes with a prior rash weeks earlier
Clinical pattern: Lyme disease can involve the skin, joints, heart, and nervous system—and symptoms may appear at different times.
Why Doctors Hesitate to Diagnose Lyme Disease
Physicians in the study described several reasons why doctors miss Lyme disease in practice:
- Diagnosis is often avoided unless there is near certainty
- Absence of a known tick bite lowers suspicion
- Reliance on positive laboratory testing before diagnosing Lyme disease
- Concerns about documentation, labeling, or legal implications
- Skepticism toward non-traditional laboratory testing
Key issue: The threshold to diagnose Lyme disease may be higher than what early or complex cases can meet.
[bctt tweet=”Why doctors miss Lyme disease: symptoms vary, tests may be negative, and diagnosis often requires high certainty.” username=”DrDanielCameron”]
Experience Influences Recognition
Some clinicians were more likely to consider Lyme disease when they had prior experience with it.
- Recognizing tick exposure patterns
- Seeing patients improve with treatment
- Awareness of the limited number of Lyme specialists
This suggests that familiarity increases the likelihood Lyme disease will be included in the differential diagnosis.
Clinical Takeaway
Why doctors miss Lyme disease often comes down to three factors: variable symptoms, imperfect testing, and diagnostic hesitation.
Lyme disease may be overlooked when clinicians rely on a single symptom, a single test, or a need for complete certainty.
Looking at the full clinical picture—including symptom patterns over time—is critical.
Editor’s note: Although this was a small study, it raises an important question about how Lyme disease is recognized in everyday clinical practice.
Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.
Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention
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.
I am sorry you and your sister are having such difficulties.
My sister also has Lyme disease and Dr’s in Nebraska don’t (at least a few years back) treat that here- they don’t believe it exists.
I, after taking immunizations for a gov job and going hiking in the mountains soon after, was then bit by something. A mostly red circular rash around it, white smaller interior. Maybe a 1 1/2 inch diameter.
A couple of months after the bite, that I presume was a tick- the thing was attached to me- I thought it was mud and pulled it off. However, my legs started to feel heavy and I felt as if I was dragging them along. I went to see my internal med Dr, who refused to give my a Lyme test. He said they don’t believe Lyme is in Nebraska. My sister got hers by the stream in her back yard, but I got mine in Colorado. He still wouldn’t listen to me. He refused to take any lab.
Now, my sis heard of it and said she insisted he provide the lab work. He refused, citing “it’s political “. I don’t know what that means, and he wasn’t telling me more.
The symptoms continued, I started having major cramps in my muscles, sometimes for hours (still true today-still no dx) and vomiting spells. That had never happened to me before. My sis had to go to Missouri for a dx and tx for years.
My sis went out and purchased the test kit and told me to take it to the lab, which I did- had the physician give it to them and prescribe it. He said the nurse would call w results when they came in. 3 weeks later, still no call, so I called the office. They said they lost it. No offer to retake or to refund fir the cost of it. It’s political alright- in their office.
I was studying nutrition so did a deep dive in foods that can heal the body. It took about 2.5 years to be able to walk freely, but theweakness and fatigue never went away.
I fell a couple times, torn muscles around my knee, finally agreed to a cortisone injection in my knee a year later, as no Dr would treat (I guess) bc I was uninsured.
I never realized the heart rhythm disturbances could be from Lyme. Mine came a couple years after the bite. Anxiety was out of this workd- I don’t usually suffer from that. Also, I was working and going to school, nearly full time each and driving 2.5 hrs 5 days a week. Crazy busy, trying to get help but nobody would.
Went back to Dr saying I really needed some help. He didn’t even look at me, he was mire interested in clearing pics off my phone so he could install an app and told ne to walk more. He wasn’t lustening- I couldn’t! But I wanted to.
Fast forward a couple years…I was working at my new FT job in Hospital and LTC when covid began. It got crazy fast. Staff left, Mgr left, I, as assist to Mgr, had to work 60-80hrs a week, a lot on my feet.
Progressively, the severe body pains set in, my legs developed such terrible cramps in my legs that I couldn’t get out of bed- terribly painful! I had to call my son to bring me a cane so I could use the bathroom. 2 days later, the next one froze up also.
I had gone to ED for the first, w no resolution except a possible infection in the veins, but while he said he should prescribe something for that, he only prescribed zorelto. I’m glad I questioned the 1,000 dollar med. I had paid for a week’s worth and went back to ask the nurse who was also attending that eve what she thought. She asked if a clot was dx. No, it wasn’t. She said she woukd advise against it.
As I waited the 30 days behind schedule my own dr had, I literally stood up from my sofa, lost my balance, tried to correct on one side and twisted my ankle all the way around- trimalleolar fx .
2.5 years fast forward…I still have significant pain and swelling in the joint. Bone pain (had an x-fix), metal plates which I seemed to be allergic to, so they were removed, some screws removed and the bone shaved down.
The crazy covid days didn’t help, but I believe my legs were still impacted by the stinking bite that nobody woukd treat. Still, I get terrible, terrible leg cramps. Why do they not take it seriously?
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.