Lyme disease is caused by bacteria called Borrelia burgdorferi that are transmitted through the bite of infected blacklegged ticks, also known as deer ticks. Lyme disease can be difficult to diagnose and treat for several reasons:
- Many people with Lyme disease don’t remember being bitten by a tick because the ticks are very small and their bites are relatively painless.
- The characteristic Lyme disease rash, called erythema migrans, doesn’t appear in everyone who gets infected.
- Lyme disease symptoms are often non-specific and flu-like, including fever, chills, headache, fatigue, joint and muscle aches.
- If left untreated, Lyme disease can progress and cause more serious symptoms months or years after infection.
So in summary – yes, it’s entirely possible to have Lyme disease for years without knowing it, especially if the early Lyme rash wasn’t noticed or there were only mild, non-specific symptoms initially. Let’s look into this topic in more detail:
Delayed Diagnosis of Lyme is Common
Studies show that it takes an average of nearly 2 years after symptom onset for people with Lyme disease to get properly diagnosed and treated. Here are some statistics:
- In one study of patients with late Lyme arthritis, the median time from symptom onset to diagnosis was 1.8 years.
- In a study of patients with Lyme neuroborreliosis affecting the nervous system, it took a median of 2 years from the start of symptoms to diagnosis.
- The average delay in diagnosis for people with Lyme carditis, where Lyme bacteria infect the heart, was over 3 years.
Why does it take so long? The vagueness of early symptoms is a big factor. Many people with Lyme are simply unaware they were bitten by a tick, or they don’t develop the tell-tale bull’s eye rash. They may feel unwell and have headaches, joint pain or fatigue, but don’t suspect Lyme because symptoms are so non-specific.
Doctors may also mistake early Lyme symptoms for other conditions like fibromyalgia, chronic fatigue syndrome, arthritis, multiple sclerosis or early ALS. Unless Lyme is specifically suspected and tested for, the diagnosis can be entirely missed.
Lyme Disease Can Be Misdiagnosed
In some cases when people have longstanding symptoms and they do get tested for Lyme, the results may come back negative. This is because standard Lyme tests like the ELISA and Western Blot antibody tests are far from perfect.
Reasons people may test negative for Lyme include:
- Testing was done too early before detectable antibodies developed.
- They received antibiotics right after a tick bite, preventing antibodies from forming.
- The Lyme bacteria have mutated in a way that avoids detection.
- Their immune response against the infection is weak.
In one study of patients with Lyme arthritis who tested negative, B. burgdorferi bacterial DNA could be found in the joint fluid of about 60% of them, proving they had Lyme disease despite negative blood tests.
False negatives on Lyme tests are unfortunately common, contributing to underdiagnosis. Doctors need to make clinical diagnoses based on symptoms and exposure history, not just rely on unreliable lab tests.
Lyme Disease Can Cause a Broad Range of Symptoms
Lyme causes different symptoms as it disseminates through the body and affects various tissues and organs:
Early Localized Lyme
This is the first stage of Lyme infection, occurring 3 to 30 days after a tick bite. Symptoms include:
- The erythema migrans rash (occurs in 70-80% of cases).
- Flu-like symptoms like fever, chills, headache, muscle and joint aches, fatigue and neck stiffness..
Without treatment, the infection can spread from the initial bite site.
Early Disseminated Lyme
Weeks to months after infection, the bacteria spread through the bloodstream to other parts of the body and begin affecting other tissues. Symptoms include:
- Additional EM rashes on other areas of the body.
- Facial palsy (Bell’s palsy) and other cranial neuropathies.
- Severe headaches and stiff neck.
- Meningitis and encephalitis.
- Irregular heart rhythms like atrioventricular node block.
- Pancreatitis.
- Hepatitis.
- Joint swelling.
Late Disseminated Lyme
Months to years after infection, Lyme can cause ongoing inflammation and damage. Symptoms include:
- Arthritis, especially in the knees.
- Cognitive impairment (“brain fog”).
- Sleep disorders.
- Peripheral neuropathy, tingling/numbness.
- Persistent fatigue.
As you can see, Lyme disease can mimic an enormous range of illnesses. With vague symptoms and limited testing accuracy, it’s no wonder diagnosis is commonly delayed by years.
Missed Cases of Lyme Disease are Common
In areas of the United States where Lyme disease is highly endemic, many infections go undiagnosed and unreported.
Researchers have used disease modeling techniques to estimate the true number of Lyme infections per year compared to reported cases. Their findings show that only around 10% of Lyme disease cases are actually reported to CDC surveillance systems each year.
| Study | Estimated infections per year | Reported cases per year | Detection percentage |
|---|---|---|---|
| Kuehn 2013 | 440,000 | 30,000 | 6.8% |
| Schwartz 2015 | 300,000 | 30,000 | 10% |
| Nelson 2016 | 321,000 | 38,000 | 11.8% |
This means the CDC is missing 90% or more of Lyme disease cases. Many people infected each year likely assume they have a common virus or health condition, so Lyme infection remains undiscovered.
Untreated Lyme Can Progress and Cause Chronic Symptoms
When Lyme disease is undetected and untreated in the early stages, the bacterial infection has time to spread throughout the body. The spirochetes can then set up residence in collagen-rich tissues and create ongoing inflammation that is difficult to eradicate.
Here are some examples of what can happen:
- Neuroborreliosis: Untreated Lyme bacteria invade the central nervous system and cause neuroinflammation that may persist even after antibiotic treatment.
- Lyme carditis: B. burgdorferi bacteria infecting the heart can trigger conduction abnormalities and heart block, which may resolve slowly or incompletely if untreated early.
- Lyme arthritis: Joint swelling and pain often become chronic symptoms if antibiotics are delayed by months or longer.
- Post-treatment Lyme Disease Syndrome (PTLDS): A subset of patients have fatigue, pain and cognitive dysfunction that lasts for months or years even after antibiotic therapy.
The takeaway is that earlier detection and treatment of Lyme leads to much better outcomes. The longer the infection festers, the higher the probability it can cause chronic symptoms by triggering autoimmunity or other damaging processes.
How Long Could Lyme Disease Go Unnoticed?
There isn’t a definite answer, because every patient and every infection is different. In general:
- People who don’t develop the erythema migrans rash or never saw a tick bite are at higher risk of having Lyme go undiagnosed.
- Vague initial symptoms like headache, fatigue and myalgias make it likely Lyme will be overlooked at first.
- Immunosuppressed individuals and older adults may have weaker immune responses, allowing the bacteria to spread more quickly.
- Lack of access to healthcare and unreliable diagnostic tests increase the odds of misdiagnosis.
- For patients with late disseminated or chronic Lyme, the duration of undetected infection is typically measured in years but is highly variable.
Case reports have documented Lyme disease going undiagnosed for extremely protracted periods in some patients:
- A man developed Parkinson’s-like symptoms including tremors, muscle rigidity and unstable gait. He was diagnosed with neuroborreliosis following 10 years of worsening symptoms.
- A 26-year old woman had severe fatigue along with dizziness, nausea and flu-like symptoms. After 5 years she was diagnosed with Lyme carditis.
- A woman developed progressively worsening heart block over 16 years before being diagnosed with Lyme carditis.
While decades-long hidden Lyme infections are at the extreme end, it’s clear that Lyme can sometimes be missed for many years before the true cause of symptoms is uncovered.
What To Do If You Suspect Lyme Disease
If you have symptoms consistent with Lyme and have risk factors like living or traveling in endemic areas, request Lyme testing from your doctor. However, keep in mind that tests are not highly sensitive, especially early on, and negative results don’t rule out Lyme.
Ask your doctor to make a clinical diagnosis based on symptoms, exposure history, response to antibiotics and other factors. You may need to see a specialist like an infectious disease doctor or Lyme literate MD.
Insist on a trial of antibiotics like doxycycline for at least 4-6 weeks. Keep a symptom journal to record your response to treatment. Improvement on antibiotics suggests Lyme bacteria were likely involved.
Don’t give up on finding an answer. The average Lyme patient sees 5 doctors before getting properly diagnosed. Be your own advocate and continue seeking care until your health problems are solved.
Conclusion
In summary, it is certainly possible to have a Lyme disease infection for many years without knowing it. Lyme is called the “great imitator” for a reason – it can mimic seemingly unrelated health problems and has an array of vague symptoms that are easily misattributed to other causes. Missed tick bites, lack of rash, insensitive lab tests and unaware doctors contribute to underdiagnosis of Lyme. In highly endemic areas, rates of undiagnosed Lyme may be 10 times higher than reported case counts. Patients often suffer with progressively worsening symptoms before Lyme is detected years down the road. Increased awareness and improved diagnostics are needed to catch Lyme cases earlier and prevent chronic illness. If you suspect you may have been misdiagnosed, find a Lyme literate doctor who can make an appropriate clinical diagnosis and start you on antibiotic therapy. The sooner Lyme is treated, the higher the chances of full recovery.