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Symptoms Attributed to Chronic Lyme Disease

What is it?

What Are the Symptoms Attributed to Chronic Lyme Disease?

Some patients who have had acute Lyme disease, go on to develop chronic symptoms including fatigue, pain, cognitive symptoms ("brain fog), sleep disturbance, and other unexplained symptoms. Although these symptoms have been attributed to persistent Lyme infection (i.e., chronic Lyme), active infection has yet to be demonstrated. Other patients who have not been exposed to the Lyme bacteria (i.e., antibody test negative by reference labs) pay for private lab testing in the US or Europe. These private labs (i.e., non-reference labs) have false positive rates as high as 50:1 (i.e., only one true positive test for each 50 false positive tests). Yet other patients are diagnosed with chronic Lyme disease based on symptoms alone without any serologic testing.

Although many patients report improvement with antibiotics (anecdotal evidence), high quality research consistently show that antibiotics are not helpful and potentially harmful. Some so called "Lyme literate doctors" subscribe to the persistent infection hypothesis and prescribe antibiotics despite strong evidence to the contrary. These doctors represent a small fraction of the medical community. The CCDP does not prescribe antibiotics unless patients have positive serology and have not had prior adequate treatment. The CCDP is not involved in the care of patients with acute Lyme disease where antibiotic treatment is required.

For more information, go to BC Centre for Disease Control.


Diagnosis/Symptoms

Symptoms Attributed to Chronic Lyme Disease

There is no agreed upon definition or diagnostic criteria for diagnosing chronic Lyme disease (CLD). There is significant overlap between the symptoms attributed to CLD and those of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), FM (Fibromyalgia), and other Central Sensitivity Syndromes (CSS). A study by the Complex Chronic Diseases Study Group could find no difference between patients with symptoms attributed to CLD and those with ME/CFS. ME/CFS is often triggered by an infection. For those with a history of serologically proven (antibody test by a reference lab) Lyme disease, persistent symptoms may be due to the acute Lyme infection triggering the onset of ME/CFS. This population is said to have post-Lyme disease syndrome. Other patients without serologic evidence of prior infection by a reference lab (e.g., BCCDC) have a positive test by private non-reference lab. These patients likely have ME/CFS, FM, or related disorder with a false positive test.

Lyme Disease Testing

Internet search results would have one think that testing for Lyme disease is controversial. There is a lot of misinformation about Lyme testing. False negative tests are common only in early acute Lyme but not in late Lyme disease. Of note, late Lyme disease is not the same as CLD and represents specific syndromes associated with persistent infection. Click here for a Fact Sheet on testing for Lyme disease.

Symptoms attributed to Chronic Lyme Disease

As mentioned, there is no agreed upon definition or diagnostic criteria for diagnosing chronic Lyme disease (CLD). Symptoms attributed to CLD include:

  • Fatigue;
  • Pain;
  • Cognitive symptoms ("brain fog)
  • Sleep disturbance; and
  • Other unexplained symptoms (e.g., gut, brain, or autonomic (adrenaline) system)

Lyme disease itself is described as having 2 different stages. There are the early and late stages of Lyme disease. Of note, late Lyme disease is not the same as CLD and represents specific syndromes associated with persistent infection (see below).

Early Stage Symptoms of Lyme Disease

(occurring 3 to 30 days after the tick bite) include:

  • Flu-like symptoms (often in the summer months) such as:
  • Chills and fever
  • Swollen lymph nodes
  • Stiff neck
  • Headaches
  • Fatigue
  • Muscle and joint pain
  • A large, expanding skin rash (erythema migraines), located around the area of the tick bite (in approximately 40% of affected people). This rash may be circular, triangular, or oval, and may resemble a bull's eye.

Antibiotics are used to cure early Lyme disease and to prevent further complications of the infection when used early.

Late Stage Symptoms of Lyme Disease

(months-to-years post-tick bite)

Approximately 60% of patients who were infected with Borrelia (the agent that causes Lyme Disease), but were not treated with antibiotics, go on to develop arthritis, neurologic symptoms (brain or nerves), and skin manifestations.

Antibiotics are also used for late Lyme disease and are usually curative.

As mentioned, CLD is not the same as late Lyme as evidence of persistent infection is lacking. Although there are many anecdotal reports of symptom improvement with antibiotics, high quality randomized placebo-controlled trials have consistently shown a lack of benefit. In fact, there is strong evidence showing potential harm in the use of antibiotics for symptoms attributed to CLD.

The CCDP does not see patients with acute or late Lyme disease. As mentioned, we will treat patients with symptoms attributed to CLD who have positive serology and have not had prior adequate antibiotic treatment. Otherwise, our policy is not to use antibiotics for patients with symptoms attributed to CDL.

More information reviewing the controversies surrounding CLD is available on our website.

For more information, go to BC Centre for Disease Control.

Patient Resources
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SOURCE: Symptoms Attributed to Chronic Lyme Disease ( )
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