Lyme disease symptoms and diagnosis

All symptoms of Lyme disease are described here. Lyme is a bacterial disease caused by a tick bite. Because Lyme disease can sometimes enter the body unnoticed, many people quickly become anxious about the idea. Yet, immediately after a tick bite, there are often clear symptoms that serve as an indicator of Lyme disease. There are also typical symptoms with chronic Lyme. When diagnosing Lyme, it is important to know what stage the disease is in.

Life cycle tick

Lyme is caused by the Borrelia bacteria, of which there are several types. Although the Borrelia bacterium discovered in the North American town of Lyme only occurs in America as Borrelia burgdorferi sensu stricto, in the Netherlands Borrelia mainly occurs as Borrelia afzelii, Borrelia garinii and to a lesser extent as Borrelia burgdorferi sensu strictu.

Ticks go through different life stages: nymph, larva and adult tick. Although some larvae are already infected when they leave the nest, most ticks only become infected with Borrelia when they feed on the blood of infected animals (often mice). Because a tick needs one blood meal at each stage of life, the risk of Lyme increases when the tick is older. If you can discover what life stage the tick is in, you can get a better idea of the risk of Lyme disease. The life stage can mainly be determined by the difference in size. The number of legs also differs between young and old ticks. A larva has six legs and a nymph and an adult tick have eight legs. The difference in gender can only be observed in an adult tick. The male does not eat blood in his final phase of life.

Lyme infection

When a tick carries the Borrelia bacteria in its stomach, it can be transmitted to humans during feeding. Because the Borrelia bacteria need 24 hours to spread through the body and multiply, the chance of an infection before then is small. Research shows that only 3% of tick bites actually lead to Lyme disease. Lyme disease in the Netherlands is almost always caused by a bite from the sheep tick (Ixodes ricinus). Only ticks can transmit Lyme disease to humans.

Three stages

When you become infected with Borrelia, Lyme disease can develop. Lyme is medically divided into three stages:

  • Early local stage of Lyme (also called acute Lyme). At this stage, only the skin around the tick bite is infected.
  • Disseminated stage of Lyme . At this stage, the disease has spread through the bloodstream.
  • Chronic stage of Lyme . At this stage, the disease has been present for more than a year.

Early local stage of Lyme (three days to thirty days after tick bite)

Acute Lyme occurs between three days and eight weeks after the tick bite (usually after around five days). Acute Lyme is characterized by the red-colored skin inflammation around the tick bite. This inflammation is called erythema migrans (EM). When EM is observed around the tick bite, it is very clear that the Borrelia bacteria have taken up residence in the body and no blood test is required to diagnose Lyme disease. An EM can have a diameter of 5 to 75 centimeters with an average of 15 centimeters. EM does not always consist of a circle, but the bleaching is characteristic. The skin is almost always reddest in the center. It is striking that EM is completely painless and does not itch. This sometimes makes it difficult to discover. Only a small proportion of infected people do not develop EM (11% to 13%). The acute form of Lyme disease also includes a flu-like feeling that occurs immediately with an EM, but this can also sometimes be absent. In the majority of patients, no antibodies are present at this stage, which means that the disease cannot be detected with a blood test.

Borrelia lymphocytoma: nodule / Source: Spectrum11, Wikimedia Commons (CC0)

Borrelia lymphocytoma occurs in 2 to 3% of patients at this stage. This is a purple-red nodule or plaque that mainly occurs on the earlobe. This is also painless. Borrelia lymphocytoma can develop at the site of the bite, but also at a distance.

Symptoms of early local Lyme disease

The following symptoms may develop in the first stage, although it is not certain that they will develop. Also, not all of these symptoms indicate Lyme. All symptoms will disappear after a while (even untreated).

  • erythema migrans (indicates Lyme)
  • flu symptoms: high temperature/fever, chills, muscle pain, fatigue, swollen lymph nodes (does not always indicate Lyme)
  • borrelia lymphocytoma: nodule and/or plaque (indicates Lyme)

Disseminated stage of Lyme (several days to many weeks after tick bite)

If Lyme is not treated in the first stage, the Borrelia bacteria are certain to spread through the body via the bloodstream. In very exceptional cases, the bacteria can enter the bloodstream as early as a day after the tick bite. Borrelia does not remain in the blood for long and can in principle settle in all parts of the body. But surprisingly, only the nerves, joints, skin and heart are affected.

The damage to the nerves at this stage is called early neuroborreliosis. This can manifest itself in the form of inflammation of the meninges and cranial nerves (meningitis) or spinal neuritis. It also happens that both conditions occur at the same time. Less than a quarter of people with Lyme disease experience any of these symptoms in the second stage.

Meningitis is not immediately noticeable because the symptoms are limited to mild headaches and sometimes stiffness in the neck, but when Lyme disease spreads further through the brain and cranial neuritis develops, very typical symptoms occur: a (half-sided ) paralysis of the facial muscles and often double vision. Paralysis is accompanied by pain around the facial muscle nerves.

Spinal neuritis not only causes pain in the back, but also in the arms and legs (sometimes only legs). This causes long-lasting and severe pain. Another symptom of spinal neuritis is numbness in the arms or legs. However, this is not always experienced. Patients who develop joint complaints usually experience them within three months of the bite in the form of Lyme arthritis. Unlike other symptoms, these are clearly noticeable due to the severe pain that accompanies them. The knee joints are especially sensitive to Lyme arthritis. Swelling occurs that can last very briefly (a few days) but also for a very long time (several months). 5 to 8% of patients experience this swelling in this second stage.

Symptoms of disease may also be noticeable on the skin. Multiple EM skin infections may appear in different places on the body, because the Borrelia bacteria have now spread throughout the body. EM occurs at this stage in 5% of patients. Only 1% of patients develop Lyme carditis. If Lyme disease reaches the heart, an AV blockage can occur, causing a cardiac arrhythmia. However, the symptoms of this are not severe. Usually the only symptoms are (mild) fatigue and dizziness.

Symptoms of disseminated Lyme disease

The following symptoms may develop in the second stage, although it is not certain that they will develop. Also, not all of these symptoms indicate Lyme. The majority of these symptoms will disappear after a period of time (even untreated).

  • mild headache and/or stiff neck (does not always indicate Lyme)
  • (half-sided) facial paralysis (indicates Lyme)
  • double vision (indicates Lyme)
  • long-term pain in arms or legs (indicates Lyme)
  • numbness in one or more limbs (indicates Lyme)
  • urine cannot be held (does not always indicate Lyme)
  • Lyme arthritis: severe pain in joints and swelling in joints (signifies Lyme)
  • fatigue and dizziness due to disturbed heart rhythm (does not always indicate Lyme)

Chronic stage of Lyme (one year after tick bite)

If the infection is not treated in the second stage, advanced Lyme disease develops. This is only officially called chronic Lyme if the disease is still present in the body more than a year after the tick bite. All the symptoms of the second stage can also occur in the third stage. Because the Borrelia bacteria become more established in the third stage, the symptoms of Lyme disease are not only present in the peripheral nervous system (surrounding nervous system) as in the second stage, but also the central nervous system (brain and spinal cord).

Brain complaints consist of various symptoms: depression, anxiety disorder or (severe) mood swings. Even dementia and ADHD can develop. Unfortunately, these symptoms do not necessarily indicate Lyme. About 60% of people with Lyme who are untreated in stage two experience arthritis in stage three, which produces the same symptoms as arthritis in stage two.

Acrodermatitis chronica atrophicans (ACA) can also develop in the third stage. This skin complaint does not resemble the skin conditions from earlier stages. The purple-red color that the skin takes on is characteristic. Over a long period of time, the skin can thin severely, giving it a wrinkly appearance. ACA usually occurs on the forearms, lower legs, hands or feet. 1 to 3% of Lyme patients receive ACA.

Symptoms of the chronic stage of Lyme

The following symptoms may develop in the third stage, although it is not always certain that they will occur. Also, not all of these symptoms indicate Lyme. Some of these symptoms will disappear after a while (even untreated). Symptoms can also disappear for a long time and reappear later.

  • depression (does not always indicate Lyme)
  • anxiety disorder (does not always indicate Lyme)
  • mood swings (does not always indicate Lyme)
  • dementia (does not always indicate Lyme)
  • ADHD (does not always indicate Lyme)
  • ACA (denotes Lyme)
  • mild headache and/or stiff neck (does not always indicate Lyme)
  • (half-sided) facial paralysis (indicates Lyme)
  • double vision (indicates Lyme)
  • long-term pain in arms or legs (indicates Lyme)
  • numbness in one or more limbs (indicates Lyme)
  • urine cannot be held (does not always indicate Lyme)
  • Lyme arthritis: severe pain in joints and swelling in joints (signifies Lyme)
  • fatigue and dizziness due to disturbed heart rhythm (does not always indicate Lyme)

Make the correct diagnosis

Because not all patients with Lyme disease experience the same symptoms, and not all symptoms always indicate Lyme, it often happens that a clear diagnosis cannot be made. Sometimes it cannot be said with certainty that someone has Lyme disease or not. In the first and second stages the body does not always produce antibodies. This sometimes does not happen in the third either. As a result, a correct diagnosis cannot always be made with serological testing (blood tests). Antibodies can always be found in a patient with ACA. Even after Lyme disease has been cured, it cannot be diagnosed with certainty whether the disease has been cured, because the body can continue to produce antibodies for years after recovery. To make a correct diagnosis, the symptoms described by the patient must be carefully examined. A single symptom does not always indicate Lyme disease, but when a patient experiences multiple symptoms, a clearer picture can be painted.

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