The term “chronic Lyme disease” (CLD) is controversial and not universally recognized within the medical community. There are two primary contexts in which it’s discussed:

Post-Treatment Lyme Disease Syndrome (PTLDS): Some patients who are treated for Lyme disease continue to experience symptoms long after their treatment has finished. The more accepted term for this condition is Post-Treatment Lyme Disease Syndrome (PTLDS). Symptoms can include fatigue, joint or muscle aches, and cognitive dysfunction. The cause of PTLDS is not entirely understood, but it’s believed that the persistent symptoms are not due to ongoing infection with Borrelia burgdorferi. Instead, it’s theorized that PTLDS might result from an autoimmune response or residual tissue damage. The recommended treatment typically does not involve prolonged antibiotic therapy. In some contexts, people or healthcare providers may use the term ‘chronic Lyme disease’ in this context to refer to a collection of symptoms that remain after infection is eliminated with antibiotics, but does not refer to an ongoing or persistent infection.

“Chronic Lyme Disease” as a Diagnosis: Some practitioners and patients use the term “chronic Lyme disease” more broadly, referring to a variety of chronic symptoms in patients who may or may not have evidence of a prior Lyme disease infection. In many cases, these individuals have not met the clinical or epidemiological criteria for a Lyme disease diagnosis or may not have had documented evidence of a Borrelia burgdorferi infection. Many practitioners who diagnose this use unproven tests that report false positives using non-blood bodily fluids and unreliable testing technologies, leading people to believe they have an infection when they do not.

Some believe that these symptoms are due to a persistent, low-level infection with the bacterium and advocate for extended antibiotic therapy, often for months to years, in addition to other unproven treatments that have no evidence to support their use. However, several comprehensive studies have shown that long-term antibiotic therapy and these other treatments are not beneficial and can be harmful.

Remember, there are a variety of other medical conditions that have similar symptoms to the more generic signs of Lyme disease, and it is important to seek an accurate diagnosis from a credible healthcare provider.

It’s important to note that the symptoms associated with PTLDS or what some refer to as “chronic Lyme disease” are real and can be debilitating. The debate within the medical community is primarily around terminology, etiology (cause), and appropriate treatment.

If someone believes they have persistent symptoms associated with Lyme disease or any other unexplained health concerns, they should consult with a healthcare professional to discuss their symptoms, get a proper diagnosis, and explore treatment options.

Tick testing is generally unnecessary, and should not be a substitute for diagnosis by a physician. Just because a microorganism is found inside a tick does not mean the tick is capable of transmitting it to a human. Remember: tick physiology is vastly different from a human.

Tick testing is not always done in a clinical laboratory. Clinical labs have to adhere to high quality control standards that do not apply to non-clinical labs. As a result, results may not be accurate and should not guide treatment decisions.

Waiting for tick testing results to make treatment decisions can be risky, especially if symptoms develop before results are available.

Just as a positive test cannot tell you if you’ve actually been infected with a microorganism identified in a tick, a negative test can give false security, as it is possible another species of tick bit you and did transmit a pathogen.

You can send a tick in for testing if you want, but not doing so does not increase risk of illness. You should be aware of the limitations to the information gained from doing so.

• Ixodes scapularis (black-legged tick or deer tick) in North America:
  • In the northeastern, north-central, and Pacific coastal regions of the U.S., studies have found that anywhere from 20% to 50% of nymphs (young ticks) carry the bacterium. Adult ticks can have slightly higher infection rates, sometimes exceeding 50% in certain areas.
  • However, in the southeastern United States, the percentage of infected black-legged ticks is generally much lower.
• Ixodes pacificus (Western black-legged tick) in the Pacific Coast:
  • This tick is less efficient than the deer tick at transmitting Lyme disease. In California, studies have generally found that less than 5% of these ticks carry Borrelia burgdorferi.
• Ticks in Europe:
  • In Europe, the primary vector is Ixodes ricinus. The prevalence of Borrelia burgdorferi in these ticks varies significantly across regions, with reported rates ranging from under 10% to over 60% depending on the area.
• Other tick species:
  • Several other tick species may have Borrelia burgdorferi in them, but they have not been demonstrated to be successful at transmitting the bacteria to humans.

It’s essential to remember that even if a tick is infected, transmission of the bacterium to humans is not guaranteed. The risk of transmission generally increases the longer the tick remains attached, with many sources suggesting a higher risk after 24 hours of attachment.

There was once a vaccine for Lyme disease, but it’s no longer available. The LYMErix vaccine was approved in 1998 by the U.S. Food and Drug Administration (FDA). This vaccine was developed to produce an immune response against the outer surface protein A (OspA) of Borrelia burgdorferi, the bacterium that causes Lyme disease. It was actually quite effective, demonstrating 76% efficacy at preventing Lyme disease in phase 3 clinical trials after a 3-dose vaccine regimen.

However, 1998 was the same year Andrew Wakefield’s falsified data came out in the Lancet that claimed MMR vaccines were linked to autism. This led to general mistrust of vaccines in general, and increased attention on any adverse events after any vaccination. Unfortunately this impacted the success of the Lyme disease vaccine.

After its release, vocal individuals raised concerns about the vaccine’s safety, suggesting it was causing arthritis. Public concern grew with increased media attention, even though these claims were unsubstantiated, there was no evidence of a causal relationship between vaccination and these reported adverse events, and rates of arthritis among vaccinated individuals were no different than the general population.

However, this led to the manufacturer voluntarily withdrawing the vaccine in 2002. The withdrawal of LYMErix from the market was not due to its efficacy but rather due to concerns about its safety (even though no direct link was established between the vaccine and the reported adverse events) and threats of potential lawsuits.

Since the withdrawal of LYMErix, there have been ongoing efforts to develop new and effective vaccines against Lyme disease. Several promising candidates are in clinical trials now.

The observation that a number of celebrities have been diagnosed with Lyme disease and have spoken about it publicly has garnered attention and led to discussions on this topic. Here are some factors that might explain this phenomenon:

Potential Over-Diagnosis and False Diagnosis: There’s been debate and controversy in the medical community about the diagnosis and treatment of “chronic Lyme disease” or persistent symptoms attributed to Lyme disease. Lyme disease can be challenging to diagnose due to non-specific symptoms, which can overlap with many other conditions. People, especially celebrities with extensive financial resources, may seek a variety of opinions to address symptoms they are experiencing.

Some of these opinions sought from practitioners that do not have infectious disease expertise, including naturopaths, homeopaths, chiropractors, or physicians who completed training in unrelated medical fields. These practitioners are not covered by insurance but are quite popular in the celebrity space, where unfortunate predatory practices can lead them to profit substantially from prescribing long-term and ineffective treatments when there may not even be clinical or epidemiological evidence of Lyme.

As a result, Lyme disease can be over-diagnosed by practitioners who are not qualified to do so and even self-diagnosed by celebrities or other individuals who fall prey to misconceptions shared by celebrities.

Increased Awareness: When celebrities disclose their health conditions, it attracts more public attention and media coverage than when non-celebrities make similar disclosures. This can lead to a perception that the condition is more widespread than reality, and may lead others to believe they are suffering from a similar condition.

Diagnostic Challenges: Lyme disease can be challenging to diagnose due to its non-specific symptoms, which can overlap with other conditions. People, including celebrities, might go through extensive medical evaluations to identify the root cause of their symptoms. In many cases, these individuals have not met the clinical or epidemiological criteria for a Lyme disease diagnosis or may not have had documented evidence of a Borrelia burgdorferi infection. Many practitioners who diagnose this use unproven tests that report false positives using non-blood bodily fluids and unreliable testing technologies, leading people to believe they have an infection when they do not.

While celebrities may have been led to believe that their symptoms are due to a persistent, low-level infection, there is no credible evidence to support this. Remember, there are a variety of other medical conditions that have similar symptoms to the more generic signs of Lyme disease, and it is important to seek an accurate diagnosis from a credible healthcare provider.

Public Advocacy: Celebrities often have platforms that allow them to raise awareness for particular issues, including health conditions. Some celebrities have chosen to use their platforms to raise awareness about Lyme disease (whether they truly had Lyme disease or not), which brings more public attention to the topic.

General Prevalence: Lyme disease is the most common vector-borne illness in the U.S., with tens of thousands of confirmed cases each year. Given its overall prevalence, it’s not entirely unexpected that a number of celebrities would be diagnosed with it. However, there are routine reports of celebrities who have stated they have contracted Lyme disease in areas around the world where Lyme does not exist (such as Australia), have no evidence of a tick bite or circumstances in which they might have been exposed to infected ticks, or have publicly stated they sought unproven diagnostics and treatments.

While celebrities’ experiences with Lyme disease can draw attention to the condition and its challenges, it also draws attention to the misinformation about Lyme disease. As such, it’s essential to base health decisions and understandings on legitimated scientific evidence and consultation with credible healthcare professionals.

Lyme disease, caused by certain species of bacteria of the Borrelia genus, is found in many parts of the world, but is absent in other parts. In order for Lyme disease to be present, both tick species that can carry and transmit the disease-causing bacteria and the disease-causing bacteria must exist.

Lyme disease is found in North America, most commonly reported in the northeastern, north-central, and Pacific coastal regions of the United States. Canada also has areas where Lyme disease is prevalent, especially in the southeastern provinces. In North America, Lyme disease is caused by Borrelia burgdorferi and transmitted by the black-legged or deer tick and the westen black-legged ticks.

Lyme disease is present in countries across Europe, from Scandinavia in the north to countries like France, Germany, and Poland in central Europe, to some parts of southern Europe. In Europe, Lyme disease is caused primarily by Borrelia afzelii, Borrelia garinii, and less commonly, Borrelia burgdorferi and Borrelia bavariensis. The tick species that transmit these bacteria in Europe include the castor bean tick (Ixodes ricinus) and the taiga tick (Ixodes persulcatus).

In Europe, Lyme disease is endemic from southern Scandinavia into the northern Mediterranean countries of Italy, Spain, Portugal, and Greece and east from the British Isles into central Russia. Incidence is highest in Central and Eastern European countries. European countries with highest reported prevalence of Lyme disease include Estonia, Lithuania, Slovenia, Switzerland, France, Poland, Finland, and Latvia. Countries with lowest prevalence include Belgium, Bulgaria, Croatia, UK, Scotland, Ireland, Hungary, Norway, Portugal, Serbia, Russia.

There are rare reports of Lyme disease in temperate regions of some countries in Asia. Infected ticks occur from western Russia through Mongolia, northeastern China, and Japan; however, human infection appears to be uncommon in some of these areas. In Asia, Lyme disease is caused primarily by Borrelia afzelii, Borrelia garinii, and less commonly, Borrelia burgdorferi and Borrelia bavariensis. The tick species present in this geography include the castor bean tick (Ixodes ricinus) and the taiga tick (Ixodes persulcatus).

There is no confirmed presence of Lyme disease in other parts of the world including Australia, South America, and African countries. There is no definitive evidence that Borrelia burgdorferi or similar species as well as species of ticks that transmit these bacteria are present in these countries.

Symptom Presentation: While children can exhibit the wide range of symptoms associated with Lyme disease, certain manifestations might be more prominent or more commonly recognized in children. For instance:

• Children might be more likely to present with joint complaints, especially knee arthritis.
• Facial nerve palsy (a drooping of one side of the face, often mistaken for Bell’s palsy) is a relatively common presentation in children with Lyme disease.
• Children might be less likely to report or be able to articulate certain symptoms, such as fatigue or cognitive changes, compared to adults.

Erythema Migrans (EM) Rash: This characteristic “bull’s-eye” rash is a common early symptom of Lyme disease. In children, this rash might be overlooked if it’s located in a less visible area, such as the scalp. Parents and caregivers are often the ones to spot this rash.

Behavioral and Cognitive Changes: Some children with Lyme disease may experience behavioral changes, difficulty in school, or cognitive disturbances. These might manifest as mood swings, irritability, changes in school performance, or difficulties with concentration and memory.

Diagnosis Challenges: Children might have difficulty articulating their symptoms or might describe them differently than adults would. This can pose challenges in obtaining a clear clinical picture. Moreover, since children are often active and might have various bumps and bruises from play, initial symptoms might be dismissed or attributed to other causes.

Treatment: Antibiotic treatment for children with Lyme disease is generally similar to that for adults, but the specific antibiotic and dosage might vary based on the child’s age and weight.

Prevention: Because children often spend time playing outdoors, especially in grassy or wooded areas, they might be at an increased risk of tick bites. Educating children about safe outdoor habits, performing regular tick checks, and using appropriate tick repellents can help reduce the risk.

As with adults, early detection and treatment are crucial for children with Lyme disease. If a parent or caregiver suspects a child might have been exposed to a tick bite or is showing symptoms consistent with Lyme disease, they should seek medical evaluation promptly.

There are several tests used to diagnose Lyme disease, but determining if the disease is “cured” or if the infection has been eradicated can be challenging for several reasons:

Testing Limitations: The most common tests for Lyme disease include the enzyme immunoassay (EIA) and the Western blot. These tests detect antibodies against Borrelia burgdorferi. However, antibodies can remain in the body long after the bacteria have been eradicated, meaning a test might remain positive even if the disease is effectively treated and infection is eliminated.

Persistence of Symptoms: About 10-20% of patients report symptoms after successful antibiotic treatment, a condition known as Post-Treatment Lyme Disease Syndrome (PTLDS). These symptoms do not necessarily indicate ongoing active infection. Instead, they might result from residual tissue damage or an inflammatory response from infection. No current test can differentiate between ongoing infection and PTLDS.

 Clinical Assessment: Often, the determination of a “cure” is based on clinical assessment rather than a specific test. If a patient was symptomatic and then improves after treatment, and no new symptoms appear, the treatment is considered successful.

Potential for Re-Infection: Even after successful treatment of Lyme disease, individuals can be re-infected if bitten by another infected tick. A subsequent positive test might represent a new infection rather than a relapse of the original one.

A positive antibody test for Lyme disease indicates that your immune system has produced antibodies in response to Borrelia burgdorferi (or closely related species), the bacteria that cause Lyme disease. However, a positive antibody test by itself doesn’t necessarily confirm an active Lyme disease infection for a few reasons:

Persistence of Antibodies: Once produced, antibodies to Borrelia burgdorferi can remain in your system for years after the infection has been treated and cleared. Therefore, a person who was infected with Lyme disease in the past, even if it was successfully treated and the infection was eliminated, could still have a positive antibody test.

False Positives: Other infections or conditions can sometimes cause a false-positive result on Lyme disease antibody tests. This is one reason why the two-tiered testing approach is recommended for Lyme disease: first, an enzyme immunoassay (EIA), followed by a Western blot if the EIA is positive. This two-step process helps improve the accuracy of Lyme disease testing.

Clinical Context: A positive antibody test is most meaningful when considered in conjunction with clinical symptoms and a history of potential exposure to infected ticks. For example, a positive antibody test in someone with a characteristic erythema migrans rash (often described as a “bull’s-eye” rash) and a history of being in a Lyme-endemic area would be highly suggestive of Lyme disease.

If you have a positive antibody test for Lyme disease, it’s essential to consult with a healthcare provider to interpret the result in the context of your symptoms, history, and any other relevant factors. They can help determine whether you have an active infection, a past infection, or if further testing or evaluation is needed.