What is Lyme Disease?
Lyme disease is a bacterial infection that is commonly spread by various species of ticks. These ticks can be as small as a poppy seed, which is one reason why so few who contract Lyme+ remember getting a bite. They are stereotypically thought to be located in wooded and tall grasses, but that’s not always the case, with ticks turning up in lawns, on pets, and even at the beach. Although people may think of Lyme as an East Coast U.S. disease, it’s found throughout the United States and worldwide, from over 60 countries.
According to The Centers for Disease Control and Prevention (CDC), more than 329,000 people contract Lyme disease in the U.S. annually, with estimates ranging up to 440,000 per year. That’s greater than the number of new cases of invasive Breast Cancer, Hepatitis C, and HIV/AIDS combined; however, since diagnosing Lyme can be challenging, many experts believe the actual number of cases is considerably higher. As such, it frequently goes undiagnosed, with patients instead being diagnosed based on the clinical presentations that this infection can manifest, which are myriad. For example, patients frequently receive a diagnosis of autoimmune illness, psychiatric disorders, or neurodegenerative disease, all of which are descriptive diagnoses that do not speak to the root cause of the respective illnesses.
Lyme disease, in the strict sense, is caused by a spirochete—a corkscrew-shaped bacterium known as Borrelia burgdorferi. It can affect any organ or system of the body, including the brain and nervous system, muscles, joints, and heart, and so Lyme is called “The Great Imitator” because its symptoms mimic many other diseases. The natural question that follows is: Does it mimic, or does it cause? It’s a fine point, but an important one: If it’s mimicking a certain disease, then it’s causing that disease in that individual.
To further complicate matters, there are many strains of B. burgdorferi and other closely related borrelia species that all cause similar disease. This is hugely problematic since these other borrelia species are not rare, and for most, no diagnostic test exists.
How do you test for Lyme?
The most common Lyme tests look for antibodies developed from exposure to the bacteria, but they’re notoriously inaccurate, with numerous published reports in the medical literature of patients with severe, progressive illness despite normal-appearing tests. There is also considerable debate about the use of CDC criteria (a strict testing criteria) as a diagnostic standard for Lyme, as there are 10 times as many Lyme cases being diagnosed as are captured by its criteria.
Direct detection tests for Lyme are available, like polymerase chain reaction (PCR) which amplifies DNA of the pathogen so it can be found; however, given the fastidious nature of these bacteria and their broad spectrum of strain and species, even PCR, which has such high sensitivity for some infections such as hepatitis C and HIV, frequently fails to reliably detect the presence of Lyme bacteria.
How do people contract Lyme disease?
People can contract Lyme from a tick bite. Nymphs, representing a younger stage of the tick, are approximately the size of a poppy seed. Since they are so small and their bite is painless, many people do not even know they have been bitten.
Once a tick has attached, if undisturbed, it may feed for several days. The longer an infected tick remains attached, the greater the likelihood it will transmit Lyme, and other infections that these ticks carry, but there is no known risk-free time for tick attachment.
If women are infected, they can transmit Lyme and other vector-borne diseases to their unborn children. Congenital Lyme has been documented to be capable of causing devastating outcomes such as miscarriage, stillbirths, neurologic, cardiac, and musculoskeletal disorders. There is significant published evidence on this complex topic.
There is also evidence that sexual transmission may be possible.
Symptoms of Lyme Disease
Symptoms of early Lyme disease may present as a flu-like illness (fever, chills, sweats, muscle aches, fatigue, nausea, and joint pain). Some patients have a rash or Bell’s palsy (facial drooping) as well. Although Lyme can present with the stereotypical bull’s-eye rash called erythema migrans (EM), most EM’s are not the stereotypical bull’s-eye, but rather are solid and don’t blanch in the center. Often the rash doesn’t occur at all. Estimates of patients who develop the rash vary widely. Original data from Steere’s published work showed that only 25 percent of infected people had a prior rash. Newer data is less reliable because the rash is now part of the CDC’s reporting criteria for Lyme disease and is frequently used to diagnose Lyme, which causes a skewing higher of its prevalence. It’s like saying that the majority of basketball players are tall, when being tall is a frequent prerequisite for being on the team.
The rash can begin a few days or even several weeks after the bite. Non-stereotypical presentations of it are common: They can be faint, have an irregular shape, blister, resemble a bruise or look like spider bites, ringworm, or cellulitis. Multiple, so-called “satellite” EM’s can develop on different parts of the body. If you develop a rash, take a photo and see a doctor immediately.
Lyme tests are frequently negative at the time of the rash and treatment is indicated regardless of test status. This is very important to know! EM is diagnostic for Lyme, and early treatment is associated with better outcomes.
Chronic Lyme
Even Lyme that is treated early can turn into late-stage or chronic infection. There are multiple studies of antibiotic-treated EM-stage disease demonstrating approximately a 20-25 percent rate of long-term, persistent symptoms on patient follow up, but some have shown a more worrisome picture.
A study by Johns Hopkins concluded that 39 percent of patients treated with the standard course of antibiotics, recommended by the Infectious Diseases Society of America (IDSA) and CDC, continue to have symptoms and/or functional impact. A published study by Danbury Hospital demonstrated that 61 percent of EM patients continued to have the same symptoms for up to 1 year later. This demonstrates that standard treatment is insufficient for many, even in early stages of disease.
Lyme can spread to any part of the body and affect any body system, from the brain to the heart to the joints, bones, and muscles. According to a survey published at Peerj.com, which included 5,000 responses, patients with Chronic Lyme disease reported an average of three severe or very severe symptoms, with 74 percent reporting at least one symptom as severe or extremely severe.
Treatment failures of later stage disease are more frequent than what occurs in early stage disease. There are some who posit that there is no convincing biologic evidence for the continued presence ofLyme bacteria in humans despite a standard 1 month course of antibiotics, and that patients who continue to be symptomatic are suffering from what they purport to be a post-infectious syndrome they term “post-treatment Lyme disease syndrome” (PTLDS). Both of these statements are patently false: Lyme bacteria have been cultured alive from humans in many published reports, after not only a standard short course of antibiotics, but also after months to years of antibiotic treatment. What’s more, an NIH study of patients purported to have PTLDS demonstrated that when ticks raised in the lab to be free of infection were allowed to feed on “PTLDS” patients, tick infection occurred, which can only happen if the patient was still infected.
Further, “PTLDS” patients have been published to respond to antibiotics, but not placebo; however, this response is unsustained and the patients relapsed upon attempt to stay off antibiotics, indicating that better treatments are required. Some are being developed now.
After arguing about Lyme for over 40 years, it’s been concluded that the antibiotics recommended by IDSA as curative for Lyme, can’t even kill the microbe in the test tube. Some survive, and these have been named persisters. Major universities, including Johns Hopkins, Tulane, Northeastern, and others have published a vast body of medical literature on the topic, which has helped to dismantle the claim that Lyme is easy to cure.
Innovative compounds that are already FDA-cleared, many of them not antibiotics, have been found to kill Lyme persisters, as have a range of herbals. Combinations of these have been published to have increased efficacy in eradicating persisters, but human studies have not yet been performed.
Should tick bites be treated?
It’s commonly believed that antibiotic treatment at the time of the tick bite may prevent Lyme, but the optimum duration of treatment is unknown. Some doctors treat with a single dose of doxycycline, which was published in a highly criticized study to reduce the rates of EM within the 6 weeks that patients were followed, but there are major flaws in that study. The core issue is that preventing EM doesn’t necessarily equate with prevention of Lyme, which can frequently take longer than 6 weeks to manifest and for which appropriate follow up was never done. Though treatments vary, ILADS guidelines recommend 20 days of doxycycline.