LYME DISEASE

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 US disease, it’s found throughout the United States and worldwide, from over 60 countries. 

The CDC estimates that there are 479,000 new cases of Lyme each 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, and patients are diagnosed with autoimmune illness, psychiatric disorders, or neurodegenerative disease. We can’t stress this point enough: Lyme and other common infections are often the root cause of these conditions and should be thoroughly evaluated by a specialist trained by ILADS.org. 

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.”

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 the bite of the nymphal, or immature, form of the tick. Nymphs 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 cause devastating outcomes such as miscarriage, stillbirths, neurologic, cardiac, and musculoskeletal disorders. 

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), Although a bull’s-eye rash called erythema migrans (EM) can present with Lyme, most Lyme rashes are solid and don’t blanch in the center or 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, while newer data is less reliable because the rash  is part of the CDC reporting criteria and 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 usually 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 EM-stage disease demonstrating approximately a 20 percent – 25 percent rate of 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 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 of Lyme 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 dismantled 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.

WHAT IF I GET A TICK BITE?

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,  rash within the 6 weeks that patients were followed, but there are major flaws in that study. The core issue is that preventing the rash 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.