Lyme Disease and Bartonella
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.
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Bartonella
Bartonellosis consists of a large group of infections caused by Bartonella species. Bartonella are ubiquitous bacteria that can be transmitted by the bites of a broad range of arthropod vectors (in other words, bug bites) and by contact with body fluids and tissues from infected animals. Some bugs that spread bartonella include fleas, lice, ticks, and biting flies. Even spiders and ants have been published to transmit bartonella and cause human infection, and other bugs are suspected, like mites. These stealthy microbes are highly adapted to living in mammalian hosts and are associated with a broad spectrum of diseases in both humans and animals.
Bartonellosis is considered an emerging infectious disease. Medical science knew of only 2 Bartonella species before 1990, but now we know of more than 40, approximately 20 of those species thus far demonstrated to cause human disease. Bartonella henselae, the causative agent of Cat Scratch Disease (CSD), is thought to be the most prevalent species found in humans in the United States, but we’re really not sure of this because the testing for the other species is largely unavailable. Although the first case of CSD was described in the 1950s, B. henselae wasn’t identified until HIV came along. Immune-suppression from HIV changed how bartonella presented clinically and microbiologically, and was instrumental in the discovery of this bacteria in the 1990’s. Because of this, bartonellosis was initially believed to primarily affect immunocompromised individuals, which it turns out, is incorrect. Immunocompetent people frequently become chronically infected, and may experience a spectrum of manifestations ranging from asymptomatic to life-threatening infection, and anything in between. When bartonellosis results in significant illness, these chronic infections cause cardiac, rheumatologic, neurologic, and hematologic disease which can be very serious.
Stereotypes can lead us astray. Some reported cases are too often focused on acute presentations of CSD, Trench Fever, and Carrion’s Disease, making them easier to diagnose. Acute infections are likely to be diagnosed and treated quickly, but the outcome is remarkably more challenging for chronically ill patients who can go years without a correct diagnosis.. Although we review these stereotypical presentations below because awareness of them may provide diagnostic insight into the more common and complex presentations, please know that to rigidly restrict bartonella diagnosis to these narrow clinical presentations may be a grave disservice, resulting in a missed diagnosis.
Bartonellosis Stereotypes
CAT SCRATCH DISEASE (BARTONELLA HENSELAE)
Cat Scratch Disease (CSD) is a bartonellosis diagnosed in humans and animals across the United States. Bartonella henselae, the causal agent, is transmitted from a mammal reservoir to a human either through arthropod vectors, as detailed above, or by a cat scratch or bite, hence the name. The principal reservoir animal for this species is a cat, but it’s also been found in horses, dogs, and wild animals, for example bats.
Major symptoms may not manifest for several days, or even weeks after original exposure.
3 – 10 Days After Exposure
A painless, red spot may appear on the skin where the infection or exposure occurred. The spot usually won’t itch, but will possibly fill with fluid, ultimately crusting over and healing with a scar. The spot can last 1 – 3 weeks.
1 – 3 Weeks After Exposure
Lymph nodes start to swell, predominantly near the source of the infection. Underarms, neck, and groin regions are most frequently affected. Skin may feel hot and become red, and the lymph nodes might feel sore and tender. This typically persists for approximately 2 – 4 months, but may persist for up to a year or even longer. Initially thought to be a “self-limited illness” in immunocompetent patients, we now know that this is not the rule and that serious consequences can result.
Trench Fever (Bartonella quintana)
Trench Fever is a widespread manifestation of bartonellosis that is thought to be chiefly transmitted by human body lice and is prevalent among the homeless population. It is notorious for having caused, fever, headache, and leg pain in excess of one million soldiers in Europe during World War I. These soldiers suffered from poor hygiene and unsanitary conditions that became a breeding ground for arthropod vectors like body lice. Although Trench Fever has been around for a long time, the causative agent, Bartonella quintana, was only isolated in 1960. Mammalian transmission of this pathogen also occurs and was documented in 2007 when a North Carolina woman tested positive after being bitten by a feral cat.
Symptoms can manifest between a couple of days to 5 weeks after the original exposure.
4 – 15 Days After Exposure
Recurrent fevers which can persist for approximately 4 – 5 days at a time.
Weeks to Months After Exposure
Most people recover from the actual recurrent fevers within two months, but some develop relapsing or significant chronic multisystem illness,
CARRION’S DISEASE (BARTONELLA BACILLIFORMIS)
In 1885, Daniel Carrion. a Peruvian medical student, inoculated himself with fluid from verruga peruana lesions in order to document the symptoms that followed; he died 5 weeks later of the illness which now bears his name. In 1909, its cause, Bartonella bacilliformis, was discovered. It’s primarily transmitted by the bite of infected sand flies in Peru, Ecuador, and Columbia. In spite of being geographically isolated, cases have also been described in travelers to South America months to years after returning to non-endemic countries. Primary symptoms typically start to manifest between 3 and 12 weeks after Bartonella exposure.
3 Weeks After Exposure
This infection frequently presents itself as a severe, life-threatening illness, referred to as Oroya Fever, which can sometimes have a case fatality rate as high as 80% without intensive care invention and antibiotic treatment,
Weeks to Months After Exposure
If patients don’t receive treatment but manage to survive Oroya Fever, they may enter the second phase of Carrion’s Disease, also known as verruga peruana (Peruvian warts). Reddish-purple nodules develop on the skin, although in some cases, this can also progress to internal organs. With proper antibiotic treatment, Carrion’s Disease can subside within a few weeks, but for some patients, it can take years to subside.
CHRONIC BARTONELLOSIS
Chronically ill bartonellosis patients typically present with multi-system illness, symptoms of which can resolve and relapse in a cyclic pattern. What’s more, concurrent infections with other bacteria (Borrelia burgdorferi and others.) and parasites (Babesia microti and others) further complicate the clinical features of chronic bartonellosis. It’s routinely written in various medical journal articles that these chronic infections are often mistaken for “other disorders,” such as autoimmune diseases (rheumatoid arthritis, psoriasis, lupus, etc.)–But conclusions drawn from both the medical literature and the clinical practice of not only Dr. Phillips, but countless of his colleagues around the world point to something more paradigm changing. And it’s the premise of our book. In Chronic–The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again, we provide evidence that it’s not a matter of misdiagnosis or of mimicking, but rather one of causation. It’s often been said that when medical science finds a cause of one autoimmune condition, we’ll find the cause of all of them. This may be close to the truth. It’s likely the occult bartonella infection causes a broad swath of chronic and autoimmune disease, but it’s not the only cause any single condition. There are other infections that can result in overlapping disease manifestations.
BARTONELLA ENDOCARDITIS
Endocarditis is an infection of the inner lining and valves of the heart, usually caused by bacteria, but can be caused by other microbes as well.. Endocarditis characteristically presents with non-specific clinical signs like chills, fever, fatigue, or muscle pain, but can be very serious, even fatal, sometimes requiring cardiac surgery. When imaging shows the disease, physicians will collect samples to culture so a causal pathogen can be identified.
The problem is that not all bacteria can be readily cultured, and these are referred to as fastidious organisms. Bartonella is one such organism and is a leading cause of culture-negative endocarditis, Since 1993, a wide spectrum of Bartonella species have increasingly been implicated in human endocarditis. Given that endocarditis is such a serious disease, if cultures are negative, bartonella should always spring to the list of suspects.
Bartonella Risk Factors
Exposure to fleas, lice, biting flies, ticks, spiders, ants, and potentially other arthropods.
Working or living with pets or other animals.
RISKS FOR DEVELOPING SEVERE ILLNESS
People with innately weaker immune systems (younger children, adolescents, aging adults).
Cancer patients, people with weakened immune, or patients using immunosuppressants (such as steroid therapy).
Bartonella Laboratory Diagnosis
Successful Bartonellosis diagnosis can be challenging. Non-specific symptoms are common and even serious bartonella infections with false negative blood tests have been repeatedly documented in the medical literature.
Some current methods include:
Culturing means to grow the bacteria from clinical samples such as blood, body fluids, or body tissues. Although some advancements have been made in this area by specialty labs, we’re still a good ways off from having a high sensitivity culture test even in those labs and false-negative culture tests are common even in active bartonellosis..
Serology means looking for antibodies that our bodies make against the infection. It’s not a direct detection test and therefore can’t be relied upon to document persistent infection or clearance of infection.
PCR (Polymerase Chain Reaction) is a method of amplifying bacterial DNA so that it can be detected. Being a direct detection test, it can document persistence of infection when positive. For additional certainty of positive results, DNA amplified by PCR can be sequenced to make sure it does not represent a false- positive result. False negative results occur and are not uncommon.
Visit the website of Dr. Steven Phillips for more information