LYME MYTHS

THE MYTHS THAT GET IN THE WAY

The complexity of Lyme+ is partly why so many misconceptions and myths are perpetuated. We’d like to clear the air.

MYTH: It takes 24 – 48 hours of attachment for ticks to transmit Lyme or other infections. 

FACT: Some authorities state that it takes the tick at least 36 hours to transmit Borrelia, but this is not the case. There is no safe time for a tick to be attached since the minimum attachment times for transmission of almost all of these pathogens is unknown; however, there are studies that indicate rapid transmission of some. Colorado State University’s Gregory Ebel and Laura Kramer of the New York State Department of Health were the first to demonstrate that Powassan virus infection can happen within fifteen minutes of tick attachment, publishing their findings in 2004,although Brazilian researcher Danilo Saraiva and his colleagues found that transmission of Rickettsia rickettsii by unfed Amblyomma aureolatum ticks required more than 10 hours’ attachment time, they also found that transmission could occur in as little as ten minutes with engorged ticks.  In a 2014 medical journal review article looking into tick duration times to transmit Lyme, British scientist Michael J. Cook reports a paper from 1987 in which data from rodent studies showed that the longer a tick was attached, the higher the risk of infection.But the timing was mixed. One of the rodents became infected in less than twenty-four hours while others took longer. When the scientists calculated the probability of transmission within twenty-four hours, they came up with a percentage as high as 20.37. In his own paper, Cook writes: “The claims that removal of ticks within 24 hours or 48 hours of attachment will effectively prevent Lyme are not supported by the published data, and the minimum tick attachment time for transmission of Lyme in humans has never been established.” Borreliae are present in the salivary glands of even unfed ticks about 20 percent of the time, which could make transmission of Lyme more rapid from those ticks.And some studies in the past didn’t take into account the length of time that ticks crawl around before biting, which can be substantial, amounting to an overestimate of the tick attachment time required for transmission. 

MYTH: Tick bites only happen to people who are outdoorsy, have pets, and do a lot of hiking and camping. 

FACT: You can pick up a tick by taking even one step through short grass. It happened to Dana twice! After strolling from the curb into a restaurant and brushing against a few blades of cut grass along the walkway in Sag Harbor, New York, I picked up a sneaky tick that tried to embed itself between my toes. And twenty-four hours after a concert at Jones Beach in which I took one step on a short patch of grass, I found an engorged tick embedded in my thigh, in spite of wearing long pants and copious amounts of DEET (diethyltoluamide) all over. This bite required two weeks of prophylactic antibiotics. You can even get bitten on a beach or in your sleep! And remember, ticks aren’t the only culprits — they’re just one of many disease-carrying bugs. 

MYTH: People with early stages of Lyme disease typically get a rash, and that rash looks like a classic “bull’s-eye” (a red circular rash that’s clear in the center). 

FACT: The most common appearance of erythema migrans (EM) is a solid pink circular-to-oval rash. Remember, the initial published findings by Dr. Steere documented that only 25 percent of patients had a history of rash compatible with EM. Other published research has pegged the rate of prior EM in late Lyme patients at 22 percent.  Part of the problem with arriving at an accurate percentage is that the CDC’s statistics on the rates of EM in early Lyme may be inherently skewed higher. It may be likened to publishing a study about how many moviegoers purchase tickets, when the ticket purchase is required for entrance in the theater in the first place. 

MYTH: You would know if you were bitten. 

FACT: Ticks and tick bites are tiny, frequently occur in hidden places such as within hair on the scalp or in body crevices, and often go unnoticed. Most Lyme patients don’t recall having a tick bite. The distinctive bull’s-eye rash is an atypical presentation, and other symptoms like fatigue, joint pain, and fever mimic many other illnesses. 

MYTH: Diagnosing Lyme is easy. 

FACT: Diagnostic failures cause much of the confusion around Lyme and associated diseases. The widely used diagnostic for Lyme is the two-tier blood test, which measures the presence of antibodies against the pathogen and as mentioned, misses most cases of Lyme. It also does not reveal the presence of the bacterium itself. Because it can take two to four weeks for the body to generate antibodies, too-early testing has been shown to miss up to 60 percent of acute (early-stage) Lyme cases. Sadly, detection of late-stage cases doesn’t fare much better. Lyme antibody testing also does not detect related Borrelia species (e.g., the Lyme-like Borrelia miyamotoi, bissettii, mayonii, or lonestari), or any of the other infections such as Bartonella, Babesia, Anaplasma, Ehrlichia, Rickettsia, F. tularensis, Brucella, or filaria, among others. They also have high variability between labs and cannot be used to assess treatment response following antibiotics. Also notable is the fact that this kind of testing cannot differentiate between active infection and a previous one. (Much more on testing later). 

MYTH: If you test negative for Lyme using bodily fluids such as blood, spinal fluid, urine, and/or tissues to detect B. burgdorferi and/or its components, and if you fail to have the objective signs outlined in the CDC case criteria, such as EM, Bell’s palsy, arthritis, or atrioventricular heart block, then you can’t have Lyme disease. 

FACT: As mentioned, Lyme antibody testing is abysmal. There are over fifty medical journal articles documenting active Lyme disease despite negative antibody tests.Even a normal spinal tap doesn’t rule out Lyme; intact live bacteria and their DNA have been found in normal-appearing spinal fluid.  This research spans all stages of illness. In terms of objective signs (what doctors can see and prove) versus subjective symptoms (what patients feel but can’t prove), volumes of published data show that subjective symptoms of Lyme such as fatigue, headache, muscle pain, and joint pain outnumber the objective signs by significant numbers.  So, to restrict clinical diagnosis to those patients who have the few objective features (e.g., positive Lyme test along with usual clues like the rash) that comprise the CDC criteria reinforces a medical paradigm of dismissing patients and leaving them undiagnosed. Remember that the CDC admits that their criteria fail to capture 90 percent of Lyme cases! 

MYTH: Direct testing, which uses special technology to detect DNA from an invading germ, rules out the presence of Lyme disease when negative. 

FACT: Unfortunately, direct detection of the infection has proven challenging due to a number of complicating factors and cannot be relied upon when results are negative. Newer, more accurate detection approaches are being developed, but despite good research supporting their validity, they have not yet become publicly available. 

MYTH: Neurological problems from Lyme disease are not common. 

FACT: Neurological problems resulting from Lyme disease are extremely common, much more so than arthritic issues, which typically affect the knees and are associated with positive Lyme antibody tests. But neurologic features, especially later into the illness, are associated with fewer positive Lyme tests, making late-stage neurologic Lyme symptoms more difficult to diagnose than Lyme arthritis. (Bartonella is far more likely to be associated with a widespread inflammatory arthritis than Lyme). 

Studies have shown that within two weeks of entering the body, Lyme Borreliae can invade the brain and spinal cord.  At this stage, some patients develop meningitis (inflammation of the lining around the brain), but it’s often asymptomatic. Lyme meningitis isn’t the acutely life-threatening kind like the ones caused by fast-growing bacteria. A rarer but potentially more serious manifestation of brain infection with Lyme Borreliae is encephalitis (inflammation of the brain itself). Once inside the central nervous system, the organism can wreak all kinds of havoc, ranging from mild to severe, including headaches, sleep disturbance, sensitivity to light and sound, cognitive dysfunction, numbness, weakness, abnormal muscle movements, and even mental illness. Common psychiatric manifestations include depression, anxiety, and OCD (obsessive-compulsive disorder). Less common psychiatric outcomes include bipolar disease and psychosis. 

MYTH: It’s not Lyme, it’s MS, and we can always tell the difference. 

FACT: The tail of Borrelia spirochetes contains flagellin, which appears nearly identical to myelin to the immune system. Myelin is the protective sheath surrounding nerves. During the immune system’s response against Lyme, and probably non-Lyme Borrelia spirochetes as well, there can be collateral damage to myelin, the medical term for which is demyelination, the hallmark of multiple sclerosis (MS). Back in the early MS literature, researchers found spirochetes in the brains of MS patients on autopsy.  So convinced were they that it caused MS, they called it by a Latin name that meant “myelin destroyer.” The causal relationship of spirochetal infection, likely Borreliae, to a significant percentage of relapsing MS is well documented in the medical literature and explored in later chapters. We can’t tell you how many times patients have been diagnosed with MS when, in reality, they had an underlying Lyme infection causing their demyelinating disease. It is never normal for your body to start attacking itself for no reason. There is always a reason, and if we don’t find it, lives can be lost. Multiple sclerosis was definitively thought to be an infectious disease before the concept of autoimmune illness sprang up with the discovery that steroids could temporarily suppress symptoms. 

Despite their toxicity, immune-suppressing drugs (like the ones in numerous TV commercials) have become commonplace treatments. They can sometimes temporarily suppress symptoms, but they do not get to the root of the problem in people who have an underlying infection. When the immune system is suppressed, the bacteria are able to go deeper and become more entrenched in the body, while patients are also made vulnerable to other serious infections. This is why giving steroids before, and even with, antibiotics increases the risk of antibiotic treatment failure in Lyme. If that’s not enough to make you think twice about immunosuppressants, tune in to the disclaimers for these exorbitantly priced drugs and see for yourself: Their toxic side effects involve almost every organ while Big Pharma gets filthy rich. Ocrevus, for example, is a drug for MS and costs $65,000 per year. But that’s just the price of the drug. It doesn’t include all the associated fees involved with administering it. 

One of my (Dr. Phillips’) patients was paralyzed on the left side of his body with a diagnosis of multiple sclerosis (MS) at the age of thirty-eight after he had Lyme. With antibiotics, his paralysis resolved, as did most of his eleven brain and spinal cord lesions. Because he responded more quickly than average, it only took a month for the paralysis to get 90 percent better, and within seven months, he was 95 percent back to normal. Over twenty years have passed, and he’s not relapsed, though he still gets the occasional minor symptom. His protocol includes pulsing — going on and off antibiotics intermittently. Generally, it involves three weeks of oral antibiotics about six times per year because relapses are very common when severe central nervous system illness has become established. Most of my MS patients come to me already on standard MS drugs and not doing well. If I find evidence of Lyme, I add in combinations of oral, pulsed antimicrobials centered on a backbone of tetracycline-class antibiotics and the large majority see their symptoms improve, along with about a 50 percent rate of lesions disappearing on MRI. However, it usually takes twice as long to treat these patients as the average Lyme+ patient. I’ve had other doctors tell me they think it’s a coincidence when my patients get better after a decade of illness. I’ll never cease to be amazed by the power of bias. 

MYTH: PANS isn’t a real illness. 

FACT: Children and teens can develop a neurological form of Lyme+, which seems to be mostly due to Bartonella infection, that manifests as acute behavioral or emotional disturbances, termed PANS (Pediatric Acute-onset Neuropsychiatric Syndrome). These kids experience a range of symptoms that can include immediate, dramatic personality changes, most notably OCD, tics, and sleep disturbance. PANS can range from mild to severe, frequently resulting in withdrawal from social activities and worsening school grades, and even the inability to attend school at all. The stress and trauma, for both the patient and the family, that a severe case of PANS can produce is beyond words. Parents become prisoners to an illness that doctors are clueless about. Imagine your darling fourteen-year-old daughter, on the honor roll, well behaved, funny, the apple of everyone’s eye, who in the span of two months turns into a terrorizing, cursing, raging stranger with narcolepsy. A stranger who spits at you, screams that she hates you, throws dishes at your head, sleeps all day, and sneaks out of the house in the middle of the night to find trouble. Welcome to PANS. 

One case in particular that hit home for us is the story of a bright young man starting college. Eric was a freshman at a college in Southern California in the fall of 2017 when, two months into the semester, he developed flu-like symptoms, followed by two asymptomatic weeks, and then three weeks of severe vertigo. He then suddenly developed severe anxiety and derealization, which is a feeling that one’s surroundings are not real. Depersonalization and derealization are common neuropsychiatric symptoms of Bartonellosis in my (Dr. Phillips’) experience. 

Eric had never had a psychiatric disturbance in his life. Panicked, he asked his parents to find local doctors. He saw five who came up empty and eventually referred him to a psychiatrist, whose treatments were unsuccessful. So many doctors, no answers, yet the medical literature is rife with studies documenting that psychiatric illnesses can be linked to common infections like Lyme+. The fact that it came on so abruptly made it all the more suspicious for infection. How did the doctors miss this? They probably just didn’t know; many general doctors and even psychiatrists don’t know the breadth of what these infections can do and dismiss them out of sheer ignorance. After spending $5,000 on psychiatrists, Eric experienced no relief, and his anxiety and derealization worsened to the extent that he could no longer leave his dorm room. Desperate, he dropped out of school and flew home to be evaluated by a Lyme doctor. His Bartonella and Lyme tests came back positive and he started antibiotics. He had a rocky beginning and experienced only limited benefits after several months of uninterrupted antibiotic therapy focused on Bartonella. He finally came to me (Dr. Phillips) and I made some simple adjustments to his regimen, both in the individual drugs and by changing them to a pulsed schedule. 

He improved and only required a couple of additional months of treatment before he felt fully recovered. He was able to return to school and now, at the time of this writing, he reports feeling great. 

MYTH: Long-term antibiotic therapy for Lyme is an unproven treatment that’s highly dangerous. 

FACT: Of course, we want to minimize risks to patients from treatments and maximize benefits. Therapies for most serious diseases can have serious side effects, but the risk of fatality from long-term antibiotic therapy is quite low. Far more deaths have been caused by Lyme+ than by its treatment. The risk of fatal outcomes in the treatment of inflammatory diseases with immunosuppressive agents, and cancer with chemotherapy, is far higher than for antibiotic therapy, but the difference in those diseases is that they are accepted by the CDC as legitimate, therefore the risk is deemed justifiable. But high rates of treatment failures using short-term antibiotic therapy are well documented in the medical literature.It has been clearly demonstrated in study after study that short-term antibiotics are simply not effective in many cases.This, coupled with published research proving bacterial persistence despite short-term antibiotics, makes the case for longer treatments until better treatments come along.