Florida In The Lyme-Light

Lyme Disease Is On The Rise Nationwide - Even In The Sunshine State

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Chances are, someone you know has been affected by Lyme disease.

And celebrities aren't immune, either: Singer Avril Lavigne, "Real Housewives of Beverly Hills" star Yolanda Hadid, and actors Alec Baldwin and Ben Stiller all report suffering from the tick-borne disease, which causes a bacterial infection that can have wide-ranging effects on the body.

Lyme disease is on the rise nationwide, including in Florida, where tick season is year-round. It's the most commonly reported vector- borne illness in the United States, according to the Centers for Disease Control and Prevention (CDC). The vector in Lyme disease is Ixodes scapularis, the black-legged tick (also known as a deer tick) that transmits the infection with the Borrelia burgdorferi bacterium after biting and consuming blood from its human or animal host. Ticks that carry Lyme can also transmit other infections.

New data from the CDC show that, in 2017, state and local health departments reported a record number of cases of tick-borne disease, increasing from 48,610 in 2016 to 59,349 in 2017. Keep in mind that, due to widespread under- reporting, the numbers capture only a fraction of cases of tick-borne illnesses. The actual numbers are likely much higher.

This increase follows an accelerating trend of tick-borne diseases in the U.S. Between 2004 and 2016, the number of reported cases doubled, and researchers discovered seven new tick-borne pathogens that infect people.

Research estimates that as many as 300,000 cases of Lyme go unreported every year in the U.S. Although the greatest risk of Lyme is concentrated in 14 states in the Northeast, the Mid-Atlantic and the upper Midwest, it can be found in all 50 states. Reasons for the increase in cases and geographic spread of the disease remain unclear, but some have credited warmer winters and greater host-animal populations.

Florida's Wake-Up Call

Last July, startling news came from laboratory Quest Diagnostics' Health Trends report: California and Florida saw the largest absolute increases in the number of positive test results for Lyme. Quest data for Florida showed 283 infected patients in 2015 and 501 in 2017 - representing a 77 percent increase.

While the numbers are alarming, it's important to note that Lyme is reported from the county of residence, not the location of exposure. And, the CDC notes, "once your blood tests positive, it will continue to test positive for months to years even though the bacteria are no longer present."

Dr. Kerry L. Clark, a professor of epidemiology and environmental health in the Department of Public Health at the University of North Florida, notes that criteria for the CDC's surveillance-case definition of Lyme disease are very strict to ensure only true, confirmed cases are considered in disease statistics.

Florida Department of Health (FDOH) stats differ: 166 cases of Lyme were reported in 2015 and 210 in 2017 - for a 27 percent increase. Seventy- five percent of cases reported in 2015 cited exposure outside of Florida, while 74 percent cited exposure outside of Florida in 2017. According to FDOH, Florida accounted for less than 1 percent of all cases reported nationally in 2015 and 2016. Between 2015 and 2017, 47 of Florida's 67 counties reported cases of Lyme, with 33 counties reporting cases acquired in Florida.

"Overall, we know that Lyme disease is present in Florida and many other Southern states," says Dr. Clark. "Whether cases were infected elsewhere or right here in Florida, people with Lyme are here, and they need to be evaluated objectively and diagnosed and treated appropriately."

He notes that clinicians throughout the South need to be educated about the presence of Lyme and how to identify and treat it.

"It needs to be considered as something possible, not something rare and unlikely," Dr. Clark says. "I believe that, too often, Lyme is missed in the early stage of infection in Southern patients, and this allows dissemination and persistent illness and probably leads to more treatment- resistant infections."

He adds that many statistics about Lyme infection rates are low due to difficulties diagnosing the condition.

"With Lyme, we are dealing with a disease for which we lack diagnostic testing with adequate sensitivity to detect the infection, whether during early or late stages. Therefore, I would consider all reported numbers of Lyme cases in Florida to be significant underestimates of the true incidence of the disease, just as they are considered so in states in highly endemic areas like the Northeast."

Dr. Clark is conducting a pilot study of patients in the South with Lyme-like illness.

"Our hypothesis is that Lyme Borrelia, other tick-borne pathogens or perhaps non-tick-borne infections are the primary cause of the patients' signs and symptoms," he explains. "The purpose of the study is to explore all possible infections that might be contributing to the patients' illnesses. All of the patients have symptoms consistent with various presentations of Lyme disease, and all of them are chronically ill."

The study uses a combination of methods to look for different infections.

Difficult To Diagnose

One difficulty in diagnosis is that Lyme tests don't detect the disease-causing bacteria in the blood. Instead, a two-tier blood test detects antibodies against Lyme to confirm a diagnosis. It's most reliable a few weeks after a tick bite. If the Enzyme Linked Immunosorbent Assay (ELISA) test is positive, the Western Blot test is done to confirm diagnosis, but the ELISA test can give false positive and false negative results if the test is done too early before antibodies have a chance to develop.

When patients present with the tell-tale bullseye rash, or erythema migrans, from a tick bite, Lyme is the clinical diagnosis, whether the patient tests positive for Lyme at that time or not. But, up to 30 percent of those bitten by a tick don't get the rash. Sometimes, a person doesn't remember being bitten and does not have the rash.

Ticks in the immature nymph stage, when most likely to transmit infection, are so tiny that they may feed on their human host and drop off unnoticed. Ticks also tend to bite in places where they're not easily seen. A tick must be attached to a body for 36 to 48 hours to transfer the bacteria.

The oral antibiotic therapy against Lyme and many other tick-borne infections includes doxycyline or amoxicillin and cefuroxime axetil for up to 21 days. Most people diagnosed with Lyme early enough recover fully after a course of antibiotics, but 10 percent to 20 percent don't get better or develop other debilitating neurological, cardiac or cognitive symptoms with possible autoimmune involvement.

According to the CDC, early signs and symptoms of Lyme - which appear three to 30 days after a tick bite - include fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes and the telltale rash.

Later signs and symptoms, manifesting days to months after the bite, include severe headaches and neck stiffness; additional rashes; arthritis with severe joint pain and swelling; facial palsy; intermittent pain in tendons, muscles, joints and bones; heart palpitations or an irregular heart beat; episodes of dizziness or shortness of breath; inflammation of the brain and spinal cord; nerve pain; shooting pains, numbness or tingling in the hands or feet; and problems with short-term memory.

The dynamics of persistent symptoms of Lyme are unknown, but the body's immune response to the organism is a primary area of research.

Dr. Linda Bockenstedt is the Harold W. Jockers Professor of Medicine, Section of Rheumatology, at Yale School of Medicine in Connecticut - a state that's ground zero for the emergence of Lyme. As a physician- scientist, she has conducted National Institutes of Health- sponsored research on the pathogenesis of Lyme disease in mouse models since 1990 and is known internationally for her studies of the host immune response to bacterial infection. In recent years, she has expanded her program into studies of human immune responses and is currently part of the Human Immunology Project Consortium, an NIH-sponsored endeavor to look at how the human host responds to different types of immune challenges. A goal of the Human Immunology Project Consortium is to create a centralized database at the NIH that allows scientists to share information and resources to accelerate the understanding of diseases.

She says the Lyme disease bacterium doesn't spend much time circulating in the blood: "Lyme Borrelia prefer to reside in connective tissue. This is the reason that direct detection of the bacteria in the blood for diagnostic purposes can be difficult."

Controversy

A 2015 Johns Hopkins study estimated that treating persistent infection of Lyme costs the U.S. health care system up to $1.3 billion per year, thanks to return doctor visits and testing.

The controversy over diagnosis and treatment for "post Lyme disease syndrome" or "chronic Lyme disease" has divided the medical community and frustrated patients into two camps. The CDC does not support the use of the term "chronic Lyme disease" because it is sometimes used to describe symptoms of patients who have no confirmed diagnosis of a Borrelia burgdorferi infection.

At issue between the Infection Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS) is whether longer, repeated antibiotic treatments are beneficial for persistent symptoms and whether other alternative therapies should be used to treat Lyme-like symptoms. Infectious disease physicians adhere to science- based protocols for treating the disease, while ILADS' "Lyme literate" doctors may offer repeat, lengthy courses of antibiotics, integrative medicine and alternative therapies, which can be costly and may not be covered by health insurance.

There is some evidence that the use of antibiotics may alter the immune system, Dr. Bockenstedt says.

"Emerging scientific studies have shown that the microbes living in and on you play important roles in shaping immune responses and may even contribute to health issues, including obesity, diabetes, cardiovascular disease, cancer, autoimmune disorders, autism and certain neurologic disorders. Antibiotics, while important for treating bacterial infections, can disrupt those microbial communities. Use of broad-spectrum antibiotics or long courses of antibiotics to eradicate one type of bacteria may have adverse consequences. In some cases, we may be doing more harm by exacerbating existing diseases or allowing other health conditions to emerge."

Moving Forward

President Barack Obama signed into law the 21st Century Cures Act on Dec. 13, 2016, to accelerate medical advances for patients who need them quickly. The Cures Act provides for a Tick-Borne Disease Working Group under the office of the Secretary for Health and Human Services that includes federal health officials, researchers, Lyme patients, doctors and advocacy groups.

"I'm in favor of that kind of partnership," says Dr. Bockenstedt. "I think we need a variety of voices at the table. To effectively care for patients, you need to partner with them to understand what they are experiencing, what matters most to them, what treatment options are available and what their preferences are for treatment. A diversity of perspectives will only add to our understanding of diseases and approaches to caring for patients. Patients in turn have the opportunity to participate in and see how recommendations and decisions are made. It's not in a vacuum; we try to do it according to best evidence."

In its first report to Congress in November, the Working Group notes that "increased federal funding, prioritization and leadership are needed to reverse the alarming trends associated with tick-borne diseases. Despite several decades of research, prevention and educational activities, federal funding for tick-borne diseases is less per new surveillance case than that of other diseases."

In 2017, the CDC's Division of Vector-Borne Diseases Centers began coordinating a strategy for combating vector-borne diseases (including diseases transmitted by mosquitoes and other pests as well as ticks) by establishing five Centers for Excellence in Vector-Borne Diseases. The University of Florida is the center for the Southeastern region. The goals for the regional centers include building collaboration between academia and public health organizations for surveillance, prevention and response; training public health entomologists; and conducting research.

And, finally, it seems that Lyme patients have been heard. After a public comment period, the IDSA is joining with the American Academy of Neurology and the American College of Rheumatology to develop new guidelines for the diagnosis and treatment of Lyme disease with input from other medical and scientific organizations whose members care for patients with Lyme. The new guidelines will be released this year.

Dr. Clark would like to see the development of a topical, over-the-counter, prophylactic treatment for tick bites to prevent Lyme and other tick-borne infections.

"If there was a proven effective topical treatment that people could use for all tick bites, we could prevent many infections, minimize the need for expensive laboratory tests, reduce the need to treat with antibiotics and maybe eliminate the need for an expensive vaccine." O