May is recognized by proclamation from the governor of Maine as Lyme Disease Awareness Month, and while many people know something about Lyme disease, there are many other tick-borne diseases carried by ticks here in Maine that we need to protect ourselves against.
Recent data from the state of Maine shows Lyme and other tick-borne diseases on the rise already. To date, these are the confirmed and probable new cases: anaplasmosis, 14; babesia, 5; Borrelia miyamotoi, 1; chikungunya, 2; erlichiosis, 2; Lyme disease, 74; malaria, 2; and spotted relapsing fever, 1.
A recent press release from the U.S. Centers for Disease Control and Prevention stated that “the number of people getting disease transmitted by mosquito, tick, and flea bites has more than tripled in the United States in recent years. Since 2004, at least nine new diseases have been discovered or newly introduced in the U.S.
In a 2016 review of CDC data on top endemic states, in Maine, there were 87.9 confirmed cases of Lyme disease for every 100,000 state residents, the most of any state and more than 11 times the nationwide diagnosis rate of 7.9 cases per 100,000 Americans.
While the disease is widespread and public awareness is increasing, there is much to be learned about Lyme disease. People are often misdiagnosed as symptoms can vary from patient to patient. For example, while many associate a bull’s-eye-shaped rash with the disease, such a rash does not always appear. Even blood tests that check for the presence of antibodies are not always an accurate diagnostic tool. And when diagnosed and treated early, acute cases are often successfully managed with a regimen of antibiotics; however, in some patients, delayed diagnosis and treatment can result in symptoms lingering for months and even years.
Now most of us are familiar with the deer tick, and equate a tick bite to Lyme disease if they get the classic bull’s-eye rash. But did you know that less that 50 percent of all patients who test positive for Lyme disease produce a bull’s-eye rash? Many times they get a rash but it looks nothing like a bull’s-eye, and not all people get a rash.
If that deer tick that bit you transmitted anaplasmosis or babesiosis, a malaria-based tick-borne disease, you won’t be getting a bull’s-eye rash. And the deer tick also carries Powassan virus, which can infect the central nervous system and cause encephalitis (inflammation of the brain) and meningitis (inflammation of the membranes that surround the brain and spinal cord). Symptoms often come on quickly and can include fever, headache, vomiting, weakness, confusion, loss of coordination, speech difficulties, and seizures.
And that is just the deer tick. Other ticks in Maine are known to carry disease as well.
Did you know that ticks can carry more than one infectious bacterium at a time? Did you know that there are over 300 strains of tick-borne bacteria in the U.S. and the test administered in the primar-care doctor’s offices is only testing for one strain? As president of Midcoast Lyme Disease Support & Education, but more importantly as a survivor of late-stage neurological Lyme disease, it is my mission to raise awareness about the fastest-growing vector-borne infectious disease, not only throughout the United States but right here in Maine.
Why? Because we are an endemic state, but more importantly because this is a preventable disease! I was misdiagnosed by over 23 doctors and specialists because they did not understand what they were dealing with, and unreliable and inaccurate testing was not helpful. Because people are dying from a preventable disease, with a little education about prevention products and how to use them, we can reduce the fear factor and enjoy life outdoors as we always have, instead of being afraid of ticks or wondering what we’ve been exposed to as we pick them off ourselves, our children, and our pets.
On Thursday, May 10, along with my fellow co-chair, we are presenting a report to the U.S. Department of Health and Human Services Tick-borne Disease Working Group with what our subcommittee has identified as barriers to patients accessing care services and supports. At the very top? Education. Education for the public, education for the patients, but more importantly, education for the medical providers who are tasked with our health concerns and treatment options.
If 23 doctors and specialists could not figure out what was wrong with me in 2009, and as patients, we are still fighting that same battle in 2018, even with all the new research and acknowledgments of new diseases and strains, something is very wrong, very broken with our medical system. And the role of the working group, with help from the subcommittees, is to identify these gaps and produce a report to Congress with recommendations to repair and remove barriers.
Maine is a state with lots of outdoor activities. Through preventative education, we can continue to safely enjoy those outdoor activities without fear of having a tick encounter. Should we come into contact with a tick, we are armed with information to combat the potential for tick-borne infection to disseminate. Ticks are everywhere and are waiting for a host to come along to feed upon. With the right amount of prevention, it makes it difficult for ticks to survive, and therefore unable to attach and transmit infections. Prevention is about layered security, and a little prevention goes a long way toward your defense against Lyme and other tick-borne diseases that are so very prevalent right here in our community. Education is knowledge and knowledge is power.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, a nonprofit 501(c)(3) organization; the Maine partner of the national Lyme Disease Association; and member of Maine CDC’s Vector-borne Disease Workgroup. She is active in Lyme legislation. Email her at email@example.com or go to mldse.org for more information.)