There’s no doubt the incidence of Lyme disease in Maine is on the rise. In 2013, more than 1,300 cases were reported to the state, and experts say the number of people affected by the disease is often underreported by as much as 10 percent.
While most cases of Lyme disease are reported from May through August, deer ticks, which carry the infection, only become dormant when the temperature is consistently below 40 degrees. In Maine, the deer hunting season doesn’t end until Nov. 29, which means people need to remain vigilant in terms of checking themselves and their pets for ticks.
And, while the national Centers for Disease Control and Prevention is reporting skyrocketing rates of Lyme in the United States, with as many as 300,000 new cases annually, the funding for research, public education and treatment of Lyme, and many other infectious diseases, has dried up.
Dr. Peter Rand, the senior investigator at the Vector-borne Disease Laboratory in Scarborough, who originally established the Maine Lyme Disease Research Lab 26 years ago, called the reduction in the federal support of research “appalling,” and said, “in the case of vector-borne disease research, prevention and education, a major infusion (of cash) is needed.”
He said that’s particularly true because his lab is now tracking two new pathogens transmitted by deer ticks – a virus that can cause devastating encephalitis and a bacterium similar to Lyme that causes a relapsing fever. In fact, the new tick-borne encephalitis virus led to the death of a highly respected artist in the Midcoast just last year, Rand said.
In addition to tick-borne illnesses, Rand’s lab is also tracking mosquitoes to monitor the distribution of Eastern Equine Encephalitis virus, or EEE, and West Nile virus in Maine. He said in 2009, “a completely unexpected outbreak of EEE killed 15 horses in central and southern Maine.”
The mortality rate for humans hospitalized with EEE, which is untreatable, is 35 percent, according to Rand. That’s why he said, “control strategies for (all of) these diseases must be based on knowledge of how ecological relationships influence the establishment and maintenance of the vectors that transmit (these) pathogens,” which requires adequate funding.
To help prevent the spread of Lyme disease, Rand’s lab is involved in a study involving deer control on islands as a method to lower the risk of tick-borne diseases, while another study he’s working on examines the effectiveness of removing especially favorable tick habitat in reducing the abundance of deer ticks.
Rand is also working in cooperation with the University of Maine’s Climate Change Institute, providing data on the geographic spread of the deer tick, which is used in models to predict its advance as temperatures rise. Rand’s lab also has a website (www.mmcri.org/lyme) that helps landowners select tick control measures.
If caught early, or in its primary stage, Lyme disease is relatively easy to treat, and while patients may feel bad, with flu-like symptoms, including fever, headache, fatigue and body aches, a 21-day course of antibiotics can usually knock the disease out.
That’s what happened to Ann Morrill of South Portland, who was diagnosed with Lyme about 10 years ago at the age of 55. As a nurse practitioner, Morrill said she knew at once that the bull’s eye rash on her back indicated the likelihood that she had contracted Lyme.
She was tested and her blood work indicated the presence of the Lyme bacteria. So Morrill was put on antibiotics and has had no further symptoms. She already was aware of the risk of contracting Lyme, but Morrill said since her diagnosis she’s been extra careful about doing a full body check for ticks when she’s been outside.
She said the problem many Lyme patients run into is that they either never got the distinctive rash or it was in a place they could not see and for those with a late-stage diagnosis of Lyme, their treatment is not so straightforward. A secondary or even tertiary Lyme infection can lead to memory or other cognitive problems, as well as Lyme-specific arthritis and even heart problems.
That’s why The Mayday Project, a national Lyme patient advocacy group, made it a point to protest last month outside the medical conference of the Infectious Diseases Society of America, which was held in Philadelphia.
According to protest co-organizer Josh Cutler, who also helped found The Mayday Project, a key concern of his group is what it sees as a “refusal of (the Infectious Diseases Society) and (the Centers for Disease Control and Prevention) to acknowledge the epidemic of chronic Lyme disease and the serious threat it poses to public health.”
According to its website, the Infectious Diseases Society consists of physicians, scientists and other health care professionals whose purpose is “to improve the health of individuals, communities and society by promoting excellence in patient care, education, research, public health and prevention relating to infectious diseases.”
In a press release announcing last month’s protest, Cutler said he’s been fighting late-stage neurological Lyme disease for nearly a decade. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.
“We are uniting to demand that (the Infectious Diseases Society) stop its misrepresentation of science and update its guidelines for Lyme,” the press release said.
Another “vital issue that affects all Lyme patients,” according to The Mayday Project, “is insufficient federal funding for research, awareness and prevention. (In) 2013, the (National Institute of Health) funding for Lyme was at $20 million, (which) is barely 1 percent of the $1.8 billion of (nationwide) funding for emerging infectious diseases, despite the number of new cases of Lyme annually being many times greater than any other disease in that category.”
In his press release, Cutler said, “This epidemic is quickly spiraling out of control, and there’s got to be an awakening. The (Infectious Diseases Society) Lyme guidelines are outdated, do not reflect current research and are harming patients who are unable to receive proper care.”
As evidence of this point, The Mayday Project cites a recently published study by John Aucott of Johns Hopkins University, which shows that more than 30 percent of patients with early diagnosed and early treated cases of Lyme disease continue to have ongoing illness, and 11 percent of that number continue to have severe, debilitating symptoms.
Rand, who lives in Cape Elizabeth and graduated from Harvard Medical School, said that “when you multiply the likely (number of people) who contracted Lyme disease in Maine last year by the cost of the doctor’s visit, plus the antibiotics, plus the week or so, occasionally more, of feeling absolutely awful, the combined costs of Lyme disease, and now (other tick-borne diseases), are incalculable.”
Rand said it’s so important for labs like his to have adequate funding for research.
However, he said, “(Centers for Disease Control and Prevention and National Institute of Health) funding for the type of work we do has essentially disappeared. Only 8 percent of (National Institute of Health) applications are approved currently, (which is why) we have been hanging on by our fingernails.”
Tips for preventing Lyme disease
Follow these tips when outdoors to help prevent getting Lyme disease:
• Wear light-colored clothing with a tight weave to spot ticks more easily;
• Wear enclosed shoes, long pants and a long-sleeved shirt. Tuck pant legs into socks or boots and shirt into pants;
• Check clothes and any exposed skin frequently for ticks while outdoors and check again once indoors;
• Consider using an insect repellent;
• Stay on cleared, well-traveled trails and avoid contact with vegetation;
• Avoid sitting directly on the ground or on stone walls; and
• Keep long hair tied back, especially when gardening.
A CLOSER LOOK
For those suffering from late-stage or tertiary Lyme disease, information and support can be found at The Mayday Project, a Lyme patient advocacy group. Go online to www.themaydayproject.org or find The Mayday Project on Facebook.
Also, anyone who would like to donate to the work being done in Scarborough by the Maine Lyme Disease Research Lab, should contact Dr. Peter Rand at 396-8190 or firstname.lastname@example.org.