BRANDON/MONTPELIER — While May is officially Lyme Awareness Month, it might as well be renamed Lyme Awareness Summer 2017.
Or better yet, Tick Awareness — March to November.
That’s because with warmer, shorter winters and higher rainfall amounts, black-legged ticks are multiplying and moving north. Vermont has been experiencing a steady increase in the number of Lyme disease cases and in the last few years earned the dubious distinction of having the highest per capita incidence of Lyme disease in the U.S.
This spring, health officials across the Northeast warned that the 2017 tick season would be the worst in years. Now, health officials are warning the public about ticks and tick-borne illnesses that tend to spike in June and July.
So, where can someone find accurate information about ticks, Lyme disease and other tick-borne illnesses, symptoms and treatment resources? It depends on who you ask.
LOCALLY SOURCED INFO
Rebecca Zelis has been researching the intricacies of Lyme disease symptoms, diagnosis and treatment options since her son, Luke, was three years old. Finally diagnosed with Lyme at age six, Luke, now 14, still has good months and bad months, but is managing. Zelis, along with her husband, Mark, got the rights to www.VTLyme.com and updated and expanded the website aimed at providing accurate, easy-to-access information about Lyme and other tick-borne illnesses, symptoms, studies, and treatment options.
Formerly of Brandon, the Zelis’ will be moving closer to Mill River High School when their children begin school there in the fall.
“Luke had a really bad spring last year,” Zelis said in an interview, “and it brought me to talking about what was available as far as information and support in Vermont, and there was very, very little.”
She started gathering the information that she was relying on, even going so far as to share it with the Vermont Department of Health, suggesting ways in which the state agency could improve the Lyme and Tick Awareness portion of its website.
Zelis has catalogued, downloaded and linked only information on the VTLyme.com site that comes from the Centers for Disease Control, the International Lyme and Associated Diseases Society, and other viable medical sources that have been vetted and verified.
“I’m trying to give facts and inform people,” she said. “I’m not trying to push a special agenda. The goal is for Vermonters to be well-informed and understand that there is still controversy about the diagnosis and treatment of Lyme disease.”
For instance, the Vermont Department of Health and many other state and federal health agencies for several years were emphasizing the “bull’s eye” rash and joint pain that sometimes accompanies Lyme as key symptoms of the disease. Zelis said that in 2014, VDH data showed that less than 50 percent of children diagnosed with Lyme disease have had the rash.
“So why are we emphasizing that?” she asked.
Zelis also said the belief that a single dose of the antibiotic Doxycycline to treat Lyme is a flawed concept based on one study done in 2001.
“It was entirely based on a study that showed the rashes were reduced,” she said. “It was a massively flawed study. The problem is, there was no alternative.”
Another area regarding symptoms and Lyme disease are the psychological manifestations that Zelis said are often misdiagnosed, such as anger, depression and malaise.
Ultimately, Zelis only wants the most accurate information she can find on her website, and has invited physicians, researchers and health officials to examine the information and tell her if something is inaccurate. So far, that has only led to one correction.
“It doesn’t matter who’s right,” she said. “What’s important is that people are suffering. They are ill, they don’t have the proper insurance, they are driving hundreds of miles for treatment … It’s easy to get emotional about this problem, but what people need right now is unbiased information.”
STATE SPREADING THE WORD
Bradley Tompkins is the state epidemiologist and deals with all things disease-related as they pertain to public health. He said his department has increased the grant funding it applies for to combat tick-borne illness in Vermont, and that the state website regarding ticks and Lyme has been updated.
The VDH has also started a new public service campaign to raise awareness about ticks and the diseases they spread.
“The website has been completely revamped,” Tompkins said in a phone interview. “We re-wrote the tick borne illness pages, and started out “Be Tick Smart” and “Protect, Check, Remove and Watch” campaigns. We added “Watch” so people can move quickly when they see symptoms and get treated quickly.”
He added that although Lyme has been the top tick-borne illness related to public health in recent years, cases of Anaplasmosis, another tick-borne illness, have risen dramatically in the last two years.
“Lyme disease used to make up 90 to 95 percent of tick-borne illnesses, but Anaplasmosis has become so much more prevalent. Now, it’s 70 percent Lyme.”
Anaplasmosis is characterized by symptoms such as fever, headache, muscle pain, malaise, chill, nausea/abdominal pain, cough, confusion, and in rare cases, a rash.
Anaplasmosis can be fatal if not treated correctly, even in previously healthy people. Severe clinical presentations may include difficulty breathing, hemorrhage, renal failure or neurological problems.
While Tompkins could not say exactly how much money the VDH has received in grant funding for tick borne illness, he did say that in 2016, the department received 131 percent of all the grants it applied for between 2010 and 2015, combined.
‘We’ve invested a lot of funds in updating and creating education and awareness material,” he said. “We’ve revised our tick booklet, created stickers urging people to be Tick Smart, created shower cards as a visual reminder for people to check their bodies for ticks. We’re also created a new poster about Lyme and tick borne disease to put up is state parks, schools, post offices and doctor’s offices.”
DIFFERENCE OF OPINION
But there is a chasm between Tompkins’ understanding of what his department is doing to combat tick-borne illness and what Zelis says is a shortage of VDH funds and resources, and a refusal by Tompkins to partner with VTLyme.com or provide a link to the site on the VDH website.
In a series of emails to Tompkins over the last 18 months, Zelis repeatedly asked for answers to a series of questions regarding how the VDH approaches Lyme and tick borne illness and how it might improve that approach. Tompkins responded by saying the questions were “unproductive”. When he finally did answer the questions, weeks later, there was very little substance in his responses.
For her part, Zelis insists that the VDH is underfunded and needs more resources to more effectively combat tick borne illness in the state. In her last email to Tompkins on April 26 of this year, offering to meet with him to discuss the needs of Vermonters with Lyme disease, she wrote, “it would be my preference to work with the VDH to educate Vermonters and their health providers about the prevention, diagnosis and treatment of Lyme in Vermont.” She included a commentary she wrote to legislators about the issue.
Later the same day, she received a response from Tompkins.
“The commentary was received. We consider this matter closed,” it said.
But Tompkins’ resistance to working with Zelis may be because it is VDH policy not to partner with private groups or advocacy organizations like VTLyme.com, according to Tompkins in an email to Zelis.
Another issue may be that Zelis is a layperson, not a medical professional. Tompkins said the VDH works with the U.S. Centers for Disease Control and Infectious Disease Society of America and other medical organizations.
“We definitely try to get more information out there from different areas of focus,” he said. “But the health department is an evidence-based organization and supports scientific findings and evidence-based supported IDSA rules on Lyme.”
Tompkins said the VDH investigates every case of Lyme disease reported in the state, something larger states do not have the funds to do.
“I don’t think it’s a question of funding being out of reach,” he said. “Unless there is a drastic change in the future, all our systems are go with what we have now. I feel very good about the work the Department of Health does. I think we’re getting better and we will always get better.”
Tompkins was asked specifically about his communications with Zelis and the role of VTLyme.com.
“I can’t speak about a particular individual,” he said. “But information is one tool in our toolbox in combatting these diseases, so whatever work people can do to amplify these messages, we would be supportive of that.”
As for Zelis, she said she will continue to collect accurate information about the symptoms, diagnosis, and treatment of Lyme to help Vermonters make educated decisions about their illnesses.
“Our medical system is based on diagnosis and treatment,” Zelis said. “We don’t have room to say we don’t know what to do and how to treat it. It’s a challenge to the whole system and mind set. The question is, how do we change the paradigm?”