VErmont is currently the second largest country in the country for Lyme disease, although it is number one. The CDC considers that the disease is endemic in the state.
Yet, despite its prevalence, some people in Vermont believe that doctors and public health officials in the state do not correctly diagnose Lyme disease, treat it, or treat it.
In 2017, there were 1,093 cases, according to the Vermont Department of Health. The 2018 data have not been finalized yet, but according to Natalie Kwit, state public health veterinarian, there were probably about 500 to 600 cases, which she described as a normal one-year variance to the other. But several scientists who study ticks say that populations already seem very high for 2019.
Other tick-borne diseases, such as babesiosis and anaplasmosis, are also on the rise in Vermont, said Kwit. Since Vermont is north of the region affected by tick-borne diseases, the lower half of the state is the hardest hit. According to Kwit, Bennington County is one where the incidence of Lyme disease is highest, followed by Rutland, Windsor, Windham, Addison and Grand Isle Counties.
Kwit said it was hard to say how bad this year would be, but he pointed out that, with nymph-shaped ticks right now, when Lyme disease rates are the highest, residents of the Vermont should pay special attention in June and July.
Bill Landesman, who studies ticks at Green Mountain College, said Vermont was a kind of ideal storm for Lyme rates. Not only are the black-legged ticks that populate the region are the ideal hosts for Borrelia burgdorferi, the bacteria that causes Lyme disease, but the state also has an abundant supply of white-tailed deer and deer. deer mice, two main hosts of ticks.
Landesman stated that the infection rate for nymphs, which are currently in season, is around 20-30%, while for adults, who are in season later in the summer, it is twice as high, at 40-60%. He stated that on some of the sites he studies, there is a one in four chance that you find a tick on a given square meter, which means that if you go hiking in the woods, you are at high risk of Lyme .
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But there is a group of Vermonters who feel that the magnitude of the problem of Lyme disease in Vermont is not due solely to Vermont ticks. They wonder if the medical community could do more to respond to the endemic.
Health professionals recognize that Lyme disease can be frustrating to identify, but encourage patience and say that a wrong diagnosis carries risks.
Rapid diagnosis in prevention
Rebecca Zelis' son did not suffer from the rash or joint pain that doctors tend to look for to identify Lyme disease. But his symptoms showed the behavior. By the time he reached kindergarten, Zelis said his symptoms were deeply troubling. "Mom, I just want to die," he told him. "I want to run in front of a car and die."
Zelis heard diagnoses ranging from psychological problems to bad parents. It was only when her son started to experience more classic symptoms, such as headaches and chronic infections, that the doctors finally recognized his condition for Lyme disease.
Since he had remained so long without treatment, he still had a long way to go to recover neurologically. He was home schooled for a while in college because he was too sick to go to school.
When Zelis looked for more information online, she found out a lot about prevention, but not so much about the symptoms, especially the less typical symptoms like those her son had experienced. So, in 2015, she started VTLyme.org – now a non-profit organization – to help other Vermont residents cope with the disease and other tick-borne diseases.
According to Zelis, when the disease is detected early and treated effectively, Lyme disease usually does not cause long-term problems. But often, this is not the case.
"All Vermont medical providers do not know how to accurately diagnose and effectively treat tick-borne diseases," said Zelis. "Vermont residents affected by tick-borne complex diseases need more resources, understanding and support."
In 2014, Zelis said that more than half of children with Lyme disease who had been diagnosed with the diagnosis had no rash, but all the medical information that she was seeing were always focused on this symptom. The Center for Disease Control reports that in the country between 70% and 80% of Lyme disease cases are associated with a rash. But Zelis warns that local differences may be forgotten in wider national conversations.
She said that in the past two months, her website had sent her messages informing her of times when it was clear that patients were not receiving accurate information from their doctor. In one case, a woman had written to her about the child of a friend who had been bitten by a tick and told to wait. If the child had not had a rash, they were clear. Another message came from a parent whose son had had a rash after returning from camping, but his doctor had told him that as long as he did not have any other symptoms 39, was not to worry – although less than a year later, the child had almost all the known symptoms of Lyme disease.
"I would say that an accurate and timely diagnosis is a form of prevention," said Zelis, who is preparing a degree in mental health with the goal of helping people affected by Lyme disease. "This prevents people from having a more complex and more serious form of the disease."
Looking for a treatment
A little over a year ago, Monika Reis from Montpellier noticed an immature tick, called a nymph, lodged in her neck. She later saw a rash, but not the typical pudding. Despite everything, she went to the Plainfield Health Center, where a doctor took a photo of the rash and performed blood tests, which gave a negative result for Lyme. But after a week, she sweated so much at night that she checked the ceiling to see if there was a leak.
"I got it full within two weeks. There is no manufacturing of this experience, "said Reis.
She returned to the doctor who decided to treat her as Lyme disease, even though her blood tests were inconclusive.
Reis's experience contrasted with that of friends who, she knew, were in similar situations, but whose doctors did not immediately address the situation in this way.
"We administer antibiotics to children 12 times before the age of 7 for earaches and suddenly, an adult with a strong feeling and a picture of the rash comes in and you do not care for the Lyme disease? "said Reis. "There is a real problem here with the resistance to think that it's Lyme."
In addition to taking doxycycline, the antibiotic typically used to treat Lyme disease, Reis used herbal remedies and acupuncture. But many of his friends with Lyme regularly go out just to see specialists.
Reis pointed out that people who think they have Lyme disease need to be assertive about their treatment.
"Even in my own story, this is true," said Reis. "If someone does not want to treat you, I strongly recommend that you consult another person in a few days, or even a naturopath – a person who will be empathetic to your situation and not have this mindset stuck on it. "
A state law passed in 2014 gave doctors more leeway in treating Lyme disease by allowing them to treat outside the guidelines of the American Society for Infectious Diseases.
But Rachel Nevitt, who has argued for the bill, believes that Vermont's reaction to the disease is seriously outdated.
"The truth is that the providers here have no idea," Nevitt said. "Some start out, but those who are interested are afraid to treat it as it should, because the medical committees will come after them."
Nevitt was probably suffering from the disease for years before being finally diagnosed. In 2009, Nevitt suddenly fell to the ground with excruciating spine pain. She presented as if she had a herniated disc but she did not have a precipitating accident, and an MRI was normal. Today, Nevitt said, people know that means Lyme. But at the time, that was another point in her list of symptoms that she could not explain.
Nevitt became dyslexic, forgetful and lost her spatial awareness. Once, she accused her husband of spending $ 80,000 on a new irrigation system for their farm simply because she could not recognize the irrigation system they had been using for years.
Only when the director of her farm was tested positive for the disease and told Nevitt that she should do it, Nevitt realized, "Oh my God, that's what I have."
But even then, she had trouble getting a diagnosis – or even getting tested. Nevitt found no treatment until she left the state to see a specialist in the Hudson Valley.
"At this point, I really realized that everything that people with Lyme disease say is true," she said. "Something is wrong in the medical community, they just think we're all crazy."
Nevitt said that patients with Lyme disease often had the habit of feeling very bad because of the severity of their symptoms. She said that for many people, it could be something tragic, such as the loss of a child or a divorce. Nevitt said that in her case, it was when her husband, now a lieutenant. Governor David Zuckerman went to the state Senate in 2012, leaving her alone to run her organic farm.
Nevitt said Vermont has been obsolete for 20 years in Lyme research.
"Cite an illness for which they rely on this old research base," said Nevitt. "If you talk to a person with Lyme disease, she'll tell you that the medical community is terribly far behind."
Frustrating for doctors and patients
"When we do not understand the mechanisms of something, it's very frustrating for patients and very frustrating for us."
– Ralph Budd, rheumatologist at UVM Medical Center.
Doctors acknowledge that they do not have all the answers about Lyme disease.
Ralph Budd, a rheumatologist at the UVM medical center specializing in Lyme disease-related arthritis, said people were often convinced that if they had symptoms, they also had an ongoing infection, although it was not often not the case. He added that treating the symptoms tends to be a very effective option once the period of infection has passed.
"When we do not understand the mechanisms of something, it's very frustrating for patients and for us," said Budd. "Medicine has a lot of these – Lyme is not the only one."
Budd is wary of specialized labs responding to Lyme tests. He added that unlike the tests that he uses, which require the development of Lyme antibodies for six weeks to be exact, other labs offer faster tests that, in his view, revealed a higher false-positive rate.
"When patients think they have something and they do not feel well, they shop around and look for something to help," Budd said. "But if the lab gives them false-positive results, it can really hurt the medical community."
Kwit, of the Vermont Department of Health, echoed this sentiment.
"It's important to correctly diagnose Lyme disease when someone is suffering from it. But it's also important to not misdiagnose a person with Lyme disease when the cause is really something else, "she said.
A misdiagnosis of Lyme disease could lead to a long treatment path that will not work and to a disease that will last longer, she said. It encourages the use of validated and evidence-based methods to diagnose the disease.
The Lyme community is currently struggling with a disagreement over the best ways to fight the disease. Some advocates are turning to the guidelines set by the International Society of Lyme Disease and Associated Disease, which they see as more specific ways to test. But these standards are not endorsed by the Centers for Disease Control and are viewed with skepticism by many members of the medical community.
Alexis Chesney, a naturopathic specialist for Lyme disease, said the best way to fight Lyme disease is to prevent it.
She highlighted a number of recommendations to help prevent the spread of the disease, including treating clothes with an anti-tick, showering less than two hours after being outdoors, controlling pets for s & # 39; Ensure that they are not carrying ticks and dry clothes while warm for 10 minutes. as soon as you get inside to make sure that the ticks – which are often as small as poppy seeds – are gone.
"I'd like people to stop being bitten by ticks," Chesney said. "Then we could really solve this tick outbreak."
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