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Lyme Disease: A Growing Epidemic, That’s Hard To Diagnose

June 1, 2014

in Archive,News

(This story was first published in the March 15, 2014 edition of the Vermont Standard.)

By Katy Savage, Standard Staff

Dr. Rex Carr has already received six calls about tick bites so far this year. He said at the moment it’s shaping up to be the worst year ever for ticks and Lyme disease.

The disease, which is transmitted by infected ticks can cause joint pain and complications with the heart and nervous system, is a growing epidemic in the state, with 674 confirmed cases last year. But Carr is “100 percent positive it goes undertreated.”

“Doctors are afraid of being accused of making a mistake, of treating somebody wrong,” said Carr, who has a practice in Hanover, New Hampshire.

Vermont had 76 incidents per 100,000 residents in 2011, according to the Center for Disease Control. The state ranked just behind Delaware, which led the nation with more than 84 incidences of the disease. Windsor County had 135 confirmed cases, the second most out of any county in the state in 2013, according to the Vermont Department of Health.

No Simple Answer For Rise In Disease

Lyme disease was first recognized in 1975 in Lyme, Connecticut when researches started investigating why a large number of children had arthritis. Since then, it’s come further north. The number of cases in Vermont has leapt from 2005 when there were 105 cases in the state, according to the Vermont Department of Health.

Screen shot 2014-05-30 at 11.27.39 AMSo why the increase?

“We wish we had a simple answer,” said Alan Geise, a biology professor at Lyndon State College.

It’s believed the abandonment of agriculture, reforestation and changes in population in turkey and white tail deer have contributed to the increase. One of the most important factors, though, is climate change, Geise said.

Geise is in the midst of a research project to see if the number of ticks in a particular area is correlated to the number of ticks that carry pathogens for Lyme disease. He has set up 12 long-term monitoring sites across the state. Every spring and every fall, Geise drags a white, square one-meter cloth over the tick areas and collects the ticks that latch on.

“We would expect that in low densities, the pathogen is at very low prevalence,” he said.

The real critical factor will be how hot and dry the summer is.

“They’re very susceptible to drying out,” Geise said.

Residents Struggle With Lyme’s Symptoms

Paula Eckler was so sick 20 years ago that she couldn’t get off the couch. She had chronic fatigue, migraines and joint pain. She slept the entire day and felt “like I was drugged,” she said. When she tried to walk, her feet ached so much that she felt like she was walking over a pile of rocks, with no explanation. Eckler, who is from Plymouth, never noticed a welt or any redness on her skin (signs that she had been bitten).

The majority of cases in the state have occurred in July and August. Symptoms can be moderate, like the rashes Deanna Jones’ son Cooper, 10, of Pomfret, developed last year on his elbow and his side, or more severe, causing short term memory loss like Bernadette Rose, who lives near Montpelier, experienced.

A large issue, says Rose, who co-moderates Vermont Lyme Support Network, is the belief by medical professionals that chronic Lyme disease doesn’t exist or the effects aren’t severe. The network group is made up of about 200 people who either have Lyme or know somebody who does. The group was started by Susan Chinnock, whose friend Bill killed himself after he didn’t get the treatment he needed for Lyme.

The Trouble With Diagnosing Lyme

Missy Cunningham, an outdoor enthusiast of Woodstock, who enjoys walks in the woods and her gardens, had joint pain in her feet and ankles about 24 yeas ago.

All of her Lyme disease tests came back negative, but once she got medication for the disease, she almost immediately started to improve. Eckler checks herself from head to toe for ticks every time she goes outside. Since she contracted the disease, her dog has died of Lyme and her miniature horse has also had to be euthanized. Eckler doesn’t have migraines anymore, but she does have polymyalgia (inflamed muscle issue), which she says her doctor thinks may or may not be an after-effect of Lyme. Eckler wasn’t diagnosed with Lyme disease until 1994, several years after she saw a tick bite on her in Cape Cod when she was 17. “Lyme disease is a very difficult thing that a lot of people don’t understand and I think general practitioners don’t,” Eckler said.

Could Lawmakers, Docs Help Solve Lyme Disease?

Carr has been treating Lyme disease for 30 years but he didn’t know he was treating it until 14 years ago, after one of his patients had two Lyme tests and three different psychological evaluations, all with negative results. His patient slowly got better with Lyme antibiotics.

“If primary doctors would simply have a low threshold for patients who could have Lyme… it would help so many other people,” Carr said.

The Vermont Lyme Support Network also worked on a bill that recently passed the house and the senate, which will make it easier for patients to get treatment for Lyme disease. The bill makes it so the Office of Professional Regulation can’t pursue disciplinary action against medical personnel when a patient is diagnosed with Lyme.

“Even though we have an epidemic… those people have never put any effort in until we started our bill,” Rose said.

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{ 1 comment… read it below or add one }

D. Owen June 4, 2014 at 5:10 pm

My daughter has had Lyme Disease for 10 years although was only officially diagnosed with it last year, although she had a classic case and had the rash, which was originally diagnosed as a spider bite with weird reactions to it. She can not get treatment in Canada. We are now wondering if our younger dog has it. At 5 months old, she was very active and playful. We went to the U.K. for a month and when we returned we noticed that she was no longer active or very playful with her mother. She slept a lot and seemed to be very tired. The vet did not find anything wrong with her. After that, we found that about once a year she would head to her bed and stay there all day, with a stuffed toy, only leaving to relieve herself, or eat. The vet thought that it was her nature, but my daughter insisted that she be checked and it was found that she had very high white blood cell count. After she received strong antibiotics, she became a puppy again and played with her mother. The following year, she again took to her bed and this time, she tested for high red blood cell count, throwing off immature red cells. Again, after 3 months of doxicycline, she is fine , although has slowed down a bit now that she is off the antibiotics. We also had her tested for lyme, but as she has had this problem for 3 1/2 years and has had lots of antibiotic. She would not be making antibodies and the test is not very reliable, so nothing showed up. She doesn’t seem lame, but does lick her front paws, sometimes the left and sometimes the right. Neither ourselves or the vet could see anything wrong. She does not have the stamina that her 9 year old mother has and comes in to rest a lot. She tests fine physically. She only gets about one cup of kibble a day, a biscuit and a bed-time treat, yet is overweight. She seems to us to have Chronic lyme Disease, as my daughter has. Have you heard of other dogs who present this way?

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