Efforts to educate the Public about Lyme disease

Hi my friends,

Below is a great article about how one couple's experience with Lyme disease is being used to educate people in their community about Lyme disease. A piece of legislation has been created to promote awareness of Lyme disease. I think you will enjoy this article!

Be well,

Rick


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By Laura Dolce
ldolce@seacoastonline.com
February 11, 2010 2:00 AM

KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.

Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.
What is Lyme disease?

• Lyme disease is transmitted by the bite of a tick, and the disease is prevalent across the United States and throughout the world. Ticks know no borders and respect no boundaries. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

• Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.

• Fewer than 50 percent of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15 percent in culture-proven infection with the Lyme spirochete.

• Fewer than 50 percent of patients with Lyme disease recall any rash. Although the erythema migrans (EM) or "bull's-eye" rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.

Source: The International Lyme and Associated Diseases Society

Tips for preventing tick bites, courtesy of Joanne and Barry Tibbetts:

• Wear light clothing when outdoors, which will make it easier to spot a tick.

• Don't assume a trip to the mailbox is safe - ticks can be found almost anywhere.

• Be vigilant when working with purchased mulch, or when doing other yard work.

• Don't assume since the tick hasn't been attached long that you can't get Lyme. You can.

• Protect yourself with DEET-based sprays and your pets with products such as Frontline.

• Keep your yard well mowed to avoid high grasses where ticks like to hide.

• Educate yourself about Lyme disease and its symptoms.

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But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.

Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.

"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."

As time went by, though, Tibbetts started to experience what she described as migrating arthritis and joint pain. Then, 10 years ago, after the family moved to Scarborough, things began to change.

"I had tremendous back pain," she said.

And worse yet was the fatigue.

"I was sleeping most of the day," she said.

As the mother to three active daughters, Tibbetts tried to find ways to work around the exhaustion. If she had to drive the girls somewhere, she would bring a pillow and a blanket and nap in the car once she got there. But as much as she tried to work around her health problems, it was clear she was struggling.

"Just being out in the garden was a big deal," her husband said. "We would try to walk a third of the way around the house and I would have to almost carry her back."

Tibbetts could barely make it to the end of the driveway without collapsing. For nine months, her husband said, she wasn't strong enough to walk to the end of their street. And the problems weren't only physical.

"I had a lot of difficulty with word retrieval," she said. "Cognitive problems."

Her doctor told her she was pre-menopausal, she said, that these things were natural as a woman got older. But Tibbetts knew better. A 2006 Lyme test showed some evidence of the tick-borne disease, but was still considered negative by Centers for Disease Control and Prevention standards. Still, it was enough to give Tibbetts some idea of what she was battling.

The Tibbetts searched for a Lyme specialist and eventually found one who was a clinical assistant research professor at Yale and a board certified neurologist. It cost them $900 for a two-hour visit and testing. But at the end of the visit, Tibbetts' tests were sent to Stony Brook University in New York and the results gave her the answer she was looking for: Lyme disease.

Today, Tibbetts is back to being able to take hikes and lead an active life, though vestiges of the disease remain. To reach this point, though, the family has spent tens of thousands of dollars of their own money to pay for extended antibiotic therapy, additional testing and homeopathic herbal remedies that Tibbetts has administered by a practitioner here in Maine.

They've educated themselves so thoroughly on the disease that when Barry Tibbetts was bitten by a tick in 2006 and began to exhibit symptoms over the next few years — despite a negative Lyme test — they knew they had to look beyond that initial test for an answer.

Barry Tibbetts had a Western blot test, which measures your body's response to certain antigens in the bloodstream. While the CDC mandates that a patient has to have five out of six particular bands on the test for a diagnosis of Lyme, his doctor saw enough in the results to conclude that he, too, had the disease.

The Tibbetts' story is all too familiar to Kennebunk's Linda Pearson. She, too, had a tick bite 17 years ago on Martha's Vineyard and was vigilant in watching for a bulls-eye rash that never came. Months later she was talking to a woman at a party about the extreme pain in her knees when the woman asked, "Have you ever been checked for Lyme?"

Pearson was, and after a positive test, went on antibiotics for a month. But once she stopped the medicine, her symptoms came back. She would repeat this pattern of treatment followed by a re-emergence of symptoms over the next several years, through a move to Maine and raising her sons. The pain — in her neck, in her legs — was bad, but she said the "brain fog" she experienced was even worse. And worse yet, she saw the same symptoms in her kids.

Today, Pearson said the family is working with an osteopath and taking Chinese herbal remedies and focusing heavily on their nutrition.

"We're doing a lot of immune-building things," she said, adding that while antibiotics fight the bacteria, it often goes dormant, only to strike again a few months later. Building the immune system, she said, gives you one more layer of protection of the disease.

Joanne Tibbetts said she, too, has discovered the same thing. She said everything from probiotics, thyroid medication and hormone therapy can be used to treat Lyme — if it's properly diagnosed.

Between the recurring nature of long-term Lyme and its ability to mimic other illnesses, from Chronic Fatigue Syndrome to fibromyalgia, it can be a hard disease to diagnose and treat.

That's why both Tibbetts have spent time in Augusta recently, speaking out on behalf of Legg's bill. Legg himself said he feels the bill, which will name May as Lyme disease awareness month in Maine and change some local protocols for reporting and detection, will be a good first step in bringing more Lyme awareness to Maine.

"It's a big step forward," he said, "but it doesn't settle the issue of how to treat long-term Lyme."

The scientific community is still divided on that, Barry Tibbetts said, both inside Maine and around the country. But while that debate rages on, the Tibbetts said they at least feel like they're doing their part to educate others that Lyme has come to Maine to stay. It's a lesson they had to learn the hard way.

"This is not the world we lived in 15 years ago," Joanne Tibbetts said. "Don't assume you're safe."

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