May 6, 2016 at 1:50 p.m.
Be your own advocate
Waite-Kane Foundation supports the uphill battle of Lyme disease awareness, education
Be your own advocate
By Michael Strasburg-
Similar things have happened in human history, of course - entire civilizations were decimated by waves of unfamiliar bacteria in the wake of new geographic discoveries. All of this serves to teach us one thing: don't underestimate the world's humblest life forms, a group that includes bacteria, viruses, fungi and - especially in the Northwoods - parasites.
Arbor Vitae couple Jeff and Jillayne Waite work year-round to make sure Northwoods residents and visitors don't underestimate parasites, specifically ticks. The Waites, along with Eric and Zachary Kane, are the coordinators of the Waite-Kane Foundation, an organization founded to support Lyme disease awareness and education.
"This is a lovely place to live, the best in the world," Jeff Waite said. "Our whole emphasis on the approach is how do we cohabitate with ticks without fear? We try to focus on what people need to do to be safe, to not get Lyme disease - but if they get Lyme disease, how to become their own advocate to get treated properly.
"As it turns out, if you detect it early and treat it hard you can lick Lyme disease relatively easily. It's the people who don't know they have Lyme disease and test negatively when they really do have Lyme disease that suffer."
And, unfortunately, the Waites know a thing or two about suffering. Their daughter, Jenn, lived with the disease for 13 years until she died last July.
The first 30 months of Jenn's illness went undiagnosed.
A headache that won't go away
In 2003, when Jenn was 30 years old, she contracted Lyme disease while on a camping trip in Missouri. After a few weeks of terrible headaches, Jenn visited the doctor, who thought she had pinched a nerve from sleeping on the ground. Jenn thought it could be Lyme disease since she had pulled two small ticks off her body. The doctor disagreed and she listened.
Thirty months later, after seeing 10 doctors - one of whom told her she was making it all up for attention and questioned if she had a happy marriage - a new doctor said she might have Lyme disease.
By the time Jenn was diagnosed, she had chronic late-stage Lyme disease and what appeared to be permanent nerve damage.
"Jenn got it neurologically so it effected the coating on her nerves," Jillayne said.
"Her head was always on fire ... the bacteria had gone through her blood-brain barrier, which bacteria don't always do, but when they get there they do some serious damage," Jeff said. "The damage they did in her brain was to eat the coating on the nerves, so the signals being sent out of her brain were constantly on fire."
Jenn went through countless treatments, but nothing seemed to help, at least not for long. She had cutting-edge nerve stimulators implanted to help reduce the nerve pain, but the pain just kept moving to separate parts of her body after the implants.
Along with Lyme disease, Jenn had contracted a number of associated diseases that deer ticks can carry.
In July 2015, at the age of 43, she passed away.
The Waite-Kane Foundation
In the years preceding her death, Jenn began dedicating much of her life to Lyme disease awareness.
"In 2007, Jenn came to us and said I have an idea," Jillayne said. "She said what if, since we've learned so much about this disease, what if the three of us approach the schools and ask to teach the kids? We'll give that knowledge to the kids and they'll grow up with it rather than grow up and be ignorant."
For five years, Jenn and Jeff went to Lac du Flambeau, MHLT and AV-W elementary schools to teach a special activity-based Lyme disease curriculum.
"One year they had the kids create a rap song and get up in front of the class and perform it," Jillayne said.
The Lyme disease awareness education consisted of two 90-minute sessions across two school days.
"It was really a lot of education," Jeff said.
Jeff and Jillayne now plan on approaching Lakeland Union High School about including Lyme-related education in their curriculum. The Waites see the high school as an easier way to reach all the Lakeland area students in a more focused session, instead of separate trips to each grade school when the students are younger.
Ideally, the Waites say they'd like to spend a couple hours educating teachers so that, in turn, they can educate the kids. The Waites have a few ideas for how Lyme disease awareness could be introduced into the curriculum.
"I think there are a couple ways to approach it; one is to do it in health class," Jeff said. "The kids are required to take health one year ... they could do what we've always done, which is prevention: how to remove a tick, tick tips - the real basics."
The Waites also said there is potential for additional study in other fields, such as biology.
"You could look into the sciences ... write a report about ticks, study ticks," Jillayne said. "When we step back and let the kids do stuff they always amaze us. They think so far beyond what we're thinking, their imaginations are wonderful."
Jeff and Jillayne have already given four tick talks this year to community groups and organizations, reaching more than 200 people. Recently, Jeff gave a presentation to all public employees who work on state land.
"Whoever has work to do on state lands is required to go through a class every year on safety," Jeff said. "The primary emphasis is on how you are safe working in these environments. The lady who runs those in this area called me and asked me to participate, she knew I did tick talks and wanted something on Lyme disease for all of these workers."
Jeff talked to workers for three consecutive days, in groups of 50 to 60 people at a time. He was able to share information with up to 180 people through the state safety course.
"Almost everybody knows somebody who had Lyme disease, it's that prevalent," Jeff said. "Most people don't take it seriously enough until they or someone close to them has had it, so this is kind of an eye-opener to let people know this can happen to you."
The Waites often share Jenn's story as a way to let individuals know how serious the repercussions of undiagnosed Lyme disease can be.
"Jenn's wish was to make sure that no one fell into that trap," Jeff said. "So that's what we carry on, Jenn's wish, to make sure anyone that we can encounter we help them not fall into that trap."
Improving medical standards
In addition to raising public awareness for Lyme disease, the Waite-Kane Foundation works tirelessly to make sure medical professionals are better informed about the disease, particularly in such a Lyme-prevalent area like northern Wisconsin.
Lyme disease was first diagnosed as a separate condition in 1975 in Old Lyme, Conn., where it was originally mistaken for juvenile rheumatoid arthritis. Considering the recent discovery, research is still developing.
"It's a trap, the science is not there," Jeff said. "There's a lot of research going on but the doctors don't have a test they can rely on."
As it stands, there are two tests that medical professionals currently use to test for Lyme disease: the ELISA test and the western blot test.
The current Lyme disease detection tests do not look for the bacteria, simply because there is not yet a test that can detect the bacteria. Instead, the tests search for antibodies produced by a patient's body that fight the bacteria.
"There are many, many deficiencies in that approach that cause the test to be very ineffective," Jeff said.
The Waites said in a study conducted to determine the effectiveness of the current tests, doctors tested a pool of people who they were certain had Lyme disease, due to the distinct bullseye rash being present, with the ELISA and western blot tests.
"Somewhere between 30 and 40 percent of the people tested positive for Lyme disease with those tests, which told them and the world that efficacy of the test is very poor," Jeff said. "The way I phrase it is that you might as well flip a coin to determine whether or not you have Lyme disease."
Jillayne said the Centers for Disease Control does not recommend using the tests to diagnose Lyme disease, but instead support the clinical method -conducting observations, asking questions and analyzing the history of a patient's symptoms.
"The crux of the issue is that there isn't an test a doctor can use to say you have Lyme disease or you don't have Lyme disease that is 100 percent accurate," Jeff said. "In fact it is very inaccurate. A number of people will get misdiagnosed if all that's used is the test. Patients need to find a doctor who is familiar with how Lyme disease presents itself ... and determine whether or not there's a reasonable probability the patient has Lyme or an associated disease. That's the key."
Even with the classic symptoms present, however, some doctors may not me familiar enough with the disease to make a diagnosis.
"The doctors that we've met through Jenn's health care, every one, 100 percent of them, said 'I did not learn about this in medical school,'" Jillayne said.
The Waites said the only education many doctors receive about Lyme disease is what gets passed down from the Infectious Disease Society of America, which typically only gets sent to infectious disease doctors, not urgent care doctors or general practitioners.
"Most of that comes out in short blurbs," Jeff said. "Doctors don't have a lot of time, so they're as concise as possible."
Each year, the Waites attend the The International Lyme and Associated Diseases Society's (ILADS) annual conference. ILADS researches and treats Lyme patients internationally.
"That group has a separate set of recommendations based on all of the work they've done," Jeff said. "[They say] the diagnosis must be clinical, do not rely upon the ELISA and western blot test to determine whether or not a patient has Lyme disease. You need to take a concise history of the patients symptoms and from that make a determination as to whether or not Lyme disease is a probability."
Every year, the Waites write letters to doctors, requesting they attend the annual conference, which offers a one-day training on Lyme disease. Several local doctors have gone.
"We printed off the material about that from their website and wrote 20 letters to doctors last August after Jenn died," Jillayne said. "We invited those 20 doctors to get educated. Some of those were doctors who told Jenn she was in a bad marriage, she was looking for attention - or it was 'Jennifer's disease,' that it was all in her head."
The Waites plan on sending letters out to local doctors again this year, as Wisconsin is the number one state in the upper Midwest and number 10 state in the nation for Lyme disease. Every state but Hawaii has reported cases of Lyme disease.
"The whole purpose of the foundation, the whole purpose of Jenn's request five years ago, was to educate people," Jillayne said. "I will say that doctors who were here 10 years ago treating our daughter, those same doctors today, we believe for the most part, are treating new patients very differently - Jenn's illness and the work of the three of us has made a difference. I think that's key."
For more information on Lyme disease, Waite-Kane Foundation, or to donate to the foundation or book a Tick Talk, visit www.Waite-KaneFoundation.org or email [email protected].
Michael Strasburg may be reached at [email protected].
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