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Lyme Wars: Tiny tick triggering big debate in Maine over diagnosis, treatment
by Jon Chrisos, WGME
Tuesday, July 17th 2018
Federal statistics show Maine is the worst state in the country for cases of Lyme disease and July is peak season as ticks are more active. (WGME)
STATEWIDE (WGME) -- As cases of Lyme disease are soaring in Maine and setting new records every year, the I-Team discovers a medical war over how to diagnose and treat the disease.
Federal statistics show Maine is the worst state in the country for cases of Lyme disease and July is peak season as ticks are more active.
The little tick that carries the disease is triggering a big debate that could up-end established medical guidelines.
Even on a sunny July day, Elizabeth Nelson of Bath doesn't like to spend much time outside.
Nelson is 22-years-old and walks with a cane.
After years of being sick, she was finally tested for Lyme disease when she was 14.
That blood test came back positive.
She says she still deals with symptoms including brain fog, aches, pains, stomach and heart issues.
"I really want to remember things and function like other people," Elizabeth said.
The disease is caused by bacteria spread by ticks.
Elizabeth doesn't remember being bitten by a tick and neither does her mother Kerry who also has Lyme disease.
"Some days are a lot better than others," Kerry said.
Every year in the United States, there are about 30,000 cases of Lyme disease reported to the Centers for Disease Control.
Last year, Maine had about 1,800 of those cases.
But the CDC estimates the actual number of cases could be 10 times that or about 300,000 cases a year; 95% of confirmed cases come from just 14 states, including Maine.
"I think we're stuck with the ticks, and we have to live with the fact that ticks are part of our environment," said Dr. Siiri Bennet, epidemiologist, Maine CDC.
Bennett said the ticks are also causing trouble over treatment.
"I know there are experts on both sides of the debate. There is a lot of disagreement," she said.
On one side is the Infectious Diseases Society of America (IDSA) and its 11,000 members.
"The treatment for Lyme disease I believe is very straight forward for almost all patients," said Dr. Paul Auwaerter, president, IDSA.
The IDSA says cases of Lyme disease are generally easy to diagnose and treat.
The CDC bases its recommendations on IDSA guidelines and says most people recover rapidly and completely after 2-4 weeks of antibiotics.
Both the IDSA and CDC acknowledge in a small percentage of cases, treated patients may have lingering symptoms, calling it "post-treatment Lyme disease syndrome."
"That's been the source of a lot of study and concern as to what is the cause of -- particularly when those symptoms go on weeks or months," said Dr. Robert smith an infectious disease physician and IDSA member.
On the other side of the debate is the International Lyme and Associated Diseases Society (ILADS) and its 650 members.
They call lingering symptoms chronic Lyme disease and believe patients may need long-term, high dose antibiotics to get better.
"I see chronic Lyme disease every day, multiple times a day in my practice. What we find is with re-treatment those patients get better," said Dr. Jacob Aguiar a naturopathic doctor and ILADS member.
Dr. Aguiar opened up his practice in Scarborough last fall focusing on Lyme disease treatment.
"There are a lot of people suffering. The research isn't great showing lyme is eradicated within 3-4 weeks," Dr. Aguiar said.
In fact a new study shows Lyme bacteria can survive a 28-day course of antibiotic treatment.
But the IDSA points to other studies showing more antibiotics aren't the answer.
"Additional antibiotics do little to improve fatigue and pain," Dr. Auwaerter said.
More than two dozen Lyme disease patients are now suing the IDSA and eight health insurance companies alleging the guidelines are about money.
The federal lawsuit alleges that "in the 1990's the insurance defendants decided that treatment of Lyme disease was too expensive."
So, according to the lawsuit, the insurance companies paid IDSA panelists "large fees" to decide "long term antibiotic treatment was not necessary and all Lyme disease patients could be cured in less than a month."
"Since it's on-going litigation, I really can't comment on that at all at this time," Dr. Auwaerter said.
But Dr. Auwaerter said for the first time in more than a decade, the IDSA is working to update its guidelines for treating Lyme disease.
"It has been a slow process but it's because we want to ensure the most accurate information that help doctors treat patients," Auwaerter said.
Patients like Elizabeth and Kerry Nelson say they're now getting better after finding the right doctor -- one who would deviate from the established guidelines.
They both take herbal supplements and Elizabeth is still on antibiotics.
"Ideally I'd like to not take any of it, but it's either that or be flat on my back in bed cause I've tried going off stuff," she said.
The Nelson's ILADS doctor declined our request for an interview.
His practice manager told us he "doesn't do interviews about Lyme disease. As much as he'd like to talk about it there is still too much controversy surrounding the identification and treatment of the disease. He feels it's necessary to protect his patients and his practice."
As part of the 21st Century Cures Act, passed by Congress, a federal working group is now scrutinizing Lyme disease care and policy.
The first report is due in December.
The new IDSA guidelines are also expected to be available for public comment before the end of the year.
At this point everyone seems to agree that the best treatment for Lyme disease is prevention.
Be careful when walking in the woods; avoid grassy areas if you can
Wear long pants and long sleeved shirts treated with permethrin to repel ticks
When you come inside, thoroughly check for ticks; they can be as small as a poppy seed
Kerry and Elizabeth Nelson have also launched the Nelson Family Project, an advocacy effort to spread information and resources across the state. They've distributed thousands of resource cards to doctors and businesses across the state.