Source: Lake Geneva Regional News

Local woman helps coordinate Lyme protest

by Steve Targo

May 09, 2013

“Lyme disease is real; chronic Lyme is real, and doctors are turning us away,” Lisa Hilton, of Lake Geneva, said in an email.

For eight years, Hilton has been a Lyme disease activist. Her efforts to make people aware of the disease and change how it is diagnosed brought her to the attention of two people organizing the Worldwide Lyme Disease Awareness Protest slated for Friday and Saturday, May 10 and 11.

The protest is set to occur in more than 30 countries and 20 states in the U.S. There will be protests in Chicago and Green Bay.

The cause is near and dear to Hilton, not only because she suffers from Lyme disease, but she had to undergo numerous doctor visits and incorrect diagnoses.

In a May 2009 article about her involvement in The Trish Project: Ribbons Across America, Hilton explained her symptoms — she would get lost while driving familiar routes, experience numbness in her limbs, and become incredibly fatigued. Her symptoms mirrored those of other diseases.

“Being that it took over 15 years to get diagnoses myself, I will forever be sick, more than likely,” she said. “I want to prevent this from happening to others, so I started some online support groups and some physical support groups.”

Hilton said she has been involved in several Lyme awareness events and fundraisers and has blogs and websites devoted to the cause, including That’s how she became connected to those organizing the protest.

“Two of my friends — Joan Nielson from Denmark and Karen Smith from Australia — both on the same day tagged me in a post, asking me if I would want to be the coordinator for the United States,” Hilton said. “They knew I had already done another protest two years ago for Lyme Disease, in Boston, to get the ISDA to change the treatment guidelines. They introduced me to Charlotte Bjornstrom, from Sweden, who put together the Facebook page to bring all the different countries together.”

The reason for the protest, she said, is to spread awareness of Lyme Disease, “not just the kind you hear about that a couple weeks of antibiotics take care of.”

“We want people to know how important it is get prompt treatment so they don’t end up chronic, as Lyme disease and the other co-infections from ticks disseminate into tissues and cross the blood-brain barrier rather quickly if not treated right away,” Hilton said.

She said protest organizers also want the public and the medical community to know that current Lyme tests are not accurate. Research has proven this, but most doctors still don’t know, Hilton said.

Protest organizers want people to see these people as “patients who are sick and asking for recognition,” she said.

“We are hoping that, now that the world is uniting, 30 countries coming together to all protest on May 10 and 11, that this will show that Lyme disease is an epidemic way worse than swine flu,” Hilton said. She also provided a map of the eastern U.S. which shows the human risk for Lyme disease. Wisconsin is one of the few states shown almost entirely to be within high risk.