Whatislyme would like to thank Washington Lyme Activists, Lorraine and Anna Hart for all they are doing to promote Lyme disease awareness!
When asked why they became Lyme disease activists:
Before every difficult test or treatment. “I do it for the next patient coming.”
“We’re humbled by the work everyone puts in, and feel so grateful to be a part of it all.”
In 1998, Anna was invited on a canoeing/camping trip by Native American Elders. They canoed the Wabash, stopping in each town to educate about the river’s pollution, and to ask for museums to return sacred items to the tribes. In camp, Anna noticed two bites, with rashes that spread and kind of joined together on her thigh and back of the knee, so they didn’t resemble the “classic” bullseye. She returned to her brother’s place on Long Island, and began flu-like symptoms. By the time she flew back to us in Washington State she was really sick, nausea and vomiting every day. So our journey with Lyme began.
Her regular doctor (and the only doctor used by a lot of folks in this rural area) ran the gamut of tests, but could find nothing wrong. Anna began to do research on the Internet, and brought me a printout of Lyme disease stages, from the Yale Medical School. We brought this to the doctor, and he gave her the Elisa (Do-little!) test which of course showed negative. He became the first of over fifty doctors in the Puget Sound area who parroted, “We don’t have Lyme out here!” even though we told them she had been bitten in Indiana/Illinois. In the beginning, I believed her doctor…she just needed to eat right-exercise-get off computer etc. so she had to educate me first, as she learned more about the disease. What I know is, every time there was a disagreement with a doctor…Anna was proven right, the doctor wrong, ergo she was “fired” as a patient.
It took THREE years to get a clinical diagnosis, and a further TWO years to save up for Igenex testing, which came back CDC positive. It would be another THREE years (EIGHT years in total) to receive proper treatment. By that time Anna was severely compromised with Borrelia, Bartonella, and Babesia infections. One day we’d have to keep her from falling off the bed as she writhed in agony, the next day she couldn’t move anything but her eyelids. She was using a wheelchair, having seizures, psychologically-compromised, and had three pages worth of other symptoms. We felt scared and isolated. This was a war, and my daughter and I were trapped in a foxhole.
We are forever grateful to Dr. Ernie Murakami, in Hope, BC. He saw Anna for a two and a half hour appointment, on his day off…at no charge. He clinically diagnosed her. He has continued to be a loving supporter of patients, and Canada’s leading medical activist. I think of him often, especially when I hear of extremely high prices for some LLMD’s. Dr. Murakami is a saint for the community, with a whole country on his shoulders.
Little by little, we found other patients and community, online. “Under Our Skin” came out, and we began to hold screenings, and sit on panels to answer questions after the film. I so often say, you don’t go looking for a cause, a cause comes and slaps you upside the head! Anna had had some treatment at this point, and there was no more question in our minds about what course to take. She had lived that one scene from UOS, where she got out of her wheelchair and walked to her doctor. She began an online support group, and we became activists. I had a jazz combo, and Anna would sing with me when she felt well enough. We used the performances as platforms as well. Jane Eamon (a Canadian friend) and I wrote the song, “The Suffering of Lyme.” Anna and I recorded it, and Angele Rice used it on the video she made for the worldwide protest. Our local community knows us well, and is becoming educated, except for doctors swayed by the misinformation coming from the IDSA.
We both found strength for the fight by helping others find theirs. We started getting to know other advocates/activists in North America…tiny foxholes now linking into a network. One of them, Leslie Wermers, became family. The night she died, we three had had such a wonderful conversation about setting up online support meetings with webcams, now so easy with Google Hangouts etc. In death, she gave us the gift of her sister Tracie, another Lyme patient/advocate/activist, and all-round beauty.
I started holding my own May protest by going to a busy intersection (close to a hospital) one Saturday, holding a “Lyme Lives Here” sign I had, and waving to the hundreds of people who drove by. A few years ago, Anna began to join me there, and friends joined us when they could. We began doing interviews for local papers and radio stations. At the time, I also wrote for the Tacoma Tribune’s online paper, so was able to write and reach out to the South Sound community with my blogs. Through Anna’s home nurse, who also teaches nursing students, we are able to influence incoming healthcare workers, and teach them the reality of chronic Lyme.
We held a number of screenings, both public and private, of UOS, and have so far held two
public screenings of Emergence, one at our local library, and one for student nurses. We’ve had a lending library for UOS also, especially for doctors Anna sees who do not know much about Lyme. We lent the DVD to one brilliant surgeon who had moved to Washington State…because she believed we had NO ticks here!! She had lived in the Midwest, but moved when her children came in from playing, covered in ticks.
Four years ago, inspired by Mandy’s swimming in UOS, we held an event at a local Easter Seals Camp swimming pool. My son and I swam for two straight hours, while Anna talked to people, and handed out literature we had. A photographer friend, Dale Goodvin, took pictures all over the Key Peninsula, featuring my “Lyme Lives Here” poster, which we had at the pool. I thought of using swimathons, rather than walks, but one has to go through the American Swimming Association, in order to try and raise money that way.
Every September, our online group holds a Lyme picnic. It was originally begun by “Dudes and Chicks With Ticks” but our family has taken over, since last year, at their request. Anna and I also hold face to face support group meetings every third Saturday of each month, either at our local library, or at our home. Anna’s online support group for patients who live, or who are being treated in Washington, now has over 120 members. I’m so proud of her, for running one of the most respectful groups I’ve seen.
No one speaks more eloquently about her infections than Anna, when her brain is not aflame. Reaching out and helping others gives her the strength to do her own battle. She is the one with her ear to the ground for all the new research coming out, more Lyme-literate than any GP we’ve found. Both of us are determined to help other families cope, having lived through our own dark days of feeling hopeless and so very much alone. Both of us are determined to educate and, hopefully, save families from the long and painful journey we’ve had, these last sixteen-plus years. Lyme hurts and splits whole families, or it hurts and galvanizes them into action.