Anna Hart of Home suffers from a chronic form of Lyme disease, a debilitating illness mostly ignored by the medical community due to a lack of information, and political and economic influences.
Anna, now 28, said she was camping 10 years ago when she was bitten by an infected tick. It took three years to be diagnosed and another two years to receive treatment for the disease. She did not have the classic bulls-eye rash, and was told she was cured after a standard antibiotic treatment of 35 days.
At one point she was “fired” as a patient from a prominent medical facility because she’d been on multiple antibiotics too long, said the insurance company. Her latest blood tests indicated continued activity of the Lyme infection, but said she was told it was “all in her head.”
Anna is now in the third and chronic stage of the disease, but finally able to be mostly out of her wheelchair, and active in focusing attention on this long controversial subject.
She started an online support group for Washington state residents,http://health.groups.yahoo.com/group/WALDUC-Support/ The focus is on guidance, support, advocacy and education for those whose lives are affected by Lyme disease, especially in this state. There is also a link to a Lyme disease caregiver’s group.
“Our family has walked the surreal journey of this disease and its misinformation for a decade now, along the way finding many others suffering in our area. This has made us determined to advocate and educate our neighbors, doctors, our community about Lyme, seriously under-reported and misunderstood in Washington State,” Hart said.
“Ticks have tested positive for Lyme and co-infections all over this area,” she said. “In the early stages this disease can be taken care of easily but left to become chronic and multi-systemic, it’s a long, arduous, expensive battle to regain quality of life. There is no awareness in this state.”
Hart interviewed 50 doctors in the Puget Sound area who all claimed there was no Lyme disease in this state. At least now the Center for Disease Control does have a count, and admits there are likely many more cases not reported.
The International Lyme And Associated Diseases Society believe Lyme disease is responsible for a range of medically unexplained symptoms and recommend long-term antibiotics as a cure.
The Infectious Diseases Society of America claims there isn’t sufficient evidence to support a diagnosis of chronic Lyme disease after the recommended treatment. The National Institute of Health agrees. Both IDSA and NIH recommend against long-term antibiotic treatment saying it is ineffective and potentially harmful.
Jordan Fisher-Smith, a former California park ranger says “Antibiotics are not bad for you if you have a fatal disease.” Fisher-Smith is a major commentator in a film shown last month in Gig Harbor, “Under Our Skin” by Open Eye Pictures. He has his life back after years of incorrect diagnosis and treatment. Hart says there is a group of Lyme Literate doctors who “work in tandem, knowing that antibiotics are so hard on the body and help is needed (like probiotics – beneficial bacteria) to keep the treatment from being as difficult as the disease.” New York and California are the only states that have passed laws stating that treatment should be set between the doctor and patient, as opposed to being determined by insurance limitations.
“We really have a chance in Washington, to get ahead of the curve with Lyme disease,” says Hart, “if we can educate our doctors on the latest research instead of the old misinformation that has been allowed to stand…for business’ sake.
“Several people … are working on opening a Not-For-Profit Lyme Organization for our state — the Washington Lyme Disease United Coalition,” Hart said. “Legal steps are in motion for a 501(c)3 tax-deductible nonprofit status. Imagine the dreams we can bring to realization when we come together honorably and work for a common purpose.”
Limited copies of the DVD are available from Hart. She is willing to show the film to groups or organizations. Call 253-307-4264.
For more information: Pamela Weintraub, “Cure Unknown: Inside the Lyme Epidemic,” a true story of a family’s experiences, available at our local library.