Living on a desert island may not even be a mode of escape from Lyme disease because birds can also be a carrier of infected ticks. Dorothy Leland, who is an advocate with the California Lyme Disease Association and has a daughter with the disease used to love the outdoors a lot more. Since her daughter contracted Lyme over three years ago Leland has taken a different perspective on life in the great outdoors.
Ticks that carry the Lyme disease infection, which causes a rash that looks similar to Saturn rings, is a very complex disease to spot, prevent, and cure. Lyme disease associations like lymedisease.org that Leland is a part of aid in the education and prevention of Lyme. Leland says there are three main things one should remember when setting out for an expedition in nature: Be aware, choose spots carefully, and wear repellant.
The 50-year-old historical fiction writer recalls a time when her life was Lyme disease free, before her daughter started having symptoms, when she was a girl scout leader. As a leader Leland was required to take various outdoor awareness classes. “I don’t recall hearing anything about Lyme disease in any of the various classes,” she said. “At one point another mother asked me if we should check the girls for ticks. (Surprised) I agreed it was a good idea.”
The goal of Lyme disease agencies isn’t to scare people into not going outside but as a tool for prevention. “Letting people who are sick with an unknown illness know that Lyme disease might be a possibility is part of our task,” said Leland.
The complexity of the disease is almost overwhelming for people who are well-versed in the subject. A volunteer with lymedisease.org who wishes to remain anonymous says that it would literally take days of research to get a grasp of the extent of Lyme.
The controversy surrounding Lyme disease has to do with the type of test performed on someone who thinks they might have the disease. On the Infectious diseases Society of America website a May press release breaches upon the guidelines involved in the diagnoses of the disease. Some, including the Lymes disease supporter interviewed, feel the disease is being un-properly diagnosed because of the test. If this is true it would explain the 50 percent of all people with the disease who are unaware they even have it.
Leland explains that the diagnosis standard for actually getting the blood test for Lyme is nonexistent. “Most people hear about it from a friend, research it themselves, then ask a doctor to test them for it,” said Leland who lives within sight of houses of four different people with the disease—proof to her that it is a very real situation.
The advice about watching a person who has been in contact with a tick closely for 30 days is helpful, but it’s more complex than that. “Finding the disease is like being a detective,” said Leland who gave examples of numerous people who went years living with Lymes before detection.
There is also the possibility a Lyme disease infected person may have another tick affiliated disease like Babesia or Bartonella. In such cases the patient would need to treat the co-infection before the Lyme disease treatment, usually consisting of antibiotics, can be implemented.
The list of complexities, precautions, statistics, current research and controversy is almost as complex as the disease itself. Due to the recent output of a movie, “Under Our Skin,” a book “Cure the Unknown,” and various articles about Lyme in the New York Times, Washington Post and Sacramento Bee all found on curetheunknown.com, Leland is hopeful about the progress of education and prevention regarding Lyme disease.