May is Lyme disease awareness month.
At the beginning of each spring, we often hear news reports on Lyme disease and are reminded to be aware of ticks. I never thought it applied to me because I wasn’t an avid hiker or a big outdoorsy person. I knew you could get Lyme disease from a tick, but that was the extent of my knowledge.
Last May, after years of suffering from an unidentified illness, my doctor decided to throw in a Lyme disease test. I thought it would be just another test that came back normal. It came back positive.
The Center for Disease Control says there are over 300,000 cases of Lyme disease reported each year, most on the East Coast where it is endemic. The Washington State Department of Health says it is rare here, citing between seven and 23 cases each year, but only zero to three of them infected by a tick in Washington.
When I informed them that I had Lyme disease, I asked whether I was one of those zero-to-three cases. The response was that if I really had Lyme disease, I would have been contacted and interviewed by the department, since doctors are supposed to report all incidents to them. In my case, that didn’t happen.
I have met many other people around the state who have Lyme disease. Eighteen out of 20 said they were infected here in Washington.
My first encounter for treatment was with my infectious disease doctor. He was skeptical, saying, “You can’t get Lyme disease in Washington; where else have you been?” I had no recollection of a tick bite or the bull’s-eye rash that is supposed to come along with it. After researching my condition, I learned that fewer than 50 percent of people recall a tick bite or develop the rash.
I went through two weeks of oral antibiotics and then four more weeks of meds infused through a peripherally inserted central catheter (a PICC line) used for long-term intravenous medications.
It was hell.
Two weeks after I finished that treatment, my symptoms began to return. My doctor did no follow-up because there is no test to show you are cured. The test for Lyme only shows whether your body has produced antibodies to fight it.
I decided to get a second opinion from the University of Washington. To my surprise, their test came back negative. They said the first test was probably a false positive. In the mean time, I am still very ill.
Most Washington cases may be the result of a tick bite out of state, but the endemic cases are mostly on the west side of the Cascade Mountains in heavily-forested or dense, brushy areas, not open spaces. It is the nymph deer (or western-black legged) tick that is the most infectious. It is the size of a poppy seed and not easy to detect. Ticks favor warmer temperatures and high humidity, but are known to thrive in temperatures as low as 40 degrees.
The best way to avoid ticks is to hike in the center of trails, since ticks are usually found near the top of tall vegetation and need to make direct contact in order to crawl onto a host. Wear Permethrin-treated clothing or an insect repellent specific for ticks on your skin and do a tick check or shower within two hours of being outdoors. Ticks need to be attached for sometimes as long as 48 hours to transmit disease, so carefully and promptly removing a tick and disinfecting the skin where the tick attached can significantly reduce the chance of infection.
With better testing, the medical community could do more for those who become infected. There is no real treatment for late stage Lyme sufferers, at least in Western medicine. The naturopathic community has several viable options that may push the disease into remission, but most naturopaths do not take insurance.
It is a myth that you cannot get Lyme disease in Washington. Be aware and be prepared.
Shelly Koyen recently relocated from the Key Peninsula to Tacoma.
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