“But I never saw a tick” and “I never got a bullseye rash” are two very common comments I get when I talk to people who tested positive for a tickborne disease. So why is that?
The most simple and straightforward answer would be that most tickborne diseases are transmitted by ticks in the nymph stage, which are no larger than a poppy seed, and not all tickborne diseases produce the bullseye rash; in fact, most do not. My back in 2009 looked like someone took a paintbrush and painted the side of my torso — nothing even remotely close to a bullseye!
The Maine Center for Disease Control & Prevention reports that more than 50 percent of all ticks in Maine carry a tickborne disease. Should one find and remove a tick from one’s body, one cannot tell simply by looking at that tick what it is carrying. One can identify the species but there are no indicators as to what, if anything, it is carrying.
Research has shown us that there are many different kinds of diseases and various strains of those diseases, and many of the symptoms of those diseases have been identified. But what happens when one is bitten by a tick carrying more than one tickborne disease? How does that affect the testing and, furthermore, how does it affect symptoms?
This is where we need to start thinking about this as a tickborne disease and move away from thinking constantly about Lyme disease. Getting a tick bite and going to a doctor to be tested for Lyme disease, one could easily miss the mark of picking up another tickborne disease because the basic Lyme disease test conducted in most primary-car physicians’ offices, the ELISA test, is only looking for one strain of Lyme disease and is, at best, 65 percent accurate if one is tested at the right time. If one tests too soon or too late, one can get a false negative. Maine law LD 597 states that Lyme disease can be difficult to diagnose, and that a negative test doesn’t mean that one does not have it and encourages retesting in a couple of weeks.
Just recently, the federal Centers for Disease Control and Prevention released a statement about the faultiness of the current testing and is working on a test that is like DNA testing that hopefully will have a wider range of detection with a much stronger sensitivity and a more accurate result.
So, with unreliable testing and the unknown of what a tick that bit someone could be carrying, how does one have peace of mind when living in an endemic region? Simple — don’t wait to be bitten! Have prevention practices in place to use on a regular basis. Make it part of a daily routine. Whatever repellent is preferred, use it! Make sure that clothing is treated with permethrin, and for those who are concerned about the environment, buy products and clothing already pretreated with permethrin that are safe and effective. Treat in places of work and play — contact a licensed provider or there are do-it-yourself products. And don’t forget about pets who are more than capable of carrying those ticks in from the outside. Don’t flush a tick; send it off to be tested.
With many tickborne diseases producing common symptoms such headaches, joint pain, stiff neck, fever, and generalized fatigue, and not all of them producing the classic bullseye rash, we need to change how we think about tickborne diseases when we have been bitten, in order to get a proper diagnosis, receive the right treatment, and know what to test for.
(Paula Jackson Jones is the president and co-founder of Midcoast Lyme Disease Support & Education, the Maine partner of the national Lyme Disease Association and member of Maine CDC’s Vector-borne Disease Workgroup. Email her at paula@mldse.org or go to mldse.org for more information.)
