A few summers ago we traveled to Jackson Hole, WY and The Grand Tetons on a family vacation. Three days into our trip, we found a tiny tick on our then three year old. I immediately went to the concierge at The Four Seasons (don’t judge me…I can love the outdoors AND not believe in camping). Anyway, the gentleman looked at me clutching the tiny tick in a ziplock quizzically as if to say “Ma’am, if I wasn’t wearing this ridiculous top hat and ascot I would laugh at you.”
Because, as it turns out, in other parts of this country, tick bites are just tick bites. But here, in Chester County, the tiny deer tick can be the carrier of dreaded Lyme disease. Out in Wyoming, no one had any clue of the havoc Lyme disease can cause but here, it is the topic of daily dinner conversations.
Not only is it a rotten disease to get, it also often goes undiagnosed, misdiagnosed, under treated, over treated, and over tested.
For those transplants from, say, North Dakota, here is a refresher.
Lyme is a tick borne disease caused by Borrelia Burdorferi ( a spirochete–kind of bug similar to the organism that causes syphillis). In its earliest stage, Lyme appears as a classic rash called Erythema Migrans (see picture). In its later stages, Lyme can cause very serious neurologic problems, arthritis, and even heart block. Obviously, the earlier Lyme is diagnosed the better the outcome. So, what is the problem? Why are we having such issues making a clear diagnosis and beginning appropriate therapy?
First, the symptoms of Lyme can also be similar to those of many many other conditions like autoimmune problems, common viruses and fibromyalgia. Second, the testing and interpretation of those tests are confusing for doctors and patients alike. Third (and this is my opinion), there is this reverse mentality in the medical community about Lyme disease. In other words, EVERYONE and their grandmother thinks they have Lyme disease, therefore NO ONE really does. Obviously this is flawed thinking at best.
So, what do we do?
Patients need to understand the signs and symptoms of Lyme disease. The earliest symptom is the classic bullseye rash (occurs within a few days of the tick bite. Later (weeks to months) symptoms can include peripheral neuropathy, meningitis, and Bell’s Palsy. Late Lyme occurs months to years later and includes symptoms such as the unilateral arthritis, Lyme encephalopathy i.e.: all of a sudden you feel like your IQ plummeted or that your head is under water.
Post Lyme Syndrome is very controversial and needs to be discussed very carefully with a physician prior to beginning long term treatment.
If testing for Lyme is warranted, the ELISA is the screening tool which is almost always confirmed by a the Western Blot. While this test is not perfect, it is extremely unusual to have late stage Lyme and have a completely negative Western Blot.
Once Lyme is confirmed (clinically by physician evaluation or by lab work) the treatment protocol is generally to use Doxycycline 100 mg twice per day for 14-21 days. Longer courses of antibiotics have resulted in more side effects and not necessarily better outcomes.
It is important to note that we can learn a lot from that teeny little tick so if you pull that sucker off, SAVE IT. Your doctor can send the tick in for analysis. If the tick doesn’t have Lyme, it certainly can’t give you Lyme so you can be done right there. If the tick is positive for the Lyme but, it is reasonable to consider treatment with antibiotics just as a preventive measure.
My best advice for our Chester County neighbors worried about Lyme is to talk with your doctors very openly. Understand the limitations of the tests for Lyme, understand the perspective of your physician who has probably already seen a dozen patients convinced they have Lyme this week, and be your own advocate. There is no harm in testing. However, there is harm in taking undue antibiotics.
Now, after writing this, I for one, am sort of glad that winter is in the air. Even in endemic Chester County, Lyme ticks DO NOT fair well in cold weather.
Next summer, I vow to be a little less neurotic about the tick checks in the bathtub. If I try to frantically scrape one more “tick” that is really a mole of of my daughter’s back, I do believe she will report me…..