Know the Facts about Lyme

F O R E S T S(1) We are all so looking forward to the warm weather (it will be here eventually I'm told) but one thing that is always at the back of my mind in the warm weather here in upstate NY is Lyme Disease. I myself was diagnosed with Lyme disease when I was a middle schooler growing up in New Jersey many moons ago, and my mom was also diagnosed with Lyme Disease a couple years ago. For her the symptoms were severe, and the idea that Lyme disease is "easy" to prevent or "easy" to treat is a dangerous one.

What you can and should do is educate yourself about Lyme Disease and be prepared. My goal in sharing this information is not to scare, but to make you aware that Lyme Disease should not be taken lightly, and it is not "difficult" to contract. Difficult to diagnose? Perhaps.

I spoke with Holly Ahern, Associate Professor of Microbiology at SUNY Adirondack who provided me with some facts and information about Lyme disease specific to our area.

Holly Ahern: Lyme disease is a bacterial infection transmitted to humans by ticks, which are actually hard bodied spiders. Not everyone who gets bitten by a tick will show any symptoms or develop Lyme disease, but there is currently little research to help us understand who will get it and who won’t. It’s also becoming increasingly obvious that a significant proportion of Lyme disease patients (approximately 1 in 3) will continue to experience disease symptoms that may become disabling, even after antibiotic treatment. However, the reasons why some people recover while others don’t, is also not yet known. With the understanding that the science is still evolving, you should be aware of what is known about tick-borne diseases, and what is still unknown, for the safety of you and your family.

1.    In this area, two types of ticks are known to be vectors of the bacteria that cause Lyme disease: deer ticks (also called black-legged ticks) which are the most common, and lone star ticks, which are widely found downstate but less so in upstate counties. Black-legged ticks are stationary and “quest” for their blood meals; lone star ticks are active hunters. Even the common dog or wood tick can transmit diseases such as Rocky Mountain Spotted Fever (RMSF), when they bite humans.

2.    Ticks have three life stages, and each stage requires a blood meal. Larval (baby) ticks are incredibly small, but pose little risk to humans. Larval ticks acquire disease-causing microbes when they feed on their first infected mouse. Nymph (teenager) ticks emerge in the late spring through mid-summer, and this tick life stage is the one most closely associated with Lyme disease. Adult ticks can be found pretty much year round, since they only become inactive when temperatures drop below freezing. Therefore, there really is no such thing as a “tick season,” as some like to call the spring and early summer. You can be bitten by a tick and develop a tick-borne disease at almost any time of the year.

3.    When ticks bite, they can be attached for days while they feed on your blood. There is the perception that ticks have to be attached for more than 36 hours before you are at risk of getting Lyme disease. However, this has never been tested in humans, and the animal studies that have been done show that Lyme disease can be transmitted in less than a day. Also, transmission time for other tick-borne diseases, like Anaplasma, Babesia, and the tick-borne viruses is completely unknown. Therefore, you may still be at risk of contracting a disease even if the tick was attached for less than 24 hours. It is not safe to assume otherwise.

4.    Lyme disease is strictly “defined” as an illness caused by infection with a single bacteria named Borrelia burgdorferi. However, research has shown that the majority of ticks carry more than just this one bacterium, and thus they may also transmit diseases such as Anaplasmosis, Babesiosis, or viral encephalitis, which is a potentially fatal disease. These co-infections make Lyme disease harder to diagnose and treat.

5.    If you are bitten by a nymph stage tick in the late spring or early summer, you may detect a rash around the bite that looks like a “bulls-eye” and develop a fever, chills, and ache muscles and joints. These are the symptoms of an “acute” manifestation of Lyme disease. This presentation is most likely to be recognized and diagnosed as Lyme disease by a physician. But what if you don’t see the tick or find a bite site? Or what if you’re bitten by an adult tick, or in the very early spring or late fall when there’s less vigilance about checking for ticks? What if your symptoms don’t include a rash or flu-like symptoms? What if the symptoms include the onset of headaches, heart palpitations, fatigue, dizziness or brain fog, all vague indicators of some sort of disease, but not necessarily Lyme disease? Delays in diagnosis and treatment for Lyme disease can lead to progressively worsening symptoms that can go on for months or years and be disabling.

6.    The current diagnostic criteria for Lyme disease is based on an algorithm that requires (1) knowing if you were bitten by a tick or have travelled to an area where there are Lyme-carrying ticks, (2) developing a “bulls-eye” rash around the tick bite site, and (3) “laboratory evidence” of infection, which is most often blood tests for specific types of antibodies reflecting exposure to the disease-causing agent. However, while these criteria are useful for acute manifestations of Lyme disease, they are exceptionally unreliable for diagnosing cases that don’t conform. Here’s why they’re unreliable: as research studies have recently shown, over half the patients bitten by ticks and diagnosed with Lyme disease developed a solid, raised rash (not a “bulls-eye”) or no rash at all. Because current blood tests for Lyme disease are only an indirect measure of infection, and are specific for only one bacterial agent (Borrelia burgdorferi), they are accurate less than half the time. Unfortunately, better tests are not yet available to help physicians make a correct diagnosis of Lyme disease, and testing for other tick-borne agents is seldom requested.

While we wait for medical organizations to sort out the science, develop reliable tests for diagnosis, and create guidelines for treatment of tick-borne diseases, be aware that there are two medically recognized standards of care for Lyme disease, and as a patient or a parent who advocates for the care of a child, you have a right to know what the various options are and be included in treatment decisions. In our area, with an abundance of ticks and the diseases they carry, the possibility that a “mysterious illness” is actually Lyme disease, Babesia or Anaplasma should always be considered.

For some tips on how to stay safe, click here for a piece I did last year.