How to spot Lyme disease—without the red bull’s eye rash

When my son Evan was in sixth grade, he went on an overnight camping trip with his class. He had a great time with his friends and didn’t recall being bitten by anything. Weeks and weeks later, we were down at the Delaware shore on vacation, and Evan began to complain of head and muscle aches. One evening as we drove out for ice cream, he told us that the cars’ headlights were really bothering his eyes. All those symptoms seemed to add up to Lyme disease—but he didn’t have the infamous red bull’s-eye rash.

The next morning, I called our pediatrician, Dr. Bruce Lockman of Lockman and Lubell Associates in Fort Washington, Pennsylvania. He urged me to drive Evan home, where he was tested for Lyme. The test came back positive, and he was immediately put on a course of tetracycline. We concluded that he must have been infected for almost two months at this point (probably bitten by a deer tick on that campout), so the doctor kept him on antibiotics for six weeks. Eventually, the symptoms abated, and life returned to normal for Evan. 

Some Lyme sufferers are not as lucky and endure serious long-term medical issues. This is more common the longer the disease goes untreated. There are several complicating factors that can lead to a delayed diagnosis. The deer tick itself is tiny (a “nymph” tick is the size of a poppy seed) and its bite often goes unnoticed. The bull’s-eye rash is the commonly known Lyme disease symptom, but up to 30% of sufferers never get the rash at all. Thus, many infected people have no idea there’s a problem until they’ve had Lyme for weeks (or even months). 

The most common initial test to diagnose Lyme is an ELISA (enzyme-linked immunosorbent assay). It tests your blood for Lyme antibodies. Your immune system makes antibodies in response to Lyme infection. However, these antibodies often take weeks after the person becomes infected to show up in your blood. Therefore, interpreting the result can be tricky.

Atypical Lyme disease symptoms

If you’ve been feeling under-the-weather after spending time outdoors, these are some lesser-known Lyme disease symptoms:

• headache
• body aches
• sensitivity to light
• swollen lymph nodes
• nerve pain
• neck stiffness
• short-term memory problems

Stages of Lyme disease

I spoke with Dr. Lockman who explained more about this worrisome illness. There are two stages of Lyme: 

• localized (three to 30 days after infection) 
• disseminated (more than one month after infection) 

In his suburban Philadelphia practice, Dr. Lockman says he sees “quite a few children in the early, localized stage, and a short course of antibiotics [two to three weeks] is enough to knock it out of their systems.”  

Lockman listed some of the possible complications of later stage disseminated Lyme. These include arthritis, with swollen joints. The heart can also be affected (inflammation causing heart rhythm problems). Neurologic symptoms may include Bell’s palsy (paralysis of one side of the face), meningitis, and cognitive (thinking) problems. There can also be eye changes (red, inflamed iris or cornea) and liver and spleen inflammation. For disseminated Lyme, IV antibiotics are sometimes required for a longer time period. Although, Lockman added, there is a good bit of controversy in the medical profession about the patterns of later stage Lyme disease.

Where is Lyme disease found?

There are currently 330,000 cases of Lyme disease annually in the U.S. Eighty-five percent of these cases have been found in just 14 states, mostly in the Northeast (it was first discovered in Lyme, Connecticut), though cases also appear in California, Oregon, and Washington state. My son—sleeping outdoors in southeastern Pennsylvania—was a prime candidate for a Lyme-carrying deer tick bite.

“The tick carrying Lyme disease has increased its range in North America due to reforestation [and] the explosion of the whitetail deer population,” explains Dr. Patrick Gaffney of the College of Earth, Ocean and Environment at the University of Delaware.

How to prevent Lyme disease

As of 2018, there have been Lyme cases in all 50 states. But that doesn’t mean you’re without a way to protect yourself. If you are going to be outdoors in wooded areas, minimize your skin’s exposure to grasses by wearing long-sleeved pants and shirts, and use a tick repellent. Examine your skin thoroughly after being outdoors, and carefully remove any ticks immediately. (Read full details for tick removal here.) 

Whether you were bitten by a tick or not, always pay attention to flu-like symptoms such as headaches, dizziness, fever, muscle pain, and tiredness, which could be Lyme disease symptoms. And, of course, watch out for the bull’s-eye rash. If you experience any of the above, see a doctor right away.