Misdiagnosed Lyme disease: One reader’s horrific experience

By Deborah Kotz, Globe Staff

Jennifer Crystal

After writing my weekly challenge on protecting yourself against Lyme Disease, I received a poignant and important essay from a reader who has been suffering from a case of Lyme Disease that was originally misdiagnosed and not treated for years after her original tick bite. Jennifer Crystal, a masters of fine arts student at Emerson College, wrote the following for me to post:

In the summer of 1997, while working at a camp in Maine after my freshman year of college, I found a blotchy red rash on my right arm. The camp nurse shrugged. “Maybe it’s from your sleeping bag. Let’s give it a few days and see what happens.”

A few days later I collapsed in the dining hall. When I came to, the camp nurse told me I’d had a low blood sugar reaction, something that had never happened to me before. She didn’t think to connect the incident with my mysterious rash, which by then had faded. She didn’t think to test me for Lyme disease, known for its tell-tale rashes. She didn’t think to test me for babesia, ehrlichia or bartonella, tick-borne parasites that consume oxygen in the red blood cells, which can first manifest as hypoglycemia. She didn’t think to do any of these tests, because she didn’t know the serious health threat that ticks pose in wooded areas.

I don’t blame the camp nurse for my misdiagnosis, but I do blame the lack of awareness surrounding tick-borne illness that led to her ignorance. It took eight years for a doctor to connect the dots of my burgeoning constellation of symptoms. By then the bacteria had spread to every system of my body, crossed the blood-brain barrier and invaded my central nervous system, and was replicating at a rate that evaded the strongest antibiotic treatment.

I was left bedridden, hooked up to an IV, for two years. The co-infections of babesia, ehrlichia and bartonella caused nightsweats, fevers, and neurological symptoms that demanded intense anti-malarial treatment.

This is the fate that awaits anyone who does not receive a proper diagnosis of tick-borne illness right away.

Our best defense against this health threat is Lyme literacy, not just amongst the general population but amongst doctors, too.

If you suspect you have a tick-borne illness and you feel that your doctor is not taking you seriously, please, remember my story, and find another doctor. Press on until you receive an accurate diagnosis and proper treatment. Doctors should testnot only for Lyme disease but for co-infections that can complicate treatment. Because tests for tick-borne illnesses can be inaccurate, doctors also need to watch for clinical symptoms.

Thirty thousand cases of Lyme disease are reported by the Center for Disease Control each year. But because Lyme is often overlooked or misdiagnosed, the International Lyme and Associated Diseases Society estimates that only 1 out of every 10 cases of tick-borne illness is actually reported, and that the number of cases occurring each year has increased twenty-five-fold since the disease was first tracked in 1982.

If Lyme disease is diagnosed right away, a three-week course of antibiotics can eradicate the disease. The problem is that not all bites come with a classic bull’s-eye rash. Often, bites happen in hard-to-spot places like the scalp or behind the ears. Symptoms of fatigue, joint and muscle pain and neurological impairments can be misdiagnosed as everything from the flu to anxiety.

I am living proof of the damage this gross illiteracy of tick-borne illness can cause. If my story can save one person the trouble of all that I have been through, the pain and suffering will have been worth it. For help finding a Lyme-literate physician and for additional information about tick prevention, please visit the Tick-borne Disease Alliance or the International Lyme and Associated Diseases Society.