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2016-06-29 / News

The Lyme light

Why tick-borne Lyme disease is often misdiagnosed

Growing up on a farm in southside Virginia, I spent my summers playing in the woods and hayfields. Tick bites were part of my everyday experience.

As a child of the 1980s, I had no idea that just a few hundred miles away, people were getting sick after being bitten by the same kind of tick that was routinely crawling all over me. Public health officials had just given a name to a new tick-borne infection affecting the northeastern United States. They called it Lyme disease after the first known outbreak in the small town of Lyme, Connecticut.

If caught early, Lyme is a bacterial infection that’s highly treatable with antibiotics. Early symptoms mimic the flu – fever, chills, fatigue, headache and body aches. About 50 percent of people also get a bullseye rash around the site of the tick bite.

But early Lyme also can be asymptomatic. Less than half of people remember having a rash or tick bite.


Donna Gregory Burch Donna Gregory Burch I’m sure ABC News anchor Peter Jennings covered the Lyme outbreak back then, but it wouldn’t have meant much to the people living in my little farming community. They would have been more concerned about the beetles eating their tobacco crops. An itching, red tick bite was just another nuisance.

Through my 20s and 30s, I still had occasional tick bites. I didn’t think twice about it. It was an annoyance that came with living in a rural area, and once I moved to Chesterfield, it was part of living in houses canopied by trees.

Some people with Lyme disease remember that fateful tick bite – the one that left a bullseye rash and changed their lives forever. I have no such memory because I’ve been bitten so many times over my lifetime that pulling ticks off of my body was commonplace.

I have no idea which tick made me sick or even where that tick was located when it bit me. It could have been around a pond in Mecklenburg County – or in the yard of my Brandermill home or my second home off Providence Road.

All I know is that little bug has caused me years of suffering, and there’s likely more to come as I embark on treatment for chronic Lyme disease.

Two years ago, I was diagnosed with fibromyalgia. Well, it turns out my doctors may have gotten it wrong. After undergoing some advanced testing, I was diagnosed with chronic Lyme disease last month. By the time this story publishes, I’ll have started my treatment.

My Lyme doctor says it’s possible my fibromyalgia symptoms may disappear after I’m properly treated. Apparently, it’s fairly common for Lyme to be misdiagnosed as some other condition – so much so, in fact, that Lyme is nicknamed the “great imitator.” Lyme is frequently confused with fibromyalgia, chronic fatigue syndrome, multiple sclerosis, rheumatoid arthritis, ALS, lupus and other conditions. Earlier this month, the national media reported country music star Kris Kristofferson’s Alzheimer’s symptoms are nearly gone after he was treated for chronic Lyme.

There are a couple of reasons why chronic Lyme can be confused for other conditions. First, it causes so many varied, sometimes vague symptoms. The most common are extreme fatigue, joint and muscle pain, numbness or tingling (particularly in the extremities), cognitive difficulties, poor sleep, neurological issues, heart irregularities and others. These same symptoms are nearly identical to those of fibromyalgia and similar conditions.

And secondly, Lyme disease can be hard to diagnose. The Lyme tests available through LabCorp and similar labs can be unreliable. Most physicians follow the Centers for Disease Control’s (CDC) two-part testing recommendation for Lyme. The ELISA test is generally given first to detect if the body has produced antibodies against the Lyme bacteria. The problem is that ELISA only detects about half of Lyme cases. The second test, the western blot, is a little more accurate than the ELISA, but it still misses about one-third of active cases.

If someone was exposed to Lyme years ago, like I was, then it’s unlikely the standard testing available through a general practitioner’s office is going to detect it. I was tested for Lyme at least twice in the past three years by my primary-care doctor and rheumatologist. Both tests came back negative. The Lyme bacteria finally showed up after I had more advanced testing done through a private lab called iGenex (igenex.com).

I’ve also learned that often the sickest patients will still test negative for Lyme because their immune systems simply aren’t strong enough to make the antibodies screened for by the tests.

Normally, newspaper reporters try their best to not interject themselves into their stories, but I feel like it’s important to share my journey in hopes that it might help others. If you’re living with a chronic health condition that causes pain, fatigue and similar symptoms, it’s possible that it could be undiagnosed Lyme disease. It may be worth it to see a Lyme-literate medical doctor and get proper testing. Lyme disease is endemic to Virginia, and the threat is very real.

I’m facing several months (and possibly years) of physically demanding and financially draining treatment, but my Lyme diagnosis has given me new optimism. After living in chronic pain for years, I may finally be on the right path to healing. Here’s hoping!

Visit my website, fedupwithfatigue.com/lyme-disease-and-fibromyalgia for more information on Lyme testing, how to find a Lyme-literate medical doctor and other helpful information.

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