Lyme to Life
Left untreated, Lyme disease can become a lifelong battle. But there’s help.
By Donna Burch
Growing up in Goochland County, Diana Wade didn’t give it a second thought when she was bitten by a tick. Ticks were just an unfortunate part of country living, like snakes and field mice.
But three years ago, Wade learned that tick bites aren’t just an itchy nuisance. A single bite from a blacklegged tick (also called a deer tick) is all it takes to contract Lyme disease.
If caught early, Lyme is highly treatable with antibiotics. But many people go undiagnosed due to inaccurate testing and vague symptoms that are often misdiagnosed as other conditions.
Chronic Lyme is much more complicated and hard to treat, with some people suffering from joint and muscle pain, vertigo, cognitive dysfunction and a host of other unexplained symptoms for years.
The condition gets its name from Lyme, Connecticut, the community where the first recognized cluster of Lyme occurred during the 1970s. Since then, Lyme has steadily spread through the northeast, upper Midwest and down into the mid-Atlantic states. It’s now recognized as the fastest-spreading vector-borne illness in the United States with 300,000 cases reported nationally each year. However, the Centers for Disease Control and Prevention (CDC) speculates that the number of Lyme cases is actually 10 times higher due to under-reporting.
Over the last 10 years, reported Lyme cases in Virginia have grown nearly 400 percent, from just 274 cases in 2005 to 1,346 last year. There were 22 reported cases in Chesterfield County and five in Henrico County that met the CDC’s definition for the disease last year, according to the Virginia Department of Health. In 2013, there were 20 cases in Chesterfield and 19 in Henrico.
People may contract Lyme if they are bitten by a blacklegged tick infected with the Borrelia burgdorferi bacteria.
When diagnosing Lyme, most doctors look for the trademark red bull’s-eye rash that develops around the site of the tick bite within a few days or weeks of the bite. But up to half of patients never get a rash.
Other early symptoms include fatigue, fever, headache, muscle and joint pains and swollen lymph nodes. Patients are frequently misdiagnosed with a cold or the flu, which is exactly what happened to Wade.
“I woke up one morning [in December 2012], and I was deathly sick,” recalls Wade, who now lives in North Chesterfield. “Every muscle in my body hurt. I had never had the flu, and I just assumed that’s what it was.”
Wade’s doctor prescribed some medication, thinking she had just caught a wintertime bug. When two weeks had passed and she was still sick, Wade returned to her doctor. Her bloodwork revealed she had Lyme disease.
Wade doesn’t remember the tick bite that gave her Lyme. She speculates that she may have come in contact with a tick while interacting with her dogs.
Unlike so many others, Wade was lucky to receive a positive Lyme test. The routine Lyme tests used by most doctors are notorious for giving false negatives. In fact, it’s such a problem that Virginia legislators passed a new law in 2013 that requires physicians to give patients a written notice, informing them that Lyme testing is “problematic” and “if you are tested for Lyme disease, and the results are negative, this does not necessarily mean you do not have Lyme disease.”
|People may contract Lyme Disease if they are bitten by a blacklegged tick infected with the Borrelia burgdorferi bacteria.|
The most commonly used Lyme tests actually don’t detect the Lyme-causing bacteria at all. Instead, they identify if someone’s immune system has developed antibodies in response to the bacteria. False negatives are common, especially if testing is conducted too soon after the bite, if the patient is on immune-suppressing medications (like prednisone) or if the patient’s immune system is already compromised and isn’t strong enough to make antibodies against the bacteria.
Dr. Cathryn Harbor with Rockbridge Traditional Medicine in Lexington regularly treats patients with chronic Lyme.
“In my opinion, people who get a tick bite, get a rash, get the joint pain and feel horrible have the immune systems that are best able to handle Lyme,” she says.
Then, there is another group of patients who might take weeks or months to develop symptoms after exposure. Those are the patients who suffer the most because the longer they go untreated, the worse the symptoms can become. Some patients even develop life-threatening neurologic and cardiac issues as the bacteria spreads within the body’s tissues and organs.
Because the symptoms of chronic Lyme parallel so many other conditions, it’s often referred to as the “great imitator.” Patients are commonly misdiagnosed with fibromyalgia, rheumatoid arthritis, multiple sclerosis, chronic fatigue syndrome, Parkinson’s disease and others.
When Wade received her diagnosis, she was given a prescription for antibiotics. That should have been the end of her story, but Lyme can be a complicated, pesky illness that’s extremely difficult to stop.
“The key is you have to catch it early, and you have to get the right dosage and duration of treatment and, if any of those are lacking, that’s where chronic Lyme comes into play,” explains Dawn Wilson, leader of the Richmond chapter of the National Capital Lyme Disease Association.
Wade took the antibiotics she was prescribed as directed, and her health seemed to return to normal. But three months later, she began to have unexplained joint pain and vision and memory loss.
“There were some days where I literally could not walk – that I would have to use a wheelchair, and then the next day, [the pain] would be in my shoulder,” Wade says, “It would jump from place to place. I never knew what was going to hurt.”
Wade’s doctor referred her to a rheumatologist, thinking she may have rheumatoid arthritis, but her tests came back negative. Then she was referred to an infectious disease specialist. Again, her bloodwork was normal.
After reading about chronic Lyme disease online, Wade sought out a Lyme-literate medical doctor (LLMD) in northern Virginia. After some extensive, specialized testing, she was diagnosed with chronic Lyme disease.
“For three years, I’ve been alternating pills and antibiotics to get rid of all the bacteria in me,” Wade says. “I’ve technically reached remission at this point.”
Wilson’s battle with chronic Lyme was much longer and more meandering than Wade’s. In 1998, Wilson was doing ecological work for the College of William & Mary.
“I was pulling off a dozen ticks every week and didn’t think anything of it,” says the Henrico County resident.
Months later, she developed unexplained vertigo and joint pain. For eight years, Wilson went from doctor to doctor, looking for answers for why she felt so sick.
“This is eight years of complete misdiagnosis,” she says. “Not a single doctor out of all those general practitioners and neurologists and vestibular [specialists] ever mentioned Lyme.”
In 2006, Wilson was back out in the field doing volunteer work, when she was bitten by a tick. This time, she developed the classic Lyme symptoms without a rash.
But her tests still came back negative.
Fortunately, Wilson was seeing a doctor who knew that Lyme tests often give false negatives, and he diagnosed her with the disease based on clinical symptoms.
Three weeks after starting intravenous antibiotics, Wilson was able to drive again – something she hadn’t been able to do since developing severe vertigo eight years earlier.
“I was a very fortunate case because some people don’t respond that quickly,” she says.
Wilson still takes a maintenance dose of antibiotics to manage her condition.
Along the way, she became leader of the National Capital Lyme Disease Association’s Richmond area support group, and she is a devoted advocate for the chronic Lyme community.
If someone suspects they might have chronic Lyme, she suggests seeking out a LLMD immediately.
“Don’t mess around with your primary care [doctor]; don’t mess around with an infectious disease [specialist],” she advises. “They just don’t have the level of knowledge to properly treat Lyme in terms of duration, dosage and testing as well.”
LLMDs typically utilize more advanced testing and treatments, such as the long-term use of antibiotics, that aren’t endorsed by the traditional medical community. They also test for other tick-borne illnesses, or co-infections, which can be just as bad as or worse than Lyme.
The Lyme Disease Association (lyme diseaseassociation.org) has a database of LLMDs that’s accessible online. The Richmond support group also keeps a list of LLMDs for its members.
“In the Lyme disease world, we use the term ‘remission’ instead of ‘cure,’” Wilson says. “There have been complete success stories. You can recover.”
The Richmond chapter of the National Capital Lyme Disease Association meets on the fourth Saturday of every month from 3-5 p.m. at various Henrico libraries. For more information, visit natcaplyme.org or email Dawn Wilson at email@example.com. Meeting reminders also are posted on the group’s Facebook page, which is listed under the name “Richmond Lyme Alliance & Support.”