Does Chronic Lyme Disease Exist?

No one could pinpoint why 16-year-old Kelly Eisenhart, an accomplished athlete, was mysteriously deteriorating. Plagued by increasing fatigue, the once-competitive high school athlete could no longer get out of bed and was inexplicably gaining weight. But it wasn't until she became confused on her daily walk home from high school -- unable to find the only house she'd ever lived in -- that the situation became alarming.

It took 10 doctors and a blood test to confirm she was living with Lyme disease.

Chronic Controversy

Eisenhart is one of a growing number of patients who say they suffer from chronic Lyme disease. More than a decade after being bitten by an infected tick, the 29-year-old still has moments when she has to push herself to complete even the most basic daily tasks, and she contends with ongoing arthritis and swelling. For seven years, Eisenhart took a combination of intravenous antibiotics and herbal medications to tamp down her symptoms, hoping to finally quash the germ that made her so sick.

There's only one problem: The mainstream medical community doesn't recognize a diagnosis of chronic Lyme disease, nor does the Centers for Disease Control and Prevention, the country's chief public health agency. Instead, the CDC says patients whose fatigue, pain and other symptoms last longer than six months have Post-Treatment Lyme Disease Syndrome, despite having completed the typically curative two- to four-week antibiotic regimen.

The controversy is more than just a name game. Supporters of chronic Lyme disease believe patients' stubborn symptoms are due to persistent or new infections caused by Borrelia burgdorferi -- the bacterium that triggers Lyme. As a result, "Lyme literate doctors" often prescribe long-term antibiotic treatments for patients like Eisenhart at a time when antibiotic overuse is being blamed for spawning drug-resistant superbugs.

"Our general recommendation [is] to avoid long courses of antibiotic therapy," which can be dangerous, says Dr. Paul Mead, chief of epidemiology and surveillance for the CDC's Lyme disease program. In fact, four clinical trials funded by the National Institutes of Health found no evidence that extended antibiotic therapy is beneficial or safe for patients whose health woes persist after being treated for Lyme disease, Mead adds.

Meanwhile, the CDC says it isn't known why a percentage of Lyme sufferers go on to develop PTLDS, but it states on its website that most medical experts believe the culprit is a reaction produced by a patient's own body, or "residual damage to tissues and the immune system that occurred during the infection" -- not B. burgdorferi itself.

This distinction is important, experts say, since it concerns not only the root cause of symptoms but the best treatment options. The CDC cites " time," for example, as generally being the best medicine for those suffering from PTLDS. What's more, Mead adds, because the symptoms of Lyme disease can mimic many other infections, such as the food-borne illness campylobacter and the sexually transmitted infection chlamydia, a diagnosis of "chronic" Lyme disease risks overlooking the real culprit.

"In some cases, it turns out patients had an entirely different disease," Mead says. "That's another harmful effect ... a pitfall of chronic Lyme disease diagnosis."

For reasons not entirely clear, Lyme disease is on the rise nationwide, according to health officials. Over 35,000 cases are reported to the CDC annually, and likely hundreds of thousands more infections are going undocumented, Mead says. Although the CDC says most cases of Lyme disease are successfully treated with antibiotics given over the course of a few weeks, the agency warns that the consequences of untreated Lyme disease can be severe, since the infection can invade the joints, heart and even the nervous system.

The dispute over why some patients experience chronic health problems even after receiving treatment is expected to continue, especially as the prevalence of Lyme disease grows.

Dr. Samuel Shor, chair of the Loudoun County Lyme Commission and associate clinical professor of medicine at George Washington University Health Care Sciences in the District of Columbia, is among the handful of medical professionals who believe the disease itself can be chronic, caused by ongoing or new infection by B. burgdorferi -- not a patient's overactive immune system. Complicating matters, he says, is that the blood test used to diagnose patients with Lyme disease isn't always accurate, meaning people could be told they are infection-free when that is not the case.

"The paradox is that the immune system is suppressed by the disease, which the blood test is screening for," Shor explains. "Even if you've got bona fide Lyme disease, 1 out of every 2 patients is going to be told they don't have it."

The CDC recommends a two-step test to detect Lyme disease. The first step uses what's called an enzyme immunoassay, which is essentially a blood test. If negative, no further testing is recommended. If positive, the second step is an immunoblot test, in which bands appear if antibodies react to the presence of B. burgdorferi bacterium in ways not captured by the previous method. If both test results are positive, a Lyme diagnosis is made.

"The suggestion that testing is completely unreliable ... that's really not the case. Lyme disease testing is a serologic test," Mead says. That means in the early days of infection, the immune system hasn't had a chance to produce the antibodies to be detected by a test, he explains. Therefore, Mead says it's possible in the first few weeks of illness for a patient with legitimate Lyme disease to test negative. However, after a month or so of infection, the body should develop an immune response, and thus those with chronic Lyme disease should be captured.

"For patients who are ill for months or years -- if the illness is really caused by [B. burgdorferi] -- it's very likely they should test positive for the disease," he says.

Still, Shor says his medical colleagues nationwide shouldn't be so quick to write off the notion that chronic Lyme disease exists, since some patients continue exhibiting symptoms in the absence of a positive result.

Until better tests are developed, Shor will continue looking for alternative ways to diagnose and treat patients with chronic Lyme disease, and he encourages clinicians to use their best judgment, based on the guidelines drafted by the International Lyme and Associated Diseases Society, a nonprofit medical society.

However, the CDC maintains its position on the diagnosis and treatment of Lyme disease, and Mead feels it's irresponsible for a diagnosis of chronic Lyme disease to be made. "Patients are suffering and it's understandable they're looking for an answer, and people get very passionate about it," Mead explains. "The problem is sometimes they're getting information that isn't all that right."

Disagreement surrounding chronic Lyme disease has been so intense that patient advocates have lobbied legislators to secure funds for further research into the perplexing condition.

Blocking the Bite

All this debate is of little consequence to patients craving resolution, like Emily Levy, 21, of Newport, Rhode Island, who despite receiving long-term antibiotics through a peripherally inserted central catheter -- or PICC line -- in her arm, says she still suffers from "Lyme brain" that causes her to space out and forget what she is doing.

But resolution isn't likely to come anytime soon. "[Chronic Lyme disease] is a controversial subject. It's been controversial ever since I got involved with it over 25 years ago," says Monte Skall, executive director of the National Capital Lyme and Tick-Borne Disease Association in Virginia. "There's been no agreement on diagnosis or treatment."

One of the group's central missions is to bring people together to promote research into the chronic nature of the disease. Until more is known, the best -- and virtually only -- defense is to prevent tick bites altogether, and if bitten, to be vigilant for symptoms.

If you suspect a tick has bitten you, Skall urges the following actions:

-- Save and test the tick. "So many people throw away the tick and don't realize that all of that information lies within the tick you might have been exposed to," Skall says. Deer ticks carry B. burgdorferi. Beyond Lyme disease, there are many other tick-borne infections people can fall prey to.

-- Remove it properly. "Don't use nail polish, petroleum jelly or light a match," Skall says. This can cause the tick to essentially regurgitate disease into your blood stream, she explains. Instead, use fine-tipped tweezers as close to the skin as possible to grasp the tick, and pull up. Clean your hands and the skin with alcohol.

-- Keep watch for symptoms. Early signs of Lyme disease include fever or chills, headaches, fatigue, and muscle and joint pain. Some patients develop a bull's-eye skin rash, which can appear within three to 30 days of infection. It usually precedes a fever, according to the CDC website.

If you're living with Lyme disease, Levy recommends finding a support group. Today, she's working on a startup called PICCPerfect -- a line of functional and fashionable medical accessories for anybody who requires a PICC line. The budding business allows Levy to focus on something positive and help others. Her blog, LymeintoLemonAid, also enables people with Lyme disease to connect and share their stories.

As for Eisenhart, she is now considered to be in remission, although she still doesn't feel quite like her pre-illness self. "This disease is more devastating than people will ever understand unless they have it," Eisenhart says. "It was the fight of my life; it was the hardest thing I'll ever do."

Samantha Costa is a Health + Wellness reporter at U.S. News. You can follow her on Twitter, connect with her on LinkedIn or email her at scosta@usnews.com.