Up tick: Why you should be worried about Lyme disease

Scuttle aside, cockroaches. You're losing your spot as the most feared insect in Virginia, and your competition doesn't even look that scary. So tiny it can scarcely be seen, the black-legged tick doesn't move fast, it doesn't have a nauseating shiny shell, it doesn't even have antennae to inspire revulsion. No matter. Its fear factor comes from its status as host to a disease that, if left untreated, can permanently disable.

Jo Ann Freeman knows first hand. The retired computer software manager was looking forward to an early retirement spent traveling, gardening, and fixing up a historic Afton home. Instead, she spent nearly four years bedridden, unable to summon the energy to make a phone call. Her teeth chattered, her hands shook, and she had such severe cognitive deficits that she could no longer even read. Worst of all, no one could tell her what was wrong.

"The tests were negative for everything," says Freeman. "I thought I was dying."

After a nearly five-year medical journey that would eventually take her out of Virginia, Freeman was finally diagnosed with not one but two tick-borne illnesses including Lyme disease.

Freeman's not the only Central Virginian who's experienced the serious aftermath of an untreated Lyme infection, and Lyme cases are on the rise.

According to a recent warning by the Virginia Department of Health, Lyme is now the state's most common tick-borne illness; and it has increased eight-fold in the Charlottesville area in just two years. In the Thomas Jefferson Health District, cases have risen from eight in 2007 to 66 in 2009, the last year with available statistics. The Centers for Disease Control and Prevention reports that the number of undiagnosed cases could be at least 10 times higher.

 The disease may be best known for starting with a bullseye rash around a tick bite. But Lyme sufferers say the disease is sneaky, with less than half of those infected recalling any tick bite or rash. Such clues would allow prompt and effective early treatment with antibiotics. If it escapes early detection, sufferers say, the disease moves far beyond fever and joint pain, with injuries compounded by a war over diagnosis.

Over the past 20 years, doctors have divided into two camps over the treatment of chronic Lyme disease. Dubbed the "Lyme Wars" by media in the Northeast, where Lyme was first identified in the mid-1970s, the intellectual battle pits physicians who believe the bacteria that cause Lyme can be eradicated quickly with antibiotics no matter how long the infection has existed against a smaller and less conventional group who claim that latter stages of Lyme constitute an unrecognized and nearly untreatable epidemic that requires radical medical intervention. Some in the latter camp even suggest that Lyme could be responsible for Chronic Fatigue Syndrome and could lead to Alzheimer's and other neurodegenerative diseases whose causes have thus far eluded researchers.

As the Lyme Wars rage, patients like Jo Ann Freeman struggle to find someone who'll believe that their crippling illness isn't all in their head.
 

A weird rash
Six years ago, Freeman was leading a life many would envy. A former computer software manager, she and her husband had retired to a 75-acre historic property in western Albemarle and were enjoying gardening and renovating the hundred-year-old English cottage style house.

In February 2005, when Freeman returned home from a vacation, she noticed an unusual rash on her rib cage and went to her doctor. Although she didn't recall being bitten by a tick, she says, she had heard of Lyme Disease and asked the doctor if her rash– which was black and not in a bullseye form– might be related.

"He told me we don't have Lyme in Virginia," recalls Freeman, now 61, who nonetheless demanded she be tested for the disease. The result was negative, and while the rash eventually cleared, over the next few months she developed increasingly serious health problems including a tremor, insomnia, arthritis, exhaustion, memory loss, and vision problems.

"I went days without sleep," says Freeman, who says she became a recluse and even lost the ability to read. "I couldn't comprehend what was on the page," she says. "I couldn't hold a conversation."

Convinced she was dealing with an infection, she finally demanded that her doctor prescribe an antibiotic. She improved slightly, she says, but continued to suffer from neurological symptoms including the sensation that her brain was "vibrating."

After an MRI showed lesions in her brain, a neurologist suspected but couldn't confirm Multiple Sclerosis– an incurable neurodegenerative disease– but again insisted it couldn't be Lyme because Freeman didn't have the elevated white blood cell count that typically accompanies such a bacterial infection.

Determined to find the root of her illness, Freeman says, she returned to an infectious disease specialist in Washington, D.C., whom she had previously consulted. This time, based on the lesions revealed by the MRI, Freeman says the specialist confirmed her original self-diagnosis and told her the lesions were "neuroborreliosis," a condition caused by the bacteria that cause Lyme Disease.

Six weeks of intravenous antibiotics that the specialist prescribed again yielded only slight improvement in her condition, says Freeman. By this point, the specialist declined to order further medical tests and referred her instead to another type of doctor: a psychiatrist.

It would be another three years before Freeman finally learned the extent of her illness.

History of Lyme
In 1975, parents in Lyme, Connecticut, alerted health authorities to a cluster of young children who'd developed pain and swelling in their joints– what appeared to be rheumatoid arthritis. According to the Connecticut Department of Health website, within two years of those first unusual symptoms, 51 cases of the by-then-named Lyme disease were confirmed. However, it would be five more years before the bacterium that causes the illness– Borrelia burgdorferi– was identified and the mode of transmission– tick bite– determined.

By the mid-'80s, Lyme disease was being diagnosed frequently throughout the Northeast, and doctors were recognizing that, if left untreated, it could have some nasty neurological effects like the ones Freeman would experience. Making diagnosis of chronic Lyme even more difficult is that the symptoms are so diverse: exhaustion, tremor, cognitive deficits. They can mimic many other diseases and can emerge over years.

That, says Freeman, is why educating doctors on the full range of tick-borne illnesses is critical– especially in light of statistics showing the increase in cases and the research that suggests as many as two-thirds of Lyme sufferers are co-infected by another tick-borne illness (including the parasitic infection Babesiosis, and bacterial infections Ehrlichiosis and Bartonellosis). Research conducted at UVA suggests that tick bites can even prompt a mammal meat allergy that can lead to anaphylactic shock. If the co-infections– which can cause similar symptoms to Lyme– aren't diagnosed and properly treated, the patient won't get well.

Faced with the possibility of so many tick-borne diseases, one might be tempted to trade a hike to Humpback Rock for staying indoors watching 30 Rock. But UVA pediatric infectious disease specialist Owen Hendley says that understanding the tick life cycle– and practicing basic prevention– can offer significant protection.

Adult ticks meet and mate on deer, feed on their blood, then, engorged, fall off and lay eggs. The eggs hatch, and in the larval stage, they feed on small rodents including mice and chipmunks, which often carry borrelia. The tick's next life cycle– the nymph stage– poses the greatest risk to humans, says Hendley.

"They look like a dot," says Hendley, explaining why people wouldn't even notice they if they had a nymph attached, thus allowing it to feed long enough to transmit disease.

Keeping grass short and animal populations under control can limit the number of ticks to which you're exposed. And even if you are bitten by an infected tick, you won't necessarily become infected. Numerous medical sources including the CDC and the Virginia Department of Health say a tick must be attached for 36 to 48 hours in order to transmit Lyme and other illnesses.

The problem is, if you do get a tick bite, you may not even know it.

According to statistics from the International Lyme and Associated Diseases Society– an organization founded by those who favor the unconventional treatment of Lyme– fewer than 50 percent of Lyme-infected individuals remember getting bitten. As for the supposed classic bullseye rash that appears after infection, according to ILADS, it's not the most common early expression of infection. Instead, atypical rashes– including the one Freeman experienced– are more common, and in some cases, there's no rash at all. That means that the typical earliest symptoms of Lyme, joint pain and fatigue, could be confused with other illnesses including Chronic Fatigue or dismissed as nothing serious for months or even years.

Adding to the diagnosis difficulty is that the main blood test used to screen for Lyme misses a whopping 30 percent of cases, according to ILADS data.

Finally diagnosed
Three years after her psychiatric referral, Freeman says, her physical condition was worsening. A second MRI showed new brain lesions; but this time, she says, her neurologist told her it wasn't MS. With the neurologist unable to give her a diagnosis, Freeman says, her psychiatrist recommended she contact ILADS to get a referral to a "Lyme literate" physician, one who specializes in the treatment of Lyme Disease and other tick-borne illnesses.

The Baltimore-based doctor to whom she was referred ordered a different test called the Western Blot. This time, Freeman tested positive for both Lyme Disease and a malaria-like parasitic infection called Babesia.

"It took four and a half years and 15 doctors to get a diagnosis," says Freeman, who says she has now mostly recovered after lengthy treatment for both illnesses.

Freeman isn't the only Central Virginian who struggled to find a diagnosis.

Six years ago, Emily Tinsley, a mother of two children, noticed she'd developed disturbing neurological symptoms including numbness in her arms and memory loss. Like Freeman, Tinsley didn't recall a tick bite or a rash. But having grown up in Massachusetts, where Lyme has been endemic for decades, she asked her doctor to be tested. Like Freeman's, Tinsley's first test came back negative, but over the next two years she became sicker as she searched with increasing desperation for diagnosis and treatment.

"I couldn't work, couldn't drive, couldn't read, couldn't use a computer," says Tinsley, who says she was enraged by one doctor's suggestion. "He said I was a neurotic mother," she recalls, "that I was just stressed out."

Tinsley, however, is a nurse with a masters degree. And as the wife of Dave Matthews Band fiddler Boyd Tinsley, she had the money to seek out-of-state medical care. Tinsley began traveling once a month to New York, where a Lyme-literate doctor ran the Western Blot test and diagnosed her with both Lyme Disease, Babesiosis and a third tick-borne bacterial infection, Bartonellosis.

While she says long-term antibiotics have restored her health, Tinsley joins Freeman in expressing outrage that it took years and thousands of dollars to find a diagnosis– and that even with the diagnosis in hand, insurance wouldn't cover the extensive antibiotic treatment because it's considered outside standard treatment guidelines.

"I had the resources to pay," notes Tinsley. "Most people don't."

Financial resources seem to have played a role in the case of Gerry Danner. A longtime Charlottesville restaurateur who launched such popular eateries as the Blue Moon Diner and Dr. Ho's Humble Pie, Danner says he contracted Lyme Disease nearly 14 years ago while living on a farm in Albemarle County.

Danner says the illness forced him from his career, and without insurance or a steady income, he couldn't afford out-of-state travel for treatment. 

"I lost my life," says Danner. "It's like the flu, and it only gets worse," he says, recalling chills, fever, and a loss of appetite. Even worse, he says, were the cognitive symptoms.

"Your brain feels fogged where you just can't think," he says. "People ask questions, and you can't come up with the answers. Generally, you don't fit in anymore."

Danner, 55, scoffs at health experts who say Lyme wasn't in Virginia back in the 1990s.

"My dog got it, and she died the same summer I got sick," says Danner, who tested positive about three and a half years after he first became ill with arthritislike symptoms.

Danner says he went on antibiotics for five years but only grew sicker, suffering from constant headaches, muscle aches, arthritis-like symptoms in all his joints. He says that he suffered until several months ago, when he began treating himself according to a 19th century physician's salt treatment for syphilis. (Like Lyme Disease, syphilis is caused by a spirochete that eventually invades the brain.)

"It all sounds like gooey granola stuff, and I would have doubted it years ago," he says. "But it works."

Danner says he's now well enough that he's planning to open a new eatery– his seventh. "I've got time to make up for," he says.

UVA doctor Hendley, however, says there's no scientific evidence that patients who pursue treatments outside the mainstream will be cured, even by extended prescription drug treatments.

Controversy
"Prolonged antibiotic therapy doesn't provide any benefit," says Hendley, who cites several studies in which patients with verified Lyme-caused neurological symptoms showed no improvement despite three months on antibiotics.

Hendley holds the mainstream medical opinion that once a patient is treated with a short course of antibiotics, the Lyme-causing bacteria is killed– even if the patient has been infected for years. He readily acknowledges that chronic Lyme exists, but he says symptoms that persist after guideline-approved antibiotic therapy are not caused by ongoing infection but are instead "Post Lyme Syndrome," possibly caused by an extended immune system reaction.

"We don't know what it is," Hendley acknowledges.

New York-based internist and epidemiologist Daniel Cameron says he does know. The immediate past president of ILADS, Cameron, who practices in the north-of-Manhattan village of Mount Kisco, contends that the studies Hendley cites are flawed because they didn't incorporate the full range of needed treatments.

"We always need to address the symptoms with not just the antibiotics," he says. "We need to manage their fatigue, their loss of function, the dizziness, other symptoms, as well as the emotional side of being sick for nine years," which Cameron says is the average time Lyme sufferers have been sick before arriving at his clinic.

Cameron asserts that the biggest challenge in treating Lyme and other tick-borne illnesses is diagnosing them in the first place and determining whether any co-infections are present. More accurate testing is needed, he says, as is a way to determine definitively whether the bacterial infection is still active after treatment.

"There's no test for that," he says. "That's why there's controversy."

Whether longterm antibiotics are helpful or dangerous to patients with Lyme may be debatable. Prescribing them, however, is undoubtedly dangerous to the physician, who may face loss of his medical license if he doesn't follow official treatment guidelines set out by organizations including the Infectious Disease Society of America. North Carolina physician Joe Jemsek learned the hard way.

In 2006, Jemsek faced sanctions from that state's medical board for prescribing longterm intravenous antibiotics for his Lyme patients. Despite acclaim he received in the early 1980s for diagnosing one of North Carolina's first HIV cases, he was stripped of his right to treat Lyme sufferers– an experience featured in a 2008 documentary called Under Our Skin. In the film, numerous Lyme literate doctors report threats from their state medical boards after prescribing long-term antibiotics.

Jemsek has since relocated his practice to Washington, D.C., and a phone call requesting comment was returned by his attorney.

"He's a pioneer and ahead of his time," says the attorney, Susan Green, who says she has advised Jemsek to refrain from public statements. "He needs to stay focused on what he does, which is treating his patients."

How bad is it here?
Local physicians, such as Carlos Armengol of Pediatric Associates, say that Lyme is a growing problem.

"We see both the kids who have the classic bullseye rash and a lot who come in with swollen joints, particularly swollen knees," says Armengol, noting that prompt antibiotic treatment has cleared the symptoms and that none of his youthful patients have developed symptoms of chronic Lyme.

"I see it all the time," says Greg Gelburd, of Downtown Family Health Care, estimating he diagnoses at least one Lyme case every week. Most resolve quickly with antibiotics, but he's seen several patients suffering from chronic Lyme. For Gelburd, awareness is key, and he suggests making prevention measures a part of any routine.

"Whenever you take a walk, put sunblock on before," he says. "And when you get home, check for ticks."

In spite of their nightmarish experiences with tick-borne diseases, sufferers Tinsley and Freeman say they're not suggesting that everyone stay inside for the summer. But educating the public is important, and educating doctors– particularly at a teaching hospital like UVA– they say, is critical.

A vaccine was available in the late 1990s, but according to the CDC, it was discontinued in 2002 by the manufacturer, who blamed low demand. Freeman hopes to see a new vaccine emerge– and better surveying of how many ticks are actually carrying Lyme and other infections in Virginia.

In fall 2010, Governor Bob McDonnell convened a Lyme Disease Task Force aimed at increasing awareness and improving treatment options.

"We don't appear to have any information about what's in the woods or the grass," Freeman told the governor's Task Force in March.

And she says she hopes the days of local physicians feeling the need to refer their Chronic Lyme suffering patients to out-of-state doctors will soon end.

"Can you imagine having to travel to New York for your healthcare?" she asks. "It's not Ebola we're talking about here. It's the fastest growing tick-borne illness in the country."

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Clarification: The lead paragraph of this story implies that ticks are insects. They're actually arachnids, joint-legged invertebrates which fall in a different class of animals from insects.