Lyme patients slipping through the cracks

tgrubb@newsobserver.comSeptember 28, 2013 

  • What is Lyme disease?

    Lyme disease is caused by the Borrelia burgdorferi bacteria, which was first identified in 1975 in Lyme, Conn., after it infected a group of adults and children.

    The Ixodes scaplaris, or black-legged tick, that carries the bacteria is a native of the Northeast. In the South, it’s called a deer tick, but medical experts disagree about whether the infected ones feed on humans or reptiles and smaller mammals.

    North Carolina is home to 25 different tick species, but only five feed on people: the Lone Star tick, American Dog tick, Brown Dog tick, deer tick and the Gulf Coast tick, a recent migrant. The state used to run a tick-disease surveillance program, but it was cut from the budget in 2011.

    Early Lyme disease symptoms are mild: fatigue, chills, fever, headache, muscle and joint pains, swollen lymph nodes and, sometimes, a red, expanding rash. If left untreated, it spreads to joints, the heart and nervous system. About 20 percent of patients never develop the classic bull’s eye rash, and two-thirds of those who don’t get the rash can develop Lyme-associated arthritis.

    The best way to avoid an infection is to protect yourself with clothing and bug spray outdoors, and check yourself for ticks when you get back, experts said.

  • The co-infection mystery

    Marcia Herman-Giddens, with the Tick-Borne Infections Council of North Carolina, says different ticks can carry and infect humans with several different diseases at once. A patient with several infections – can be difficult to diagnose and treat for Lyme disease, she said.

    N.C. ticks can transmit Rocky Mountain Spotted Fever, Southern Tick-Associated Rash Illness, ehrlichiosis, babesiosis and bartonella, among other diseases, and many co-infections have similar symptoms to Lyme disease.

    Mainstream doctors say chronic Lyme is misleading, because Southern patients aren’t typically exposed to the disease. Lyme advocates point to post-treatment Lyme disease syndrome, which can last for months or years after traditional antibiotic therapy. Roughly 10 percent to 20 percent of patients who meet CDC testing requirements go on to have the syndrome’s lingering muscle and joint pain, cognitive defects and fatigue.

    One theory for Post Treatment Lyme Disease Syndrome is that the immune system continues to fight Lyme disease long after it’s resolved. Another is that patients with weaker immune systems may be more susceptible to lingering effects.

    For more information about Lyme disease, visit:

    • www.ilads.org

    • www.lymeinfo.net

    • www.idsociety.org/Lyme/

  • Fight for equal treatment

    Lyme advocates have taken the fight for the recognition and treatment of chronic Lyme disease to the capital steps, securing laws that protect doctors against medical board reprisals in roughly a dozen states. After a four-year fight, Virginia added a law July 1 that requires doctors to explain how patients can be positive for Lyme but get a negative test result.

    In 2008, Connecticut Attorney General Richard Blumenthal, who was investigating the Infectious Diseases Society of America, settled his antitrust investigation when the panel agreed to revise its Lyme disease guidelines. The probe alleged some IDSA members had undisclosed financial interests in drug, testing and insurance companies, and the panel showed deliberate bias against opposing views.

    N.C. doctor Joseph Jemsek unsuccessfully made the same claims a few years earlier against the N.C. Medical Board and Blue Cross and Blue Shield of North Carolina. Jemsek, who ran a popular Mecklenburg County clinic, defended his Lyme disease treatments in a board hearing and said medical officials were bypassing promising data and therapies to protect insurers’ bottom line. Jemsek sued, but lost his practice, went bankrupt and let his license expire.

    Today, he is a licensed physician and treats chronic Lyme disease in Washington, D.C. and declines interview requests. A statement on the Jemsek Specialty Clinic’s website slams the medical board and Blue Cross for their “unwarranted and highly injudicious actions.”

    “In the opinion of many observers, the NC Medical Board’s unwarranted actions against Dr. Jemsek ... appeared as little more than a deliberate campaign to cripple both his practice and reputation at the hands of a private agenda, by implementing a host of restrictions which would directly conflict with his desire to serve patients to the best of his ability,” the statement said.

— If Kristie Farlow had one wish, she would swim with the manatees.

At 51, the former animal control officer rarely leaves her Hillsborough home. She huddles under fleece blankets or piles on layers of clothing to fight the chills. She keeps her keys and phone close so she doesn’t lose them.

She is lucid and talkative just moments before forgetting what she or you were saying. On bad days, she uses a walker or wheelchair, and can turn overly emotional or rage out of control.

She has had multiple diagnoses from multiple doctors: flu, stroke, fibromyalgia. One doctor prescribed steroids, making it worse. Another medicated her for multiple sclerosis, putting her in a two-week coma, she said. She’s had MRIs and painful spinal taps.

It was years before a Boston doctor confirmed she had Lyme disease.

Twelve years later, the rural Orange County girl who fell in love with horses, earning criminal justice and sociology degrees from UNC-Charlotte, is struggling to stay hopeful.

Every two months for the last year, she and her husband Julian Freeman have traveled out of state for care, bringing home a grocery bag of antibiotics, vitamins and supplements.

“I’m typically extremely private,” Farlow said. But “if there’s anything I can do to save one person, it’s worth it.”

Most N.C. doctors would be skeptical of her diagnosis.

Lyme disease is caused by a bacteria and transmitted to humans through the bite of the black-legged, or deer, tick. Early symptoms are generally mild – fatigue, fever, headache, swollen lymph nodes and, sometimes, a red, expanding rash. Untreated, it can spread to joints, the heart and nervous system.

Widely accepted Infectious Diseases Society of America guidelines call Lyme disease an easily treated problem common in the Northeast and upper Midwest, where the infected deer tick is abundant. In the South, experts disagree on whether it’s a real illness and how to treat it.

As a result, many North Carolina patients are told they’re suffering from old age, a mental health issue or are making it up. If they do find a “Lyme-friendly” doctor, their insurance usually doesn’t pay for “unapproved” treatments.

Farlow’s doctor has run into the controversy before. That’s why he asks patients to keep his name confidential, she said. He coordinates her care with UNC Family Medicine in Hillsborough, but UNC staff declined to comment.

The quandary also has spawned an Internet community of patients, medical professionals and support groups – and an equally passionate community that dismisses chronic Lyme as quackery.

Another medical group – the International Lyme and Associated Diseases Society, or ILADS – has guidelines addressing some of the disputes.

Tick-borne disease

Paul Lantos, an infectious diseases doctor at Duke University Medical Center, helped review the IDSA guidelines as part of the settlement of a 2006 Connecticut antitrust investigation into the group’s policy-making process and undisclosed ties to testing, drug and insurance companies.

In the future, the concern about Lyme in the South might be more valid, but Rocky Mountain Spotted Fever (RMSF) and other tick-borne illnesses are more of a threat now, he said.

“I think there is some human risk here, but it’s very low,” he said. “The important message is we have other really, really important tick-borne diseases in this state, other than Lyme disease. If we’re doing tick awareness here, it should be about the diseases we really do have, that will kill people.”

Last year, the U.S. Centers for Disease Control and Prevention reported 598 RMSF cases in North Carolina compared to 122 confirmed and potential cases of Lyme disease. The state averaged 30 percent fewer cases of Lyme disease in 2010 and 2011. About 95 percent of Lyme cases each year are reported by 13 mostly Northern states. Lantos said about 25 percent of patients who contract RMSF die, compared to CDC reports of nine Lyme disease deaths in North Carolina over the last decade.

Marcia Herman-Giddens, the co-founder of the Tick-Borne Infections Council of North Carolina, which tracks and educates about tick-borne diseases, said different ticks may carry different diseases, and many bites aren’t reported. According to the CDC, about a tenth of U.S. cases are reported each year. The agency is compiling the results of three simultaneous reporting studies to get a more accurate picture, but early estimates indicate the 30,000 cases reported annually may be closer to 300,000.

Three North Carolina counties – Wake, Guilford and Haywood – are considered endemic for Lyme disease. That means at least two confirmed cases were contracted in each, and the tick population is infected with the Lyme-causing bacteria Borrelia burgdorferi. Seven other counties have reported one CDC-confirmed case each.

John McLean, chairman of the Central N.C. Chapter of the National Capital Lyme Disease Association, said state health officials say privately the disease is spreading, but doctors aren’t hearing it. The state’s “very anti-Lyme” attitude is part of the problem, he said.

McLean fought chronic Lyme for eight years after being misdiagnosed with early on-set Alzheimer’s disease. He had flu-like symptoms and was forgetful, confused and fatigued. He was wasting away, dropping from 165 pounds to 127 pounds before he found help. He resolved to join the fight for Lyme recognition if he ever got better.

After a two-year regimen of supplements and antibiotics, he’s in remission but still takes daily supplements and an antibiotic every five weeks. He’s building a second NatCapLyme chapter.

“I feel wonderful. I can play with my grandchildren. I can go fishing,” he said.

Treatments vary

McLean and others support ILADS recommendations that early antibiotics can prevent persistent Lyme disease and should be used until the patient doesn’t need them. Patients also don’t have to meet testing standards to be treated, and tests support a doctor’s judgment, rather than replacing it.

Other doctors report using more unorthodox therapies, from heat and salt to draw out toxins to intravenous hydrogen peroxide, hyperbaric ozone and oxygen treatments.

Lantos said chronic Lyme patients should be treated for each ailment using evidence-based methods. Otherwise, it’s a lot of risk without benefit.

If misused, antibiotics can make patients vulnerable to drug-resistant illnesses or lead to death, he said. Intravenous antibiotics have led to fatal blood clots and infections. There’s also no scientific proof that any of those treatments work, he said.

He recently treated a 16-year-old hospitalized after she saw a different doctor for chronic Lyme, he said. Her family was buying 20 expensive supplements, only available from the doctor, and she was treated with nine different antibiotics. The doctor diagnosed her using an acupuncture test. Lantos said he doesn’t know what the girl had and can’t be sure it was treatment-related, but the girl had almost no blood platelets.

Not every doctor goes to extremes, but Lantos said he has seen other patients whose Lyme turned out to be very serious health conditions.

“There are real deficits in modern medicine that don’t speak to people who have chronic, disabling symptoms that we can’t account for,” he said. “We put them through an incredible ordeal of negative tests, we still can’t tell their problem, we don’t have time to talk with them. It’s a recipe for driving people away from us.”

Testing for Lyme

Both sides agree better testing is important, but that raises more issues.

The CDC uses a two-step test – the EIA and the Western blot – to measure immune system antibodies against Lyme bacteria. If the EIA is positive or inconclusive, the doctor also performs a Western blot test. Both tests must be positive to make the results positive.

Lyme advocates say the bar is too high. The tests only rely on Northeastern ticks, which may carry a different strain, and they are more accurate when a patient been infected for several weeks. Antibiotics, steroids and compromised immune systems can skew the results.

One alternative is a more sensitive blood test for proteins that react to the bacteria, Lyme advocates said. Herman-Giddens, who also works at UNC’s Gillings School of Global Public Health, said better testing is vital for vaccine research, too. It’s tricky, because bacterial spirochetes – corkscrew-shaped bacteria similar to those responsible for syphilis – are evasive and adaptive, she said.

A GlaxoSmithKline vaccine Lymerix was approved in 1998 before controversy and low sales forced its removal from the market.

Lantos said better studies will require more people who test positive for Lyme disease. Many chronic Lyme patients don’t make good test subjects, because they test negative and responded positively to placebos, he said.

Out of money

Farlow said it doesn’t matter who’s right. They’ve run out of money, canceled her appointments and stopped the pills. Her husband’s insurance doesn’t pay the hefty medical or travel bills.

It’s frustrating to watch her suffer as doctor after doctor says there’s nothing they can do, Freeman said.

“I don’t even try to remember the doctor’s name anymore. I just remember what street they’re on,” he said.

They give thanks for family and friends. Farlow’s niece set up a GoFundMe website to help them raise money. And even as many friends pulled away, a few neighbors and teens from the neighborhood and New Horizons Church continue to check in. They affectionately call her “Mama Medea” because of her strange clothes and her no-nonsense advice, Farlow said.

“God has blessed me with all these kids that come up here,” she said. “As much as has been destroyed in my life and taken away from me, God has returned it twenty-fold through these kids.”

Grubb: 919-932-8746

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