Skip to main content

Why you should be afraid of Lyme disease

By Pamela Weintraub, Special to CNN
July 29, 2013 -- Updated 1647 GMT (0047 HKT)
 Lyme is the most frequently reported tick-borne disease in the United States, but only a fraction of cases are reported.
Lyme is the most frequently reported tick-borne disease in the United States, but only a fraction of cases are reported.
STORY HIGHLIGHTS
  • Pamela Weintraub: Her family went through nightmare in grappling with Lyme disease
  • Weintraub: Deep divisions in the medical community hinder real solution on the disease
  • She says it is unclear if Lyme agent stays in patients' bodies even after treatment
  • Weintraub: Scientists need to stop fighting, listen to patients and conduct new studies

Editor's note: Pamela Weintraub is the author of "Cure Unknown: Inside the Lyme Epidemic" (St. Martin's Press), winner of the 2009 American Medical Writers Association book award, and executive editor of Discover magazine. Follow her on Twitter: @pam3001

(CNN) -- Our nightmare began in 1993 after we moved from the city to a house down a winding country road abutting a spruce forest in Chappaqua, New York. Our little woods were home to mice, deer and ticks harboring the infectious agent of Lyme disease.

We weren't especially concerned. As seasoned science journalists, my husband and I had researched the risk of tick-borne disease by reading medical journals, finding a raft of articles on a wave of "Lyme hysteria" sweeping the Northeast suburbs; the disease, some of the authors said, was mild and benign. Perhaps that's why, as one of our sons and then the other got sick, our pediatrician resisted testing for Lyme disease.

When my older son, Jason, 14, developed a mottled rash spreading over his torso in 1998, our doctor's office told us that because it wasn't a literal bull's eye -- believed to be the classic indication of Lyme -- it couldn't be Lyme (a misconception still common today despite voluminous research to the contrary).

Pamela Weintraub
Pamela Weintraub

By 2000, Jason suffered aversion to light, profound fatigue and shooting pain throughout his arms and legs. Mostly to placate me, our pediatrician finally ordered a Lyme disease test. It came back positive.

But our doctor still rejected Lyme disease as the cause, instead proposing a psychiatric disorder. The university-based psychiatrist we then consulted called the pediatrician a quack. Our older son, he said, was physically ill.

My family would spend the next decade struggling to get well. Along the way, we had to navigate one of the most vitriolic fights in medicine. As the scientific community fought over the very nature of Lyme disease, debating everything from who actually had it to what treatment worked best, misdiagnosed patients were left to wander the medical outback without a compass or any clear path back to health.

Caused by the spirochete--a coiled bacterium such as the one that causes syphilis-- Borrelia burgdorferi, Lyme is the most frequently reported tick-borne disease in the United States. In 2011, some 33,000 cases met the Centers for Disease Control and Prevention's definition. But there are far more patients with the infection since only a fraction of cases are reported.

When doctors attuned to the CDC's rigorous definition resist diagnosing any but the most classic patients -- those with an obvious Lyme rash or highly positive test -- it means patients are left to advance to later, harder-to-treat stages of the disease.

Adding to the mess, physicians frequently fail to test for other, often-debilitating infections from the same black-legged ticks: Babesia, the cause of a malaria-like illness; Anaplasma, an intracellular bacterium; and another spirochete, Borrelia miyamotoi, recently documented as the cause of a relapsing-remitting Lyme-like disease.

In fact, there is a lot of confusion over what may or may not be causing Lyme and other tick-borne diseases around the United States.

In California, scientists have found several new spirochetes yet to be vetted as sources of Lyme-like illness, and researchers in Florida just isolated Lyme spirochetes from ticks despite CDC's website saying not to worry.

Then there's the smackdown over chronic Lyme: Do Lyme patients stay sick following treatment because the infection is still there?

In the 1990s, the National Institutes of Health sought to answer the question by funding a series of studies, the first of which has informed the treatment guidelines published by the Infectious Diseases Society of America ever since. That study monitored 136 Lyme patients who remained chronically ill after antibiotic therapy. In other words, they still showed symptoms of the illness. And yet some 700 blood and spinal fluid samples taken from them yielded no hint of the spirochete.

On one side, experts embraced this small study as proof that chronic Lyme was a myth. They believed the sickness had to be caused by something else since patients showed no sign of the spirochete.

But patients and their doctors were unconvinced. Spirochetes leave body fluids for tissue early in the course of disease, after all, explaining lack of evidence in blood. And researchers had reported persistent spirochetes in the tissue of treated mammals for years.

To resolve the mystery, the NIH commissioned similar experiments with rhesus monkeys. Instead of searching monkey blood for DNA after antibiotic treatment, the researchers would sacrifice the animals and scour their tissue for signs of the Lyme spirochete, including the RNA that is a surer sign of active disease. The monkey studies, published in 2012 by scientists at Tulane, document the presence of Borrelia burgdorferi DNA and RNA following aggressive antibiotic treatment. When uninfected ticks fed on those treated monkeys, they literally ingested intact spirochetes -- proof that the organism remained.

Are small numbers of living spirochetes driving persistent symptoms? Scientific resolution has yet to come, but even the NIH has seen fit to ask the question, launching an ongoing study that tests the ability of treated patients to transmit living Lyme spirochetes to biting ticks.

Despite so many unknowns, continued insistence that Lyme patients are mentally ill has been a drumbeat in our Lymelands, creating a stigma that hampers treatment or the chance of getting well. What we need here, the Institute of Medicine has suggested, is a "process of conflict resolution" to create "a new environment of trust." Progress in research can only happen if the key stakeholders -- the patients -- are included in the work.

Some groups have tried: In June, the National Institute of Standards and Technology held a meeting to help develop better tests. This is a crucial endeavor since standard tests based on legacy technology pick up real patients between just 45% and 75% of the time, especially in the early phase of the disease. Patients and scientists worked together on the NIST event, but collaboration has often been difficult if not impossible to achieve. For instance, a group of scientists has lobbied against federal legislation to increase funding for Lyme disease research. Why? That's just counterproductive.

Powerful 21st-century technologies can help us, but first we've got to admit that waters are muddy and urgent questions remain. Calling patients "Lyme-loonies" or "part of an anti-science movement that denies both the viral cause of AIDS and the benefits of vaccines," is hurtful and untrue. After all, questioning the value of research that keeps one locked in illness is hardly on par with denying HIV. The real science deniers are those circling the wagons around outdated studies, leaving patients desperate and sick while protecting their academic turf.

Follow us on Twitter @CNNOpinion.

Join us on Facebook/CNNOpinion.

The opinions expressed in this commentary are solely those of Pamela Weintraub.

ADVERTISEMENT
Part of complete coverage on
July 22, 2014 -- Updated 1356 GMT (2156 HKT)
Ukraine's president says the downing of MH17 was a terrorist act, but Richard Barrett says it would be considered terrorism only if it was intentional
July 22, 2014 -- Updated 2015 GMT (0415 HKT)
Robert McIntyre says the loophole that lets firms avoid taxes should be closed
July 22, 2014 -- Updated 1928 GMT (0328 HKT)
Aaron Miller says Kerry needs the cooperation of Hamas, Israel, Egypt and others if he is to succeed in his peacemaking efforts
July 22, 2014 -- Updated 1535 GMT (2335 HKT)
Jeronimo Saldana and Malik Burnett say Gov. Perry's plan to send National Guard to the border won't solve the escalating immigration problem.
July 22, 2014 -- Updated 1742 GMT (0142 HKT)
Sally Kohn: The world's fish and waters are polluted and under threat. Be very careful what fish you eat
July 22, 2014 -- Updated 1242 GMT (2042 HKT)
Les Abend says threat information that pilots respond to is only as good as the intelligence from air traffic controllers. And none of it is a match for a radar-guided missile
July 21, 2014 -- Updated 1235 GMT (2035 HKT)
Frida Ghitis: Anger over MH17 is growing against pro-Russia separatists. It's time for the Dutch government to lead, she writes
July 21, 2014 -- Updated 1227 GMT (2027 HKT)
Julian Zelizer says President Obama called inequality the "defining challenge" of our time but hasn't followed through.
July 21, 2014 -- Updated 1157 GMT (1957 HKT)
Gene Seymour says the 'Rockford Files' actor worked the persona of the principled coward, charming audiences on big and small screen for generations
July 21, 2014 -- Updated 1417 GMT (2217 HKT)
Daniel Treisman says that when the Russian leader tied his fate to the Ukraine separatists, he set the stage for his current risky predicament
July 18, 2014 -- Updated 1642 GMT (0042 HKT)
Andrew Kuchins says urgent diplomacy -- not sanctions -- is needed to de-escalate the conflict in Ukraine that helped lead to the downing of an airliner there.
July 19, 2014 -- Updated 0150 GMT (0950 HKT)
Jim Hall and Peter Goelz say there should be an immediate and thorough investigation into what happened to MH17.
July 18, 2014 -- Updated 1507 GMT (2307 HKT)
Pilot Bill Palmer says main defense commercial jets have against missiles is to avoid flying over conflict areas.
July 20, 2014 -- Updated 1755 GMT (0155 HKT)
Valerie Jarrett says that working women should not be discriminated against because they are pregnant.
July 21, 2014 -- Updated 1953 GMT (0353 HKT)
David Wheeler says the next time you get a difficult customer representative, think about recording the call.
July 18, 2014 -- Updated 1933 GMT (0333 HKT)
Newt Gingrich says the more dangerous the world becomes the more Obama hides in a fantasy world.
July 18, 2014 -- Updated 1011 GMT (1811 HKT)
Michael Desch: It's hard to see why anyone, including Russia and its local allies, would have intentionally targeted the Malaysian Airlines flight
July 17, 2014 -- Updated 1914 GMT (0314 HKT)
LZ Granderson says we must remember our visceral horror at the news of children killed in an airstrike on a Gaza beach next time our politicians talk of war
July 17, 2014 -- Updated 1206 GMT (2006 HKT)
Sally Kohn says now the House GOP wants to sue Obama for not implementing a law fast enough, a law they voted down 50 times, all reason has left the room.
July 17, 2014 -- Updated 1214 GMT (2014 HKT)
A street sign for Wall Street
Sens. Elizabeth Warren, John McCain and others want to scale back the "too big to fail" banks that put us at risk of another financial collapse.
July 17, 2014 -- Updated 2016 GMT (0416 HKT)
Newt Gingrich writes an open letter to Robert McDonald, the nominee to head the Veterans Administration.
July 18, 2014 -- Updated 1601 GMT (0001 HKT)
Paul Begala says Dick Cheney has caused an inordinate amount of damage yet continues in a relentless effort to revise the history of his failures.
July 18, 2014 -- Updated 1404 GMT (2204 HKT)
Kids who takes cell phones to bed are not sleeping, says Mel Robbins. Make them park their phones with the parents at night.
July 17, 2014 -- Updated 1729 GMT (0129 HKT)
Buzz Aldrin looked at planet Earth as he stood on talcum-like lunar dust 45 years ago. He thinks the next frontier should be Mars.
July 16, 2014 -- Updated 1804 GMT (0204 HKT)
Mark Zeller never thought my Afghan translator would save his life by killing two Taliban fighters who were about to kill him. The Taliban retaliated by placing him on the top of its kill list.
July 17, 2014 -- Updated 1518 GMT (2318 HKT)
Jeff Yang says an all-white cast of Asian characters in cartoonish costumes is racially offensive.
July 17, 2014 -- Updated 0124 GMT (0924 HKT)
Gary Ginsberg says the late John F. Kennedy Jr.'s reaction to an event in 1995 summed up his character
July 16, 2014 -- Updated 1641 GMT (0041 HKT)
Meg Urry says most falling space debris lands on the planet harmlessly and with no witnesses.
ADVERTISEMENT