Skip to main content

Why you should be afraid of Lyme disease

By Pamela Weintraub, Special to CNN
updated 12:47 PM EDT, Mon July 29, 2013
 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
updated 8:21 AM EDT, Mon September 1, 2014
Carlos Moreno says atheists, a sizable fraction of Americans, deserve representation in Congress.
updated 12:25 PM EDT, Sun August 31, 2014
Julian Zelizer says Democrats and unions have a long history of mutual support that's on the decline. But in a time of income inequality they need each other more than ever
updated 12:23 AM EDT, Sun August 31, 2014
William McRaven
Peter Bergen says Admiral William McRaven leaves the military with a legacy of strategic thinking about special operations
updated 12:11 PM EDT, Fri August 29, 2014
Leon Aron says the U.S. and Europe can help get Russia out of Ukraine by helping Ukraine win its just war, sharing defense technologies and intelligence
updated 1:24 PM EDT, Fri August 29, 2014
Timothy Stanley the report on widespread child abuse in a British town reveals an institutional betrayal by police, social services and politicians. Negligent officials must face justice
updated 9:06 PM EDT, Fri August 29, 2014
Peter Bergen and David Sterman say a new video of an American suicide bomber shows how Turkey's militant networks are key to jihadists' movement into Syria and Iraq. Turkey must stem the flow
updated 11:54 AM EDT, Mon September 1, 2014
Whitney Barkley says many for-profit colleges deceive students, charge exorbitant tuitions and make false promises
updated 10:34 AM EDT, Fri August 29, 2014
Mark O'Mara says the time has come to decide whether we really want police empowered to shoot those they believe are 'fleeing felons'
updated 10:32 AM EDT, Thu August 28, 2014
Bill Frelick says a tool of rights workers is 'naming and shaming,' ensuring accountability for human rights crimes in conflicts. But what if wrongdoers know no shame?
updated 10:43 PM EDT, Thu August 28, 2014
Jay Parini says, no, a little girl shouldn't fire an Uzi, but none of should have easy access to guns: The Second Amendment was not written to give us such a 'right,' no matter what the NRA says
updated 1:22 PM EDT, Sat August 30, 2014
Terra Ziporyn Snider says many adolescents suffer chronic sleep deprivation, which can indeed lead to safety problems. Would starting school an hour later be so wrong?
updated 9:30 AM EDT, Fri August 29, 2014
Peggy Drexler says after all the celebrity divorces, it's tempting to ask the question. But there are still considerable benefits to getting hitched
updated 2:49 PM EDT, Fri August 29, 2014
The death of Douglas McAuthur McCain, the first American killed fighting for ISIS, highlights the pull of Syria's war for Western jihadists, writes Peter Bergen.
updated 6:42 PM EDT, Tue August 26, 2014
Former ambassador to Syria Robert Ford says the West should be helping moderates in the Syrian armed opposition end the al-Assad regime and form a government to focus on driving ISIS out
updated 9:21 AM EDT, Wed August 27, 2014
Ruben Navarrette says a great country does not deport thousands of vulnerable, unaccompanied minors who fled in fear for their lives
updated 9:19 AM EDT, Wed August 27, 2014
Robert McIntyre says Congress is the culprit for letting Burger King pay lower taxes after merging with Tim Hortons.
updated 7:35 PM EDT, Tue August 26, 2014
Wesley Clark says the U.S. can offer support to its Islamic friends in the region most threatened by ISIS, but it can't fight their war
updated 4:53 PM EDT, Tue August 26, 2014
America's painful struggle with racism has often brought great satisfaction to the country's rivals, critics, and foes. The killing of Michael Brown and its tumultuous aftermath has been a bonanza.
updated 3:19 PM EDT, Tue August 26, 2014
Rick Martin says the death of Robin Williams brought back memories of his own battle facing down depression as a young man
updated 11:58 AM EDT, Tue August 26, 2014
David Perry asks: What's the best way for police officers to handle people with psychiatric disabilities?
updated 3:50 PM EDT, Mon August 25, 2014
Julian Zelizer says it's not crazy to think Mitt Romney would be able to end up at the top of the GOP ticket in 2016
updated 4:52 PM EDT, Mon August 25, 2014
Roxanne Jones and her girlfriends would cheer from the sidelines for the boys playing Little League. But they really wanted to play. Now Mo'ne Davis shows the world that girls really can throw.
updated 5:04 PM EDT, Mon August 25, 2014
Kimberly Norwood is a black mom who lives in an affluent neighborhood not far from Ferguson, but she has the same fears for her children as people in that troubled town do
updated 5:45 PM EDT, Fri August 22, 2014
It apparently has worked for France, say Peter Bergen and Emily Schneider, but carries uncomfortable risks. When it comes to kidnappings, nations face grim options.
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT
ADVERTISEMENT