Lyme disease: ‘Public health time bomb’ in the Berkshires environmentMore Info
Lyme: The First Epidemic of Climate Change
By Mary Beth Pfeiffer
Island Press-Center for Resource Economics, Washington, D.C.,
304 pages, 2018
Editor’s Note: Mary Beth Pfeiffer is a free-lance journalist and former award-winning investigative reporter for the Poughkeepsie Journal. Her book: “Lyme: The First Epidemic of Climate Change,” was published April 17. Densmore interviewed Pfeiffer in February at a Lenox restaurant. Densmore was treated more than a decade ago for Lyme disease.
A public-health time bomb, seen as a result of climate change, could so profoundly change the way humans view outdoor recreation that the enjoyment and the economy of tick-infested regions like The Berkshires could suffer, a book being published this week suggests.
The time bomb is the spreading impact of the tiny black-legged tick, increasingly a carrier of Lyme and related diseases, which infected an estimated 380,000 Americans in 2015 alone. Lyme disease, caused by a blood-borne bacteria called Borrelia burgdorferi, is spreading rapidly around the globe as ticks move into warmer places and altitudes they could not survive before, says the book that was published on Tuesday (April 17).
“Lyme: The First Epidemic of Climate Change,” by award-winning author and investigative journalist Mary Beth Pfeiffer, describes how the spread of suburban subdivisions and hacked up forests has helped ticks multiply. She quotes multiple studies and researchers who document the spread of ticks slowly northward and to higher altitudes as the climate warms. “The reason for this rather sudden habitat expansion is pretty clear – the climate is warming,” she says.
The book tells of human tragedies — stories about families broken personally and financially by members with tick-borne diseases – and also a tale of festering dispute between two factions of American medicine over how to take care of them. The dispute sometimes leaves patients unsure of where to turn for trustworthy medical care.
The elements of the medical dispute center on these three questions:
- Is common testing of Lyme disease accurate and thus reliable for diagnoses?
- Does standard antibiotic therapy of one day or up to 28 days kill the Lyme bacteria?
- Can the Lyme bacteria evade and thus survive antibiotics, causing systems to persist for months or years?
In her book, Pfeiffer presents evidence from all viewpoints, but her narrative sides with those who distrust the tests, seek more expansive – and expensive — therapies, and believe Lyme is a tragic long-term problem for thousands of victims. She argues government underfunding of Lyme research is a scandal and current treatment flawed.
Class-action lawsuit highlights dispute
The medical dispute has now landed in a federal court in Texas, where noted plaintiffs’ attorneys in November filed a class-action suit alleging a conspiracy by eight health insurers and at least seven prominent physicians to advocate and only pay for limited care. The argument poised to play out in court is this: Would a different regime have avoided extended suffering or even death by thousands of Lyme victims?
Lyme disease at its most benign causes a telltale bulls-eye rash around the bite to a human in 50 percent or fewer reported cases, say many U.S. treating physicians. It is often asymptomatic and missed. When the rash or other typical symptoms appear, testing followed by antibiotic treatment appears to short-circuit any complications, says one group of physicians.
But at its worst, says a significant contingent of other treating physicians and victims, testing is inaccurate or inconclusive and short-term antibiotics not always effective. They say unresolved Lyme and other tick-borne diseases can cause chronic pain, joint swelling, arthritis symptoms, persistent rashes, behavioral changes, so-called “brain fog” and speech troubles and in some rare cases life-threatening heart trouble.
Most U.S physicians subscribe to a dominant “camp” – and the controversy is so ingrained that both sides have spoken of “camps.” The dominant view is that says two-days’ treatment with an antibiotic such as doxycycline will kill the Lyme disease “spirochete” bacteria that a tick’s bite can deliver under a person’s skin. Only if the telltale bull’s-eye rash — or other symptoms — are present is a longer course of antibiotics required, they say.
But for many years, a smaller, well-organized group of respected doctors say clinical observation and research suggest such a short course of antibiotics does not always kill the Lyme disease’s Borrelia burgdorferis pirochete bacteria. They say it can move from the bloodstream into the nervous system and brain, wreaking havoc over time. This group argues in favor of at least 28 days of antibiotics when Lyme disease is diagnosed, and possibly other treatments, including medicinal herbs, careful diets and exercise and even visits to hyperbaric oxygen chambers.
In her book, Pfeiffer says one of the 300 scientific papers she read and unearthed reported that 21 researchers looking at 78 different studies of the CDC-recommended “two-tier” Lyme blood test reported “insufficient evidence to make inferences about the value of the tests for clinical practice.”
The controversies over test reliability and how much antibiotic therapy to prescribe, and when, are not as heated as a more fundamental argument over whether there is any such thing as “chronic” Lyme which can persist for months or years after a month or less of antibiotic treatment.
Medical controversy evident in Berkshires
The dispute is evident in the Berkshires, where doctors affiliated with Berkshire Medical Center (BMC) say they follow guidelines calling for one day (two pills) of initial treatment. They rely upon guidelines last updated in 2006 by the Infectious Diseases Society of America (IDSA) – the “dominant” doctor group — and once referenced by the authoritative U.S. Centers for Disease Control (CDC). However, since just after the Texas lawsuit, those guidelines are no longer linked from the CDC website, and an update of them is not due until October.
Privately, some BMC-affiliated physicians have said they do not generally accept the idea of “chronic” Lyme, that patients who believe they have persistent Lyme may actually have other illnesses that mimic Lyme symptoms. However, the public view is more nuanced.
“Those of us who do not see ‘chronic Lyme’ as a frequent consequence of treated infection recognize that there are early and later stages of the disease including neurological, significant cardiac and arthritic complications,” says Dr. Paula J. Aucoin, the lead infectious-disease physician at BMC in Pittsfield. She continued, in an email exchange, “ ‘Early stage’ disease – usually diagnosed by rash or signs of infection like fever – responds to a 10- to 14-day course of treatment, according to clinical studies. Later-stage disease – depending on the extent of the disease – may require a four-week course of either oral or intravenous [antibiotic] therapy.”
Aucoin adds: “Within BMC’s practices, patients referred for ‘chronic symptoms of Lyme’ should expect a thorough history and exam as well as laboratory testing to exclude other causes of their symptoms as the frequency of Lyme disease producing this chronic illness is thought not to be as common as often presented.” She says: “Many controlled clinical trials have not demonstrated any clinical benefit to treatment beyond four weeks.”
There are physicians outside of BMC’s orbit – in Vermont, the Hudson and Connecticut river valleys, and possibly in the Berkshires – who follow alternate guidelines of the International Lyme and Associated Diseases Society (ILADS), the organized “other” Lyme physician group. These guidelines more often prescribe the 28-day course of antibiotics.
In July 2016, a law took effect in Massachusetts – over the veto of Gov. Charlie Baker – requiring insurers to cover even longer-term courses of antibiotic therapy to treat Lyme if “determined to be medically necessary and ordered by a licensed physician after making a thorough evaluation of the patient’s symptoms, diagnostic test results, or response to treatment.”
Data on Lyme disease frequency spotty
Finding accurate data on Lyme cases is another area of controversy, beyond general agreement that it is very common now in New England and spreading. A 2011 Massachusetts House of Representatives report called it a “public-health crisis” at that time. Doctors and test labs have to report a Lyme diagnosis to the state. But the CDC estimates that just 10 percent of cases of Lyme disease are reported. The state said there were 108 reported confirmed cases in 2016 among Berkshire County’s 129,288 residents. There were 84 reported confirmed cases in 2013.
Lyme disease is at epidemic levels in Berkshire County, says Kenneth Mercure, Pittsfield-based organizer of the nonprofit Berkshire Lyme Alliance, which formed in 2011 to help Lyme disease-suffering individuals and to conduct public education. It meets many months at the Berkshire Athenaeum for speakers and discussions.
”What should be an easily treated and manageable infection is being left to become a serious and even life-threatening public health crisiss,” says Mercure, who says he has Lyme disease. “Lyme disease is under-reported, often misdiagnosed as something else and frequently suggested to be ’all in your head’. ”
Pfeiffer says that in her book research she read over 300 medical and research reports and journal articles on tick-borne diseases. She counted 34 papers that spoke about the over-diagnosis of Lyme disease and four studies about under-diagnosis. But she says the 34 papers were all reliant upon a single initial case study, which ILADS experts say was flawed and has never been authoritatively replicated.
Author intending to raise environmental alarm
Either way, as the public becomes more aware of Lyme and heeds warnings to avoid tall grass and wooded areas during warmer months, will there be an impact on tourist and outdoor industries?
“I wrote my book from the perspective of Lyme being the first epidemic of climate change for that reason,” Pfeiffer said during a February interview at a Lenox restaurant during a visit to the Kripalu Center. ‘It’s an environmental issue. It has changed our relationship to nature. I used to let my kids run around in a field with grass up to their thighs, roll around and have lots of fun. And now we have to look at a child in that situation and be fearful that some little critter is going to climb up the short sleeve or under the pant leg and create some really serious health problems.”
Pfeiffer’s book offers a three-step solution to what she sees as the environmental challenge of disease-carrying ticks:
- Recognize the pain of what her interviews with experts say is tens, maybe hundreds of thousands of long-term, tick-borne disease sufferers.
- Develop more reliable blood tests to detect Lyme and other diseases.
- Dramatically increase federal support for efforts to reduce tick populations, or invent a vaccine that keeps ticks from biting humans or renders their saliva and bite harmless.
“Without this commitment,” she writes in the book, “we will live in a world in which nature is feared or, for the unschooled, dangerous.”
Federal spending comparisons
While at least three nonprofit organizations are funding medical experiments around Lyme, and one of them – lymedisease.org — is conducting an epidemiological study of 10,000 Lyme victims to document their symptoms, treatment and experiences, the level of federal support is minuscule compared with other public-health challenges, Pheiffer’s book documents:
- For every HIV/AIDS case, the National Institutes of Health (NIH) distributed $57,960 in 2015. The per capita West Nile Virus allotment was $7,050. Lyme disease research grants amounted to $133 per Lyme case.
- The NIH has spent about $40 million a year on mosquito-borne West Nile Virus, with 2,000 cases a year nationwide. It has spent $24 million a year since 2012 on Lyme disease funding, with nearly 400,000 cases in 2015 alone.
- In 2016, the federal government appropriated $1.1 billion to fight the mosquito-borne Zika virus outbreak, and the CDC awarded $184 million in grants for Zika monitoring, prevention and research. In the same year, the CDC awarded $2.7 million to control Lyme disease – the second-leading infectious disease in America. That figure was less than 1 percent of the agency’s research awards that year.
- Ninety-one infants were born in the United States with Zika-related birth defects through July of 2017, and eight more died in the uterus. Sixty-three American deaths were attributed to Lyme disease in 2014. About 300,000 to 400,000 people are infected annually, “with 10 to 20 percent of casualties developing long-lasting, recurrent complications.”
“This isn’t about which disease tops the other as a public-health calamity,” writes Pfeiffer. “It is about whether responses to each are proportional. Zika prompted panic and got attention. Lyme disease, by contrast, has long been so much background noise, acknowledged but minimized by public-health officials and the researchers they relied upon.”
Protecting against ticks – what to do
Doctors and public-health officials in the Berkshires and southern Vermont see enough tick bites and the disease they cause that they have available resources for how to minimize the risk of bites and infection. They agree with Pfeiffer that key points include:
- Wear clothing that covers exposed skin
- Pull socks over pant legs.
- Avoid tall grass and wooded areas if possible.
- Always carefully check your whole body each day you are outdoors
- If you find a tick, remove it immediately trying not to squeeze it (which can release toxin)
- Kill and save the tick in rubbing alcohol and contact your doctor for advice
A testing lab at UMass-Amherst – tickdiseases.org — will test a mailed-in tick for Lyme and other diseases with results in a few days.
Experts frequently also advise wearing shoes, socks and even clothing which has been treated with a laundered, or sprayed-on version of a common insecticide generically called permethrin. It is also used as a cream to treat head lice and comes in brands such as Elimite, Nix, Crème Rinse and Nix Complete.
“I’m not saying don’t go out in the field or walk on a trail,” Pfeiffer said in the interview. “You have to be very vigilant though in how you interact with nature. When you’re walking on a path, don’t brush up against the tall grasses, because that’s where the ticks are. They just climb them in the beginning of the day and they just wait for a passing mammal. It doesn’t matter if it is a deer or a mouse or a groundhog or whatever – or a human being. They’ll just latch on.”
She also calls permethrin “very, very effective.” Her view is it has been studied and found “innocuous” even though she acknowledges she has a personal aversion to insecticides and chemicals. She says she has concluded that tick-borne diseases are such a serious risk, especially to children, that she has rethought permethrin use for her own family.
Lyme affects everyone in Hudson Valley
Pheiffer says her persona odyssey into the controversies and challenges of tick-borne diseases started in 2012 because in the Hudson Valley her former newspaper employer, the Poughkeepsie [N.Y.]Journal, realized that nearly everyone’s life has been touched by Lyme in some way. And shortly after she began writing regularly about it, she had the first of two personal experiences with Lyme infection, both of which luckily resolved well. The paper also found the stories posted on its website drew thousands of reads locally and worldwide.
She said she had to learn the science, learn about persistent Lyme that she is now convinced survives antibiotic treatment, and what she calls three Lyme “myths” – that it is hard to get, easy to diagnose and easy to treat.
“Short of restoring balance to a wounded planet, there are two options to curb Lyme and tick-borne disease,” she writes in her book. “First, get rid of or, more practically, sharply reduce ticks. Second, stop them from infecting people. We are a long way from reaching either of those goals. It is a problem of will, not ability. Science has tackled bigger problems in less times.”
Speech by author Mary Beth Pfeiffer in San Ramon, Calif., April 7, 2018:
Massachusetts state Lyme disease information page:
July 2017 WBUR series providing map on Lyme disease incidence:
BU School of Public Health statistical report:
CDC case-report form:
Massachusetts legislative report, 2011, calling Lyme disease a “public-health crisis.”
Texas Lyme class-action lawsuit:
Torrey v. Infectious Diseases Society of America
Links to initial complaint filed: