'Her day was getting up, eating if she could, then crawling back to bed'
Data courtesy National Climate Assessment
Sept. 22, 2014
As Lyme disease spreads in the U.S., those in its path cope with a debilitating, bewildering array of maladies, misery and afflictions.
A Climate at Your Doorstep story.
By Marianne Lavelle
The Daily Climate
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Richard Gardiner had no option but to shut down his law practice in Fairfax, Va. in the summer of 2012. A fit 60 year-old, he came down with a high fever and the worst chills he had known in his life. He spent a miserable summer bedridden with aches and debilitating fatigue.
Today Lyme disease is the leading vector-borne disease in the U.S.
At around the same time in Bozeman, Mont., 12-year-old Noelle Freeburg – described by her mother as a "healthy-as-a-horse" tween who enjoyed dancing, swimming and skiing – became feverish, dizzy, and doubled over with stomach aches every time she tried to exert herself.
In different corners of the United States, this middle-aged man and middle school girl were embarking on the same frustrating, costly journey. It took both of them months to learn why their health was deteriorating. They were patients on the frontiers of North America's expanding Lyme disease epidemic.
Leading vector-borne disease in the U.S.
Less than four decades ago, scientists identified a spiral-shaped bacteria transmitted by the bite of a tiny hard-bodied tick as the cause of an arthritis outbreak among children in southern Connecticut. Since then, Lyme disease has emerged from obscurity to become the leading vector-borne disease in the United States. The 27,203 confirmed new cases reported to federal health authorities in 2013 marked nearly a 25 percent jump over the previous year.
While the disease is reported coast-to-coast, it is highly concentrated on the Eastern Seaboard, with a range expanding north into Canada and south through Virginia. Reasons for the spread are not fully understood but include suburbanization and the growth of suitable habitat for the black-legged tick, according to the U.S. Centers for Disease Control and Prevention. CDC believes climate change may be a factor, and this spring the U.S. Environmental Protection Agency added Lyme disease to its list of climate change indicators.
The CDC estimates that the number of infections is likely 10 times higher than reported, nearly 300,000 new cases per year based on lab test data. Yale University researchers say that 10 percent of the population of southern New England has evidence of a previous Lyme disease infection.
Steeped in controversy
With so much unknown, every aspect of the disease – its spread, diagnosis, and treatment – has become steeped in controversy, with patient advocacy groups often pitted against doctors, the medical insurance industry, and public health authorities. All sides agree that prevention is key, but how to stem the disease is unclear, especially when nature appears to be tipping the balance toward spread of the evasive pathogen, at great cost to health.
"It is so pernicious in its impact on individual lives, particularly children who are undiagnosed and suffer hugely and hauntingly throughout their lives," said Connecticut Sen. Richard Blumenthal, a Democrat who battled for better treatment guidelines as the state's attorney general and who is leading a charge for expanded federal funding to address Lyme. "It is life-transforming in a fundamental and profound way."
'Peaks and valleys'
Noelle Freeburg began missing school regularly after she took ill in March of her sixth grade year. In seventh grade, she was absent for sickness for 49 days. By eighth grade, she made it to the first day of school, "and that was it," said her mother, Danielle. "Her day was getting up, eating if she could, and then crawling back into bed."
Doctors never could determine a cause for her symptoms, which would change often, and sometimes abate. "She had peaks and valleys," remembers Danielle. "She'd be dizzy with a fever and that would go away in a few days, so we thought it might be viral. Then her knees hurt, and she had severe joint pain."
One doctor said in a case like Noelle's, with blood tests showing no underlying problem, the family should look to possible emotional issues. "I get that, but it continued not just during the school year but over summer," said Danielle. "Stress can explain headaches and a stomachache, but it doesn't explain a fever."
The family took her to a holistic health practitioner who asked if Noelle's Bozeman doctors had considered Lyme disease. "'We don't have Lyme disease in this area' – that was the blanket statement from the pediatricians here," Danielle said. "No one even asked, 'Have you traveled?'" In fact, Danielle believes that her daughter was bitten by an infected tick in Montana; she recalls her developing a high fever after a tick bite when she was just 2 years old.
All from out of state
But the Montana Department of Health, which has been reporting a handful of Lyme disease cases to federal authorities each year since its first recorded case in 2006, maintains that all of its confirmed Lyme cases were acquired out of state. In 2013, Montana's number of reported Lyme cases jumped to 16, more than three-fold its average over the past six years.
So she won't leave the house to go shopping – what if someone sees her there?
Danielle said Noelle only began to recover her health after her family began taking her to a practice in Washington, D.C., that specializes in Lyme disease cases. It has been a costly effort, not only for travel to the East Coast, but for some $8,000 in blood testing that wasn't covered by insurance, the cost of long-term antibiotic regimen their specialist prescribed (also not covered by insurance), nutritional supplements, and other recommended treatments, like an infrared sauna for detoxification. She also now needs an optometrist for a vision problems caused by the Lyme disease.
One of the greatest difficulties has been depression and anxiety, said Danielle, especially Noelle's worry about other students wondering why she can't come to school and needs a tutor to come to the house. "The hard thing is Noelle doesn't look sick," said Danielle. "She's really thin, but she looks great, even if she feels like garbage. So she won't leave the house to go shopping – what if someone sees her there? It's hard for kids to understand a long-term illness like this and its cyclical nature."
Failure to diagnose
Noelle's case is far from unique. Lyme patient advocacy groups have coalesced nationwide over a host of issues: Health professionals' failure to diagnose the disease, long-term antibiotic treatment for those with persistent symptoms, the need for more research. The patient groups have a measure of moral authority, since the disease was only identified in the late 1970s due to the activism of Connecticut mothers who insisted that state health officials investigate a pattern of childhood arthritis around the town of Old Lyme.
Although the Lyme disease bacteria has an affinity for connective tissue – the reason why joint and neurological symptoms are common – it can cause illness in multiple systems of the body, with symptoms often changing over time. In the past year, CDC has published reports confirming that Lyme disease can be fatal; the bug can invade the heart and, in rare cases, trigger third-degree heart block.
For many patients who – often unknowingly – wind up with advanced stages of the disease, the most difficult impact is the erosion of mental function.
'Couldn't balance a checkbook'
Kathryn Fishman worked in the futures industry on the Chicago Mercantile Exchange before she became ill in 1985 with what she thought was a severe case of the flu. After that, her life, and even her personality, changed dramatically.
"I used to be incredible with numbers. I could remember what different commodities did over a period of years," she recalled. "But now, I couldn't balance a checkbook."
"Short-term memory goes out the window, and I would respond much more rapidly and irrationally on an emotional level. My frustration level was minute. The slightest thing would push me over the edge," Fishman said. "I'd get so angry and upset because my brain wouldn't function right."
Fishman lived with the symptoms, never knowing their cause, for more than 20 years. Ultimately, her husband, a doctor specializing in chronic fatigue, learned that Lyme and other tick-borne diseases were at the root of many such cases.
He suggested that she be tested.
Pattern of cases
Today, CDC says that 95 percent of confirmed Lyme disease cases were reported from just 14 states on the East Coast and in the upper Midwest. But the pattern of cases indicates that the geographic range of the tick that is primary disease carrier, Ixodes scapularis, known better as the deer tick or black-legged tick, is expanding on the East Coast. And research published just last month by the California Department of Public Health shows that the tick species that carries Lyme disease on the West Coast, Ixodes pacificus, the Western black-legged tick, is active for a far more extended period than previously recognized, posing a year-round risk in northwestern California.
"The story on Lyme disease is that it has expanded tremendously over the past 15 years," said C. Ben Beard, chief of the bacterial diseases branch of the CDC's vector-borne disease division. "With climate change you would expect to see some northern expansion, and that is probably happening in Canada and the northern reaches of the U.S. But the mystery to us is that Lyme disease is expanding south at the same time," with large increases in Delaware, Maryland, and Virginia.
"It's hard to say what the cause of that is, and there's a lot of research to look into that," Beard added.
One explanation could be the expansion of suburbia into the edge of forests, creating the lightly wooded habitat favored by deer and the white-footed mouse – important tick hosts and transporters.
Life cycle speeding up
The warming correlation is less clear. The black-legged tick that carries Lyme disease has a two-year life cycle regardless of the temperature. But one theory, based on the work of Canadian researchers, is that warming causes tick life cycles to speed up, allowing more to survive and reproduce.
Their study looked at projected climate change and tick reproduction and found that warmer temperatures increased tick reproduction two to five times in Canada and up to twice as much in the United States compared to variations in other factors such as strains, geography, host densities and epidemics. It was published this year in the journal Environmental Health Perspectives.
Such science is why the EPA added Lyme disease to its list of climate change indicators, a report meant to aid in public understanding of documented impacts of global warming. The EPA cited CDC figures showing the nation's incidence of Lyme disease has more than doubled since 1991, from 3.74 reported cases per 100,000 people to 8.6 reported cases per 100,000 people in 2013.
That incidence rate is likely an understatement. New estimates, published by the CDC in May, say the number of new infections is likely ten times higher than reported – about 300,000 new Lyme disease cases each year – based on results researchers gathered from testing labs nationwide. The stark difference between reported cases and reality leads some patient advocates to question whether Lyme is truly spreading geographically at all.
"I firmly believe that it's been there, and it's been there a long time," said Monte Skall, the head of the National Capital Lyme Association, who herself contracted Lyme disease in Virginia more than 20 years ago. "They say it's spreading, but that's because all of these years, people have been turned away, and not treated, and have suffered tremendously. I talk to them every single day."
Unreliable blood tests
A key problem is that the blood tests to detect Lyme are unreliable, especially in the first stages after a tick bite. They test for only immune system response, not the bacteria itself. That means the blood test is the least reliable at the point when treatment would be most effective.
Lawyer Richard Gardiner from Fairfax, Va., just southwest of Washington, D.C., learned this the hard way. After he first came down with what seemed to be a severe case of the flu, his doctor tested him for a variety of things, including Lyme, but the tests were negative.
He continued to get sicker. His fatigue worsened.
"I was really tired and I was lying down all the time," he said. "I could talk on the phone or do something on the computer, but that was it. It was mood-altering, too. I don't want to say I was depressed, but I was definitely down. Luckily, my wife is an optimist and she said, 'You are going to get better.'"
A couple of months after his first illness, Gardiner learned that a neighbor had recently recovered from Lyme disease with complications so severe she had been hospitalized. She recommended that Gardiner see her doctor. "The first question he asked me is whether I lived in an area where there are deer. I said, 'Yes, lots.' He asked if I ever worked outside. I said, 'Every weekend.' He said the odds are pretty good that it's Lyme. He also said there isn't any good blood test, but he would put me on antibiotics to which Lyme was responsive."
Marginal improvement, after a month of treatment
It was far from an overnight cure. Gardiner reacted badly to the first antibiotic he tried, and had to move to an alternative one. After about a month of treatment, "I was getting marginally better, but not significantly better," Gardiner said. The doctor recommended that he continue with antibiotics, but explained that health insurance would not cover it. "He was a traditional infectious disease specialist, but he said, 'I have to tell you, we don't know much about Lyme disease. We are where we were a quarter century ago on HIV,'" the virus that causes AIDS.
Ultimately, Gardiner got intravenous antibiotic treatment, requiring a weekly visit from a nurse to check and clean the dressing. The treatment cost hundreds of dollars. "Fortunately, the cost wasn't staggering," he said. "The worst part financially was that I pretty much couldn't work for three months and then after that was only working part-time. I probably lost a quarter of a year in billing."
By May of 2013, Gardiner finally felt better – 15 months after he was first struck down by Lyme.
Tissue damage or infection?
One of the most controversial issues roiling around Lyme disease is whether prolonged antibiotic treatment, like Gardiner received, is beneficial for that subset of patients – perhaps as many as 20 percent – who suffer lingering symptoms after the typical three-to-four-week regimen of antibiotics. Federal health officials maintain that prolonged antibiotic treatment is not effective and may be harmful.
But some health providers insist that long-term antibiotic treatment has helped patients with persistent Lyme symptoms. Science hasn't fully answered the question of whether lingering Lyme symptoms are due to tissue damage the disease has caused or due to continuing infection.
An NIH-funded study published earlier this year did show that in mice the Lyme bacteria, although in altered form, can resurge many months after antibiotic treatment. It's not clear what the implications are for humans, but the bacteria has evolved complex mechanisms of "immune evasion and persistence," said one of the authors, Stephen Barthold of the University of California, Davis. "The persistence stage of the infection is the last great frontier or area that we really need to understand."
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Federal research spending on Lyme has been modest relative to other diseases. The National Institutes of Health budget for Lyme research in the current fiscal year is about $21 million, a fraction of the $186 million set aside for study of malaria, a disease that certainly is a global health threat but was eradicated in the United States in 1951.
Lack of a vaccine
The lack of a vaccine has been one of the most frustrating dead ends in Lyme research. In the late 1990s, the Food and Drug administration approved a vaccine for Lyme disease as safe and effective, but the manufacturer, GlaxoSmithKline, facing litigation and citing slow sales, stopped making it in 2002.
Responding to increasing patient concern about Lyme disease, the U.S. House of Representatives passed legislation on earlier this month requiring better interagency coordination on Lyme research, as well as establishing an advisory role for representatives of the patient advocacy community and their physicians. The bill did not authorize new money for disease research or prevention.
The bill is now in the Senate, where different legislation has been introduced by Blumenthal and neighboring Democratic colleague, Sen. Kirsten Gillibrand of New York. Blumenthal's office said it was reviewing the House measure.
Blumenthal is "mystified" by all of the controversy that has surrounded Lyme disease. "The need for more funding and support for better diagnosis and treatment is incontrovertible," he said.
Doing what they can
Some state and local authorities have been doing what they can on their own to address the growing incidence of Lyme disease. Virginia last year enacted legislation requiring that any patient in the state being tested for Lyme disease be informed that a negative test result does not mean that they don't have the disease. The physicians' group, the Medical Society of Virginia, had lobbied against the measure, arguing it interfered with the doctor-patient relationship. But lawmakers from both parties said it was a necessary step to stem a growing health threat that was changing life in the Old Dominion state.
"I have four kids, and a little creek through our backyard," said Timothy Hugo, a Republican delegate from Fairfax County, during the debate on the legislation. "The two older kids could play in the creek a few years ago. The two younger kids will never be able to do it, because every night when we go to bed, we have to give the kids a head-to-toe tick check, just like all of our neighbors.
"If you go down my street – every one of my neighbors – someone in their house has had Lyme disease," he said.
Public health authorities have struggled to come up with a plan for preventing Lyme other than reminding people to perform tick checks, like Horton and his neighbors in Fairfax County.
An important goal, said the CDC's Beard, is to develop a national prevention plan for Lyme disease that's based on "a validated prevention method and control approach" – an effort stymied by the lack of a vaccine.
"We can kill ticks, but killing ticks in your backyard doesn't mean you're not going to be exposed to ticks somewhere else," Beard added. "A lot of people don't like to use synthetic pesticides, and a lot of people don't like to use repellents. Deer control is another approach, and there's a lot of people who don't like removing deer."
"Everywhere you turn there's another obstacle to preventing Lyme disease," Beard said.
Gardiner is now fully recovered from Lyme disease. This spring, the Virginia General Assembly tapped him for a vacancy on the Fairfax County General District Court. He was sworn to the bench in June.
And he is doing his small part at prevention: He's inviting hunters onto his property to shoot deer with bows, for which there are fewer restrictions than hunting with guns.
Last year, about 1,000 deer were killed in Fairfax County's managed kill program.
"It's not unusual to see eight or nine or ten deer in our backyard," said Gardiner. "They come right up to the house, and they love everything we plant.
"I used to think they were cute. Not anymore."
Marianne Lavelle is a staff writer for The Daily Climate, an independent news service covering energy, the environment and climate change. Follow her on Twitter @mlavelles.
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