Lyme disease is a specter living among us, a dark cloud casting an ominous shadow of fear and anxiety over our state. Whether those fears are justified or unnecessary depends on who you ask.
The symptoms of Lyme range from mild inconvenience to debilitation; the outcomes vary from normalcy in a matter of weeks to, in the rarest of cases, death. The angst Connecticut residents feel lies in the unknown, the misunderstood and the controversial.
The disease was first identified in 1975, when there was an unusually high number of cases of arthritis in people in and around the town of Lyme. Most lived in wooded areas, and symptoms first appeared during the summer. Lyme is transmitted to humans through the bite of an infected blacklegged tick, or deer tick, and early symptoms may include headache, fatigue, fever and a bull’s-eye rash at the site of the bite. Untreated, the infection can spread and affect joints, the nervous system and the heart. Almost half of the adult ticks collected by the Connecticut Agricultural Experiment Station in a recent statewide surveillance program tested positive for Borrelia burgdorferi, the bacterium that causes Lyme. According to the U.S. Centers for Disease Control and Prevention, ticks need to be attached for at least 24 hours before they can transmit the disease.
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Each year about 30,000 new cases are reported to the CDC, but estimates put the real number closer to 300,000. And according to the CDC, cases are concentrated in the Northeast and upper Midwest with 14 states accounting for over 96 percent of reported cases. The Connecticut Department of Public Health reported 1,853 probable or confirmed cases in 2018.
Research and development in Connecticut is attacking Lyme disease on a variety of fronts. Doctors at Danbury Hospital are focused on developing new diagnostic tests. Scientists have been working in wooded areas in towns like Redding and Guilford to treat deer and mice, the main hosts for ticks, and stem the interspecies transmission of the bacteria before it ever reaches humans. Over the state line, a team at UMass Medical School is nearing clinical trials for a preventive shot for humans that will provide immediate immunity to Lyme for the duration of tick season.
There’s bitter controversy over many aspects of Lyme, from the accuracy of diagnostic testing to the efficacy of antibiotic treatment. But what causes the most headlines and headaches is the belief among a vocal minority of medical professionals and affected patients that chronic Lyme disease exists. The CDC and Infectious Diseases Society of America say it doesn’t. The International Lyme and Associated Diseases Society says it does. The CDC and IDSA acknowledge the existence of post-treatment Lyme disease syndrome, but not chronic Lyme disease. Providing a unique perspective, one of Connecticut’s top Lyme researchers contracted the disease almost 20 years ago and says she’s still experiencing symptoms.
It’s no wonder one Connecticut doctor calls Lyme “by far the most controversial disease in medicine.”
OUT IN THE WOODS
Applying repellent to your clothes and/or skin and performing tick checks is the tried-and-true first line of defense in preventing exposure to tick-borne diseases. Pest-control companies combat ticks by making house calls and spraying yards with rounds of insecticide. Kirby Stafford, the chief scientist and state entomologist at the Connecticut Agricultural Experiment Station in New Haven, is focusing on the least-toxic alternatives to spraying.
The CAES is taking the fight to the ticks and hitting them where they live by targeting their hosts: deer and mice. In Guilford, three methods are being used in different combinations, but the goal is the same — kill the ticks and leave the deer and mice unharmed. Deer-feeding stations equipped with paint rollers topically treat deer with permethrin insecticide, which kills adult ticks on the deer. Bait boxes are set with Fipronil, the active ingredient in Frontline which pet owners use to vaccinate dogs and cats, to target white-footed mice, the major wildlife source of Borrelia burgdorferi. The third method is spraying a fungus-based bioinsecticide called Met52.
Part of the problem is the complexity of the tick’s life cycle. “What do you target?” Stafford says. “Do you spray for the ticks that are out there looking for you to feed on you? Do you target the deer? Do you target the mice? It’s been a difficult issue to address, because there’s not too many weak points.”
The deer is probably the weakest point in the life cycle, according to Stafford. He concedes there’s pushback when talk of reducing deer numbers gets started, but some studies show it makes an impact. Looking back in our region’s history, Stafford notes that ticks were abundant in the 1700s. “What happened between 1750 and 1870?” Stafford asks. “The forests were cut down, the deer were hunted out. No habitat, no hosts, no ticks.”
In January, the CAES and US Biologic, a Memphis, Tennessee-based company that specializes in preventing disease in wildlife and other animals, announced the publication of field trials conducted over three years in a residential area of Redding. The non-GMO, rodent-targeted oral bait vaccine proved to have a significant impact. “In Redding, where we had the bait boxes and spraying that Met52,” Stafford says, “we reduced the risk of encountering a single infected tick on the residential properties by 66 percent.”
While Connecticut is home to the namesake town of the disease’s name, Lyme is pervasive throughout the Northeast. Dr. Mark Klempner, the executive vice chancellor for MassBiologics of UMass Medical School, has been working on a prevention shot, which is different than a vaccine. Klempner says one shot at the beginning of tick season provides immediate and specific immunity with little or no side effects and lasts seven or eight months. It could take six months for immunity to build up with a vaccine.
Warmer winters may be responsible for extending the length of tick season, so while a preventive that is effectively engineered for seven or eight months would be a triumph, there’s still four or five months left in the year. “If you can cover 95 percent of the timeframe with which cases occur … which you can do if you’re effective for about seven to eight months a year, that’s a reasonable goal,” Klempner says. “Sure, you’d like to have a vaccine or an antibody that’s 100 percent effective all of the time. That’s an admirable goal. But there’s no such thing out there as 100 percent protection all of the time against anything in the world.” Clinical trials for Lyme PrEP, a pre-exposure prophylaxis, are set for this summer, and it could be available to the public in as little as two years.
“I really felt like, back in 2000, that we thought we had this disease under control and sort of ignored it.”
Klempner began working on Lyme in the early 1990s. He was an infectious diseases clinician and became interested in researching inflammation. While on sabbatical at the Rocky Mountain Laboratories in Montana, he worked with Willy Burgdorfer, the man who, in 1982, discovered the pathogen that causes Lyme, a bacterium now known as Borrelia burgdorferi in his honor. “For a long time there had been these unusual diseases and symptoms after tick bites with names like Nantucket Knee and Long Island Knee,” Klempner says. “People would get a tick bite and then they would have some kind of chronic arthritis. It goes way back.”
The rate of progress has been rather remarkable, according to Klempner, in terms of understanding the cause of symptoms and developing treatments and preventions. “There certainly has been an evolution of research and development in Lyme disease,” Klempner says. “We’ve witnessed an effective vaccine being pulled from the market and now the general public saying, ‘hey, we really need something to prevent Lyme disease.’ I think we and a couple of other companies are working on that.”
The discontinued vaccine was LYMErix, which was available from 1998 to 2002. Klempner says it’s the only safe and effective vaccine — it was shown to have a 78 percent efficacy after three shots — for a contemporary problem that was pulled off the market. SmithKline Beecham, the manufacturer of the vaccine, voluntarily withdrew LYMErix amid declining sales and public concern over its safety. Klempner says that people became concerned LYMErix might cause autoimmune arthritis, despite the CDC not finding any data to back that up.
DOCTORS ON THE FRONT LINE
Dr. Eva Sapi, director of the Lyme disease program at the University of New Haven, was a cancer researcher at Yale before she contracted Lyme in 2002. Her symptoms started with dizziness and got to the point where she says she felt like she was losing her mind. To this day she says she still gets tired very easily. “I never got the proper diagnosis,” Sapi says. “People were still wondering exactly what I had, until finally an MRI showed that I had very high inflammation in my brain. And actually the radiologist said this looks like Lyme disease, and that’s when I finally believed it.”
Sapi says she was so debilitated that she couldn’t get up from her chair. Being a researcher, she started reading everything she could about Lyme. “I was shocked, actually, how much we don’t know,” Sapi says. Ten years ago she started a research group at UNH. One of the group’s findings is that the reason the bacterium that causes Lyme can be resistant to treatment is because it forms a biofilm that allows it to “hide out” from antibiotics.
“I really felt like, back in 2000, that we thought we had this disease under control and sort of ignored it,” Sapi says. Now the students under her watch meet at least once a week to discuss all things Lyme, bringing different perspectives and ideas to the table. She says these students come in with an open mind and want to help, providing interesting directions in which to take research. “There still has to be a cultural change, how we look at even scientific data,” Sapi says. One of the projects Sapi and her team is working on now is exploring the possibility of a link between Lyme disease and breast cancer.
The CDC and IDSA do not recognize chronic Lyme disease, and a majority of doctors practice in lockstep with those guidelines. “Most of the stories about [chronic] Lyme disease are people with chronic nonspecific symptoms who are suffering,” says Dr. Eugene Shapiro, professor of pediatrics and epidemiology at Yale. “Let me make clear, I believe those people have the symptoms they are describing, and that they are suffering. However, the evidence that Lyme disease is somehow the cause of those chronic symptoms and/or that long-term antibiotic treatment is necessary and/or beneficial for those people is not only nonexistent, but there’s overwhelming evidence that it provides no benefit and is harmful.”
In a 2010 survey of a random group of primary care physicians in Connecticut, only six of 285 (2.1 percent) reported they diagnose and treat patients with presumed chronic Lyme disease. “If you google ‘chronic Lyme disease’ on the internet, there are 5 million hits. You can find out if your nose falls off, Lyme disease could do it,” Shapiro says. “Nobody’s that interested in a story that says ‘Lyme disease, no big deal.’ They’re much more interested in running a story, ‘this person’s life was ruined by Lyme disease.’ That sells.”
Shapiro is matter of fact in his opinion that chronic Lyme doesn’t exist, and says patients who are diagnosed with it and don’t get better after treatment remain locked into the diagnosis. Therefore they’re not getting treated for what they really have. “I’m not saying that there’s never a bad thing with Lyme disease,” Shapiro says. “Once you diagnose it you can treat it, and cure it. You can feel sick. You can feel pretty bad when you get it for a while.”
“It’s an outrageous statement to say there’s no such thing as chronic Lyme.”
UConn Health epidemiologist and associate professor of medicine Dr. David Banach also adheres to the IDSA guidelines, which will be updated for the first time in 10 years this fall. He does concede, however, that he wishes there was more data and a stronger evidence base. There are three stages of Lyme — early localized, early disseminated and late disseminated — and Banach says he has treated all three successfully with antibiotics with no recurring infections.
“There is some controversy that in that later stage of Lyme disease, the [pathogen] may be more difficult to treat and require prolonged antibiotics,” Banach says. “Some practitioners do feel that way, but I don’t fall into that camp based on my interpretation of the guidelines and the evidence.” The general consensus in the scientific community is there are still aspects of Lyme that we need to better understand. Banach cites improved diagnostic testing and the improved understanding of the immune response to Lyme as major areas in which to make gains.
Dr. Paul Fiedler, the chair of pathology and laboratory medicine at Danbury Hospital, is focused on developing new diagnostic tests for Lyme. He says the current testing strategy looks for a patient’s immune response to the infection, therefore not detecting the actual infection. Fiedler is hoping to figure out how to directly detect the organism itself, though he says that method presents significant technical challenges.
THE DISSENTING VOICE
“It’s not hopeless.” Those words, presumably directed toward people suffering from persistent symptoms of a chronic illness, are on the homepage of Dr. Steven Phillips’ website. The Wilton physician recently wrote a piece for NBCNews.com that stated the diagnostic testing for Lyme was “four decades old and unacceptably inaccurate.” And as for his position on whether or not chronic Lyme disease exists? His book Chronic is coming out in May.
“It’s an outrageous statement to say there’s no such thing as chronic Lyme,” says Phillips, who trained at Yale and started his practice in 1996.
Phillips points to the absence of post-treatment syndromes for other diseases, and says that diagnosis for Lyme patients is a slap in the face. “Nobody thinks that’s intuitively correct,” Phillips says. “It doesn’t make sense to make up a second disease of mysterious origin with the same symptoms as the first disease, but that’s what a lot of the medical community believes. And I think it’s ridiculous. I think it’s nonsense.”
Calling Lyme “by far the most controversial disease in medicine,” Phillips says research conducted at universities like Johns Hopkins, Tulane, Northeastern and Tufts shows an inability to kill Lyme bacteria in a test tube with the same antibiotics used in humans. “If you can’t kill this bacteria in the test tube, how does anybody have the nerve to say that it’s easily curable in people?” Bias is one of the culprits for the disconnect between the two sides, according to Phillips, adding that some doctors cherry-pick facts that support their opinion or contradict the opinion of others.
Phillips says that some of his chronic Lyme patients have been ridiculed by previous practitioners, saying other doctors have pounded their desk and screamed in their faces. “I’ve had patients literally come to me with PTSD, no exaggeration,” Phillips says. “They come in, they’re traumatized by the medical community. They’ve been disbelieved, marginalized, disenfranchised and they just have nowhere to go. And it’s a human rights issue, I think, nowadays, as much as a scientific issue. Because for these patients to be ignored and criticized, when all they did was get bit by a bug, it’s unconscionable.”
Blacklegged ticks, or deer ticks, transmit Lyme disease to humans. But those aren’t the only ticks living among our lawns, leaves and wood piles, and Lyme isn’t the only disease they carry.
The Connecticut Agricultural Experiment Station collected 2,510 ticks throughout all eight counties during the spring, summer and fall of 2019. Blacklegged ticks were found to be infected with Lyme, anaplasmosis, babesiosis, tick-borne relapsing fever and Powassan encephalitis. The other prominent tick collected was the American dog tick, but two newly identified emerging species, the lone star tick and Asian longhorned tick, were found in both Fairfield and New London counties.
Blacklegged or deer tick (Ixodes scapularis): 2,068
American dog tick (Dermacentor variabili): 437
Lone star tick (Amblyomma americanum): 3
Asian longhorned tick (Haemaphysalis longicornis): 2
Highest average adult blacklegged tick density: Fairfield County (61 sampled per acre)
Highest average nymphal blacklegged tick density: Tolland County (51 sampled per acre)
Highest infection rates for all pathogens in adult females*: Fairfield County
Highest infection rates for all pathogens in nymphs: Litchfield County
*Only female ticks feed on the blood of hosts and spread disease
Diseases carried by black-legged ticks:
Lyme disease: Caused by the Borrelia burgdorferi bacterium, Lyme is the most common vector-borne disease in the U.S. Typical symptoms include fever, headache, fatigue and skin rash. Left untreated, the infection can spread to joints, the heart, and the nervous system. Statewide infection rates in blacklegged ticks: Adults 46%, nymphs 15%
Babesiosis: Caused by Babesia parasites that infect and destroy red blood cells. Many people can be infected but not have any symptoms. For others, symptoms can be similar to the flu. For those with weakened immune systems and compromised conditions, the disease can be severe and life-threatening. Statewide infection rates in blacklegged ticks: Adults 13%, nymphs 6%
Anaplasmosis: Caused by the bacterium Anaplasma phagocytophilum. Symptoms include fever, headache, chills and muscle aches. Doxycycline is the typical treatment. If left untreated, the disease can be severe and, in rare cases, be life-threatening. Statewide infection rates in blacklegged ticks: Adults 9%, nymphs 5%
Hard tick relapsing fever (aka Borrelia miyamotoi disease): Caused by the bacterium Borrelia miyamotoi. Common symptoms are fever, chills, headache, body and joint pain, and fatigue. Treated with antibiotics doxycycline, amoxicillin and ceftriaxone. The disease is relatively new and rare; more study is needed. Statewide infection rates in blacklegged ticks: Adults 2%, nymphs 2%
Powassan encephalitis: Caused by a virus that can bring on neurological infection. Many people who become infected do not have symptoms. Early symptoms include fever, headache, vomiting and weakness. In severe cases, it can lead to encephalitis and meningitis. There are no vaccines to prevent or medicines to treat the disease. First isolated in a boy who died of encephalitis in Powassan, Ontario, in 1958. Statewide infection rates in blacklegged ticks: Adults 1%, nymphs (none found)