To her friends, family, colleagues, acquaintances, birth certificate, drivers license, and medical records, she is Cathy Morrissey. To doctors across Connecticut and downstate New York, she is the Lyme Witch. Cathy certainly does not resemble a ghastly green hag of folklore and Hollywood. She actually bears a striking resemblance to Jackie Kennedy - a classic beauty, immaculately put together: pink blazer, black slacks, leather heels, and straight brown hair curling just above her shoulders. While she would love to cast a spell to kill every tick, the Lyme Witch could not harm a fly. She speaks sweetly with determination; her face shows sensitivity with strength. Even in moments of passion she holds back, fearing overzealousness may overwhelm her audience and ruin their trust in her story. Sitting cross-legged on the living room carpet of her Manhasset, New York home with a bowl of minestrone soup, she watches a series of VHS tapes from a decade earlier. She stares at the healthy-looking woman who is tormented by illness on the inside. She does not blink watching her daughter Erin's hand flailing and head bobbing involuntarily while being interviewed about her Lyme-induced narcolepsy. "Oh boy, what a sad story," Cathy sighs, ejecting the final video.
The story begins in the family library, where two family portraits hang on opposing walls, staring into each other: the same six smiling people against the same backdrop, trying to reconcile four years of illness. In the front portrait, the original from 1994, the smiles came naturally. The Morrissey family had finally fled the New York City outskirts for rural suburbia. They had moved into a beautiful home, set at the base of a small hill on Langner Lane in Wilton, Connecticut. Lying together on a grassy fringe of forest, the family poses in matching Christmas sweaters - the cheeky kind with white silhouettes of Rudolph and Santa. The three girls wear red; the three boys wear navy. Only father Brian is grinning through pain, the first time he has ailed in any way since he met his beloved Cathy. Looking at the picture today, Cathy remembers finding ticks in the diapers of her youngest son, Kevin.
In the back portrait, the smiles are a lie for the camera. Nothing appears wrong with the boys wearing flannel shirts. The girls look healthy, too, donning jean jackets and dresses. In reality, only the younger daughter, Meghan, is not sick with Lyme disease. Brian still has arthritis. Cathy is in constant pain, too. Brian Jr., once an honors student, struggles to spell his own name. Kevin will soak his head with a wet towel, trying to soothe a "sticky brain." Erin, the sickest of the bunch, will seizure violently for hours. Brian and Cathy cannot spend hours holding Erin down, so they have carpeted rooms with sofa cushions for her protection. Little Kevin thinks his sister is just playing, and he rolls around the floor with her. At this moment, the Morrissey family is surviving day by day, praying for no more relapses. They take any preventative measures to avoid another tick bite; in this picture, they wear high socks and sit on stones, elevated above the grass.
Thriving in that grass is Ixodes scapularis, more commonly known as the black-legged tick or deer tick - the species responsible for transmitting Lyme disease to humans. Unable to fly, jump, or run, these ticks wait atop grass stems for unsuspecting hosts - mice, birds, dogs, deer, humans - to brush by, then latch onto them with a bloodsucking device, called a hypostome. Like all tick species, the deer tick goes through three life stages: larva to nymph to adult. In its earliest form, the larva measures about a thirty-second of an inch - no bigger than any one of the letters minted around the rim of a dime. In its adult stage, the parasitic arachnid quadruples in size to one-eighth of an inch. It begs the question: why bother scouring yourself, or your child, every single day - looking in between digits, combing through hair, reading your body like Braille but praying the page is blank of bumps? Even if a tick is discovered, there remains the issue of proper parasite removal - tweezing at the bloodsucking head, rather than ripping off the body, leaving the hypostome buried under the skin continuing to transmit the infection. When Cathy failed to extract the tick head embedded in Erin, doctors advised the worried mother to just check for rashes and flu-like symptoms. "Had I been as knowledgeable about Lyme disease as I am now, I doubt my story or that of my family, would have been so devastating," said Cathy in a written testimony to Congress.
After the photo shoot, the Morrissey family drives home to start their nightly ritual of tick checks and intravenous treatments. For six-year old Kevin, IV treatments and doctors appointments are as daily a routine as dinner and school. In one form of father-son bonding, Kevin and Dad receive weekly intramuscular bicillin shots. Meanwhile, Mom has a Hickman catheter - a device usually associated with chemotherapy - surgically inserted for her nightly dose of drugs. Brian Jr. and Erin have IV ports surgically implanted into their upper left chests; Kevin would have gotten one, too, but Mom and Dad worried their fidgety younger son would pull the implant out. So Kevin stands and watches, every night, as his dad injects medication into his siblings' silicone bubbles, sending treatment through the plastic catheters and into their veins.
Once in the bloodstream, the antibiotic attacks the infectious Borrelia burgdorferi spirochetes - the long, helix-coiled bacteria that cause Lyme disease. Generally, after a ten to fourteen day assault, the antibiotic acts as medical dynamite, exploding the spirochetes into thousands of miniscule bits. This induces a herxheimer reaction, a flare-up of symptoms caused by the toxic chemicals released during the bacterial destruction. Logically, this 'two steps forward, one step back' treatment would cure infected humans in short time. Unfortunately, for patients with chronic Lyme, recovery is not so simple. During the antibiotic assault, when the infectious bugs are stressed but not completely destroyed, the spirochetes shed blebs - small pieces of the original bug that the human immune system cannot distinguish from a whole bug. The perception of so many more assailants rattles the defending immune system, again resulting in increased symptoms.
A checklist of 167 symptoms covers six pages in a booklet put out by the Lyme Disease Association of Southeastern Pennsylvania, Inc. The telltale indicator, a circular rash, tops the list. However, while the Center for Disease Control defines Lyme by only the rash and flu-like symptoms, "the 'bull's eye rash occurs in fewer than 50% of Lyme patients." Despite a CDC disclaimer that its "surveillance case definition was developed for national reporting of Lyme disease...not intended to be used in clinical diagnosis," many doctors refuse to even consider testing for Lyme without both symptoms. Had Brian not boasted a rash and a positive Lyme test - the only Morrissey to meet both criteria from the onset of his illness - doctors probably would have written off his arthritic pain to aging. The rest of the Morrissey clan did not have such luck. Looking back, the family could combine to complete most of the booklet's checklist. Brian could complete most of the 'Musculoskeletal' section, Kevin could contribute to 'Psychological Well-Being' with mood swings and unusual depression, and Brian Jr. could take care of the 'Mental Capabilities' category. "Nothing worked for my older brother," Erin says of Brian Jr. in her written testimony to Congress. "At twelve, he took the SAT, and was a state high scorer - beating out the majority of high school seniors. Now he was struggling with dyslexia, memory loss and serious balance problems." Erin herself could single-handedly check off at least half the list - from vision loss (Eyes, Vision) to muscle twitching (Head, Face, Neck) to partial paralysis (Neurological System). While Cathy's symptoms were not as overt as Erin's, she had more than her fair share of symptoms: crying impulses, anxiety attacks, joint pain, headaches, numbness, and persistent fatigue. "It would take NINE months and FIVE doctors to properly diagnose me," says Cathy in her written testimony. "In that time, as I drastically declined, I was misdiagnosed with everything from stress or fibromyalgia to lymphoma or multiple sclerosis. I was sick enough to believe it."
Speaking from his home in Portland, Oregon, a grown-up 26-year old Brian Jr. remembers overhearing the list of possible autoimmune diseases a year after his mom got sick. "Multiple sclerosis was suggested - ALS, low-grade Parkinson's. I knew what those things were and I knew that they were terrible." He knew his mom could no longer perform the simplest tasks to care for her children, like making lunch and picking them up from school. Cathy cannot maintain her composure when she talks about her children as a source of strength. "If it was just me, there would not be this passion and drive," says the sobbing mother. "It was that it was my children. I wanted them to be well and for them to have a life. Parents are supposed to watch their kids grow up and thrive, not go the other way."
Desperate mothers have always served as the heroes in the fight against Lyme disease. In fact, the disease was first recognized in the 1970s by a group of mothers in the small southern Connecticut town of Lyme, whose children developed inexplicable neurological and psychological symptoms after getting bitten by ticks. They turned to nearby Yale, whose doctors successfully treated the first recorded incidents of Lyme and, overnight, became the accepted experts on the disease. Almost forty years later, despite various independent Lyme-specific research and awareness groups offering new perspectives, Yale still reigns the most influential institution in regards to Lyme. "The Yale orthodoxy is that there is no such thing as long-term or chronic Lyme," says clinical psychologist, Doug Bunnell, Ph.D. "If you have a couple weeks of antibiotics and still have symptoms, they say it's an autoimmune reaction." Cathy continues: "Yale says it is so good at testing and picking the disease up early that chronic Lyme does not exist." Despite Yale's claim, the accuracy of Lyme testing remains blurry and debated. Many patients with Lyme, like Cathy and her sons, repeatedly test negative with the ELISA and Western Blot tests, leaving many doctors with a degree of disbelief. At the same time, the CDC recommends that if a patient tests positive with the ELISA test, doctors should confirm with the Western Blot before a positive diagnosis; yet, if the ELISA is negative, no double-checking is recommended. These mixed messages are one source of the chronic Lyme controversy, and a reason Morrissey's former congressman in Connecticut, James Maloney, says "the basic issue is the controversy within the Lyme community about the pathology of the disease."
In reality, the issue runs deeper. The field of Lyme disease has created a sort of war in the world of medicine, pitting the educated establishment against common folk. Given the circumstances, the battleground is imbalanced. "Physicians are unwilling to treat [chronic Lyme] because of pressure from larger institutions affiliated with places like Yale," says Cathy. Moreover, from an efficiency standpoint, treating chronic Lyme is disadvantageous. "The pressure on [doctors] to diagnosis within a minute and get people out the door in order to make the business model viable really does not match up well with Lyme...a complicated illness with subjective symptoms and unreliable lab assets," says Bunnell. So while a handful of doctors do subscribe to aggressive treatment methods, they are significantly outnumbered by those who deny chronic Lyme disease. These "deniers" rely on their reputation more than science, because neither camp has a significant amount of data to present an irrefutable argument. So the issue becomes who to believe: "If you are a doctor in practice and do not know a lot about Lyme, who are you going to believe: the professional organization that says these are the guidelines, or angry Cathy Morrissey's?" asks Bunnell. And while the answer seems obvious, Bunnell confidently asserts that Cathy "knows more than 99% of the books." Cathy was trained as a certified public accountant, not a doctor, but she sees no need for a medical background to see that chronic Lyme exists. "It's just common sense," she says. Brian Jr. echoes her sentiments: "When you are turned away [by doctors] without a solution, you feel powerless. You think, 'I can see something is wrong with my sister. Why can't the doctor?'" So that leaves the Lyme Witches like Cathy Morrissey, the desperate mothers that will tirelessly exhaust every ounce of energy to save their children out of blind love before they ever put blind trust into the establishment.
When most parents send their children to school, they fret over bullies, mean teachers, and any grades below an A. For Cathy, nothing seemed as worrisome as the swing set built within spitting distance of the woods. When her Lyme fears fell on disbelieving ears, she assembled a homemade tick trap. Resembling a middle school science fair project, Cathy constructed her contraption by poking holes in a Styrofoam box filled with dry ice, placing the box on a fiber board, then lining the board's edges with double-sided sticky tape. Setting her homemade lure in the grass by the swings, Cathy waited for nature to run its course. Dry ice emits carbon dioxide, the same gas animals exhale, which attracts ticks seeking a nearby host. Sensing the influx of carbon dioxide, the excited parasites scurry off to sink their hypostomes into breakfast, lunch, and dinner for the next several months - only to sink their legs into a death strip of stickiness.
In just 15 minutes, Cathy caught 30 ticks from the surrounding 75 square foot plot of grass - an area comparable to two adjacent king size mattresses, no more than three strides in any direction. It is estimated that almost one-third of deer ticks carry strains of Lyme, meaning 10 of Cathy's ticks could have transmitted the disease. Now project those numbers onto a typical recess soccer field: 54,000 square feet; 6,500 ticks with Lyme. When Cathy brought her findings to the principal's office, the board of education finally took the initiative to institute a Lyme education program throughout the Wilton school systems. Off school grounds, Cathy distributed thousands of awareness flyers: Lay a wood chip barrier around your yard for protection. Avoid brushing up against the grass. No bulls-eye rash does not mean no Lyme disease.
"Lyme became my new life," remembers Cathy, and education was only the beginning of her grassroots movement. In 1998, Cathy started a support group as part of the Wilton Lyme Disease Task Force. She found an ally and meeting leader in Bunnell, a fellow Lyme sufferer since 1996, who came with his own story. "I was told by my infectious disease doctor, after he took out my second IV, that I was crazy and needed to see a psychiatrist. I'm a male, fairly empowered, and it was devastating to hear my doctor say that," says Bunnell. "Most people come in feeling like they're crazy. They've been dismissed, discouraged, told they're making it up. They've been told they're menopausal and have psychiatric problems." Soon after, Cathy organized a fundraiser dubbed Dance the Lyme Away, attended by such notables as Connecticut Attorney General Richard Blumenthal, Congressman Maloney, and Bunnell. The gala raised over $160,000.
That money helped Cathy tackle the next front: the government. Recruiting the help of Congressman Maloney, Cathy brought the issue of Lyme from the state capital in Hartford to Capitol Hill. "There is not enough money for research," says Maloney. "I tried to move Lyme disease research up on the agenda on the National Institutes of Health." With his support, in March 1998, twelve-year old Erin Morrissey testified in front of Congress. "Besides the normal jitters any twelve-year-old would have when speaking to Congress," Erin began, "I am also afraid I may fall or twitch or get dizzy during this speech." Unlike her last trip to Washington, a seventh grade field trip, when she stared up at the monuments from her wheelchair, Erin delivered her story standing on two feet. She described the multiple misdiagnoses and multitude of medicines; the disbelieving doctors and doubting friends and family; the fall from standout academic and swimmer to special-ed student. She described the Easter after developing narcolepsy: "At first, I would fall asleep spontaneously and unpredictably a few times a week, but over the next three months it climbed to four hundred times a day. I would fall when this happened. We tried to salvage Easter by going to a restaurant. I fell into my plate several times, and twitched uncontrollably. People stared at me in church. Dad pushed me in the wheelchair when we went to see the Easter bunny. Not fun!" In her written testimony, a healthy, but not unaffected, Meghan added: "I share a room with my sister. For a long time, she was in a wheelchair and had [seizures]. When she had them at night, I was scared. I was afraid she would die. My whole family was crying all the time."
Through dogged efforts, however, change on all fronts, not to mention health and happiness, seemed imminent. The nation's congressmen unanimously pledged to support a proposed bill devoting $100,000,000 to combating Lyme disease. And then people moved and progress reversed. Congressmen could not worry about ticks during their reelection years, and when the Lyme bill faltered in committees on its first try, unmotivated politicians neglected it to death. In 2004, Cathy fled the Wilton woods for Manhasset. Soon after, many of Cathy's initiatives in Wilton, including the in-school education programs, petered out without her unflagging leadership. "Within the Lyme world she is a pivotal figure," says Bunnell. "What she risked and stood up for - she is a hero...She is a model of what we're encouraging patients to become - to be confident to hold your own with the doctors and not be dismissed." Discouraged, but unsurprised, Cathy explains the catch-22 of combating Lyme. "People who are sick can't do this. And people that are not affected don't care. Until we're able to really sell this message to the public at large, and have my neighbors and people who are not affected really look at it seriously and support us, there is going to be a problem advancing the mission."
The fundamental issue with selling this message not only to the public, but to the federal government and entire medical community, comes down to chronic Lyme physicians not being able to condemn institutions like Yale with an overwhelming amount of scientific evidence. While the disease has collected a nice portfolio of press clippings, supporting evidence of countless case studies and European research is not convincing enough. "The press backfired because we did not have credible scientific experts to speak out on our behalf," says Cathy. "Young doctors do not want to go out on the field. Why would you, after so long in medical school, take on something controversial?" So in 2003, Cathy helped launch the National Research Fund for Tick-Borne Disease, Inc. By allotting grants to research organizations across the globe focusing on spirochete research and tick-borne diseases, NRFTD hopes to finally debunk the established mythology surrounding Lyme disease.
Through research, the Lyme Witch hopes to obtain a magical potion. She does not covet the elixir of life; nobody wants to live in eternal pain and anxiety. Cathy just wants to find a cure for Lyme disease so she and her family can enjoy their remaining years with full health. Unfortunately, no such miracle cure exists, and doctors are left to their own discretions on how to treat the disease. Brian and Erin initially received the Yale-recommended month of antibiotics. Brian relapsed soon after; in a matter of months, Erin was resigned to a wheelchair. Had Cathy and her loved ones not sought out more proactive doctors and received repeated rounds of antibiotics and intravenous treatments, there is no telling where they would be today. Brian Jr. would not have graduated top of his class at Notre Dame law school. Erin would not have gone to college at all. Cathy's illness may have actually progressed into multiple sclerosis, as mistreated Lyme often evolves into life-threatening autoimmune diseases. However, despite the facade of full health today, Brian Jr. knows Erin and his mother "will live the rest of her life with this to some degree." Chronic Lyme can never be fully expelled from the body, so Cathy still relapses, and she fears Erin will, too. "I worry about this disease rearing its head again later in life. I worry about Erin having kids sometimes."
Cathy does not cry for pity. "It's just a story, we're just a family. These were the cards we were dealt and this is how we played them." Her attitude has trickled down to the rest of the family who, while they wish they never even knew about Lyme disease, ultimately recognizes the good that has come out of it. "I wish it did not have to be her mission, that she could have done something else philanthropic without being so sick," says Brian Jr.. But at the end of the day, he would not have it any other way. "This is a disease that needed somebody to be its champion. She's the only person that could have done that that well." As Cathy continues to fight for all those suffering from Lyme, Brian Jr. can only hope that soon everyone will realize that his mother, the Witch, is really a saint.