The Lyme Disease Quilt Page

Amy Distler

English 10 Honors, Period 7

Mr. Colleary

March 29, 2000

Modern Medicine's Fiercest Battleground:

The Diagnosis, Treatment, and Prevention of North American Lyme Disease

Karen Vanderhoof-Forschner politely welcomes a visitor to her Lyme Disease Foundation offices, and with barely another word rolls a video that tells her story. There on the screen is her husband, Tom, cradling the couple's firstborn — a ragdoll of a boy who in six years of life would never talk or smile, never run or climb, would never even eat strained food from a jar, destined instead to survive on nutrients drawn into his stomach through a tube.

Battling infertility for ten years before this baby boy, Jamie, his startling disabilities devastated the couple. The year Jamie was born sickness surrounded Karen and Tom Forschner. Their golden retrievers limped and had seizures. The three cats they owned as well, threw up, and had fevers and swelling around the eyes. While she was pregnant, Karen felt awful, too. Her joints ached. Her hearing seemed to dim. Nothing tasted right (Vanderhoof-Forschner 1-6).

During the course of the next nine years, Karen and Tom would trade on sympathy, nerve, tenacity, business connections, political status and an instinctive sort of savvy to amass an enormous amount of power in the field of Lyme disease (Condon, "Conflict" 1). But much of the same courage that began the foundation has formed a nest of political and financial intrigue that now has the organization fighting for its future.

As described by Garret Condon in his article, "Conflict Shadows Couple's Lyme Disease Crusade," the Forschners are at the center of a scientific debate over the essence of Lyme disease (2). Debate and controversy shroud the practice and treatment of North American Lyme disease. Experts question whether the disease is a mild and easily diagnosed illness that can be cured in most cases by an antibiotic, or whether it is an elusive condition caused by an agent that can lurk in the body for years, evading all antibiotics, and causing symptoms that mimic those of arthritis, multiple sclerosis and even mental illness.

Petty arguments and prejudices among professionals must be put aside in order to successfully conduct further research, which will readily enhance the knowledge of Lyme disease. (Condon, "Conflict" 1). Due to the wide spectrum of symptoms that can appear to indicate any number of illnesses, Lyme disease has been dubbed the "Great Masquerader," which is also the definition of its spirochete, Borrelia burgdorferi (Dickson 2). Vague symptoms can include stiff neck, headache, fatigue, and body aches, which resemble flu and arthritis pains and several other different afflictions (Griffin 2).

Results of late detection can be devastating to the individual, leading to serious heart, nervous system and joint problems (Choiniere 1). "When Lyme disease goes inadequately treated, or untreated due to misdiagnosis, it can become chronic," affirmed Kathleen M. Dickson in her article, "On the Lyme Disease Frontier" (1). Chronic Lyme disease can result in severe neurological problems and patients can become severely disabled, while others are mildly affected with an occasional limp or headache brought on by physical or emotional stress (Dickson 1).

According to many professionals, such as Connecticut entomologist Louis Magnarelli, Lyme disease is the consequence of a bite from an infected deer tick (found in Northeastern regions of North American), predominantly originating from grassy meadows or wooded areas. According to Dr. Robert T. Schoen, co-director of the Yale University School of Medicine's Lyme disease clinic, nearly "20 percent of the black-legged ticks in heavy Lyme disease areas are infected . . . and not everyone bitten by an infected tick gets the disease" (Condon, "Lyme" 2).

Apparently, a variety of animals can serve as reservoirs for the disease (places where the ticks can pick it up), including birds, which also help disperse infected ticks over broad distances (Condon, "Lyme" 1). When bitten, only approximately half of the adults noticed a rash themselves, while the remainder stayed at high risk for chronic Lyme disease (Dickson 1). The result is a circular rash on the victim's skin at the site of the bite, which although small in size can dramatically alter a person's life (Hagony 1).

Research conducted on the study of Lyme disease centers itself on the relationship between the host and the parasite, and involves veterinarians, entomologists, physicians, professionals and drug company representatives in order to show the latest findings to researchers and eminent doctors (Dickson 1). "The harder we look, the more we find it," asserts Dr. David T. Dennis, director of the CDC Lyme disease program in Fort Collins, Colorado, when asked by The Hartford Courant reporter Garret Condon concerning frequency of Lyme disease cases ("Lyme" 1).

First discovered in the town of Lyme, Connecticut, in the mid 1970's by Boston physician Allen Steere, the disease was not given clinical description until 1977. By then, the disease was endemic in New England areas, the Mid-Atlantic States, and the Midwest, with a minimal concentration also found in Northern California (Choiniere 3). Since its discovery nearly two decades ago, Lyme disease has been known to cause hysteria among some people.

The result varies from the overuse of drugs and pesticides, to competition and abuse between pharmaceutical companies and doctors, who are believed by many to be over-diagnosing the disease (Heinlein 3). The most controversial subject matter of Lyme disease is indisputably the treatment methods presently used on patients. Antibiotics, such as Cefuroxin, help to relieve major symptoms and eventually eradicate the Lyme spirochete feeding on the host, the ailing human.

In order for antibiotics to be effective, the drugs must be utilized immediately. A study of 254 Lyme patients were tested in evaluation of a regimen involving tetracycline therapy, which proved the longer one is infected and untreated, the longer the antibiotics take to work. Under constant scrutiny is the issue of the legitimacy of chronic Lyme disease symptoms being eased by long term intravenous treatment, abbreviated IV therapy (Griffin 2).

IV therapy is the process of introducing salt-water solution mixed with antibiotics fed by a tube infused to a major vein, which inevitably reaches and spreads through the blood stream ("Intravenous" 507). Some physicians dealing with Lyme on a regular basis are connected to IV infusion companies, which cause prejudices that could influence an HMO to doubt validity of the diagnosis, resulting in many problems such as health coverage issues (Griffin 3).

Many physicians are concerned about whether Lyme disease should be treated immediately at the presence of its early symptoms, or after the disease becomes more distinguishable from other similar illnesses. Dr. Henry M. Feder Jr., professor of family medicine and pediatrics at the University of Connecticut Health Center favors a "wait and see approach," while he acknowledges most patients are not willing to wait for treatment (Condon, "Lyme" 2).

When questioned by reporter Garret Condon, Dr. Robert T. Schoen (cited earlier) asserted, "I think we've learned whether a doctor chooses to treat deer tick bites or not, the stakes are low. Most bites don't convey Lyme disease" ("Lyme" 2). How might one prevent Lyme disease if at high risks or just concerned? The current vaccinations such as LYMErix and ImuLyme that are currently on the market are a recommended solution, yet those vaccinations have not been perfected as of today. Many believe only those living in high-risk zones should receive these shots, while others assert only those with jobs, hobbies, or homes near wooded or grassy areas should (Choiniere 3).

The Centers for Disease Control is not looking at that issue. Sigal, lead investigator for Connaught study, stated, "Only those at increased risk of deer tick bites should be vaccinated. But I don't think the entire population in these states should be vaccinated, certainly not" (quoted in Choiniere 4). The vaccines, which are 92 percent effective after three shots, more so in women, do have side effects. Redness, swelling, soreness where the shot was administered are common, but normally diminish within a week.

Antibodies produced by the vaccine enter the infected deer tick as it is feeding on its victim, killing bacterium Borrelia burgdorferi before becoming transmitted to the person. Many health insurance companies welcome the use of vaccines, since they are considerably cheaper than current treatments for Lyme disease (Choiniere 3). For those squeamish around needles, there are still many precautions that can be practiced routinely, or when required, instead of receiving the vaccination.

When taking a hike through the woods, remain cautious and walk solely on well-groomed trails. For those in contact with nature, it is imperative to wear lightly colored apparel which will show any ticks, as well as long-sleeved shirts and long pants to prevent the tick from reaching the victim's skin. Repellants (notably those with DEET) are indispensable to solicitous hikers and travelers. When returning from an outdoor activity, it is advisable to bathe carefully, examining oneself for ticks and other abnormalities such as rashes. "Check yourself thoroughly, daily, as part of your nightly routine, like brushing your teeth" (Dickson 5).

A brief list compiled by The Detroit News reporter, Gary Heinlein, advises his readers to "play it safe" (4):

1) In wooded or bushy areas, stick to well-groomed trails.

2) Wear light-colored clothing so ticks will show up better.

3) Wear long-sleeved shirts and long pants. Tuck pants into socks and shirt tails inside pants.

4) Use insect repellants containing DEET.

5) Check carefully for ticks when showering after a hike. Look in normally unseen places, such as the backs of knees. Remember, tick bites are seldom felt.

6) Use tweezers, not fingers, to remove ticks. Take a long, slow pull that removes the entire tick and a tiny piece of skin.

7) Clean the bite area and use a topical antiseptic or ointment. (List, as from Heinlein 4.)

Mr. Stewart, the Health teacher at East Hampton High School, advises to tape ticks found to a sheet of paper accompanied by the date discovered. The sheet can be used for quick reference if sudden rashes and/or illnesses occur, which can help speed up diagnosis of Lyme disease (or other tick borne ailments) if suspected (Stewart).

Lyme disease is a real threat, regardless the skepticism of some professionals. Doctors, as well as the people being treated, face constant scrutiny. "Every physician in the country who treats the way I do, based on scientific evidence, is being investigated," said Dr. Burrascano, a physician treating Lyme disease on the Eastern End of Long Island.

He said he had been under suspicion since testifying at a United States Committee on Labor and Human Resources in 1993 (Rosenbaum A-3). Physicians have disagreed for some time over diagnostic tests for Lyme, what drugs to use, particularly in cases that may be chronic or progressive, and how long to use them. Some Lyme patients and their families say differences in treatment practices are the reason why some doctors may get their license revoked, and why other doctors who treat Lyme in ways not within conventional procedures worry that they, too, could be put out of business.

Many patients have protested in the past to support their doctors for fear of losing them and the comfort they bring (Rosenbaum B-4). One careless day in the woods can change an individual for the rest of his or her life, just from the tiny bite of a deer tick carrying Lyme disease. The Forschners, a family affected by Lyme disease, are convinced that the tick-borne disease killed their son Jaime in 1991 (Condon, "Conflict" 2).

The prevention and precaution taken by people must be maintained consistently, or else it is not beneficial. Furthermore, disagreement among medical professionals is causing confusion among patients (Heinlein 1). There must be unification among doctors in terms of the diagnosis, treatment, and prevention of Lyme in order to ensure the safety of citizens infected and at risk in this "strange world of tick-borne disease" (Condon, "Conflict" 1).

Works Cited:

Burrascano, Joseph. Letter to Senator Kennedy. 26 September 1993.

Choiniere, Paul. "Lyme Disease Vaccines Prove Highly Effective." The Day. 23 July 1998. 4 February 2000 .

Condon, Garret. "Conflict Shadows Couple's Lyme Disease Crusade." 13 July 1997. 2 February 2000 .

- - - . "Lyme Disease Spreading." The Hartford Courant. 3 June 1993. 9 February 2000 .

Dickson, Kathleen M. "On the Lyme Disease Frontier." The Day. 11 May 1998. 4 February 2000 .

Griffin, Jerry. "Doctors Disagree, Politicians Deliberate and Patients Wait." Norwich Bulletin. 14 September 1999. 4 February 2000 .

Hagony, Linda S. "Misdiagnosis." Editorial. The East Hampton Star, 11 January 2000: (no page available).

Heinlein, Gary. "Experts Argue Lyme Disease Threat." The Detroit News. 5 July 1999. 4 February 2000 .

"Intravenous." New Webster's Dictionary and Thesaurus of the English Language. 1993 ed. Lasalandra, Michael. "Study: Lyme Disease Treatment Effective." Boston Herald. 2 February 2000. 9 February 2000 .

Rosenbaum, Susan. "Lyme: No Agreement." East Hampton Star. 1 January 2000: pp A-3, B-4.

Vanderhoof-Forschner, Karen. Everything You Need To Know About Lyme Disease and Other Tick-Borne Disorders. Toronto, Canada: John Wiley & Sons, Inc., 1997.

The Lyme Disease Quilt Page

Lyme Quilt main page

Lyme Disease related links

Copyright ©1998-2001 The Lyme Disease Quilt Page