Hartford Courant
July 13, 1997|By HILARY WALDMAN; Courant Staff Writer
Karen Vanderhoof-Forschner politely greets a visitor to her Lyme Disease Foundation offices and with barely another word rolls a video that she says 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 speak or smile, never run or climb, would never even eat strained food from a jar, destined instead to subsist on nutrients pumped into his stomach through a tube.
FOR THE RECORD - Correction was published August 16, 1997 on Page A2.
* The name of U.S. Sen. Alfonse M. D'Amato, R-N.Y., was spelled incorrectly in a story on Page 1 on July 13 and in a number of previous stories.
The couple had battled infertility for 10 years before this baby, called Jamie, was born on July 7, 1985. His disabilities devastated them.
The year Jamie was born, sickness surrounded Karen and Tom Forschner. Their golden retrievers limped and had seizures. The three cats 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.
She and Tom searched for a reason.
Their quest led to another birth: the Lyme Disease Foundation, born in 1988 in the Forschner's Tolland basement.
In the next nine years, they would trade on sympathy, nerve, tenacity, business connections, political good fortune and an instinctive sort of savvy to amass an enormous amount of power in what has become the strange world of tick-borne disease research.
But much of the same moxie that built the foundation has created a nest of political and financial intrigue that now has the organization fighting for its future.
The Forschners are at the flash point of a scientific debate over the very nature of Connecticut's unofficial state disease, named for the towns of Lyme and Old Lyme where it was identified.
The debate is complicated by a scientist at the National Institutes of Health in Washington who has risked his career to discredit the Lyme Disease Foundation. He says he is trying to protect the public from misinformation.
It is a debate that boils down to this: Is Lyme disease a mild and easily diagnosed illness that can be cured in most cases by oral antibiotics? Or is it an elusive condition caused by an agent that can lurk for years in the body, evading antibiotics, and causing symptoms that mimic arthritis, multiple sclerosis and even mental illness?
Further muddying the issue is the fact that there is still no foolproof test to confirm active Lyme disease.
The Forschners are convinced that Lyme disease killed Jamie in 1991. And while they claim their foundation aims only to provide a forum for any legitimate research, they clearly believe that Lyme is elusive and potentially chronic.
Each year, they host a national conference where leaders in Lyme research present their newest findings.
Although scientists from both camps are invited, one researcher said the conferences have taken on the flavor of religious revival meetings, with patient-participants clapping and booing at the lectures.
The atmosphere stifles free scientific debate, said Dr. Alan Barbour, because speakers from the easy-to-treat school are vilified, while doctors from the chronic camp -- known to patients as ``Lyme- friendly'' or ``Lyme-literate'' -- are applauded.
Barbour is a microbiologist and physician at the University of California at Irvine, who was the first to grow Lyme- causing bacteria in a laboratory. He recently quit as a medical adviser to the Lyme Disease Foundation's journal, saying a lot of its articles would have been rejected by other scientific publications because they lacked standard research controls.
There are other accusations from scientists: that the Forschners organize noisy protests outside scientific conferences, that they are bankrolled by companies that make or administer intravenous antibiotics, one treatment for chronic Lyme.
Tom Forschner denies any involvement in the protests. Although the foundation gets some money from intravenous drug companies, he said, it also gets support from companies that make tick repellents, Lyme disease tests and vaccines.
For all its detractors, the Lyme Disease Foundation continues to have support from the national Centers for Disease Control. The foundation has a $75,000 CDC grant to produce a handbook for physicians on how to diagnose and treat Lyme disease.
The handbook, though, is also an example of how foundation critics have taken kernels of truth and turned them into a broad indictment of the Forschners.
James Herrington, a CDC public health education specialist who has worked with the Forschners on the handbook, said a draft has taken two years to complete because of staff shortages at the foundation, not because of rumored disputes over its content.
Granted, he said, there has been some haggling over the Forschner's draft, which he said included some information that the CDC did not accept as scientific fact.
But unlike a similar situation, in which the National Institutes of Health scrapped a Lyme disease poster over a dispute with Karen, Herrington said the Forschners have been cooperative in the editing.
He added that once complete, the 100- plus page handbook will be a valuable guide to help doctors diagnose and treat Lyme disease.
Mom and pop shop
In its heyday, the foundation had a staff including a medical director to edit its journal and provide other clinical advice. Although its budget hovers around $470,000, the organization has started to shrink back to the mom-and-pop shop that started it.
FOR THE RECORD - Correction was published August 16, 1997 on Page A2.
* The name of U.S. Sen. Alfonse M. D'Amato, R-N.Y., was spelled incorrectly in a story on Page 1 on July 13 and in a number of previous stories.
Tom says they can no longer afford to pay a physician, but some of the trappings remain. They keep a suite of offices on the 18th floor of the Gold Building in Hartford. Tom is paid $80,000 as executive director. Karen calls herself a 70-hour-a-week volunteer. They have two employees, but nobody with medical expertise. When money gets tight, Tom said, he forgoes his paycheck.
Karen and Tom blame a recent drop in contributions on Edward McSweegan, a microbiologist and former Lyme disease program officer at the National Institutes of Health. He has used the Internet, his Ph.D. and his government title to tell anyone who will listen that the Forschners have used their political clout to intimidate the government into promoting bad science.
McSweegan has been suspended for two weeks without pay for, among other offenses, sending e-mail messages from his home and work computers raising questions about the Lyme Disease Foundation. One message contained a skull-and-crossbones and referred to the foundation as ``whacko.''
Karen and Tom asked the NIH to compensate them for McSweegan's actions by giving them an award and allowing them to hold this year's three-day Lyme conference on the NIH campus in Bethesda, Md. They got both.
John R. LaMontagne, director of the division of microbiology and infectious diseases at the National Institute of Allergy and Infectious Disease, of the NIH, and McSweegan's boss, downplayed the significance of the award. ``It's just a stupid lucite plaque,'' LaMontagne told The Washington Post. ``It's not like we're giving her $250,000.''
But McSweegan and others said a seal of approval from the National Institutes of Health is far more valuable than the plastic it's printed on. It gives the group credibility. The same thing happens when the Forschners drop the names of U.S. congressmen and senators in their conversations with agency bosses, McSweegan said.
``Part of the reason they instill fear is they wave [U.S. Sen.] Joe Lieberman's name and picture around the NIH,'' McSweegan said. ``His name is a loaded gun at the NIH.''
Assertive
Karen believes she got Lyme disease when she was pregnant with Jamie. She was an insurance consultant, going to night school for the alphabet soup of academic and insurance titles -- MBA, CLU, CPCU -- that still follow her name on official literature and business cards.
Tom, a certified public accountant, was on the fast track in the Hartford office of Peat Marwick, one of the nation's largest accounting firms. Around 1985, Tom was transferred to New York City to join a training program that might put him in line to be a partner.
Karen was furious. The couple owned their Dutch-colonial style house in Tolland and a move to the expensive New York suburbs would lower their standard of living.
``She came in to talk to me, which was fairly rare for me,'' said Joe Fisher, Tom's boss at the time and now a member of the Lyme Disease Foundation's board of directors.
Fisher wouldn't budge, but if it were not for that kind of assertiveness, Karen said, she and Tom might never have met.
They became a couple in 1972, when he was a senior at Muskingum College in Ohio, and she was an underclassman.
She was dating a football star, but dropped him so she'd be available when Tom Forschner finally noticed her.
One night, Karen parked herself in Tom's roommate's science lab and refused to leave until the roommate delivered Tom.
``I waited, flirted, everything I could possibly do,'' said Karen, blushing and laughing along with Tom at their dining room table, with 3-year-old daughter, Christy, playing nearby. ``It was two weeks to graduation. There was nothing else I could do.''
Karen and Tom were married in 1974, and settled in Connecticut four years later, each wanting to return to the East Coast where they were raised.
In 1985, not long after the Forschners rented a house in Stamford so Tom could start management training, Karen got pregnant and sick.
The bacteria that causes Lyme disease had been isolated only four years earlier, and few doctors knew enough about the disease to consider it in a diagnosis.
There were occasional stories in the news, but Karen, by her own admission, does not pay much attention to news.
For the next two years, Karen and Tom's lives were consumed by the task of caring for Jamie. By the time he turned 2, they could barely go on. The baby vomited every time he ate. Doctors said he was blind, deaf and mentally retarded, an assessment Karen still disagrees with. He had no muscle tone. The doctors could not say why. One suggested that Jamie's problems were caused by inept mothering.
Karen and Tom set out to find their own answers. They checked the paint in their house, the water, the medicines Karen took during pregnancy. Then they bought a medical book. Some of the symptoms of Lyme disease matched Jamie's.
The couple was back in Tolland now, the time spent caring for Jamie and Karen forcing Tom to give up his career with Peat Marwick. He became an officer of Northeast Savings Bank -- a job he kept until going full-time for the foundation in 1990. Finally, they scoured the land around the Stamford house and found it was infested with deer ticks.
Karen was tested. Jamie was tested. The tests showed that each had some antibodies against the Lyme bacteria, indicating that they may have been infected at some time. When the dogs and cats died, their bodies were sent to a lab at the University of Connecticut, where scientists found some evidence of infection.
There is still no test to confirm active Lyme infection, the tests only show if the body has tried to fight Lyme infection in the past. And the medical literature still has no evidence that a fetus exposed to Lyme during pregnancy can be as damaged as Jamie.
But Karen had her answer. She wanted help before it was too late.
A plea in New York
In 1987, Karen went to New York, where she had heard a group of scientists were meeting to discuss Lyme disease. Around the Times Square conference center, Karen posted signs: ``Mother with Lyme, three cats, dog, baby dying of Lyme. Please help.''
Nobody was able to tell her how to save Jamie. But with encouragement from scientists at the conference, Karen and Tom formed the Lyme Disease Foundation.
To assemble a board of directors, Karen tapped anybody she knew. She enlisted business associates and other Lyme activists. The scientists referred her to Willy Burgdorfer, the NIH researcher who in 1981 discovered the organism that causes Lyme disease. He agreed to serve.
``I asked for people with insight who could bring a name, expertise or money to the board,'' Karen recalled.
She got the names. But for a long time, it was Karen's parents, Irwin and Ruth Vanderhoof, who were the chief benefactors.
It would take another series of lucky breaks to build the clout and bring in the money.
The first came in 1988, when the TV news magazine ``20/20'' broadcast a story on Lyme and gave the foundation's new 800 phone number at the end of the report. The response, Tom says, jammed the phone lines in all of Tolland.
One of the people who called was U.S. Rep. Berkley W. Bedell, D-Iowa, the fishing equipment magnate who thought he had Lyme. Bedell wanted to fly to Connecticut to meet Karen and Tom.
But their house was no place for visitors, especially a millionaire congressman. There was antiseptic cleanser all over the rugs from Jamie's treatments. The pets were sick, the furniture was a mess. Bedell offered to fly Karen to Washington instead.
Bedell had turned to the Lyme Disease Foundation for help, but the tables turned quickly.
Bedell was leaving Congress, too weak from his illness to continue serving. But he was still able to open doors at the Capitol. Bedell took Karen to the Senate dining room, where his wife, Elinor, was having lunch with Sen. Paul Simon's wife, Jeanne.
Mrs. Bedell spotted Connecticut's brand new U.S. senator across the dining room and rushed over to introduce Karen.
Sen. Joseph I. Lieberman, said the brief meeting ``tore at my heart.'' Karen told him her son was dying of Lyme disease. Lieberman asked how he could help.
With no experience around government, Karen had just learned that senators serve six-year terms, congressmen two years. ``I said, `I don't know what you do here,' '' Karen recalled.
Lieberman submitted a bill designating a Lyme Disease Awareness Week. He also urged the U.S. Centers for Disease Control and the National Institutes of Health to earmark money for Lyme research.
Karen learned fast. She learned to get a lawmaker's attention by sitting in the office waiting room until somebody would talk to her.
She collected case histories of people who called the foundation for help. When a lawmaker said ``we don't have Lyme in my state,'' Karen said, ``yes, you do,'' and pulled out her file.
Karen learned members of congress and high-ranking scientists will attend a rally when they're being thanked. She organized rallies where patients gathered with signs and banners thanking the government for its support.
She took snapshots at the rallies. The photos gave the Forschners an aura of power. There are photos of them surrounded by Lieberman, Rep. George Hochbrueckner and Sen. Alphonse D'Amato, both of New York, Rep. Sam Gejdenson, D- Connecticut, and officials of the NIH.
Karen appeared to have celebrities in her corner, too. Everytime Karen heard about a concert coming up in Hartford, she would write to the artist asking them to narrate a public service announcement.
``It's chutzpah,'' Karen acknowledged. ``Some people would call it pushy in a woman.''
Nominated Lieberman
While money often buys political power, the Forschners have given very little to campaigns.
Still, in 1994, they were given the honor of nominating Lieberman for a second term at the Democratic State Convention in Hartford.
Their clout, or the appearance that they have some, has allowed them to pick up the phone and get the ear of the top government scientists. That has enabled them to influence research, win grant money, finagle an award, and produce videos and pamphlets to educate the nation about Lyme disease.
It also has stirred controversy, although that is not surprising in an environment where patient groups now feel free to push the government for help curing diseases from AIDS to breast cancer, said LaMontagne, of the NIH.
A color photo in the foundation office shows Jamie as a kindergartner, shortly before he died.
And since then, the Forschners crusade to save their son has been a quest to honor his memory.
They say their goal is to go out of business someday, but their end point seems a long way off. Two pharmaceutical companies are close to marketing a Lyme vaccine, but the Forschners do not believe it will protect everybody. And since Lyme was discovered, at least two other tick- borne illnesses with different symptoms and different treatment requirements have been isolated.
Keeping the foundation going, say Karen and Tom, is a constant sacrifice for them and Christy. ``Before this happened, we were basically YUPPIES,'' said Tom, repeating one of his favorite lines.
``What scares people is that people can be motivated not by money, but because they want to do the right thing,'' Karen said. ``Sometimes in life, you have to do something that's a gift.''