Article from Hartford Courant, "Conflict Shadows couple's Lyme disease crusade", July 13, 1997.

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Jul 13, 1997, 3:00:00 AM7/13/97
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Original article can be found at:
http://news.courant.com/article/ctnews1.stm

Conflict shadows couple's Lyme disease crusade

By HILARY WALDMAN
This story ran in the Courant July 13, 1997

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.

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.

Revival meetings?

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 villified, 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 repellants, 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.

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
foregos 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.''

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MHHirsch

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Jul 14, 1997, 3:00:00 AM7/14/97
to

>Original article can be found at:
>http://news.courant.com/article/ctnews1.stm
>
>Conflict shadows couple's Lyme disease crusade
>
>

Thanks, Art, for posting this article.
In checking out the Amazon on-line bookstore I found the following about
Karen's book. Everything You Need to Know About Lyme Disease and Other
Tick-Borne Disorders by Karen Vanderhoof-Forschner Paperback, 240 pages,
Published by John Wiley & Sons, Publication date: May 1, 1997 Dimensions
(in inches): 6.04 x 9.02 x .71 (This is how it is listed.)
I thought it was a very nice kudo!
Ann

<<Health and Fitness Expert Editor's Recommended Book, 07/01/97:

Lyme disease is so difficult to detect that the average sufferer sees five
physicians before the disease is properly diagnosed. Thirty-five percent
of Lyme disease patients suffer permanent bodily damage, and 17
percent lose their jobs. Karen Vanderhoof-Forschner fared even
worse than that: she contracted the disease while pregnant (it was
misdiagnosed as arthritis), and passed it on to her unborn child, who
died when he was 6. She became an expert on ticks and the diseases
they spread, started the Lyme Disease Foundation, and compiled all
her knowledge into this book, a handy guide for anyone living in
tick-infested areas.
Synopsis:
An estimated two million people in the U.S. alone have Lyme Disease
and these patients see an average of five physicians each to obtain a
proper diagnosis. Now Karen Vanderhoof-Forschner, president of the
Lyme Disease Foundation, offers this layperson's guide to the best
treatment and prevention of Lyme Disease and other tick-spread
diseases.>>

RACEr91

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Jul 14, 1997, 3:00:00 AM7/14/97
to

>Original article can be found at:
>http://news.courant.com/article/ctnews1.stm
>
>Conflict shadows couple's Lyme disease crusade
>
>By HILARY WALDMAN
>This story ran in the Courant July 13, 1997

Thanks for posting this, Art. For those who didn't get to see the actual
newspaper, this article got the banner headline and maybe 1/4 page of
print on the front page of the Sunday paper! The article was continued on
page 8 and took up close to 3/4 of that page, including a super photo of
Tom & Karen with their daughter.

In my opinion, the article was very well balanced and as thorough as it
could be in the amount of space allotted.

Can't wait to see part 2. Nice job Hilary and the Hartford Courant!

Steve

MMccoy1510

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Jul 15, 1997, 3:00:00 AM7/15/97
to

In article <19970714233...@ladder01.news.aol.com>,
rac...@aol.com (RACEr91) writes:

>Can't wait to see part 2. Nice job Hilary and the Hartford Courant!
>
>Steve
>
>

Me either! Sure gained a lot of insight into how the Foundation came
about and their continuing struggle. Thank you Karen and Tom for all you
have done to help us all.

Marta

MHHirsch

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Jul 15, 1997, 3:00:00 AM7/15/97
to

In article <19970715075...@ladder02.news.aol.com>,
mmcco...@aol.com (MMccoy1510) writes:

Part two was posted yesterday. Hope you have seen it by now. I reposted
it again, just in case. Thanks, Rhausta, for getting it to us so quickly
yesterday.
Ann


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