The following hard-to-find essay by Ken Nusbaum recounts the genesis of the congressional hearing on

Lyme disease, at which listeners were first treated to Burrascano’s fantastic “Lyme disease conspiracy,”
and to another telling of Karen Forschner’s tale about her son’s struggle with Lyme disease (which, to
me, always sounded more like a struggle with cerebral palsy).

CONGRESS (1993 - 1994)

January 5, 1993 - November 26, 1993
Senate Committee Meetings by Date Compiled from the Congressional Record's Daily Digests via
Thomas at thomas.loc.gov

LYME DISEASE

Committee on Labor and Human Resources: Committee concluded hearings to examine the adequacy of
current diagnostic measures and research activities in the prevention and treatment of lyme disease, after
receiving testimony from Senator Bradley; Representative Hochbrueckner; Joseph McDade, Associate
Director of Laboratory Science, National Center for Infectious Disease, Centers for Disease Control and
Prevention, and John R. LaMontagne, Director, Division of Microbiology and Infectious Disease,
National Institute of Allergy and Infectious Disease, both of the Department of Health and Human
Services; Matthew Cartter, Connecticut State Epidemiology Program, Hartford; Karen Forschner,
Tolland, Connecticut, on behalf of the Lyme Disease Foundation; Andrea Keane-Myers, Baltimore,
Maryland; Carl Brenner, Hawley, Pennsylvania; Ruchana White, Suffern, New York; Joseph Burascano
Jr., East Hampton, New York; Kenneth B. Platt, Ames, Iowa; and Allen C. Steere, Boston,
Massachusetts.

Karen Forschner’s testimony:

http://ourworld.compuserve.com/homepages/frankd/sen1lyme.htm
http://www.angelfire.com/biz/romarkaraoke/testKarn.html

Joe Burrascano’s testimony:

http://www.angelfire.com/biz/romarkaraoke/testDrB.html

Science to Circus: Enter Lyme Disease, ‘From the Lab to the Hill, Essays Celebrating 20
Years of Congressional Science and Engineering Fellows’. Anthony Fainburg, Ed. American
Association for the Advancement of Science, Washington, DC 1994.

Science to Circus: Enter Lyme Disease

by Kenneth E. Nusbaum, DVM, PhD

1992-1993 AVMA CONGRESSIONAL FELLOW

Early in my fellowship, I had tried to sell Van Dunn on a hearing on emergent agents. Van is a
physician serving as Senator Edward Kennedy's (DMA) senior health policy advisor for the

1
Committee on Labor and Human Resources, and a veteran of public health departments and
former assistant medical school dean. His comment: Too broad. I whittled the topic down to
rabies and Lyme disease, hoping to work mostly on rabies. The memos sold me: There were
great increases in the numbers of reported cases of raccoon rabies spreading up the East Coast
from Georgia and Alabama into New York and New England, and half of the rabies positive
raccoons were found in the yards of suburban homes. Lyme disease was spreading wherever deer
were spreading, and efforts to control the tick vector bordered on universally unsuccessful.

Pencilled on one of these terror laden bits of sharp prose was the seemingly ridiculous question,
"Why is this important?" Why? It isn't obvious? People in pain, people imperiled, public health
systems in shambles! And then the political nature of my offering dawned on me, to my
annoyance and edification. Lyme disease or rabies was important only if they had an impact on
Massachusetts, Kennedy's state. In that simple way, one can define most political actions. Tip
O'Neill was right, all politics is local, regardless of how much I would have had national interests
supersede reelection considerations.

Lyme disease was chosen because people were getting sick. Lyme disease is a complex
ecological and clinical entity, and the sociologic aspects are numbingly complex and emotional.
After 10 months of my fellowship, this simple hearing on Lyme disease was to give me my
clearest explanation of why I was there, why the fellowship program persists, and why it must be
continued.

The goals for the hearing were modest: establish Lyme disease as a problem, characterize the
disease, define the parameters of suffering, and see what the National Institutes of Health (NIH)
and Centers for Disease Control and Prevention (CDC) were doing about all this. A small and
scientific hearing. Something that would give the senator the "right" answers.

We also wanted to deal with the phenomenon of chronic Lyme disease. Academic medical
thinking held that most cases of Lyme disease responded favorably to one to two courses of
common oral antibiotics administered for two weeks to a month. Reports of children on
intravenous antibiotics for up to 700 days caused multicategorical alarm. There is no model for
prolonged maintenance antibiotic therapy under which patients were fine but reported symptoms
anywhere from days to weeks after removal from therapy.

We asked the National Institute of Allergy and Infectious Diseases for a briefing and met with
Anthony Fauci, M.D. (of AIDS fame), and John La Montagne, Ph.D., and Steven S. Hausmann,
deputy director from the National Institute of Arthritis and Musculoskeletal and Skin Diseases.
Their advice was direct and unequivocal:

A good test (sensitive, specific, and universally applicable) was needed.

Vaccine development was problematic because even natural infection did not confer long-term
immunity.

Chronic Lyme disease may in fact be portly syndrome, similar to post influenza syndrome, and
the result of overstimulated lymphokines: an unpleasant to awful, long-term syndrome, but one

2
the patient could fully recover from without further treatment.

The CDC was equally anxious to help out. Information packets preceded a televideo conference
with Ruth Berkelman, M.D., a sharp physician deeply concerned about the future effects of
infectious disease and dwindling antibiotic efficacy.

This was the plan: Get a recovered patient (no victims allowed, only patients or survivors), a
physician who understood treatment, an epidemiologist (preferably a veterinarian), and
representatives from NIH and CDC. In the end, CDC would obviously appear to need more
money, NIH would appear busy and competent, and the senator would realize that veterinarians
are contributing to the public health of this great nation.

Scheduling was not simple. The date was bounced around with lots of calls and contingencies
and switched from week to week and from this day to than Finally, July 30 was chiseled in stone
and the word went out.

The exercise of power is a righteous function of the Senate. So when NIH called to say that
Fauci couldn't make it, I told Van. Van was nor pleased, nor was he flexible as I have learned to
be in academia. "Call NIH," he said, "and tell them the senator wants Dr. Fauci there. Fauci
knows how the game is played. He wants the money; he'll come talk." I called back. He did want
the money.

CDC would provide us with whomever we wanted, and we chose Dr. Berkelman. A physician in
Baltimore scouted out a recovered acute Lyme disease victim who was doing a Ph.D. on the
agent. Finding a veterinary epidemiologist or entomologist to testify was harder, but we found
one at Iowa Stare University who seemed to be able to convey the thoughts I wanted to get
across. An internationally respected physician who had discovered Lyme disease and worked at a
Boston clinic (the Massachusetts connection) agreed to be a witness.

About 3:00 p.m. on the afternoon of Thursday, August 22, the director of one of the several
Lyme disease foundations called and insisted on her right to rectify. I attempted to explain that
our hearing had a scientific orientation with a minimum of patient input. After a conversation
she found not very satisfying, I hung up and left early.

Friday, I had three messages waiting from Thursday, and the phone was ringing. The general
tenor of the calls fell into two categories: Many people wanted to tell their personal stories about
the difficulties of getting treatment. Listening was time-consuming and not very instructive after
the first four calls—and frustrating because there was nothing that the Senate could do for these
people.

The second category was enraged callers: How dare Kennedy try to cut their insurance benefits,
limit their time on antibiotics, listen to physicians not of their choosing, not have sick children
for witnesses! Lyme disease was underdiagnosed, not overdiagnosed, and they said it had been
around for 20 years. How could it be an emerging agent? Phone and fax were busy all day with
people complaining about the disinformation spread by a very efficient and shamelessly
inaccurate computer bulletin board.

3
By Monday, Van and I were on the phone, two interns were fending off calls, and other people
were waiting on hold. Everyone wanted to testify, everyone nominated physicians to testify for
their side, and most leveled charges of stacking, biasing, or misrepresenting the cases. Whose
idea was this? Blatant ad hominin attacks were made against our chosen physician. Why
weren't we listening to other physicians dedicated to long-term antibiotic therapy? The
interesting thing is, there had never been a Lyme disease hearing in either the House or the
Senate, and Lyme disease patients chose to attack us, the very people who were taking them to
their political high-water mark.

By afternoon, we had decided to invite one of their physicians to testify. We called around, we
read curricula vitae. Several were eliminated for lack of research credibility. One physician we
called transmitted anger, even rage, over the phone; no one's cause would be served by a volatile
witness. One physician seemed calm and reasonable and anxious to participate. Would he
come? Yes.

Supportive elements appeared by popular demand as well. The Association of State and
Territorial Health Officers called to nominate a physician-epidemiologist from Connecticut. I
called and he told me that handling Lyme disease was worse than dealing with AIDS, which he
had also done. This shrewd observer of all human conditions illuminated his examples with
quotes from Galileo and the "Hitchhiker's Guide to the Galaxy." I had to have this guy!

We now had a good defense against one part of the attack, but the callers switched to demands
for a chronically afflicted patient—again, someone of their choosing. A lobbyist stepped in and
found us a credible witness who was reticent to be the "Lyme disease poster child." But still,
foundation directors, angry mothers, and defenders of children's rights called in and demanded a
chance to speak. We accepted no more, but agreed to submit all faxes and letters into the hearing
record. And they came; more than 230 faxes and letters from Lyme disease patients, most of
which followed a strikingly similar pattern. By now, I was sick of Lyme disease.

And then a physician called. He reaffirmed the scientific basis for treatment, rejected many
claims for chronic disease, and answered my burning question: If these people don't have Lyme
disease, what do they have? Why do they "want" to have Lyme disease? This physician, and the
several I was to talk to subsequently, said that most of these people were really sick. Some had
multiple sclerosis, some amyotrophic lateral sclerosis, some had agitated depression, but in every
case, Lyme disease was preferable because it was curable. No physician denied the suffering of
these "chronic Lyme disease" patients. But few of those I spoke to would legitimate the
diagnosis. I asked if academic physicians would mount a response to the fax traffic. An
outpouring of 13 letters followed, all calm, moderate, and supportive of the "conservative" side.

And of their fellow physicians treating Lyme disease with long term antibiotics? "Scary." Into
business with a big 'B'." "Wrong."

Word was getting around the Hill, too. Senator Bill Bradley (D-NJ) and Senator Christopher
Dodd (D-CT) wanted to speak. Representative George Hochbrueckner (D-NY) called, Rep.
Christopher Smith (RNJ) called, and Rep. Nita Lowey (R-NY) sent over a statement. When her

4
staffer called to ask if she could speak, I explained chat this was a Senate hearing and we had a
tight schedule. He said okay, but he couldn't guarantee that the congresswoman herself wouldn't
be back in direct contact with me. Collegial intimidation is a way of life for some on the Hill—
but useless under these circumstances. I didn't have to budge.

All this time, I had been ignoring the rest of the office calendar. But things had been piling up,
and when I left the office on tile evening of the 29th, I was aware that Friday, hearing day, would
be tight. And that was fine; let's get this over with.

I arrived at the office at 8:00 a.m. on Friday. Van was already there, a disquieting smirk twisting
his face. "They canceled the hearing," were the first words out his mouth. What? How could
they? Markup, nomination hearing, filibuster breaking vote.

Okay, so it happened. But I was the one who got to explain this to the Lyme people who'd been
lining up at the hearing room since 7:00am. And people from Ohio, New Jersey, New York, and
elsewhere, all wearing green ribbons, were furious.

I apologized to one man who led a group from Long Island.

"Yeah, sure," he said. "We're not surprised. We're used to being treated like this."

"You think the Senator would waste your time or his to insult you?" I asked. He gave me a grim
smile and turned away.

From the decision to include a Lyme physician, the authority of the hearing had been slowly
shifting from science to vox populi paranoia. Now the shift of power was rapid and obvious. The
staff director came in to continue to mollify the crowd. When he saw their concern, he became
interested. When he saw the little boy in the wheelchair, he became enraptured. Here was a
media event for the plucking! But to get these people back again and keep Kennedy in their
good graces? Yes, he'd let the director of the foundation speak. Yes, they could have more
witnesses. Yes, we'd reschedule for next week.

And so it came to pass that on the fifth day of August, the hearing went down. Kennedy chaired
the thing through most of the victim panel and was moved by the suffering, but he had to leave
for a floor vote. Senator Paul Wellstone (D-MN) chaired it through part of the epidemiologist
panel until Dodd took over and heard some disquieting things about the physicians of his state.
Senator Howard Metzenbaum (D-OH) came to life when he realized there was a controversy
about treatment modalities. And then it was over.

By some accounts it was a great success. Every side was pleased that it had a chance to air its
views. Victims were satisfied, physicians were satisfied, epidemiologists were satisfied, and
NIH and CDC had a chance to tell their stories. The Boston press was great, with stories in the
Globe and on television news.

But who had made the impression? What was the take home message for Kennedy? Kennedy,
never blind to human suffering, saw sick people. His press secretary and staff director saw big

5
headlines. Obscured was the inappropriate therapy, the baseless treatments, the millions of
wasted insurance dollars, and the undiagnosed thing eating at the bodies and minds of thousands
of Americans. The primacy of advocacy over science was reasserted.

In the early European stage of medicine, the patient told the physician what treatment was
needed. Gradually this shifted until the physicians examined, diagnosed, and then prescribed.
Are we now on the brink of a great return when patients will once again tell physicians what’s
wrong and what’s needed? It’s built into the redesigned Office of AIDS Research Alternative
Strategies Office. Perhaps that is the real goal of the new NIH Center for Alternative Medicine.

And now I know why we need Fellows.