United States. Congress. Senate. Committee on Labo.

Lyme disease : a diagnostic and treatment dilemma : hearing before the Committee on Labor and Human Resources, United States Senate, One Hundred Third Congress, first session, on examining the adequacy of current diagnostic measures and research activities in the prevention and treatment of lyme dis online

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Online LibraryUnited States. Congress. Senate. Committee on LaboLyme disease : a diagnostic and treatment dilemma : hearing before the Committee on Labor and Human Resources, United States Senate, One Hundred Third Congress, first session, on examining the adequacy of current diagnostic measures and research activities in the prevention and treatment of lyme dis → online text (page 2 of 16)
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later the heart condition was resolved and his symptoms had improved, but he was
still not well.

The doctor then decided to try another medication. In order to do so, however, he
had to stop all other medication for a few days to let Jonathan's system clear out.
In those few days he had a severe relapse. In a gradual procession over 5 days, Jon-
athan got worse and worse. By the fourth day ne became extremely tired, and by
the fifth day, the headaches had returned and he was completely dehabilitated.
After 2 weeks of the new medication, he was able to walk again, but had neuro-
logical deficits. He lost the ability to do simple mathematical computations, even
though he is a gifted math student studying algebra. He also began to mix up words
and letters ana lost his ability to concentrate. His severe headaches also remained.
It has taken until now for his mental faculties to improve, and ho remains on I.V.

Jonathan's treatment costs are roughly $2,500 per week, and until this year, the
Damas' medical insurance has covered the charge. Their insurance companies, how-
ever, have not yet agreed to cover the 1993 medical bills.

Statement of William J. Didonato

4425th Street, Atco, NJ oboo4, phone: (609) 767-oois

Mr. DiDonato is the father, brother-in-law, and friend of patients with Lyme Dis-
ease and he is also the coordinator of a Lyme Disease support group.

Mr. DiDonato is concerned with the lack of understanding by some educators as
to the complications and neurological effects of the disease. Some of its effects on
the ability of young people in school are test-taking problems, memory loss, head-
ache, lack of concentration.

Mr. DiDonato said, "My daughter has been evaluated by a child study team be-
cause she had to have home-study tutoring due to Lyme Disease. It has been con-
cluded that she has a learning impairment that may or may not affect her for the
rest of her life. Another major concern of mine is that there is no pharmaceutical
company in the United States that has developed an intravenous antibiotic for treat-
ment of Lyme Disease."

Mr. DiDonato also said, Tm very fortunate to be employed with Philadelphia
Electric Company whose excellent benefits make it possible for my daughter's treat-
ment. The total cost of treatment since was first diagnosed twenty months ago has
exceeded $30,000. My insurance company disputes the treatment prescribed by our
doctor. In addition after all the money that has been spent on my daughter, her con-
dition is only 25 percent improved."

Mr. DiDonato stated, "I feel that the Centers for Disease Control and the National
Institute? for Health are doing an injustice to all Lyme patients by not accepting
the on-the-job diagnosis and first hand experience of those stricken with the disease.
I would hope that the real life experiences and physical data from doctors in the
field would be included in CDC and NIH criteria for dealing with the disease. We
need a concerted effort to find a cure."

Mr. DiDonato concluded, "I have brought with me today a petition signed by
twenty-two other concerned citizens and would like it entered into the record."

Statement op Beverly G. Dyer

1863 Kalorama Road, Washington, DC. 20009

I was bitten by a tick in June of 1989 — not hiking in the woods — but at a Yale
Law School graduation party, in a fellow student's back yard. I developed a rash,
but a dermatologist was unable to diagnose Lyme disease or any other basis for the
rash. After 6 months, I began experiencing severe joint pains, wooziness, fatigue,
and pain behind the eyes.

I visited at least seven doctors, including a neurologist and a rheumatologist. I
discussed the possibility of Lyme Disease with each of them, but the each said un-
equivocally that I did not have Lyme Disease. None of them knew what was wrong,
nor were they particularly concerned. One doctor laughed at me when I suggested
trying antibiotic treatment to see if it would help. One doctor refused to listen to
my symptoms, immediately diagnosed anxiety and depression, and prescribed
Prozac. I was ready to give up on the medical profession.

Eventually, through a string of references, I went to see Dr. Joseph Burrascano.
I travel hundreds of miles to visit him every month or two. This is not unusual,
in fact, most of the Lyme Disease patients I know of in the DC. area travel hun-

dreds of miles for treatment — none have found a doctor here with expertise in long-
term treatment. One doctor in northern Virginia is treating several patients, hut his
patients know more than he does, and are telling him what to do.

Despite more than a year of treatment, my symptoms have only marginally im-
provedV although, when I have stopped taking antibiotics my have symptoms wors-
ened. The only time my symptoms improved was following my first 7 week course
of IV treatment. I still experience joint and muscle pain, woozmess, loss of balance,
numbness in the right side of the body, fatigue, ana pain and pressure in the eyes,
amongst many other symptoms. Overall, I often feel like I have been run over by
a truck.

Lyme disease has had a serious impact on my life. I can only work half time in
my job as a lawyer, and have cut back on almost all family and social activities.
At times, I have difficulty walking due to stiffness, and find it hard to be out of
bed for more than a few hours a day. Sometimes the pain and pressure in my eyes
makes it difficult to drive, read, or even watch T.V. The disease has also had a fi-
nancial impact: I am on naif salary, my long-term disability insurer has not yet
agreed that I am partially disabled, and I incur between five and ten thousand dol-
lars in uncovered annual health expenses.

I am only willing to describe my private, personal medical history on the record
because of my growing frustration at the failure of the CDC and Nffl to acknowl-
edge the serious public health threat of this disease, and because I believe patients
canlcontribute to educating the Senate and the public. Virtually every Lvme disease

Satient with whom I have spoken visited between five and ten doctors before being
iagnosed, and received dismissive and condescending treatment by many of those
doctors. Virtually every patient I have spoken with is still suffering from
dehabilitating symptoms, despite treatment, some after years of treatment. Out of
their difficult experiences, patients have developed a strong voice, through national
patient networks formed to trade information and expertise. In addition, no one but
patients can describe the scope and severity of the symptoms of the disease. I have
spoken with patients who have suffered strokes, paralysis and loss of sight.

I believe the reason that doctors (with the exception of a handful of dedicated
practitioners, such as Dr. Burrascano) have largely been dismissive of patients' is
due to the lack of reliable diagnostic tests, and to the fact that doctors cannot inde-
pendently or objectively confirm patients' dehabilitating but mostly invisible symp-
toms. Faced with uncertainty ana the extremely difficult problems of diagnosis and
treatment of Lyme Disease, many doctors have jumped to premature conclusions.
For example, Dr. Allen Steere has concluded that many patients do not have Lyme
Disease, but his results — in which patients with active Lyme Disease have positive
blood tests, while those who never had Lyme have negative blood tests — are inher-
ently inconsistent with his own acknowledgement that the blood tests are unreli-

Patients are desperate for more support from the CDC and Nffl for research into
diagnosis and treatment, particularly into developing better diagnostic tests for the
disease, discovering how the bacteria spreads through the body, reproduces, under-
goes chemical changes, and cause the numerous and varied symptoms, as well as
into finding both a human vaccine and antibiotics that can have more of an impact
on curing the disease.

More immediately, national organizations should improve the collection of data in
the incidence of the disease, and on the frequency, severity, and progression of the
various symptoms. That data could assist doctors in their difficult task of clinical
diagnosis. In addition, the CDC should establish a more flexible range of criteria
for reporting the diseases that permits reporting of definite, probable, and possible
cases of Lyme Disease. Finally, the CDC, Nffl, and the AMA should work toward
educating more doctors around the country in what is currently known about diag-
nosis ana treatment. I implore the Senate to spur the CDC and Nffl into more ag-
gressive action.

Statement of Ann Ebert, 20 Beacon Drive, Howell, NJ 07731

Mrs. Ebert is afflicted with Lyme Disease and confined to a wheelchair. She has
three afflicted children, two of whom are in remission.

She holds physicians responsible for this tragedy, claiming that their twenty-8
day therapy does not work. The CDC is avoiding the facts, and lives are being lost;
when will something be done, she asks? The establishment is putting its head in
the sand by denying Medicare patients intravenous treatment for Lyme. Mrs. Ebert
demands the government put more money into Lyme research, because, unlike
AIDS, Lyme is not a disease of choice — it can victimize anyone. Early treatment can
be effective in putting the bacteria in remission so their victims can resume their


roles as working members of society. Unfortunately, these people are forced to be
shut up in closets because the government avoids addressing the problem.

Mrs. Ebert demands Medicare extension to intravenous treatment. The problem
must be addressed now, not 10 yean from now.

Ann Ebert represents a group called New Jersey Voice, which proposed State leg-
islation with an ultimate goal of national legislation.


This letter is written on behalf of my husband, Martin Eisenhardt, who died as
a result of Lyme disease on July 3,1993. He bravely fought an 8 year battle with
that disease and all that it did to him.

His symptoms became medically evident March 1986. Hospitalization was nec-
essary due to the severity of his physical symptoms many, many times during those
8 years. The first year of his illness he was hospitalized in March and after spend-
ing time in two more hospitals he was released in mid April of that year and was
diagnosed with nothing more than aseptic meningitis. Continued, serious symptoms
prevailed and worsened as days went by. Weekly trips to a series of doctors were
necessary to treat the variety of symptoms. He was hospitalized twice again in June
and was transferred to Massachusetts General Hospital where for 96 days he suf-
fered from loss of speech and inability to eat or move. He was transferred again to
Albany, NY, all the time a "puzzle to the medical profession. A shell of a once
healthy person was finally sent home without a diagnosis.

Since he was a puzzle to the medical profession, I, his wife was told to put him
in a nursing home and forget him. I chose not to follow the decree of the medical
profession. I wanted him to find freedom at home. Unfortunately, because of his
prognosis, no doctors would even come to our home to treat the severe symptoms
which remained to plague his body.

My quest to find out what had caused this complete dehabilitation and deteriora-
tion of a "perfectly healthy^ man, as he was evaluated by our family doctor in Feb-
ruary of that year, led me on an unbelievable journey.

My husband had the classic symptoms of Lyme disease and although we asked
doctors to look into that possibility, our pleas were ignored or dismissed. Watching
an episode of "20/20" in 1988 led me to having an Elina test for Lyme disease at
Stonybrook, NY. Results were positive even 3 years into the horror.

Medical help came only upon my insistence. He was given fourteen days of treat-
ment of Rocephin by IM not IV. The neurological damage that had occurred prior
to that antibiotic treatment needed much more help than that, but their answer was
no and the death verdict continued. Martin did respond to antibiotic treatment, but
unfortunately, antibiotics were only given for his pneumonia bouts and not for Lyme
treatment. As soon as the various pneumonias cleared the antibiotics were stopped.
The sad cycle would continue.

My husband had been diagnosed with severe Lyme disease based on a variety of
tests done in 1992 — and also upon his autopsy which I insisted was necessary to

{>rove his cause of death. A brilliant, healthy man was wasted by lack of treatment
or Lyme disease. Our lives and family were devastated by this event. The economic
impact on our lives was also devastating.

Living with the horror of Lyme disease ignorance has led me to meet many poor,
suffering people across America. These people need help desperately from a better
informed medical community and proper recognition of this devious, dangerous, and
devastating illness that is very real to all who suffer from its variety of symptoms.
Do not ignore our plea for real treatment and research.

Statement of Karen Fordyce, 16 Bates Rd, Jackson, NJ os627

"My son and I— My son was 9 at the time— got sick in 1987. We hiked together
with our dog for relaxation, through woods that have been shown to be one of the
most infected in New Jersey. Of course, at that time, there was no education. I
knew two things, that there was a bullseye, and that you treat it with antibiotics.
And I believed it."

"I think we must have been infected at that time. Our symptoms were constant
headaches, fatigue, pain. I had put myself through college with two kids, and come
out with a 4.0, an accomplishment I take pride in. My education had gotten me a
job as a systems analyst at a major insurance company. But I started to have trou-
ble doing my job. I started to get tired, have headaches, and have mood swings. I
kept getting bronchitis. So theyd put me on antibiotics for that. Td feel better, but


then it would all come back after I stopped anti-biotics. It got worse and worse. My
son developed swollen lymph nodes. His lymph nodes were huge, he was fatigued,
he was getting thin, he had dark circles under his eyes. He was literally wasting

"We went from doctor to doctor to doctor. I was told I was suffering from allergies
or stress. I was told to seek psychiatric help. They told me that my son looked sick,
but that they weren't able to confirm a diagnosis.

'Tinally, in 1989 I read about Lyme, ana I went to a doctor and asked for a blood
teat. I was positive. I was also lucky. I found a physician who was open to chronic
Lyme and would treat me and my son. We went on orals, and we improved, but
our condition deteriorated when we stopped. Finally, we went on 6 weeks of IV. And
we got much better. Much better. We really improved."

"But my son relapsed this year. Even before the relapse, school was very difficult,
because of short-term memory problems and attention deficiencies. After his relapse,
his grades fell even more and he's been in and out of school all year. He's on orals,
but who knows how long we can keep this up. He's been listed as chronic by the
school system. I don't know what the future is for him."

"I went downhill as well. Over the last 4 years, I have been on I.V. 3 times and
on orals in between. I've been on disability from my job for 3 years. I'm now
dyslexic, I have brain lesions and attention deficits. Fm in constant pain. I often
don't sleep until 4 in the morning. My son can't sleep either and that s one reason
he's having trouble in school. I feel very strongly that there isn't a cure for this dis-
ease once it's in the central nervous system. We're still shedding the DNA of the
spirochete 4 years after treatment started."

"I have another child, a 19 year old in school in Colorado. She is a biology major
and teaches Aerobics. But recently she started complaining about not being able to
remember things, about her feet hurting. We tested her and she's positive. I have
two children with it now, and I don't know what's in store for them. I fear for my
children. We've got to give help to our children."

"We need the CDC to recognize chronic Lyme disease. I know I won't be able to
get coverage for IV if I try, because I fall outside the CDC definition for Lyme dis-
ease. I should be able to get insurance coverage if my doctor says I have Lyme. I
have worked to educate people at the grass-roots level about this disease: We now
need to educate the CDC and the NIH.

"I wish the NIH would talk to patients, to discover that we need funding for
chronic Lyme. Lyme funding mainly goes to short-term research. Our small group
funds Dr. Manifred at Bayer, Fox-Chase cancer center in Philadelphia. We give him
$20,000 a year. Do you know what it takes for a small group like us to raise that
much? And he's done research that the NIH and the CDC can use. I know other
good researchers that the NIH wouldn't fund."

1 would finally like to emphasis that we are not crazy. We are bright, articulate
people stricken with a terrible disease. We deserve to be heard, we deserve to be
recognized, and we deserve action on our behalf."

Statement of Marc Gabriel

1050 Lawrence Avenue, Westfield, NJ 07090-3721

During the summer of 1990, 1 worked at the local office of the Bureau of the Cen-
sus in Mountainside, NJ. The office building was located a few hundred feet from
the Watchung Reserve, an area endemic for Lyme disease. We often are lunch out-

When I returned to Lehigh University in the fall as a sophomore electrical and
computer engineering student, I developed the following symptoms:

migratory Toot and leg pains; temporary bouts of peripheral paralysis; headaches;
extreme fatigue; and inability to concentrate.

After speaking to many people, I was told that my problem was stress. I was re-
ferred to the counseling service.

By the spring of 1991, I became convinced that the problem was not in my head
but rather a medical one. I visited my primary physician at the HD? Rutgers HMO
in New Jersey. He sent me to a specialist for each symptom. After several months
of fruitless investigations, we came to a dead end. No one could figure out what was
wrong, and I was degenerating rapidly, the migratory pains had turned into arthri-
tis and the fatigue and headaches became much more serious.

In the late summer of 1991, an orthopedist friend of the family invited me in for
a consultation. After 3 visits, he recommended that I have a Lyme titer performed.
He mentioned that he had seen many bizarre" cases of joint pain recently in West-
field, and they turned out to be Lyme disease.


HIP Rutgers performed an ELISA that was borderline, and then a second that
was negative (on the Robert Wood Johnson scale). I read-up about Lyme disease and
learned that a negative test does not rule out the disease, but my doctor did. He
told me "Lyme disease is overdiagnosed" and sent me home.

We spent the next 9 months arguing back and forth. I met some of the most mis-
informed doctors in my life during this experience, they were spitting out garbage
that I contradicted with medical references. They just didn't care.

In the spring of 1992, my condition worsened and I had to drop most of my
courses. After a dramatic encounter with a clueless HEP Rutgers infectious disease
specialist, we went to the SUNY Stony Brook Lyme Disease Clinic, where Drs. Ben-
jamin Luft and Raymond Dattwyler diagnosed me with Lyme disease.

They prescribed 3 weeks of IV Rocephin via HIP rutgers. My condition improved,
but I relapsed after the treatment ended. I then demanded additional treatment.
After the initial resistance, they conceded (probably because they were afraid I
would slap them with a malpractice suit). I relapsed again after the additional 3
weeks. I left the HMO and sought the help of a Lyme specialist.

While my neurological symptoms are fully under control with the help of the spe-
cialist, I have sharp joint pain. To control this, I use:

Oral antibiotics; Non Steroidical Anti-Inflammatory Drugs (NSAIDs); Hot water
therapy every morning; A TENs unit; and Frequent rest.

I am 21 year old, and I may have chronic arthritic pain for the rest of my life
because I had stubborn doctors who didn't have a clue what they were doing. All
they knew was "Lyme disease is overdiagnosed." They sounded like parrots.

I wish I could say that my case is rare. Unfortunately, it is not. The INSTITU-
TIONAL DENIAL IS ENTRENCHED. Doctors refuse to believe Lyme disease is a
problem UNTIL A LOVED ONE IS HIT BY IT. Them, they believe.


Lyme disease has attacked Barbara's family with a vengeance. Not only does she
have the debilitating disease, but her two daughters also have been stricken with
Lyme. Her older daughter, a good student, was forced to give up a medical career,
daunted by the physical and mental strain of medical school. Debilitating fatigue
caused Barbara to give up her antique interior decorating business to handle fewer
clients from her home. Unable to concentrate and focus her thoughts, she eventually
had to abandon her work altogether. Once an accomplished cook, Lyme has left her
unable to follow a recipe.

Barbara underwent psycho-neuro testing at a Yale clinic where she was diagnosed
with "deficits consistent with Lyme disease." Testers stated that active infection
could not be ruled out and recommended trail antibody treatment although Barbara
would not be diagnosed with Lyme if tested by the standards that Dr. Steere advo-

Barbara received IV treatments for her illness. The first treatment had little ef-
fect. She responded well to the second treatment. However, she later relapsed and
serious cognitive problems returned. The third treatment was successful, and Bar-
bara recovered partially. While she still is unable to concentrate for an extended pe-
riod of time, her cognitive problems are less severe than previously. Speaking with
Barbara, one notices that she lapses between phases of extreme coherence ana intel-
ligence, utilizing a broad vocabulary and demonstrating her high intelligence, and
phases of inattentiveness and inability to concentrate.

Barbara advocates:

that chronic persistent infection be addressed and researched by NIH; and the es-
tablishment of a children's facility to research the treatment of adolescents and
young adults infected with the Lyme virus.

Barbara feels that the disease has been largely dismissed by academia (private
university researchers) and this is a chief reason that Lyme disease has not been
properly studied.

Statement of Judi Hason

34 glldare drive, east nohthport, ny 11731

Judi Hason is on the Board of Directors of the Long Island Arthritis Foundation
and is also the Chairperson of Education of the Lyme Disease Coalition of New York

Her statement is as follows:

The Lyme Disease Coalition represents 25 support groups in New York State. We
have thousands of people belonging to our coalition that are sick with Lyme Disease


and are not getting better. If Lyme Disease is a an easily curable disease, why do
we need 25 support groups in New York State?

We only represent one State in this country. There are hundreds of support
groups in all across the country. We need money for research to help all those suf-
fering from this disease."

Ms. Hason has been sick with Lyme Disease for 4 years. She has been treated
twice with intravenous antibiotics, and still is not 100 percent well. She suffers from
severe arthritis and was forced to close her business and end her career as a free-
lance jewelry designer.

Accompanying Ms. Hason was Ms. Karen Gustafson, a co-facilitator of the Long
Island Arthritis Foundation and a strong supporter of the New York State Lyme
Disease Coalition. Ms. Gustafson has tested both positive and negative for Lyme
Disease and has suffered from arthritis and vertigo in the past few years which she
attributes to the disease.

Statement of Ray Hernandes

ioi West Main Street, Clinton, NY 08809

Mr. Hernandez believes that a grassroots education is the most important element
in combating Lyme disease. Specifically, a thorough education that begins in Kin-
dergarten is needed to make children aware of the symptoms of Lyme disease and
the means to prevent it.

Mr. Hernandez believes that doctors are also misinformed about the disease. He
believes that:

Doctors are not familiar with the symptoms; Doctors are not familiar with effec-
tive treatment programs; and as a result doctors tend to mistreat Lyme diseases as

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Online LibraryUnited States. Congress. Senate. Committee on LaboLyme disease : a diagnostic and treatment dilemma : hearing before the Committee on Labor and Human Resources, United States Senate, One Hundred Third Congress, first session, on examining the adequacy of current diagnostic measures and research activities in the prevention and treatment of lyme dis → online text (page 2 of 16)