Finds a Career--

[Guest guest]

Finds a Career--

How Lyme disease patients became another population

of victims of the Viet Nam War.

BOSTON -- Looking out of the mist-covered window of his

fourth floor office at Tufts-New England Medical

Center here, Dr. C. Steere inspected the urban

sky on a warm spring day not long ago. " More ticks, "

he warned gravely.

" If you have a mild winter and a warm, wet spring,

those are good tick conditions. "

More ticks means more Lyme disease, which Dr. Steere

has been studying for 24 years, longer than anyone

else. In fact, he was the first to identify the brand

new ailment among a baffling cluster of children with

swollen knees in Lyme, Conn. And, over the protests

of civic leaders, he gave it its name.

But more recently he has enraged many patients and

their doctors with his contention that Lyme disease

has become a junk-drawer diagnosis, covering

maladies ranging from fibromyalgia to hypochondria.

Many people receiving antibiotic treatment, he

argued, are being done more harm than good.

Rick Friedman for The New York Times (photo of Big AL)

Celebrity and controversy have followed Dr. C.

Steere of the Tufts School of Medicine in Boston from

the time he gave Lyme disease its name to his recent

work on a Lyme vaccine.

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" I suppose Lyme disease is one of the few diseases

that some people want to have, because it's defined, "

Dr. Steere said. " I think it's very difficult to

have something that is not well understood. "

Still, in the realm of Lyme disease, few are as

influential as Dr. Steere.

As chief of the rheumatology and immunology department

at Tufts School of Medicine, Dr. Steere led the research

effort on Lymerix, the preventive Lyme vaccine, which

first hit the market in January. The research took four

years, covered 10 states and involved 11,000 patients

and 31 scientists.

The vaccine proved 78 percent effective. But its impact

is not likely to be felt during this summer's tick

onslaught. For fullest protection, the drug is taken in

three shots administered over the course of a year,

according to the manufacturer, Kline Beecham.

Nonetheless, some uncertainty remains about the

vaccine's ultimate safety, especially for people

with certain conditions.

When the National Vaccine Advisory Committee of the

Food and Drug Administration certified the drug in

December for people 16 to 70 years old, members

appended a list of concerns about the long-term

effect of the vaccine, especially among those with

chronic arthritis or heart conditions.

" It's rare that a vaccine is voted on with such

ambivalence and such a stack of provisos, " Dr.

L. Ferrieri, the committee chairwoman and a

professor at the University of Minnesota Medical School,

said at the time of the vote.

Given the Lyme problem nationally, the F.D.A.

released the vaccine on public health grounds,

recommending that it be considered by people at the

highest risk for the disease.

Even Dr. Steere has his doubts about the safety of

the vaccine, which he has not taken himself, he said,

because Lyme is not a serious problem in the Boston

area.

Since 1982, 128,327 cases of Lyme disease have been

reported to the Centers for Disease Control and

Prevention, but the number may be much higher. Dr.

Dennis, who coordinates the agency's Lyme program,

says he believes that only a third of the cases are reported.

.

In 1972, his final year of medical school at Columbia

College of Physicians and Surgeons, Steere learned

epidemiology, as a dodge, after hearing from an Army recruiter

that some 90 percent of new doctors would be drafted and

shipped out to Southeast Asia, unless they found alternative

service. Dr. Steere discovered the Epidemic Intelligence

Service, the C.D.C. division that investigates outbreaks

of new diseases, like AIDS and Legionnaires' disease.

From 1973 to 1975, he practiced the science of epidemiology across

America.

Afterward, he headed for Connecticut to begin a fellowship

at Yale in his passion, rheumatology. " I hoped that my

C.D.C. experiences were something I could apply to the study

of arthritis, " he said.

His opportunity came four months later with a call from

Connecticut's chief epidemiologist, who asked Dr. Steere

to visit a concerned woman in Lyme, a tiny, wooded hamlet

at the mouth of the Connecticut River. The woman,

Polly Murray, was reporting an unusual cluster of a

rare disease, juvenile rheumatoid arthritis, in her town.

Victims included two of her four children, whose knees

were so swollen that they could not walk without crutches.

Dr. Steere's interest was piqued. " If there was one child

in a town the size of Lyme, " he said, " that's about what

you might expect. "

Mrs. Murray handed Dr. Steere a list of dozens of ailing

children. He began by calling each family and eventually

compiled a list of 39 children. Then came the time-consuming

effort to learn what they had in common.

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First fame, and then blame, in the world of the black-legged tick.

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Some residents blamed a new nuclear power plant upriver;

some suspected the drinking water or the local swimming

pool or something they had all eaten;

others feared the disease was communicable.

That all had to be ruled out, one supposition at a time.

Dr. Steere soon developed an insect theory, based upon

the observation that symptoms seemed to begin in the

summer or fall. But only a quarter of the children remembered

being bitten, and each described the bite differently.

Nobody saw an insect.

Two years would pass before Dr. Steere and his colleagues

put in place the last piece of the puzzle, and it came to

them by coincidence, when an ecologist walked into Dr. Steere's

office with a vial containing a tick he said had bitten him.

" It was about this size, " said Dr. Steere, seizing a pen

and drawing the dimmest mark on a piece of paper. It turned

out to be a nymphal Ixodes scapularis tick, a nearly invisible

black-legged newcomer to the region carried on the backs of deer

and field mice.

Local insect census takers were tracking the tick's march

across Connecticut.

Laying their surveillance maps over Dr. Steere's maps for

juvenile rheumatoid arthritis produced an exact geographical match.

.

For this breakthrough work, Dr. Steere has been widely

heralded. At a ceremony in Hartford last year, Gov. G.

Rowland proclaimed Sept. 24 as C. Steere Day.

But the adulation became short-lived. In the early 90's,

Dr. Steere he began to hypothesize that many people

complaining of Lyme disease symptoms did not, in

fact, have the disease.

Writing in The Journal of the American Medical Association

in 1993, Dr. Steere said the disease was overdiagnosed and

overtreated -- a statement that utterly balkanized groups of

sufferers, scientists and clinicians into squabbling factions.

In one group is the American Lyme Disease Foundation, mostly

representing researchers, including Dr. Steere; in the other

is the Lyme Disease Foundation, mostly representing clinicians

and patients.

Their chief discord is over the possibility that Lyme

disease, in some patients, develops into a chronic disease

requiring massive doses of antibiotics over long periods of

time, as some doctors believe.

Dr. Steere thinks not. Instead, he argues that persisting ]

symptoms may be owing to something he calls " post-Lyme

syndrome, " undefined neurological damage and immune-system

malfunctions resulting from the initial infections.

A year-old National Institutes of Health study to try to

resolve the dispute is continuing. Meanwhile, as a result

of Dr. Steere's influence, insurance companies have sometimes

refused to pay for continuing treatments for Lyme.

This, in turn, has provoked patients to heckle and even picket Dr.

Steere.

The Lyme Disease Foundation has condemned him as dismissive of

patients' complaints. So has Polly Murray.

" I am dismayed about Dr. Steere's position, " said Ms.

Murray, who wrote of her struggle with the disease in

" The Widening Circle " (St. 's Press, 1996).

" He feels that it's overdiagnosed and overtreated,

but I see people in the area who are having a real struggle

with getting over Lyme disease. And some of them

have responded to longer-term treatment. "

To patients with Lyme disease perhaps Dr. Steere's

most audacious gesture came in 1994 when he testified at

a board of medicine hearing against Dr. ph Natole of

Saginaw, Mich., who was treating patients for chronic Lyme

disease.

Because Dr. Natole had so many people on intravenous

antibiotics, authorities charged him with medical

malpractice and insurance fraud. Dr. Natole was ultimately

stripped of his medical license for six months.

Pointedly, Dr. Steere expressed no regret for his role in

the case. In his experience, he said, these persistent

health complaints " are not best handled in the long run

with chronic antibiotic therapy. "

" And for that opinion, " he added, " I have been pilloried

by certain groups. But it's still my opinion. "

=====

Dodge has a great deal of information here.

Mr Dodge is a Yale alumnus

http://www.lymetruth.org/

Especially look at Issue 22

==========

The Yale Rheumatology Dept website used to

only have a link to EUCALB for information on

treatment of Lyme disease. Since I posted it

to the newsgroup, it has been taken off. Can't even find

it in my outbox.

========

This email was sent within a large company in CT.

" Sent: Friday, July 02, 1999 2:59 PM

......ton 30 Day

Notices

Subject: CDC Lyme Disease Study

[steere is suddenly interested in the virulence (variability

in the primary Outer Surface Proteins for their commercial

value) and looking for strains in southeastern CT to sample.

This occurred soon after a conversation I had with a tech

person at Imugen as I was complaing that we patients get always

neg resuls for Lyme in SeCT. Imugen uses a German strain and

a strain from Guilford CT instead of the three CDC-

recommended strains for antigen source for Western

Blotting:]

" This summer, Dr. Vijay Sikand and Dr. Steere will be

working on a CDC and NIH supported Lyme Disease study for

which they are seeking patient volunteers.

This study has been approved by Tufts/New England Medical

Center's Institutional Review Board.

They are primarily interested in patients with physician

diagnosed erythema migrans, in whom they will be studying

pathogenesis of disease, histopathology, molecular and

genetic diversity of Borrelia burgdorferi isolates,

cell-mediated immune factors, and serology, in the setting

of clinical presentation. These patients will have skin

biopsy of the lesion (small enough to be dressed with a

bandaid, no sutures) as well as bloodwork on the day of

presentation. Lyme disease treatment will be initiated at

that time. Only one follow-up visit is required for

convalescent bloodwork, 2 to 4 weeks later. The grant

provides for a $100 payment to these volunteers.

Since specimens must be sent by overnight courier to

Boston, patients must be seen no later than about 3:00

p.m. Monday-Friday. Dr. Sikand's office is located

next door to Pharmacy at Flanders Four Corners

in East Lyme. "

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Treatment of Lyme disease.

Steere AC, Green J, Hutchinson GJ, Rahn DW, Pachner AR,

Schoen RT, Sigal LH, E, Malawista SE

Zentralbl Bakteriol Mikrobiol Hyg [A] 1987 Feb 263:3 352-6

Abstract

We compared phenoxymethyl penicillin, erythromycin, and

tetracycline, in each instance 250 mg four times a day

for 10 days, for the treatment of early Lyme disease

(stage 1). None of 39 patients given tetracycline developed

major late complications compared with 3 of 40 penicillin-

treated patients and 4 of 29 given erythromycin (p = 0.07).

However, with all three antibiotic agents, nearly half of

patients had minor late symptoms. For neurologic

abnormalities (stage 2), 12 patients were treated with

high-dose intravenous penicillin, 20 million U a day

for 10 days. Pain usually subsided during therapy, but a

mean of 7 to 8 weeks was required for complete recovery

of motor deficits. For the treatment of established

arthritis (stage 3), 20 patients were assigned treatment

with intramuscular benzathine penicillin (7.2 million U)

and 20 patients received saline. Seven of the 20 penicillin-

treated patients (35%) were apparently cured, but all 20

patients given placebo continued to have attacks of arthritis

(P less than 0.02). Of 20 arthritis patients treated

with intravenous penicillin G, 20 million U a day for

10 days, 11 (55%) were apparently cured. Thus, all 3

stages of Lyme disease can be treated with antibiotic

therapy, but some patients with late disease may not respond.

Clinical manifestations of Lyme disease.

Steere AC, Bartenhagen NH, Craft JE, Hutchinson GJ, Newman JH,

Pachner AR, Rahn DW, Sigal LH, E, Malawista SE

Zentralbl Bakteriol Mikrobiol Hyg [A] 1986 Dec 263:1-2 201-5

Abstract

Lyme disease typically begins with a unique skin lesion,

erythema chronicum migrans (ECM) (stage 1). Patients with

this lesion may also have headache, meningeal irritation,

mild encephalopathy, multiple annular secondary lesions,

malar or urticarial rash, generalized lymphadenopathy

and splenomegaly, migratory musculoskeletal pain, hepatitis,

sore throat, non-productive cough, conjunctivitis,

periorbital edema, or testicular swelling. After a few

weeks to months (stage 2), about 15% of patients develop

frank neurologic abnormalities, including meningitis,

encephalitis, cranial neuritis (including bilateral

facial palsy), motor or sensory radiculoneuritis,

mononeuritis multiplex, or myelitis. At this time,

about 8% of patients develop cardiac involvement--AV

block, acute myopericarditis, cardiomegaly, or

pancarditis. Throughout this stage, many patients

continue to experience migratory musculoskeletal pain

in joints, tendons, bursae, muscle, or bone. Months to

years after disease onset (stage 3), about 60% of patients

develop frank arthritis, which may be intermittent or

chronic. Recently evidence suggests that Lyme disease

may also be associated with chronic neurologic or

skin involvement. Thus, Lyme disease occurs in stages

with different clinical manifestations at each stage,

but the course of the illness in each patient is highly variable.

Treatment of the early manifestations of Lyme disease.

Steere AC, Hutchinson GJ, Rahn DW, Sigal LH, Craft JE,

DeSanna ET, Malawista SE

Ann Intern Med 1983 Jul 99:1 22-6

Abstract

During 1980 and 1981, we compared antibiotic regimens in 108

adult patients with early Lyme disease. Erythema chronicum

migrans and its associated symptoms resolved faster in penicillin-

or tetracycline-treated patients than in those given erythromycin

(mean duration, 5.4 and 5.7 versus 9.2 days, F = 3.38, p less than

0.05). None of 39 patients given tetracycline developed major late

complications (meningoencephalitis, myocarditis, or recurrent

attacks of arthritis) compared with 3 of 40 penicillin-treated

patients and 4 of 29 given erythromycin (chi square with 2

degrees of freedom = 5.33, p = 0.07). In 1982, all 49 adult

patients were given tetracycline; again, none of them developed

major complications. However, with all three antibiotic agents

***nearly half*** of the patients had minor late symptoms such as

headache, musculoskeletal pain, and lethargy. These complications

correlated significantly with the initial severity of illness.

For patients with early Lyme disease, tetracycline appears to

be the most effective drug, then penicillin, and finally erythromycin.