Re: Lyme Disease Divide - CT and Dr. ' hearing date apology

[Guest guest]

My apologies for posting that the Septebmer 28th trial would be the

last date for Dr. ' case. I have just learned that there will

be more. I got the September 28th date as the last date from the

post below...

from below:

's hearing began March 23; the last scheduled session is Sept.

28. When the hearing is completed, the full 15-member state medical

board will decide whether to accept, reject or modify the panel's

recommendation, and decide whether, after four decades of practicing

medicine, 's license should be revoked or other disciplinary

action taken. Because it is an administrative hearing based on

findings of fact, 's grounds for appeal are limited.

First or last, I am urginganyone who can attend to attend to support

the GREAT Dr. .

Thanks and be well,

>

> [RLL] Lyme Disease Divide - CT

>

>

> http://www.courant.com/news/local/northeast/hc-

lymedoc3.artsep17,0,3729082.story?coll=hc-northeast-top

>

> Lyme Disease Divide

>

> A Schism Over Treatment Philosophies Puts A Connecticut

Pediatrician's

> License On The Line

>

> By Santaniello

>

> September 17 2006

>

> The current epicenter of what some call " the Lyme wars " is a

warren of small

> rooms on the nondescript ground floor of Madison Towers, a 17-story

> apartment building on Park Street in downtown New Haven.

>

> This is where Dr. Ray , whom some consider the

world's foremost

> pediatric Lyme disease specialist, practices medicine. A few

blocks away is

> Yale University School of Medicine, where Lyme disease was first

researched,

> and where its earliest treatment protocols were developed in the

years after

> the disease was identified in 1975. It is also where the current

orthodoxy

> stands in fierce opposition to 's approach to treating the

disease.

>

> Sitting at a desk in one of his small examining rooms,

doesn't appear

> to be a man engulfed by controversy and facing the possible loss

of his

> license to practice medicine. He is a large man who wears thick

glasses and

> speaks quietly, deliberately, almost inaudibly.

>

> " I'm not a renegade, " he said. " I don't look for trouble. It finds

me. "

>

> Dr. Eugene Shapiro, a professor of pediatrics and epidemiology at

the

> medical school, helped write the guidelines to treat Lyme disease

that have

> been endorsed by the U.S. Centers for Disease Control. Shapiro

said he has

> received many calls from physicians in Connecticut " begging me to

see their

> patients so they don't have to see Dr. . It is not an

uncommon call. "

>

> Transmitted to humans by the painless bite of the tiny black-

legged deer

> tick, Lyme disease presents doctors with a host of challenges.

Once the

> corkscrew-shaped bacterium, called a spirochete, enters the

bloodstream, it

> can cause a wide range of constitutional, musculoskeletal and

neurological

> symptoms. Its ability to change forms often makes it difficult to

detect and

> destroy, and the longer the symptoms go untreated, the more

intractable they

> become.

>

> The strong belief in the U.S. medical establishment, represented

by the

> 8,000-member Infectious Diseases Society of America, is that the

use of

> antibiotics on a long-term basis to treat the Lyme bacterium is

not only

> ineffective, but can be harmful to patients. But a group of about

300

> doctors, academics and other health-care professionals adamantly

believes

> that the establishment is in denial, not only over the

effectiveness of a

> long-term course of antibiotics, but over the very existence of

chronic Lyme

> disease. Thus, in effect, there are two standards of care for Lyme

disease,

> and the onus is on the patient to be aware of it.

>

> Shapiro and establishment doctors like him say too often

diagnoses

> Lyme disease where it doesn't exist, by their definition of the

disease. As

> a result, they say, his use of antibiotics is too aggressive and

much too

> prolonged. In fact, some of 's patients have been taking the

drugs for

> years. Doctors in the medical establishment generally believe that

most

> patients who acquire Lyme can be cured with a single course of

antibiotics

> lasting from 14 to 28 days.

>

> The other camp, led by what its advocates call " Lyme literate "

doctors,

> believes Lyme is more multifaceted than the mainstream community

insists

> and, particularly in its late stages, requires more aggressive

antibiotic

> regimens, at least until all symptoms are resolved.

>

> " It's a polarized situation, a total war going on, " said Diane

Blanchard of

> Greenwich, whose children have been treated by . " And the

fallout, once

> again, is borne by the patients. " Blanchard is co-president of

Time for

> Lyme, a Greenwich-based advocacy group that promotes wider

education and

> research for tick-borne illnesses.

>

> The disease, named after the town on the Connecticut shore where

it was

> first identified, and now found in all but a handful of states, is

pitting

> doctor against doctor. " I've never observed any disease that has

caused so

> much controversy in the medical community, " said Dr.

of

> Wilton, whose practice consists entirely of Lyme patients. " It's a

hotly

> contested area of medicine. "

>

> Dr. Ray is 77 years old. He graduated from New York

Medical

> College in 1962, interned in pediatrics at St. Luke's Hospital in

Manhattan

> and went on to become chief resident at Memorial Sloan-Kettering

Cancer

> Center.

>

> The demands of doing research while managing a busy private

practice

> motivated to leave New York City in 1968 for a pediatrics

practice in

> Hamden. By the middle of the next decade he says he began

encountering a new

> form of juvenile arthritis, which shortly came to be identified as

Lyme

> disease. Since then, has treated more than 10,000 children

for Lyme

> from virtually every state, and from around the world.

>

> said that the children who end up as his patients are often

children

> with persisting and more serious symptoms of Lyme. In fact, he

said, 80

> percent of his cases are children with a chronic form of the

disease. They

> come to him in every conceivable condition, he said, including

those who are

> blind as a result of Lyme, or paralyzed, or wracked with pain.

>

> said that of all the children he has treated, " about 75

percent are

> [now] well, and without symptoms. "

>

> At the end of the hallway in his office is 's " chart room, " a

> windowless box in which four metal file cases, each 6 feet tall

and filled

> on both sides with bulging manila folders, occupy almost all the

available

> space. These are the files of his roughly 3,000 active patients,

containing

> the records of each office visit, the results of every test, and

the

> complete chronicle of their afflictions.

>

> It's the content of two of those files, however, that has placed

is in

> the middle of a state Medical Examining Board hearing in Hartford

that will

> determine whether he will be allowed to continue treating patients.

>

> In late 2005, the state Department of Public Health charged

with

> violating " the applicable standard of care " for his treatment of

two young

> siblings who live in Nevada. The complaint was initiated by the

children's

> father, who is involved in a custody dispute with their mother, an

emergency

> room nurse. After investigating the complaint, the health

department brought

> charges to the medical board, alleging that diagnosed Lyme

disease in

> the children without examining them, that he failed to consider

other causes

> for their symptoms, and that he improperly prescribed antibiotics.

>

> At his fourth hearing date on Sept. 7, denied all of the

charges.

> Because of the volume of Lyme patients he has seen in more than

three

> decades, he told the three doctors from the Medical Examining

Board who are

> hearing his case, " I am entitled to rely on my clinical experience

in

> addressing the needs of a severely sick patient population. "

>

> 's hearing began March 23; the last scheduled session is

Sept. 28. When

> the hearing is completed, the full 15-member state medical board

will decide

> whether to accept, reject or modify the panel's recommendation,

and decide

> whether, after four decades of practicing medicine, 's

license should

> be revoked or other disciplinary action taken. Because it is an

> administrative hearing based on findings of fact, 's grounds

for appeal

> are limited.

>

> The prospect of losing 's services terrifies his patients and

> supporters, some of whom have traveled from as far as Florida

simply to

> support him at the hearings.

>

> " You have to understand how important and beloved is to the

Lyme

> community, " said Sheila Lederman, who came from Parkland, Fla.,

west of Boca

> Raton, with her daughter, , to attend a hearing in June.

, now

> 18, was first treated by six years ago. " He's saved a lot of

> children, " Lederman said. " That's why people call him a saint.

I'll do

> everything I can for this man. "

>

> Virginia Anez, who lives in Boynton Beach, Fla., attended the same

hearing

> with her 10-year-old daughter, Ann, also a patient of .

>

> " Of course I'll help him, " she said. " There are things in life you

do no

> matter what, and Dr. is one of those things. "

>

> Debbie Siciliano of Greenwich, the other co-president of Time for

Lyme, said

> she has been a staunch supporter since successfully treated

her son

> for Lyme nearly a decade ago. She called his prosecution " a witch-

hunt

> against Lyme-literate doctors " and " a crime. They're taking away

these kids'

> only hope. "

>

> The case is also being watched by state Attorney General

Blumenthal,

> who has been closely involved with issues involving the reporting,

diagnosis

> and treatment of Lyme.

>

> " I'm very concerned there may be a perception, rightly or wrongly,

that care

> for Lyme disease is discouraged " by the charges against ,

Blumenthal

> said. " A lot of people are watching, and it may have broader

implications. "

> The case, Blumenthal added, " certainly has acquired a larger

dimension than

> a single individual. "

>

> In part, that's because the proceedings against appear to be

part of a

> pattern against doctors who take an aggressive approach to

treating Lyme,

> said Pat , the president of the Lyme Disease Association, a

national

> nonprofit organization, based in , N.J. said that

more than 30

> Lyme doctors in 10 states have been brought before state medical

boards

> since the early 1990s. Most recently, in June, Dr. ph Jemsek,

an

> infectious disease specialist in North Carolina, was found guilty

of

> inappropriately diagnosing and treating Lyme. His license was

suspended for

> a year, but the suspension was stayed, and restrictions were

placed on his

> practice.

>

> Even more troubling than the charges against , said ,

is " the

> terrible climate that has been deliberately created by vested

interests and

> others in this country to keep Lyme physicians from wanting to

treat

> patients. If we had a wealth of treating physicians, we wouldn't

be seeing

> these situations happen. That, to me, is the real story. "

>

> The case may be particularly fraught because he is a

pediatrician.

> Children could be considered Lyme's most vulnerable victims since

playing

> outside in suburban yards puts them for extended periods in

habitats favored

> by deer ticks.

>

> " I don't know what's going to happen to these children if he can't

practice

> anymore, " said a Capasso, a Guilford resident whose 17-year-old

> daughter, andra, has been a patient of 's since 2000. " It

scares

> me, because we're in deep trouble if this goes bad. "

>

> Despite Connecticut's dubious claim to fame as the home of Lyme

disease, the

> state health department, citing budget restraints, eliminated the

mandatory

> reporting of Lyme by laboratories in 2003, although doctors are

still

> charged with reporting them. In 2002, Connecticut ranked second in

the

> nation, with 4,631 cases of Lyme disease reported. In 2003, after

labs

> stopped having to inform the state about Lyme cases, the number of

reported

> cases fell 70 percent, to 1,403.

>

> But it's clear that the incidence of Lyme in Connecticut is rising.

> Thirty-four percent more cases were reported in 2005 than in 2004,

with the

> largest increases in New London, Middlesex and New Haven counties.

Although

> Connecticut overwhelmingly has had the highest rate per capita in

the

> country since 1992, the state now ranks seventh nationally in the

number of

> reported cases. It's impossible to know what the state's rank

would be if

> required reporting by laboratories were re-instituted. This doubt

is

> mirrored nationally, as well. Across the country, 21,304 cases

were reported

> to the CDC in 2005, an 82 percent jump in 10 years. But the CDC

admits its

> strict reporting criteria captures just 10 percent of actual Lyme

cases.

>

> Meanwhile, Connecticut appears to be holding its own in its role

as Lyme

> disease central.

>

> " It's epidemic around us this year, " said Dr. Cummings Satti,

an

> internist in Old Lyme. " It's just everywhere right now. "

>

> And the state's attorney general keeps pushing state officials to

beef up

> its reporting requirements. At this point, although doctors are

supposed to

> inform the health department about cases of Lyme, a strict mandate

for

> laboratories to do so is recognized as being critical to gauge the

true

> incidence of the disease. At a public hearing on Lyme in January

2004,

> Blumenthal urged the Public Health commissioner, Dr. J.

Galvin, to

> establish a better reporting requirement. Although Galvin said one

would be

> in place by 2005, more than halfway through 2006, the old system

remains. In

> a July 25 letter to Galvin, Blumenthal called the under-reporting

of Lyme

> " particularly harmful for the public health. " It neutralizes

preventive

> efforts and makes those with symptoms less likely to seek care if

it isn't

> being reported in great numbers, he said.

>

> What most concerns Blanchard, the co-president of Time for Lyme,

is that

> Connecticut's Lyme numbers represent " the tip of the iceberg, " and

affect

> the funding Connecticut receives from the CDC for state health

programs.

> " It's been left in the hands of grassroots organizations to

support the

> citizens of this state, " she complained. " Why is that? "

>

> The simple answer is because of the bitter battle over the

standard of care,

> a battle that exists because there is no direct test to identify

the Lyme

> bacterium. Without one, there's no way to determine if the

infection has

> been eradicated, so the diagnosis of Lyme remains a clinical one.

>

> On one side of this fight is the Infectious Diseases Society of

America, or

> IDSA. This large organization of physicians, scientists and other

> health-care professionals with specialty training in infectious

diseases has

> established guidelines for diagnosing and treating Lyme. Adopted

by the CDC,

> these guidelines have become the de facto national standard. The

society

> believes Lyme causes largely objective symptoms that can be cured

with a

> limited course of antibiotics, typically not more than 21 days.

>

> On the other side is the International Lyme and Associated

Diseases Society,

> or ILADS, founded in 1999 by physicians and academics who believe

mainstream

> medicine is too conservative in its treatment of Lyme. A much

smaller group

> of practitioners, they are more proactive in advancing the

standard of care

> based on what they say is new research and on new clinical

findings its

> members uncover. They say Lyme should be treated with antibiotics

until all

> symptoms are resolved, and usually at least two months beyond that

to be

> sure the infection is eradicated.

>

> Other than agreeing that Lyme can be successfully treated if

caught early,

> the two camps agree on little else: testing protocols, the use of

> antibiotics, acceptable research, even whether there is such a

thing as

> chronic Lyme disease (one side says it's merely persisting

symptoms, the

> other a persisting infection).

>

> " It's like two people speaking different languages and trying to

> communicate, " said Dr. Liegner of Armonk, N.Y., a leading

physician

> associated with ILADS, the smaller, more Lyme-focused group. " It's

very

> nasty, very destructive. "

>

> According to Dr. Henry M. Feder Jr., who specializes in pediatric

infectious

> diseases at Connecticut Children's Medical Center in

Hartford, " the great,

> great majority of Lyme patients fit a very straightforward kind of

pattern. "

>

> Or, as Shapiro, from Yale, put it, " Lyme disease in Connecticut is

not all

> that hard to diagnose. The bottom line is, Lyme disease causes

objective

> findings. If a patient has only non-specific symptoms, it's

unlikely due to

> Lyme. "

>

> As for what Shapiro defined as objective evidence marking this

pattern - a

> rash, often, but not always, in the form of a bull's-eye; swollen

joints,

> facial paralysis and meningitis - said, " Unfortunately, 99

percent of

> the people I see don't fit into those categories. If one uses [the

> infectious diseases society] guidelines, then very few people are

going to

> have Lyme. "

>

> The controversy over the use of antibiotics boils down to diametric

> differences on costs and benefits. Shapiro said he believes

extended courses

> of antibiotics, beyond being expensive, can cause gallstones, heart

> infections and create treatment-resistant " superbugs. "

>

> " If there was evidence that long-term antibiotics made patients

better, " he

> said, " I'd jump right on the bandwagon. "

>

> But for , the benefits outweigh the risks, and not just in a

child's

> quality of life. Taking into account the cascading effects of

untreated or

> under-treated Lyme, which can lead to neurological and cognitive

damage,

> said that by treating until symptoms resolve, " you're

enabling a child

> to be well and fulfill their genetic potential, in terms of going

to school,

> being part of the workforce, and contributing to society's well-

being. "

>

> Dr. of Wilton, a past president of ILADS, characterizes

himself as

> relatively conservative in his use of long-term antibiotics. He

said it was

> " a huge judgment " when to prescribe antibiotics. " But with sicker

patients,

> it shouldn't be controversial at all. "

>

> Satti, the Old Lyme physician who described herself as a

traditionalist who

> treats her patients " with a little bit of flexibility, "

nevertheless has

> concerns about long-term antibiotics. She said she asks

herself, " 'OK, if I

> go down this path, could I do more harm than good?' These

treatments are not

> benign. And until we understand it better, I'm not willing to take

that

> risk. "

>

> Meanwhile, all these conflicts involving Lyme feed the frustration

of

> parents who say they've gone in vain from doctor to doctor and

been told

> their child doesn't have Lyme, and who say they've been forced

into becoming

> self-taught experts on the disease. Guilford resident Capasso said

she

> attends medical conferences on Lyme " because I really don't trust

doctors

> anymore. " She paused. " I trust Dr. . "

>

> Feder, of Connecticut Children's Hospital, said not having an

answer for

> patients with persisting symptoms beyond the standard course of

antibiotics,

> whatever their cause, " is where traditional medicine lets these

patients

> down. " Yet whatever remains wrong with these patients, Lyme isn't

always the

> case, he said. " The bias of ILADS is to make everything fit Lyme

disease. "

>

> Why the apparent intransigence to new ideas? attributed it

to a number

> of reasons, among them an " old-boy network " of doctors who talk

only to each

> other, don't brook any criticism and " don't go outside of their

box. " He

> also believes that many establishment physicians are compromised by

> conflicts of interests because of their involvement with insurance

and

> pharmaceutical companies, through consulting contracts, research,

and patent

> applications.

>

> Before he turned to medicine, briefly attended Boston

University's

> Divinity School, where he met Luther King Jr. He said he

learned from

> King " to be willing to take a stand, regardless of the way others

feel, as

> long as you were doing what was right. "

>

> And that's how he feels about the repeated challenges to his

methods by

> mainstream doctors. " I know I'm right, " he said. " If Dr. Shapiro

practices

> for another 20 years, he would not see as many patients as I see

in a year. "

>

> Voices of moderation in this debate are hard to find. " There are

really very

> few practitioners that are in the middle, " explained Satti.

>

> " To the layperson, " she continued, " I could see how you'd

say, 'What the

> heck is wrong with the medical community?' But it's not that cut

and dried.

> It's a new disease, and we just don't understand it yet. "

>

> There is no acquired immunity with Lyme disease, and the unique

response of

> each person's immune system is another huge variable. In addition,

new

> strains of Lyme are being discovered regularly - there now are

more than

> 300 - and the effects of co-infections from the same tick bite are

slowly

> becoming understood. That's why, more than three decades after the

disease

> was first identified, Satti said of Lyme, " It's getting more

complicated. "

>

> She was able to take a step into one direction rarely found among

those who

> treat Lyme. It's possible, she said, that mainstream medicine may

ultimately

> reflect the views of the " Lyme literate " community.

>

> " I say that honestly thinking that these people the medical

community

> considers quacks are probably all right, " Satti said, " and 10

years from now

> we'll realize their aggressive approach was absolutely right. "

>

> There have been positive developments regarding Lyme. In July,

, of the

> Lyme Disease Association, and a delegation that included four

members of

> Congress met for the first time with CDC director Dr.

Gerberding.

> said she was encouraged by the response to the dozen or so

issues

> raised. Dr. Raphael Stricker, president of ILADS, said he's been

invited to

> be part of a discussion on long-term therapy for Lyme patients at

a meeting

> next month of the Infectious Diseases Society of America.

>

> U.S. Sen. Dodd has co-sponsored a bill that, among

other things,

> will provide $100 million over five years for Lyme research. And

Time for

> Lyme and the Lyme Disease Association is about $200,000 short of

raising the

> $3 million it needs to establish the first Lyme disease research

center in

> the United States, at Columbia-Presbyterian in New York City.

>

> In Connecticut, Attorney General Blumenthal, is impressed by what

he called

> " the volume of complaints " he's received from patients and doctors.

> Blumenthal is reviewing proposals for the next General Assembly to

amend

> legislation passed in 1999 that requires insurance companies to

provide at

> least 30 days of intravenous antibiotic therapy and 60 days of oral

> medications. Blumenthal said the law needs to be " toughened and

tightened to

> guarantee absolute consistent and complete coverage " in regard to

diagnosis,

> second opinions and length of care.

>

> None of these developments, however, will have any bearing on

whether Dr.

> Ray will continue treating children with Lyme.

>

> `Devastating " is the word Liegner, the Armonk, N.Y., doctor, used

to

> describe the possibility of losing his license. " I think

there will be

> hell to pay if that happens - from his patients. They're not going

to take

> it lying down. "

>

> estimates the defense of his license over the months of

hearings will

> cost more than $1 million. He is largely letting others solicit

for and

> supervise his legal defense fund so he can focus on his practice,

which

> remains all-consuming.

>

> During one stretch in July, he worked 14 days straight, said Sabra

,

> his office manager. Seven-day weeks were routine, though, until

> persuaded him to slow down.

>

> 's staff has resorted to trickery to force time off upon him,

sometimes

> putting a phantom patient into the appointment book at the end of

a day. But

> even when he's not working he's nearby. A widower since his wife,

Margery,

> died in 1994, he lives in one of the apartments in the building.

>

> " On Sundays, when most people are parked in front of their TVs

watching

> football, he's downstairs working on something having to do with

Lyme

> disease, " said. " We try to get him out once in a while,

feel the sun,

> but he doesn't believe in vacations. We're working on that, too. "

>

> Efforts to train a successor have so far been unsuccessful. Still,

> isn't looking for an exit strategy. Asked how long he expects to

continue,

> he first joked " about 20 years, " then added, " As long as I can, I

will. I

> enjoy practicing. I can't see sitting around not doing it, knowing

that

> children would be impaired. "

>

> To accommodate two hip replacements, spinal-fusion surgery and

arthritis, he

> wears dark track suits and black loafers rather than doctor's

whites,

> disarmingly ambling through his office with a slight limp and a

placid

> expression.

>

> On this day, is examining twins he said acquired the Lyme

infection

> through their mother's breast milk, since he said he believes she

was

> symptomatic when the girls were born. says he has treated

400 to 500

> children who were born with Lyme. The CDC, however, says it has no

reports

> of Lyme disease transmission from breast milk.

>

> Hailey and Gilian Raifman, 3-year-old sisters with blond curls and

butterfly

> barrettes, have made the two-hour ride from Queens, N.Y., with

their mother,

> , and an uncle. Because of her history with Lyme,

said she

> was concerned about her girls when they began exhibiting

neurological and

> behavioral problems. " One doctor told us we were chasing after

ghosts. He

> said that I wanted them to be sick, " said.

>

> The girls see separately, each sitting on his knee as he

asks them

> questions, before he brings them to his examining table, where

they allow

> him to gently manipulate their limbs and joints.

>

> " This is very good, " said as examined Hailey. " Her

> pediatrician can't even go near her, she starts screaming and

crying. But

> she has a lot of trust with Dr. . "

>

> Scenes like this are what motivate 's supporters to attend his

> hearings, contribute to his defense fund and sing his praises to

anyone

> who'll listen.

>

> " The thought of him not practicing, and so many kids suffering, "

said

> Guilford resident a Capasso, " is unimaginable. " She called his

> circumstances " very, very scary. What's scarier is we don't have

enough

> doctors that are willing to treat.

>

> " I don't know what people are going to do. "

>

> Santaniello is an Easton-based free-lance writer. This is his

third

> cover story for NE.

>

> Copyright 2006, Hartford Courant

>