> Responding to more commentary on the Jones Pediatric Lyme crisis below:
> ===================
>
> The problem is the Dole-Bayh Act. Whoever gets a government grant to do
> research and makes a patentable discovery, that discovery, in its entirely,
> SHOULD belong to the United States. If Yale or CDC members want to own the
> patent for their discovery and capitalize on it, they should take out bank loans
> to do the discovery work like everyone else (BigPharma).
>
> Yale should not have private access to biodefense data to capitalize on. The
> biodefense data is that Lyme is a borreliosis- a permanent brain infection, and
> is classified as a stealth disabler. It wrecks the immune system and leaves
> people to the mercy of their on past latent infections, their innate immunity,
> and all the new infections (airborne fungi and the like). This was said by Alan
> Barbour and others of the Lyme crooks, and not myself. (I will show you the link
> to Barbour's declaration, below.)
>
> As I explained to the US Attorney Kevin DCF-Rowlandgate-Good-Buddy to
> Corporate-Fraud-and-the-DCF-National-Pediatric-Jails-Racketeering-Enterprise
> O'Connor (who hates black people, like the Bush Brothers, Governor Rell and
> Tommy Thompson), the monopoly set up by Allen Steere and Yale was to declare
> Lyme a knee (genetically influenced hypersensitivity reaction to OspA) disease,
> but leave OspA and B out of the standard because it interfered with reading
> Western Blots, as I explained here:
> http://actionlyme.org/LYME_RACKETEERING_MAINPAGE.htm
> [Scroll down about 1/3 of the page for what happens to the blood tests in people
> who got LYMErix (unreadable blot-smudging)]
>
> Imugen and L2 Diagnostics were the only companies licensed to use the OspA-B
> less test, which, not coincidently, was the reason Allen Steere went to Europe
> to invent the current fake CDC blood testing standard, where OspA and B are left
> out of CDC's serodiagnostic criteria.
>
> It's racketeering and scientific fraud.
>
> There are many other things I could say about this, but I have already said them
> all, 87 million times. It's something you have to visualize. Gel
> electrophoresis (Lyme Western Blotting) is chromatography or Separation Science.
>
> Isolate, quantitate, qualify. That's analytical chemistry. WHAT is it, and
> WHAT does it do? (structure is function)
>
> A simple thing like the SPECIFICITY of each individual Western Blot band found
> in each patient equalling the ACCURACY of that test, is not something MDs can
> understand, because they're smarter than us chemists. If OspA is 100%% specific
> for Lyme, then if you have band 31, you have a 100%% chance of having Lyme.
>
> But if you have band 31, right now, you can't have a case of Lyme disease
> according to the CDC and Yale.
>
> OspA has now been left out of the standard. Steere's original criteria of
> saying that the changing and expanding IgM and IgG bands that he saw originally
> and thought were diagnostic on the principle that the bug was still alive, and
> therefore generating antigens to which IgM (NEW) antibodies were being created,
> was indicative of the persistence of the infection, has been completely dropped.
>
> Meanwhile, Alan Barbour restores this principle when he says
> http://actionlyme.org/ACTIONLYME_VIDEOS_EYE_ON_CORRUPTICUT.htm
> http://actionlyme.org/THE_CENTRAL_LYME_RICO_PATENTS.htm
>
> BARBOUR's PATENT:
> http://actionlyme.org/BIOWEAPONEERS_CORIXA_YALE_TLRS.htm
>
> "2.1 Methods of Treatment
> "An important aspect of the invention is the recognition that Borrelia VMP-like
> sequences recombine at the vls site, with the result that antigenic variation is
> virtually limitless. Multiclonal populations therefore can exist in an infected
> patient so that immunological defenses are severely tested if not totally
> overwhelmed..."
>
>
> If the bug is recombining and sending out FLAK, which is what it does when it
> blebs off these antigens, and new IgM is being created all the time, and, if, as
> UCONN's Justin Radolf says, persistent stimulation of toll like receptor-2
> results in tolerance (no more antibodies are produced), then Chronic Lyme is
> Chronic, because it is Chronic. That means it is constantly shedding off this
> flak, and the only thing that is diagnostic as far as an antibody, is band 41 or
> flagellin.
>
> For this reason, Yale perfected that Bb flagellin test (according to FDA rules
> for a validation of an analytical method) in 1991, and applied for a patent for
> it in 1993. The patent is US 5,618,533, and meets all the FDA ules for the
> validation of an analytical method.
>
> Validating analytical methods for the FDA was my full time job at Pfizer.
>
> Which is why I am so ferociously discredited. This is my bailiwick. Yale
> committed a huge scientific fraud, and they are deliberately perjuring
> themselves in court cases to deny children treatment and are now harassing the
> hell out of this old disabled man, the only one in the whole *country* with the
> courage to treat children and take on Yale.
>
> We don't grow em like Jones any more. We just grow lying, perjuring, selfish,
> spineless cowards. This is the culture we want to export by violence. The US
> Attorney Kevin O'Connor and his gang, and the local New Haven FBI are a bunch of
> spineless, dickless wonders, and by their incompetence, has contributed directly
> to more injury to children across this nation and also in Europe.
>
> The New Haven FBI wants to focus on pediatric porn. I guess they enjoy watching
> it too.
>
> If O'Connor and the FBI wanted to watch porn, they could just follow the DCF
> around, since all the DCF does is party and screw. Even with the children.
>
> http://actionlyme.org/HOTEL_HALLIBURTON.htm
>
> Kathleen
>
>
> From:
> [Add to Address Book]
> To: SpinLyme@yahoogroups.com
> Subject: [SpinLyme] An important article about Dr. Jones
> Date: Monday, September 18, 2006 10:03:20 [View Source]
>
> Note:� What's scary is how the anti-Lyme (CDC) doctors totally ignore what
> the patients are saying, which is how they feel better on antibiotics, how their
> treatment took years, not three weeks, how difficult it is to find a doctor,
> how petrified they are that they'll lose the doctors who are prescribing, etc.
>
> http://www.courant.http://wwhttp://www.courahttp://www.chttp://wwhttp://wwwhttp:
> //www.http://www.cohtt
>
> Lyme Disease Divide
>
> A Schism Over Treatment Philosophies Puts A Connecticut Pediatrician'
> License On The Line
>
> By Gary 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. Charles Ray Jones, 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 Jones's approach to treating the disease.
>
> Sitting at a desk in one of his small examining rooms, Jones 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. Jones. 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 Jones 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 Jones'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 Jones. "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. Steven Phillips of
> Wilton, whose practice consists entirely of Lyme patients. "It's a hotly
> contested area of medicine."
>
> Dr. Charles Ray Jones 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 Jones 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, Jones has treated more than 10,000 children for Lyme
> from virtually every state, and from around the world.
>
> Jones 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.
>
> Jones 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 Jones'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 Jones 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 Jones 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 Jones 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, Jones 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."
>
> Jones'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, Jones's license should
> be revoked or other disciplinary action taken. Because it is an
> administrative hearing based on findings of fact, Jones's grounds for appeal
> are limited.
>
> The prospect of losing Jones'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 Jones is to the Lyme
> community," said Sheila Lederman, who came from Parkland, Fla., west of Boca
> Raton, with her daughter, Jessica, to attend a hearing in June. Jessica, now
> 18, was first treated by Jones 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, Mary Ann, also a patient of Jones.
>
> "Of course I'll help him," she said. "There are things in life you do no
> matter what, and Dr. Jones 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 Jones 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 Richard 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 Jones, 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 Jones appear to be part of a
> pattern against doctors who take an aggressive approach to treating Lyme,
> said Pat Smith, the president of the Lyme Disease Association, a national
> nonprofit organization, based in Jackson, N.J. Smith 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. Joseph 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 Jones, said Smith, 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 Jones 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 Paula Capasso, a Guilford resident whose 17-year-old
> daughter, Alexandra, has been a patient of Jones's since 2000. "It scares
> me, because we're in deep trouble if this goes bad."
>
> Despite Connecticut' Despite Connecticut's dubious claim to fame as 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. Mary 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. Robert 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' Connecticut's Lyme numbers represent "the tip of the ic
> 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, communicate," said Dr. Kenneth Liegner of Armonk, N.Y., a
> 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 - Jones 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 Jones, 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,
> Jones 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. Phillips 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, treats her patien
> 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. Jones."
>
> 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? Jones 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, Jones briefly attended Boston University's
> Divinity School, where he met Martin 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, Smith, of the
> Lyme Disease Association, and a delegation that included four members of
> Congress met for the first time with CDC director Dr. Julie Gerberding.
> Smith 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. Christopher 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-Presbyteri the United States,
>
> 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.
> Charles Ray Jones will continue treating children with Lyme.
>
> `Devastating" is the word Liegner, the Armonk, N.Y., doctor, used to
> describe the possibility of Jones 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."
>
> Jones 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 Hughes,
> his office manager. Seven-day weeks were routine, though, until Hughes
> persuaded him to slow down.
>
> Jones'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," Hughes 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, Jones
> 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, Jones 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. Jones 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,
> Melissa, and an uncle. Because of her history with Lyme, Melissa 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," Melissa said.
>
> The girls see Jones 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," Melissa said as Jones examined Hailey. "Her
> pediatrician can't even go near her, she starts screaming and crying. But
> she has a lot of trust with Dr. Jones."
>
> Scenes like this are what motivate Jones'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 Paula Capasso, "is unimaginable. Guilford reside
> 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."
>
> Gary Santaniello is an Easton-based free-lance writer. This is his third
> cover story for NE.
>
> Copyright 2006, Hartford Courant
>
>
>
> --
> http://www.actionlyme.org