A Schism Over Treatment Philosophies Puts A Connecticut Pediatrician's 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'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. 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'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. Kenneth 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 - 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," 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. 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-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. 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." 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."
Gary Santaniello is an Easton-based free-lance writer. This is his third cover story for NE. Copyright 2006, Hartford Courant
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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5dana8
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Thanks for posting this article Nan,
the medical community is pathedic & this whole situation just stinks bad.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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northstar
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Thank you for posting this. I thought it was in depth approach to both sides, but the human side was really evident when Dr. Jones was discussed. He must be amazing.
In regards to Shapiro: "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."
well, only in your ego dreams and delusions, Shapiro.
N.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I ran right out and bought a copy after your post. I am so happy to see anything at all on this topic in the news here in CT.
Very impressed that the editor published it. In fact she wrote in the "from the Editor" page that publishing this story was as dangerous as flying a kite in a lightning storm on top of a mountain.
She also requested responses from people to the article...so PLEASE...here is our opportunity to respond...
If you have had a child get well with dr. j after seeing a duck please let them know.
If you got well with long term abx...let them know!!
I just called a woman whose was told by shapero that her nine year old daughter was profoundly mentally ill and did not have lyme...she later took her to jones who promptly treated her illness and now the girl is perfectly sane and about to graduate from wellsley...! So she will be writing a reply to the article..
Thanks for alerting us to this. Kim
-------------------- We are spiritual beings on a human journey...
timaca
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Do you have an e-mail link to send letters to the editor?
Timaca
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timaca
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Letter to the Editor
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timaca
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wrote my letter to the editor.
Timaca
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The thing I find so interesting about this whole debate is the time frame involved. The protocols at Yale and else where were developed in the 1970s and 1980s. The spirochete itself, if my memory serves me, was not even discovered until what 1986??? Then the diagnositic standards and protocols and treatments were promulgated by the CDC in 1994 and since that time when we have received the truth from on high as it were nothing new has been developed and nothing new has been discovered about this disease. In other words eight years after the discovery of one strain of the causative pathogen we had learned all we need to know and can totally disregard everything that has happened since 1994. Am I the only person to see the idiocy of this.
The central problems are ego and money. If one were to look at patients instead of test tubes and the academic publishing game and the insurnace bottom line we might have a very different picture to emerge. What Shapiro and Steere and the CDC do not seem to realize is that Lyme Disease is not going to go away. It is only going to get worse. Like sea revealed to King Canute sitting beside the seashore Borrelia is going to demonstrate that it is not going to away and is only going to get worse. Someday These Yale doctors and the CDC will be looking upon as commiting crimes against humanity.
-------------------- Thomas Parkman Posts: 341 | From Columbia SC 29206 | Registered: Feb 2003
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posted
So, the truth is out about our newspapers. They deliberately avoid printing stories on controversies? Even when it involves a major public health problem? That this editor was afraid to print it is amazing.
Same situation for the first years of the AIDS epidemic. It just got ignored.
I remember hearing a story about the U.S.S.R. suppression of bad news or controversy in the media; this particular case was involving a huge forest fire on the outskirts of Moscow. People in the streets could see the orange glow in the sky and cinders were falling on the city. But not a word about it appeared on TV, radio, or in the newspapers.
Posts: 8430 | From Not available | Registered: Oct 2000
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Thomas, hope you will write a letter to the paper with your points about the time frame and lack of progress. Maybe leave out the part about crimes against humanity which would surely prevent your letter from getting into print. True, but destined for the round file by timid editors. Actually, I guess we should be amazed that this article was as balanced as it was. Beats the NY Times for sure in its lyme coverage truthfulness.
Posts: 8430 | From Not available | Registered: Oct 2000
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We are proud to help fight this battle for access to Lyme treatment.
Posts: 156 | From MA | Registered: Jul 2003
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Beverly
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Thank you for posting this Nan.
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Beverly
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Thank you for posting the pictures kidsatlast.
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bettyg
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Kid, yes, thanks for posting photos of your kids/you, and Dr. Jones!
Here's what I just sent the newspaper. I lost my 1st draft when down to the last paragraph; pc froze up!
CHRONIC LYME DISEASE TREATMENT
Kudos to writer, Gary Santaniello, who wrote an outstanding, non-biased 9-17-06 letter about Dr. Charles Jones, lyme literate MD for treating 10,000 CHRONIC LYME children to date.
You wrote an in-depth article about Camp A, Steere/Shapiro, vs.Dr. Joseph Burrasano's LONG-term antibiotics vs. Camp A's short-term usage.
I'm a lymie of at least 36 years of having CHRONIC LYME that was MISDIAGNOSED for 34 years. I was on 20 months of pulsed antibiotics, which helped kill many tick spirochetes in my entire body.
I'm angry with the IFDA, infectious Drs., for their treating SHORT-term only which was 3 weeks of antibiotics until this summer when they changed the policy to ONE DAY ONLY of antibiotics!
I'm appalled knowing the tick's spirochete's cycle in our blood is EVERY 28 days. Three weeks was not enough to KILL ALL ``CHETES'' in our bodies; now ONE-day antibiotic is ridiculous!
I don't want anyone having been bitten by a tick and/or having the bulls-eye rash, which MAJORITY of us never has, walking in MY shoes! I wouldn't wish this hideous disease on my worse enemy!
Another thing needing to be addressed is for ALL lymies is this:
DO NOT GIVE BLOOD, TISSUE, ORGANS, BONE MARROW, etc. To anyone! Do you want the recipient to have ALL the pain, fatigue, vision/sound/chemical/food allergies you do plus the extensive list of about 125 other symptoms? I don't!
When I was finally diagnosed correctly with CHRONIC LYME, I contacted our local blood bank since I donated blood for 15-20 years. All those people were infected with my misdiagnosed chronic lyme disease! They didn't care.
I was told they met the American Red Cross blood donation requirements which meets USA's Dept. Of Defense criteria: being FREE of lyme disease SYMTOMS FOR 12 MONTHS ONLY!
This is totally wrong! It's the same as giving folks HIV/AIDS blood. There have been deaths from chronic lyme and many deaths just had another of the 300 MIMICKING illnesses names on their death certificate.
My primary care physician of 25 years diagnosed me correctly after my IGENEX, Calif. Western blot IgM & IgM blood tests came back with many positives meeting the CDC's standards. So now I am one of the statistics for 1994 in the USA. Great; I'm a living statistic for now!
Igenex tests all 16 protein bands; it's one of 3-4 in USA that does. My local clinic resent my blood again to Mayo Clinic, Minn.; Mayo said I was NEGATIVE for chronic lyme after only testing 2 of 16 and 5 of 16 bands. How sad this prestigious clinic does NOT have the latest, sensitive equipment to test for lyme, and then to have knowledge LYME LITERATE MDs to diagnose & treat us. They don't have LLMDs either!
I applaud Dr. Charles Jones who has faithfully treated 10,000 CHRONIC LYME CHILDREN to date. He's saved their lives and most importantly, he gave them a QUALITY life to look forward to!
It's not like the last 36 years I've been bounced for one MD specialist to another in my 45-50 MDs to get the correct diagnosis.
The infectious MDs should get their heads out of the sand, and breath fresh air recognizing CHRONIC LYME exists and LONG-term antibiotics are needed to kill the spirochetes in our bodies. We too want a QUALITY LIFE in my golden years, and I'm only 57!
Had to quit work at age 49 with NO BENEFITS after working nearly 31 years. Had to fight 5 years of hell to receive SSDI, SS disability insurance benefits; winning them finally in 2005!
My Iowa BCBS will NOT pay for my LLMD/holistic Drs. Appt., prescriptions for compounded pharmacy meds, many body labs done while doing complete body lab testing. They revealed I'm allergic to these foods: gluten: wheat/rye and casein: cow's milk, cheeses, egg whites, & garlic plus being a diabetic. Can you imagine my diet now?
Dr. Jones, 77, should be cleared of any charges and allowed to continue treating chronic lyme children as long as his health permits. Thank you. Betty Gordon
posted
you see how important is to assist to the hearings.... I hope a lot of people can go the next hearing Sep 28.....I'm waiting for the confirmation though... Even if it is a short session we all should go.... At this point I'm even wondering if the date have not been confirmed because of the board's side....and if this is true, together with the "short session" notice I'm afraid people wouldn't go....please even if it is for 2 or 3 hours we should make and effort.....even if the driving hours are longer than the session..... Don't let this "events" to change your mind about going......
Posts: 983 | From The sky | Registered: Feb 2005
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posted
Well, keeping the public uncertain about the date for the hearing looks very much like a way of decreasing the attendance, doesn't it?
And did anyone else think that Shapiro quote was off the charts for weirdness. Why would anyone call him about seeing kids with lyme symptoms, except to have him deny that they need any treatment? Is his the guaranteed second opinion to cow parents into shutting up about their kid's symptoms? So, they will go away and stop bothering doctors and asking for treatment?
[ 18. September 2006, 10:31 AM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Is this the hearing where they announce the decision or does that happen off camera and behind closed doors so as not to precipitate a riot? That is, if lyme patients are capable of rioting. They certainly didn't in NC.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I sent my thank you to the editor and let him know that the article has rippled its way all the way to Southern Illinois.
Posts: 460 | From Illinois | Registered: Aug 2005
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quote:Originally posted by bettyg: Kid, yes, thanks for posting photos of your kids/you, and Dr. Jones!
Here's what I just sent the newspaper. I lost my 1st draft when down to the last paragraph; pc froze up!
CHRONIC LYME DISEASE TREATMENT
Kudos to writer, Gary Santaniello, who wrote an outstanding, non-biased 9-17-06 letter about Dr. Charles Jones, lyme literate MD for treating 10,000 CHRONIC LYME children to date.
You wrote an in-depth article about Camp A, Steere/Shapiro, vs.Dr. Joseph Burrasano's LONG-term antibiotics vs. Camp A's short-term usage.
I'm a lymie of at least 36 years of having CHRONIC LYME that was MISDIAGNOSED for 34 years. I was on 20 months of pulsed antibiotics, which helped kill many tick spirochetes in my entire body.
I'm angry with the IFDA, infectious Drs., for their treating SHORT-term only which was 3 weeks of antibiotics until this summer when they changed the policy to ONE DAY ONLY of antibiotics!
I'm appalled knowing the tick's spirochete's cycle in our blood is EVERY 28 days. Three weeks was not enough to KILL ALL ``CHETES'' in our bodies; now ONE-day antibiotic is ridiculous!
I don't want anyone having been bitten by a tick and/or having the bulls-eye rash, which MAJORITY of us never has, walking in MY shoes! I wouldn't wish this hideous disease on my worse enemy!
Another thing needing to be addressed is for ALL lymies is this:
DO NOT GIVE BLOOD, TISSUE, ORGANS, BONE MARROW, etc. To anyone! Do you want the recipient to have ALL the pain, fatigue, vision/sound/chemical/food allergies you do plus the extensive list of about 125 other symptoms? I don't!
When I was finally diagnosed correctly with CHRONIC LYME, I contacted our local blood bank since I donated blood for 15-20 years. All those people were infected with my misdiagnosed chronic lyme disease! They didn't care.
I was told they met the American Red Cross blood donation requirements which meets USA's Dept. Of Defense criteria: being FREE of lyme disease SYMTOMS FOR 12 MONTHS ONLY!
This is totally wrong! It's the same as giving folks HIV/AIDS blood. There have been deaths from chronic lyme and many deaths just had another of the 300 MIMICKING illnesses names on their death certificate.
My primary care physician of 25 years diagnosed me correctly after my IGENEX, Calif. Western blot IgM & IgM blood tests came back with many positives meeting the CDC's standards. So now I am one of the statistics for 1994 in the USA. Great; I'm a living statistic for now!
Igenex tests all 16 protein bands; it's one of 3-4 in USA that does. My local clinic resent my blood again to Mayo Clinic, Minn.; Mayo said I was NEGATIVE for chronic lyme after only testing 2 of 16 and 5 of 16 bands. How sad this prestigious clinic does NOT have the latest, sensitive equipment to test for lyme, and then to have knowledge LYME LITERATE MDs to diagnose & treat us. They don't have LLMDs either!
I applaud Dr. Charles Jones who has faithfully treated 10,000 CHRONIC LYME CHILDREN to date. He's saved their lives and most importantly, he gave them a QUALITY life to look forward to!
It's not like the last 36 years I've been bounced for one MD specialist to another in my 45-50 MDs to get the correct diagnosis.
The infectious MDs should get their heads out of the sand, and breath fresh air recognizing CHRONIC LYME exists and LONG-term antibiotics are needed to kill the spirochetes in our bodies. We too want a QUALITY LIFE in my golden years, and I'm only 57!
Had to quit work at age 49 with NO BENEFITS after working nearly 31 years. Had to fight 5 years of hell to receive SSDI, SS disability insurance benefits; winning them finally in 2005!
My Iowa BCBS will NOT pay for my LLMD/holistic Drs. Appt., prescriptions for compounded pharmacy meds, many body labs done while doing complete body lab testing. They revealed I'm allergic to these foods: gluten: wheat/rye and casein: cow's milk, cheeses, egg whites, & garlic plus being a diabetic. Can you imagine my diet now?
Dr. Jones, 77, should be cleared of any charges and allowed to continue treating chronic lyme children as long as his health permits. Thank you. Betty Gordon
nice letter, Betty. I would offer just one suggestion, though, and that's not to use "our" language- Chetes or Keets, lymie, etc. The other camp already thinks we're nuts who are getting some secondary gain from insisting that we are chronically ill, they like to portray us as a club of wierdos. We have to use their language and not give them any fuel to go off on tangents about us. Just my opinion....
Posts: 688 | From CT | Registered: Jan 2003
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posted
here's my letter: ********************* Dear Ms. Frank, Thank you for the unbiased and accurate feature on the state of affairs in the world of Lyme Disease treatment.
In late 2003 I found myself suffering from unusual complaints: fatigue, mental fuzziness, facial numbness, headaches, numbness in my hands and the tip of my tongue. I had already been diagnosed with "fibromyalgia" 13 years earlier as the result of a vaccine injury. My joint pain and muscle aches were back on the increase.
I was diagnosed by one of the "Lyme Literate" MDs you mentioned, after my own primary care practitioner told me I had chronic fatigue syndrome (as an extension of "fibromyalgia"), and gave me an antidepressant. To his credit, Lyme disease was one of the diagnoses he considered. He drew blood for a Western blot, which unfortunately was done by a typical lab not known for accuracy with Lyme Western Blot tests. (maybe as many half of all Western Blots are false negative).
While the results were pending, he started me on a month of doxycycline. When I took the antiboitic, I got sicker. He told me that since I was getting worse, not better, I must not have Lyme. In fact, my symptoms became so troubling that I considered writing letters to my children, to be opened on their milestone occasions, such as marriage. I feared I would not be there to see those occasions. Eventually my Western Blot came back "negative", and I was given a prescription for an antidepressant.
I continued to research my symptoms and found lymenet.org, a bulletin board by and for those with Lyme disease. I found a lyme literate physician here in CT, who gave me a very thorough exam and a battery of lab work. My Western Blot was repeated, but this time, by Igenex in California. They are noted to be the best lab for Lyme Western Blots in this country. My test came back positive.
My "LLMD" explained that my worsening after starting antibiotics is known as a Jarish-Herxheimer (?sp) reaction, in which the antibiotics kill of the bacteria, and endotoxins are released, which causes a worsening of symptoms. Most all patients with Lyme, especially chronic or later stage Lyme, experience this. In fact, I used it as a guage to measure my progress. I took antibiotics for the better part of a year, and each time, the reaction was less. Less bacteria present, I assumed.
It is quite probable that I had lyme for 13 years before being accurately diagnosed, based on my documented history of that an unusual illness/vaccine injury that fit the clinical pattern of Lyme.
At this point, I am what I consider ~85% better. I have good days and not-so-good days, but I'm able to work full time again. I manage the set-backs with "tune-ups" as needed- a course of 6 weeks of oral antibiotic therapy to knock the bacteria back down.
I do so appreciate physicians like Dr. Jones and Dr. Phillips who advocate, research, teach, and treat so that those of us who have been affected by this epidemic have a better chance at good quality of life.
I'm also thankful to lymenet.org for answering all my questions, helping me find my Lyme-literate physician, and giving me the encouragement to make it through the most difficult moments.
I hope that your feature article demonstrates to medical boards and insurance companies the need to devote the time and resources to research this disease and design treatment protocols that meet the needs of the victims, instead of punishing the physicians who treat us.
Regards, Cynthia XXXXX Salem, CT
Posts: 688 | From CT | Registered: Jan 2003
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
IMO...It is totally WRONG to blame doctors for doing what they were TAUGHT to do...if a patient has ongoing infections, treat that patient with antibiotics.
Researchers do not share or read materials from other researchers (I tried sending info. to many universities and cancer hospitals. They refused it.)
Many have a tiny piece of the puzzle, but they aren't sharing and no one is putting the puzzle together.
Genetic research (and the internet) has opened up a can of worms.
We know more than most doctors about this disease.
While I am NOT a proponent of antibiotics to treat THIS infection, I DO acknowledge the following:
The Neuroscientist, Vol. 11, No. 4, 308-322 (2005)
"Several studies have shown that minocycline, a semisynthetic, second-generation tetracycline derivative, is neuroprotective in animal models of central nervous system trauma and several neurodegenerative diseases.
Common to all these reports are the beneficial effects of minocycline in reducing neural inflammation and preventing cell death.
Here, the authors review the proposed mechanisms of action of minocycline and suggest that minocycline may inhibit several aspects of the inflammatory response and prevent cell death through the inhibition of the p38 mitogen-activated protein kinase pathway, an important regulator of immune cell function and cell death."
Since we KNOW Bb is following the glycolysis and cholesterol pathways we must INactivate the enzymes that trigger these pathways...simultaneously.
It can be done using a completely NATURAL mineral and those nutrients it works in concert with.
By law, the pharm. companies cannot sell natural nutrients and they mess them up when they alter them.
PRIOR TO VACCINES, years ago, what did Dr. Pierre Delbet use to halt many diseases...including diptheria, polio, etc.?
History will repeat itself...eventually we will acknowledge just how vital the right nutients, in the right amts, given at specific times...makes a HUGE difference.
Everything comes from nutients...all our proteins - hormones, neurotransmitters, etc.
Our ability to stay well and to fight disease depends on nutrients, good water, sunlight, and fresh clean air.
Other "alternative" routes DO exist and are also capable of halting this disease...from different angles.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Kids, I want to thank you for pointing out the photos of your kids with Dr. Jones. I think the look on his face tells it all.
He obviously loves children. You can see it in his face and the loving way he looks at your children.
As a former teacher, until I was felled by Lyme, I recognize that look. Those who are in fields that involve working with children often have that look.
They are in it for the love of children and seeing them improve, not for the bucks or the glory. I think that truly embodies the spirit of Dr. Jones, from all I've read.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
For me, this was the best part of the article. How thorough and to the point! I split it up to make it easier to read.
[quote] 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." [end quote]
I agree that we shouldn't use abbreviations and "nicknames" for anything when writing to an editor.
The other thing is that letters to the editor should not be so long. They won't usually read them let alone publish them.
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
The reporter had to write something good on both Camps to stay 'unbiased' and keep credibility high. That is why this info on Doctor Shapiro is there.
Great, great article!
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
sometimes even if a letter to the editor is too long, if they like the content, they will print as an editorial, or have a reporter interview you for a follow-up story. At the very least, it counts toward (hopefully) the huge response they get from victims (of both the disease and the insurance/medical community).
Posts: 688 | From CT | Registered: Jan 2003
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posted
^
Posts: 983 | From The sky | Registered: Feb 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
You are correct...they like the letters to be 200 words or less.
It looks like they will be printing a letter that my friend wrote. It's a good letter, that states "our" side.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
timaca, is your friend on the board and is it posted here? GOOD DEAL! Bettyg
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I got a response from the editor, and she said she has been receiving lots of replies. Thanks, everybody! You can assume that the "other camp" sent replies as well.
Lou, we will not have a decision after the hearings are over. The panel told us they would be reviewing all the evidence, then would make a recommendation to the entire medical board, who would then discuss and vote on it.
My question is, can we attend THAT meeting and have our voices heard before the vote?
The panel disallowed testimony from other families that see Dr. J. But I think their testimony speaks to the issue of why Dr. J would renew an antibiotic prescription over the phone. The consequences of untreated Lyme disease are horrendous.
-- Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Thank you for your courageous decision to print Gary Santaniello's story on Lyme Disease.
After attending the hearings, what strikes me most is how a cutting-edge physician who has helped thousands of children is on trial while less studied physicians are allowed to misdiagnose and under treat this dangerous disease.
We are only in the infancy of understanding Borrelia Burgdorferi and the cocktail of other diseases carried by ticks.
What we do know is that B. Burgdorferi like its closest cousin Treponema pallidum (the causative agent of syphilis), is a spirochete which can burrow deep into nerve tissues within days after a tick bite.
It reproduces every 28 days. It can change forms from a spiral shape to a cyst form capable of hiding and resisting antibiotics.
Knowing this, how can we not treat until all symptoms are gone? Why can't we accept that medicine is an art and a science--especially where an evolving disease is concerned?
Connecticut should be ashamed that we have allowed this potentially devastating disease to become politicized to the point where desperately ill patients are left scrambling for help from the few doctors who must risk their livelihood to treat them.
-------------------- We are spiritual beings on a human journey...
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
bettyg~ No, my friend does not ususally post on the board, so her letter is not here. It was brief (so maybe that helped it get printed) and was to the point...
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
Good 198 word letter!
Timaca, thanks for the feedback on your friend's brief letter! Bettyg
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Here is my friend's letter. She gave me permission to post it here. She also contacted the newspaper. They have gotten so many responses that the letters will be available online. Timaca
Here's her letter:
Thank you so much for publishing the recent article on Lyme Disease and the controversy surrounding it. I have suffered from fatigue, fevers, numbness on my right side etc for over 20 years. I have been to doctor after doctor who either told me I was a hypochondriac or was depressed. Finally I tested CDC positive on both Western blot blood tests and began treatment almost a year ago. My fevers are gone and I am feeling better than I have ever felt in my entire adult life. I know so many suffer hopelessly with this disease and it is a shame the CDC and medical community have not done more to research this disease. It is robbing many of their vitality. Thank you for having the courage to do the right thing and publish this article.
Here's the response from the paper:
I'm sorry, but our policy does not allow for readers or sources to review > material in advance of publication. > > If it helps, we received a large number of letters from supporters of Dr. > Jones, many of whom describe having suffered from chronic Lyme disease and > who believe the short-term treatment protocols don't work. They are > similar > to your letter in content, tone, etc. > > Most of the letters will only be published online because we received so > many we couldn't fit them in print. You can view them beginning Sunday at > www.courant.com/ne. >
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Message from Dr. Jones about the Sept. 28, 2006 Hearing
Charles Ray Jones, MD Susan L. Marra, ND Madison Towers 111 Park Street New Haven, CT 06511
September 12, 2006
Dear Valued Friends and Patients;
I have just heard from Attorney Pollack that the next scheduled date for the continuation of my hearings is Thursday, September, 28, 2006 at 10:00a.m. in the Legislative Office Building, Hartford, CT, Room 1E. As all of you know, this has been a rather tedious and difficult fight for the long term antibiotic treatment of Lyme disease and coinfections in children. However, this hearing is particularly important. The mother and the two children for which this hearing is all about will be testifying in regards to the outcome of my Lyme Disease treatment for them. The mother is very sympathetic to my situation and wants to help me in any way to ensure success and continued medical practice. But again, I need your support as well. If you are able to attend my 5th hearing on September 28, 2006 for 2 or 3 hours, I would greatly appreciate your presence. The children in question are happy, well and will demonstrate that my work is worthy and correct. Please help me to continue fighting this very important pediatric medical issue. Thousands of children will benefit from a positive outcome of my hearings, and other physicians will be able to continue practicing without fear that they too may find themselves against a medical board for less than appropriate charges.
Thank you for your continued support, and your presence at this particular hearing would be most appreciated.
posted
Betty's letter was printed! There are 7 "e-pages" of replies. Some from the other camp, most from "us".
Posts: 688 | From CT | Registered: Jan 2003
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
is there a link for the e-pages of replies? Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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bettyg
Unregistered
posted
Cindy, on my letter, was it printed as written or did they reduce it down to 200 words?
I too want to read all the letters, and sent 20 minutes on their newspaper site trying to find what you found WITHOUT ANY LUCK. Yes, please show the link so we can read all replies online. Thanks Cindy! Bettyg
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posted
I don't know how to do links. Go to hartfordcourant.com, and click on "home". On the left side, is a link to their NE Magazine.
Posts: 688 | From CT | Registered: Jan 2003
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