posted
Yet another hack job by a widely read and respected newspaper!! We need to respond to this article with gusto at [email protected]:
There's No Neutral Ground in War Of Information About Lyme Disease
By Jason Feifer Special to The Washington Post Tuesday, May 15, 2007; Page HE01
Maryland Del. Karen S. Montgomery (D-Montgomery) knows Lyme disease can be a nasty foe: Both she and her husband have been through bouts of it. But when she introduced a bill in the legislature to distribute long-established treatment guidelines on the tick-borne infection to doctors statewide, she ran up against another adversary: Lyme advocacy groups.
Opponents dropped by her office in Annapolis to demand interviews. E-mails and faxes flooded in, expressing dissatisfaction with what the writers saw as shortcomings in the guidelines. The president of the Lyme Disease Association -- a group with 24 affiliates in 15 states -- testified against the bill, saying it would stymie treatment for what the group says is a chronic, painful and largely unrecognized form of the infection. Montgomery's measure was approved by the House of Delegates, but it died in the Senate last month.
As the incidence of Lyme disease has grown nationwide -- roughly 23,300 cases were recorded by the Centers for Disease Control and Prevention in 2005, up from about 17,000 in 2001 -- so has the political clout of Lyme activist groups, building on some people's frustration with standard treatments and the belief that many diffuse ailments, from arthritis and headaches to irritability and poor concentration, are actually symptoms of lingering, active Lyme disease. The activists have attacked legislation on state and federal levels, protested outside doctors' offices and lined up powerful allies, including Connecticut's attorney general. Last month they opened the Lyme Disease Research Center at Columbia University, made possible by $3 million the groups raised.
Fighting treatment guidelines of the type Montgomery favored has become one of the activists' primary goals. Those guidelines, crafted by the Infectious Diseases Society of America, a leading group of disease specialists, recommend against some treatments, such as long-term courses of antibiotics; the activists say such advice stops doctors from recognizing and treating "chronic Lyme."
The IDSA and other medical experts say there's no evidence that this chronic condition exists. Undeterred, the groups have produced their own guidelines -- including treatments that have not passed standard scientific tests or peer review -- and held conferences and published books about the disease. Leading health authorities including the CDC say some of the groups are promoting misleading and potentially dangerous information -- encouraging some doctors to misdiagnose patients and treat them with bogus remedies.
"We do indeed get calls from patients who are confused -- they hear one thing and then they read something else, and they don't quite know what to make of it," said Paul Mead, a medical epidemiologist at the CDC.
Researchers such as Gary Wormser, a Johns Hopkins-trained infectious diseases expert and lead author of the IDSA guidelines, say the activists have created an atmosphere of intimidation that inhibits research. "I don't think there has ever been another disease for which I have been attacked on the Internet like this. . . .They're not just content to just have two schools of thought, either. They kind of want to wipe out mainstream thinking and only have this school of thought."
Pat Smith, president of the Lyme Disease Association, said that such charges are unfounded and that it's mainstream experts who are keeping useful disease information from people who need it.
"We are patients, we are families of patients, and quite frankly we are tired of a small group of individuals dictating that patients should not be getting treatment for a disease that they have," she said. After feeling harassed for years, she added, patients were standing up for their rights and challenging disease experts, who are "getting a dose of their own medicine."
Lyme disease, first recognized by researchers in Old Lyme, Conn., in 1975, is a common infection readily treatable with a two- to four-week course of antibiotics, according to medical authorities, including the CDC. In 1998 the Food and Drug Administration approved a Lyme vaccine; the manufacturer withdrew it from the market in 2002, citing low sales.
Caused by the bacteria /Borrelia burgdorferi/, Lyme is typically transmitted through the bite of a deer tick. A bull's-eye rash often develops around the area of the bite, and a patient may develop flulike symptoms such as aching and fatigue. "A few patients, particularly those diagnosed with later stages of disease, may have persistent or recurrent symptoms," says the CDC, and a second four-week course of antibiotics may be helful. If left untreated, the disease can spread to joints, the heart and the nervous system, according to the agency.
Symptoms that persist long after treatment do not mean the disease is still active, say infectious disease experts. But they concede that some questions remain. "Here is where it gets confusing," wrote Wormser in an e-mail, "because about 10-20 percent of people without Lyme will have the same types of symptoms at any point in time. So the question arises: Are the symptoms that are present . . . post-Lyme related to having had Lyme, due to some other identifiable cause or the same as the symptoms (of unknown cause) found in the healthy population?. . . The good scientific studies cannot find evidence of residual Borrelia in such patients."
Some advocacy groups disagree, claiming the disease can often become a treatment-resistant chronic infection marked by painful muscle spasms, memory loss and chronic fatigue/./ Their ranks include some people who have never tested positive for the infection on recognized tests and can't account for their exposure . Some of those convinced they have chronic Lyme search out physicians that activist groups call "Lyme literate." Some of these doctors prescribe up to a year or more of antibiotics, claiming the standard short-term dose isn't always sufficient to kill the Lyme bacteria. Studies have shown that long-term antibiotic treatment is not effective, can lead to antibiotic resistance and can harm or even kill, according to CDC epidemiologist Paul Mead.
State medical boards have launched investigations of many so-called Lyme-literate doctors and have taken disciplinary action against some. In April 2006, for example, the North Carolina Medical Board charged a doctor with inappropriately diagnosing and treating 10 patients for Lyme disease. According to Quackwatch, an organization that tracks unscientific medical claims, there was no evidence for his Lyme diagnosis in any of the cases and no basis for his prescribing several months' treatment with intravenous antibiotics. He was allowed to continue practicing medicine, subject to restrictions.
Paul Beals, a family practitioner in the District, treats patients he has diagnosed with chronic Lyme with up to a year of antibiotics, monitoring them, he said, to make sure the medicine is not causing harm. He also instructs patients to boost their immune systems by making dietary and lifestyle changes, including more rest, no alcohol, and taking dietary supplements and fish oils.
"The CDC just doesn't recognize how resilient this bug is to short-term antibiotics," he said.
Beals has been placed on probation in Maryland and the District for performing tests and prescribing treatments, unrelated to Lyme disease, without medical indication.
Rob Marra, a personal trainer in Baltimore, uses alternative therapies including diet change (lots of vegetables; no coffee, sugar or grains) and nutritional supplements (including sea salts and magnesium) for what he said is a case of chronic Lyme that basically immobilized him for more than two years. He said he doesn't care that most doctors wouldn't approve of this treatment.
"The medical community has always resisted things that have tons of anecdotal evidence, but if they don't have a lab result or the research to back up what someone is actually saying, they'll say that they're crazy," he said.
Alternative Lyme therapies promoted on the Internet and elsewhere include:
/? Hyperbaric oxygen chamber./ The chamber, more commonly used to promote the healing of infected wounds, delivers oxygen in high doses. Supporters offer multiple reasons for its use, most notably that increased oxygen levels in the bloodstream will harm the Lyme bacteria and that oxygen helps stimulate the immune system. Wormser said there's little evidence that this treatment does anything to fight Lyme disease, but he said it isn't considered harmful, either.
/? Rife machine./ Proponents say the electromagnetic device, at one time marketed as a cancer cure, aims energy waves whose specific frequencies shatter the Lyme bacteria, in much the same way that a singer's voice can shatter glass. Attorneys general in Wisconsin and Minnesota have taken action against selllers of Rife machines, claiming they offer false promises. Quackwatch says the device has "no value for diagnosing or treating anything."
/? Dietary changes./ Some patients take large doses of salt along with vitamin C, believing this will dehydrate or hurt the Lyme bacteria. "It's one of those therapies that doesn't have biologic rationale. There's no reason that it should work," said John Bartlett, an infectious disease specialist at the Johns Hopkins University School of Medicine. Other patients eat an alkaline diet because they believe the food can raise the body's pH and make it inhospitable to the Lyme bacteria. Wormser said that it's extremely difficult to alter the body's pH and that any serious change could result in death.
/? Pulse dosing./ Instead of taking a course of antibiotics, some patients take long breaks between bouts of medication in the belief that it will make the drugs more effective. Wormser said that has not been proved and that pulse-dosing studies done for HIV showed that it hurt patients.
The Lyme patient advocacy movement gained momentum in 2006, when the Infectious Diseases Society of America updated its guidelines for identifying and treating Lyme disease. The society included a list of alternative therapies not recommended for treatment of Lyme -- including pulse dosing, use of the hyperbaric oxygen chamber and nutritional management -- and that became a rallying point for the groups.
They got a boost from Connecticut Attorney General Richard Blumenthal, who launched an investigation into the IDSA to see whether it had unlawfully ignored some information about the disease. That investigation is ongoing, according to Blumenthal's office.
Wormser, author of the IDSA guidelines, said that throughout medical history, groups of people have blamed diverse and medically unexplained symptoms on a wide variety of ailments. Instead of chronic Lyme, he said, it was once chronic Epstein-Barr, and another time it was chronic candida. The difference now, he said, is that the Lyme groups are so loud.
/Jason Feifer last wrote for Health about proposals to give tax breaks to organ donors. Comments:health@... ./
Posts: 364 | From California | Registered: Sep 2005
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Deborah is the ombudsman for the paper. Use all email addresses!!
Posts: 364 | From California | Registered: Sep 2005
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Vanilla
Unregistered
posted
After I called them today to complain they did call me back when I was stepping into the shower and they left me a voice mail with a name and number to call back which I will do.
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posted
did some googling... Here is a post by Jason Feifer, the author of the Wash. Post article on HIS OWN BLOG TODAY: (Does he sound like an immature jerk or what??? Does he have any idea of the damage he has caused by the lack of his journalistic integrity??? I doubt it!) We can all post on his "blog" as well... It's: www.happyscrappy.com
Here's his own words:
Ticked off? I have a piece in today's Washington Post about the battle over Lyme disease. Mainstream science says it's a readily treatable, tick-borne bacterial infection, but patient advocacy groups and some doctors say it can become a chronic, debilitating ailment. The groups have organized themselves like political activists and aren't hesitating to wield their strength, much to the chagrin of mainstream medical groups.
One Lyme blog has already posted my e-mail address and a four-year-old photo of me. (Those sideburns? No more.) Should be interesting to see what the day brings.
Posted by Jason Feifer at May 15, 2007 09:04 AM
Posts: 364 | From California | Registered: Sep 2005
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posted
****I would not waste my time with him*****
****He has a link to quackwatch on his website.****
It's pointless. He's one of those people who make subjective opinions about things he has no background in. I also wouldn't give him 'hits' on his website. He may have found a way to 'make it' with such a heated topic.
Sometimes I wonder what goes through the minds of those that spend their time attacking sick people.
-------------------- Never walk through a cornfield backwards.
If he wants his head to remain in the sand fine but at least I made an attempt to get him a tad bit more into reality. Education on Lyme disease never hurt anyone even the mentally challenged.
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lymewreck36
Frequent Contributor (1K+ posts)
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posted
My reply sent to Jason at "Happyscrappy."
Below is the research you should have done before you printed the uniformed piece on lyme disease that participates in maiming thousands. The day will come when the Infectious Disease Society of America will be exposed for their government ties, their political needs to squash the subject of chronic lyme, and the harm that they inflicted on children and adults in the U.S. population and abroad. What will you have to hide behind then? Better to print a retraction or something discussing what has been brought to light since your first comments.
One thing I learned when doing my Master's Degree was critical thinking skills. That afforded me the ability to discern where truth falls. You see, when there are thousands of dissenting voices, one would have to ask how that would be possible if there weren't some degree of validity. How could such a huge grass roots movement come to be? The question begs to be answered. Then, the investigative process would begin, including looking closely at the reasons for the dissenting voices. This is the part of the process you left out.
Aren't you supposed to be an investigative reporter?
Do you really trust all "institutions" to the degree that you will not hold them to the critical process? Such trust smacks of VERY youthful naivete. I would think that a newspaper reporter would need to question a bit more!
It has happened countless times in medical history that a few enlightened physicians have been persecuted by the mainstream.
Read below for enlightenment.
Mary victim of lyme politics three daughters victims of lyme politics husband victim of lyme politics family of five with chronic lyme
"Semmelweis, ... was the first to discover that when doctors washed their hands before delivering babies, the mothers didn't die of "childbirth fever." At the time, 12 out of every 100 Hungarian women who gave birth died of this disease, which we now realize was caused by the doctors' own unhygienic practices. A doctor would go straight from an autopsy, where he was cutting up a corpse riddled with disease, to the bedside of a woman in labor. With the same hands that had recently been covered with putrid bodily fluids, he would probe around or inside the woman's body in the course of delivering her baby. Naturally, the incidence of infection was high. There were maternity hospitals in Budapest ...where the mortality rate from childbirth fever approached 100 percent - which is why women had their babies at home, if they possibly could.
Semmelweis discovered a simple procedure which put an end to childbirth fever in his patients. So what was the reaction of the medical community? Ridicule. Persecution. The attacks against Semmelweis were so severe that, overcome with depression, he took his own life.
Lister and the Discovery of Antiseptic Medicine
Meanwhile, a man you probably have heard of, Joseph Lister (in whose honor "Listerine" is named), was developing his own theory of "anti-sepsis." The very year Semmelweis died, Lister began performing the first germ-free operations. At the time even the smallest surgical procedure carried a 50 percent risk of death - not due to the surgery itself, but to the seemingly inevitable infections that would follow (again, transmitted by unsterile instruments and unwashed doctors).
The results of Lister's innovations were stunning. Patients who were expected to die, didn't. And again, persecution was his immediate reward. You'd never know this from reading the World Book Encyclopedia entry, which only mentions Lister's contributions and his eventual honors, received decades after his initial discoveries. But Lister's discovery, and his theories that germs caused wounds to get infected, earned him immediate, scathing, constant denouncements from the day's top medical authorities. If you read a biography of Lister, you'll probably be awed, as I was, by his remarkable perseverance and self-sacrifice as he continued striving, year after year, in the face of incredible discouragements.
Eventually Lister did prove to everybody's satisfaction that he and Semmelweis were right - but only after tens of thousands had died needlessly as a direct result of their doctors' refusal to examine the evidence for themselves.
Why...did those doctors not listen to poor Semmelweis?" ...Because they didn't want to admit they had been responsible, even unwittingly, for harming their patients. One doctor did believe Semmelweis. He had delivered his daughter' baby with unwashed hands, and she had died of childbirth fever. Stricken with remorse, he killed himself. Meanwhile, his thicker-skinned colleagues merely continued killing their patients.
Doctors Can Be Wrong
It is important for you to understand this, ....Doctors are not always right. In fact, they have often been wrong. But they are trained to be certain that they are always right. This makes it very hard for them to change their minds about anything."
2. Then there is the story of Drs. Robin Warren and Barry Marshall who showed the bacterium Helicobacter pylori plays a key role in the development of both stomach and intestinal ulcers. Marshall suffered a lot of problems getting the medical establishment to believe him, and it took at least 20 years, during which time he suffered persecution by the medical community. Warren and Marshall eventually won the Nobel prize for their contributions to medicine.
3. Also the following critique of Medicine's 10 Greatest Discoveries by Meyer Friedman (Author), Gerald W. Friedland (Author)
"I read with extraordinary excitement Medicines 10 Greatest Discoveries by best-selling author Dr. Meyer Friedman and his co-author Dr. Gerald Friedland. They brought to life the intriguing stories of scientists who made the worlds most significant contributions to medicine. Crawford Long, for example, was severely bruised after a party in which he and the other guests were intoxicated by inhaling ether. Yet he felt no pain. This realization led him to try successfully using ether as an anesthesia during surgery. Before then surgery was performed with no pain killers. Torture! The authors spared no detail explaining the barriers each had to overcome to bring the field of medicine closer to where it is today. Persecution and even death at the hands of religious leaders. Shunning by medical colleagues. Withholding of research opportunities. In some cases Medicines 10 Greatest Discoveries gave credit to scientists long forgotten. For instance Ross Harrison, inventor of tissue culture, attended both Johns Hopkins and Yale universities. Neither school had commemorated him nor knew of his connection to tissue culture until the authors pointed out this fact to their presidents."
4. Also consider the publication at the following link. There you will find Persecution of Innovative Therapies. - Politics in Healing: The Suppression and Manipulation of American Medicine - Review - book review http://findarticles.com/p/articles/mi_m0ISW/is_2001_June/ai_75178719
5. Additionally, see a sneak peek at Science, Money, and Politics: Political Triumph and Ethical Erosion. By Daniel S. Greenberg. Published 2001 by University of Chicago Press.
Excerpt: "Dan Greenberg began covering science in 1961 as the first "News and Comment" editor of Science, published by the American Association for the Advancement of Science. From 1971 through 1997 he wrote and published his own fortnightly Science and Government Report. He has written a marvelous book, jam-packed with detailed analyses of federal science agencies crying all the way to the bank. His scope is broad and includes the two agencies that support academic research--the National Science Foundation (NSF) and the NIH. Major themes include the following: Anxiety about funding crises for the support of scientific research are out of whack with the reality of sustained budget increases over time; the rhetoric of crisis enlivens the scientific community's misleading presentation of its case to Congress; more funds are never enough; and the fear of a fickle public drives continuing attention to "public understanding of science." Although Greenberg pays more attention to the NSF than to the NIH, his chapter on "The Ethical Erosion of American Science" focuses exclusively on medical science. He deplores the penetration of pharmaceutical industry money into academic medical research; examines controversies at both the Journal of the American Medical Association and the New England Journal of Medicine; reviews recent turmoil within the world of institutional review boards (IRBs), which were instituted to protect human subjects of research; and concludes with an account of the death of Jesse Gelsinger, an eighteen-year-old enrolled in a gene therapy clinical trial at the University of Pennsylvania. His judgment? "If their ethical senses were outraged by these events, the major institutions of science successfully concealed their distress from public view. Comfortable within the scientific ghetto, deft at raising public expectations and thereby stimulating generous support, the politicians of science are not comfortable with the seamy underside of their glittering enterprise. But they are not moved to do anything effective about it."
Let's turn now to the story of the AIDS epidemic and the role of patient activists.
6. See the following source for the below discussion and excerpt: Against the Odds: The Story of AIDS Drug Development, Politics And Profits by Peter Arno and Karyn L. Feiden.
Reviews: Editorial Reviews
From Publishers Weekly: Freelance writer Feiden and health analyst Arno illuminate the profound effect that the AIDS patient community has had on the process of pharmaceutical testing, treatment and approval. Ten years into the epidemic, patient-activists have become increasingly involved, aware and influential in their interactions with pharmaceutical manufacturers, federal regulatory agencies and international underground trafficking. The book details how the travails of AIDS therapies have caused the emergence of parallel-track testing and community-based clinical trials, redefined placebo standards and private-use pharmaceutical importation, and recast the Orphan Drug Act and medical journal publication embargos. Extortionate pharmaceutical pricing and the absence of quality care for the disenfranchised are only a few of the book's sad revelations. This is an incisive view of how health activism has become an invaluable tool in dislodging the bureaucratic U.S. health-care system. Most alarming is the assessment that the tragedy of the stalled AIDS response could be easily replicated by a federal health-care system as yet ill-equipped to respond to a national emergency. Copyright 1992 Reed Business Information, Inc.
From Library Journal This is a fascinating account of how government and drug company bureaucracies have held up the development of such life-saving and life-prolonging AIDS drugs as AZT, ddI, bactrine, pentamidine, ganciclovir, and compound Q. At the same time knowledgeable activist and patient communities, frustrated and impatient, work heroically to change the policy and procedures of drug testing, pricing, and availability, thereby inspiring a new wave of health activism. Like Bruce Nussbaum's Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS ( LJ 12/90), this scathing indictment of our political and medical establishment points up an unforgivable lack of leadership. Strongly recommended for all collections. - James E. Van Buskirk, San Francisco P.L. Copyright 1992 Reed Business Information, Inc.
7. See also, And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts and William Greider
Book review excerpts:
From School Library Journal YA Investigative journalist Shilts em ploys a case study approach to expose the alarms, disregard, and misinformation about AIDS that has been promoted by the government, gay and straight organizations, news agencies, and medical researchers. He indicts the political agendas of government officials, ego- driven scientists, and profit-conscious blood bank executives, all of whom impeded early AIDS research. In addition, he gives a fascinating account of the detective work needed in discovering new diseases. Although focusing his re ports on San Francisco and New York's gay communities and research centers in Atlanta and the Washington, D.C. area, Shilts dramatically explores the international problem of AIDS. Students will use the index for assigned papers, but it is the volume of information and the vignettes about real individuals that make compelling cover-to-cover reading. Alice Conlon, University of Houston Copyright 1988 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.
From Library Journal In one of the most important books of the year, Shilts, who has been covering the AIDS crisis since 1981, sets a gripping narrative of human tragedy against a background of political and scientific controversy. His implication: the AIDS epidemic in the United States might have been averted had it not been for resistance from the government, scientists, the media, and the gay community. Shilts has the ability to draw the reader hypnotically into the personal lives of his characters. That, and his monumental investigative effort, would have made this a best-selling novel if the contents weren't so horribly true. Highly recommended. Judith Eannarino, George Washington Univ. Lib., Washington, D.C. Copyright 1987 Reed Business Information, Inc. --This text refers to an out of print or unavailable edition of this title.
Journal of Health Politics, Policy and Law 26.2 (2001) 195-215
"In April 2000 the Institute of Medicine (IOM) and the Agency for Healthcare Research and Quality (AHRQ) jointly hosted a one-day workshop to explore an intriguing and important intersection of medicine and law: the courtroom presentation of science-based medical evidence and expertise. This workshop was inspired by a concern that legal uses and interpretations of science-based medical evidence, particularly population studies and the findings of controlled clinical trials, may diverge substantially from the uses and interpretation of that evidence by the medical and health care researchers who produce it and of the practitioners and health plans that use it in making clinical decisions and policies. Recognizing that a preliminary discussion among professions was needed even to describe the nature of their differences, the IOM and AHRQ, at the instigation of John M. Eisenberg, director of AHRQ, convened about twenty clinicians, epidemiologists, health services researchers, health plan executives, practicing and academic lawyers, jurists, and social scientists in the field of legal medicine ..."
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
Surely, with such examples from numerous cases of misinformation, distortion, lies, and ethical violations, one could not POSSIBLY trust all government agencies and medical institutions at face value!
My own investigation into the truth began with a very simple realization. I was very sick. Bed ridden. When given antibiotics, my bells palsy went away and the neurological and arthritic symptoms improved. But then I was denied antibiotics by the medical "industry", and I completely relapsed.
My body was the "in vivo" study. I sought a lyme literate medical professional, who continued my antibiotics, in different combinations and strengths. I improved further this time. It continues to be the case that if I am denied antibiotics, I regress quickly, four years later.
So, in the beginning, I had to ask....what is going on? Why the barrier to getting treatment. The truth of chronic lyme was indisputable. I just needed to find out why I was denied treatment.
Enlightenment followed.
Jason, if you so wished, I could send you a lengthy article I have been working on regarding the politics of lyme disease, explanations for the top research scientists blocking information on chronic lyme disease, including a data base of peer reviewed, annotated medical articles establishing chronic lyme disease.
I you wish to become enlightened, and print a newer version of the politics of lyme in the Post, let me know, and we can begin a friendly exchange of questions and answers. It's up to you and what posterity will think of such articles as "There's No Neutral Ground in War Of Information About Lyme Disease." You can choose to be on the cutting edge. You can choose to be part of the fight for justice.
Mary
There's No Neutral Ground in War Of Information About Lyme Disease
-------------------------------------------------------------------------------- See what's free at AOL.com.
Posts: 1032 | From North Carolina | Registered: Aug 2003
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Vanilla
Unregistered
posted
It seems I am not the only one trying to educate the loon.
He has more comments over there at happlyslappyyappy then before and many of them are very educational. There is hope.
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lymewreck36
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Member # 4395
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My above posted lengthy reply to Jason was for his personal benefit. I didn't submit it for publication because it is simply too long.
Is it o.k. to leave it here, or should I remove it?
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
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Hey Vanilla, I'll have to look into your request later this evening.
Mary
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