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Besides being a superb mother and grandmother, Jeanne had devoted her life to helping others. Before becoming ill, she was Coordinator of Career Development at Polaris Career Center and previously had taught for many years at North Olmsted Schools. For several years she acted as an advocate for Lyme disease awareness and treatment and served as a vital member of the Greater Cleveland Lyme Disease Support Group Board of Trustees.
Her beautiful smile and curly red hair were outshone only by her brilliant reasoning and great solutions to problems. She was a gem and we will miss her forever.
BY JULIE PATEL STAFF REPORTER
If you spend time in forest preserves, parks or golf courses, be on the lookout for ticks carrying Lyme disease, health officials warned Tuesday.
The disease can be fatal if not diagnosed quickly enough, said Renee Thaler, the Midwest Task Force Coordinator of the Lyme Disease Foundation.
The foundation, along with state and Cook County officials, issued the warning because of a recent study by the county�s Department of Animal Control that found more than half the raccoons trapped and tested were infected with Lyme disease.
The East Coast swarms with infected ticks spreading Lyme disease but the problem is rapidly moving to the Midwest, experts say.
�If you take maps over the last 10 to 15 years, there�s an advancement of the disease westward,� said Mark Schmidt, deputy director of the Illinois Dept. of Public Health.
The ticks are transported by birds, deer, opossum, raccoons and nearly 130 other types of species. To prevent being bitten by ticks, Thaler recommended that people wear light-colored pants and long sleeves, use EPA-approved tick repellents properly, avoid sitting on the ground, walk in the center of forest trails to avoid brushing up against overhanging bushes and avoid high grasses.
We Mourn the Loss of a Friend
and Lyme Disease Awareness Advocate
Dr. Jeanne Kline, PhD passed away on Friday, Sept. 28 th. at University Hospitals in Cleveland. As well as suffering Lyme disease, Dr. Kline had been recently diagnosed with leukemia.
Chicago Sun-Times, - August 22, 2001
http://www.suntimes.com/output/news/cst-nws-lyme22.html
New Infectious Diseases
SOURCE: Yale University
NEW HAVEN, CT -- August 7, 2001 -- A method called prospective surveillance, which studies unexplained illness and death due to possibly infectious causes, allowed for earlier detection of emerging and reemerging infections in 73 percent of cases, Yale researchers conclude in a new study.
"Before a new disease is identified and named, it can make countless people ill and even lead to death," said study co-author Andre N. Sofair, M.D., assistant professor of medicine at Yale University School of Medicine. "Our approach provides clues to isolating an unknown disease, thereby allowing public health professionals to mobilize prevention efforts."
As demonstrated by the emergence of West Nile, Lyme disease and Acquired Immune Deficiency Syndrome (AIDS), the United States is not impervious to emerging epidemics, said Dr. Sofair. Outbreaks of Ebola hemorrhagic fever in Zaire and plague in India in the early 1990s are reminders that emerging and reemerging infectious diseases remain a threat to the global community.
Published in the August issue of the American Journal of Public Health, the study compared ongoing hospital-based surveillance (prospective surveillance) with retrospective surveillance, which reviewed hospital discharge data at seven New Haven County acute care hospitals in 1995 and 1996. The results revealed that 22 patients had either died or become seriously ill from what appeared to be an infectious disease.
Dr. Sofair said that although neither technique identified all cases of unexplained illness and death, prospective surveillance, a population-based surveillance network capable of identifying trends in symptoms of infectious disease, was 32 percent more sensitive than retrospective evaluation.
"Our results show that a systematic prospective study of the epidemiology of infectious disease syndromes is needed for earlier detection of and response to emerging infections," said Dr. Sofair.
Other authors on the study include Michael D. Kluger, Constance J. Heye, James I. Meek, Rajesh K. Sodhi and James L. Hadler, M.D.
A Hunterdon County physician has identified a new tick-borne illness that could be causing the long-term symptoms found in patients whose Lyme disease does not subside with standard treatment.
The research, published in the American Medical Association�s Archives of Neurology, focuses on four Lyme disease patients�two women and two men�who continued to experience such symptoms as headaches, memory loss, fatigue and joint pain despite treatment for Lyme.
The researcher, Eugene Eskow, detected signs of a bacteria called Bartonella henselae in the blood and spinal fluid of all four patients. Treatment aimed at killing this bacteria caused all the patients to improve dramatically.
�I feel this is at least one reason why people can get treated for Lyme and not get better. This is a completely different bacteria that standard Lyme antibiotics will not eradicate,� said Eskow, a family practitioner who has focused on tick-borne illnesses.
The field of Lyme disease has been contentious, with Lyme Disease advocates claiming that long-term symptoms of the disease exist, while some physicians, often backed by insurance companies, insist these patients have some other physical or emotional problem.
Doctors in the trenches, such as Eskow, have been frustrated by their inability to help people experiencing long-term Lyme symptoms.
Eskow knew that Bartonella infects the central nervous system and is found in the same species of wild mice that carries Lyme disease. A Netherlands study, meanwhile, found the disease in European deer ticks. So Eskow speculated that ticks could be transmitting the disease to humans, and he began testing the blood and spinal fluid of Lyme patients with long-term neurological symptoms.
The Bartonella bacteria is the same pathogen that causes Cat Scratch Fever, though none of the patients had contact with cats. Cat Scratch Fever is not normally serious in people with healthy immune symptoms, but Eskow said the bacteria could cause serious problems in patients who also are infected with Lyme.
One patient in his study was a previously healthy 14-year-old male who suffered headaches, fatigue, and joint pain in the knee, as well as an ability to concentrate. Previously an excellent student, he was unable to attend school.
Another was a 36-year-old man reporting similar symptoms, along with confusion and depression. The third patient was a 15-year-old female also unable to attend school because of depression, dizziness, insomnia and joint pain. The fourth was a 30-year-old woman who became ill a week after removing two ticks from her skin.
After all tested positive for Bartonella, Eskow treated them with antibiotics that target that bacteria. Joint pain continued for the 36-year-old male, but otherwise the patients all experienced an end to their symptoms. Since he completed his research, Eskow said he has discovered Bartonella in dozens more of his patients.
A co-author of his study is Eli Mordechai, director of research and development at Medical Diagnostic Services, a private laboratory. Mordechai tested 100 ticks found in northern New Jersey. Lyme disease was found in 20 percent; Bartonella was found in 20 percent. Eight percent of the ticks were infected with both pathogens.
Also found in the ticks were two other pathogens: 5 percent were infected with babesiosis and two percent with ehrlichiosis. These tick-borne illnesses can also complicate a Lyme patient�s recovery. State health officials said they will review Eskow�s study. Eskow said a tick found in the home of one patient with Bartonella was found to be infected with both Bartonella and Lyme. He said tick-borne Bartonella can cause visual disturbances, seizures, behavior changes, difficulty concentrating, lymph node enlargement and joint inflammation.
Mordechai and Eskow now want to test how easily ticks can transmit Bartonella to humans, and they suggested that physicians treating patients with tick-borne illnesses consider a wider range of testing.
One of the cases was a 70-year-old man in Maine. In June 2001, he showed signs of muscle weakness, somnolence, diarrhea, and anorexia. He also had a fever of 104.7F and a high white blood cell count.
�During the 2 weeks before illness, the patient�s main activities were lying on the ground repairing a boat hull and yard work,� researchers from the Centers for Disease Control and Prevention note in the September 7th issue of the Morbidity and Mortality Weekly Report.
Another case involved a 53-year-old woman, also from Maine, who began to show signs of encephalitis in September 2000. A third case arose in July 2000 in a 25-year-old man who worked as a logger and lived in rural Maine. A fourth case arose in a 66-year-old man from Vermont, who developed symptoms of encephalitis in September 1999.
According to Dr. Hinten with the CDC�s National Center for Infectious Diseases, Powassan virus infections are probably more widespread than the four cases indicate. �We don�t know the prevalence because no serosurveys have been done in the US, so there�s no way for us to know,� he said.
�The appearance of these four cases may indicate that the frequency or the incidence of the disease was higher than we knew, but it doesn�t mean that the number of infections is necessarily increasing,� Dr. Hinten told Reuters Health.
�We may have been having cases all along; it�s just that they haven�t been specifically diagnosed,� Dr. Hinten said. �The cases were caught because the four patients were tested for West Nile virus, and the results were negative,� he said.
According to the CDC, one of the four types of ticks that carries the virus is often found on woodchucks and skunks, which, they say, may be the primary vector of Powassan virus.
�Persons should keep areas adjacent to their home clear of brush, weeds, trash, and other elements that could support small and medium-sized mammals,� the CDC researchers note. They add that �Powassan encephalitis should be included in the differential diagnosis of all encephalitis cases occurring in the northern United States, especially the northeast.�
MMWR Morb Mortal Wkly Rep 2001;50:761-764.
Quote of the Month �Never, Never, Never Quit.� - - Winston Churchill
A small subset of patients infected with Borrelia burgdorferi (Bb) does not produce Bb specific antibody. Our research provides additional evidence of a genetic predisposition for seronegativity in some individuals with Lyme disease. Because human leukocyte antigen (HLA) class II, a heterodimeric glycoprotein, plays an essential role in the regulation of antibody production, we investigated the difference in HLA genes between seropositive and seronegative patients with Lyme disease (LD). Our results show that HLA-DR7 was associated with anti-Bb antibody production. Nine out of the 22 seropositive LD patients (40.9%) had HLA-DRB1*0701, *0703, *0704 (HLA-DR7); only 1 out of the 18 seronegative LD patients (5.6%) had HLA-DR7 (odds ratio (OR)=11.8, P=0.0126). HLA-DRB1*01021and HLA-DRB1*0101, *0104, *0105 (HLA-DR1) contributed negatively to anti-Bb antibody production. Seven of 18 seronegative LD patients had HLA-DR1, only 1of 22 seropositive LD patients had HLA-DR1 (38.9% vs. 4.5%, OR=13.4, P=0.0138).
These results suggest that the presence and or lack of production of specific antibody to Bb infection may be associated with particular HLA specificities of the Class II.
Antibody Response to IR6, a Conserved Immunodominant Region of the VlsE Lipoprotein, Wanes Rapidly after Antibiotic Treatment of Borrelia burgdorferi Infection in Experimental Animals and in Humans.
Invariable region (IR)(6), an immunodominant conserved region of VlsE, the antigenic variation protein of Borrelia burgdorferi, is currently used for the serologic diagnosis of Lyme disease in humans and canines.
A longitudinal assessment of anti-IR(6) antibody levels in B. burgdorferi-infected rhesus monkeys revealed that this level diminished sharply after antibiotic treatment (within 25 weeks). In contrast, antibody levels to P39 and to whole-cell antigen extracts of B. burgdorferi either remained unchanged or diminished less. A longitudinal analysis in dogs yielded similar results.
In humans, the anti-IR(6) antibody titer diminished by a factor of >/=4 in successfully treated patients and by a factor of <4 in treatment-resistant patients.
This result suggests that the quantification of anti-IR(6) antibody titer as a function of time should be investigated further as a test to assess response to Lyme disease therapy or to determine whether a B. burgdorferi infection has been eliminated.
Central and peripheral nervous system infection, immunity, and inflammation in the NHP model of Lyme borreliosis.
The relationship between chronic infection, antispirochetal immunity, and inflammation is unknown in Lyme neuroborreliosis. In the nonhuman primate model of Lyme neuroborreliosis, we measured spirochetal density in the nervous system and other tissues by polymerase chain reaction and correlated these values to anti-Borrelia burgdorferi antibody in the serum and cerebrospinal fluid, and to inflammation in tissues. Despite substantial presence of Borrelia burgdorferi, the causative agent of Lyme borreliosis, in the central nervous system, only minor inflammation was present there, though skeletal and cardiac muscle, which contained similar levels of spirochete, were highly inflamed. Anti-Borrelia burgdoferi antibody was present in the cerebrospinal fluid but was not selectively concentrated. All infected animals developed anti-Borrelia burgdorferi antibody in the serum, but increased amplitude of antibody was not predictive of higher levels of infection.
These data demonstrate that Lyme neuroborreliosis is a persistent infection, that spirochetal presence is a necessary but not sufficient condition for inflammation, and that antibody measured in serum may not predict the severity of infection.
NIAID Lyme Disease Advisory Panel Meeting Postponed
NIH Counsel has advised that there is no requirement to hold an open meeting where unpublished data or observations are to be discussed.
However, given the Lyme disease community's interest, we have decided to hold an open, rather than closed, meeting of the NIAID Lyme Disease Advisory Panel on November 19th, from 9:00am - 12:00noon, in room 1205 at 6700-B Rockledge Dr., Bethesda, Md. This will require adopting a
different format than previously planned and one that focuses on :
(a) the results of the published studies as reported in the NEJM article;
(b) pertinent information related to the performance of those studies, e.g., protocol design and events leading up to --and immediately following-- the interim analysis; and
(c) reactions from the Lyme disease community concerning the results obtained.
Since space will be limited, advanced registration to attend will be required. Admission will be on a "first come, first served" basis, and only those who have registered in advance will be admitted. Those wishing to attend should contact Ms. Dana Chambers (telephone, 301-496-7728; e-mail, [email protected]) to register and to obtain specific information on how to get to the location of the meeting. After the meeting, an executive summary of key issues discussed will be prepared, with input from the Lyme Disease Advisory Panel, and posted by the NIH on the Lyme Disease website.
(The Announcement of Postponement)
The events of September 11th have heightened the concerns of many on the safety of travel as well as the security of holding open meetings at government facilities. For these and other reasons, a majority of the NIAID Lyme Disease Advisory Panel has voted to postpone the meeting scheduled for November 19th. Thank you for your understanding and patience. We will get back to you with any additional information.
Phillip J. Baker, Ph.D., Program Officer,
Lyme Disease and Vector-Borne/Zoonotic Bacterial Infections Programs, Bacteriology and Mycology Branch
Division of Microbiology & Infectious Diseases
National Institute of Allergy & Infectious Diseases
National Institutes of Health
6700-B Rockledge Dr., MSC7630, Room 3114
Bethesda, MD 20892-7630
(Bethesda, MD 20817 for overnight mail)
Telephone: (301) 435-2855 (direct line), (301) 496-7728 (branch line)
FAX: (301) 402-2508 E-mail: [email protected]
Lyme & Other Tick-borne Diseases: A 21st Century View
Educational Objectives:
Identify criteria for diagnosis and treatment of Lyme disease through history, physical examination, and symptoms.
Increase awareness of testing methods for Lyme/tick-borne diseases; the role of testing in diagnosis and treatment
Raise awareness of the direction of research leading to an understanding of Borrelia burgdorferi.
Increase awareness of the prevalence of other tick-borne diseases such as Babesiosis and Erlichiosis
Who should attend
Target audience is physicians, nurses, social workers, psychologists. The general public is also welcome to attend.
Conference Agenda:
Saturday, November 10, 2001
7:30-8:00 a.m. Registration/Breakfast/Exhibits
8:00-8:05 a.m. Welcome
Patricia V. Smith, President, Lyme Disease Association
Brian A. Fallon, MD, Morning Session Facilitator
8:05-8:25 a.m. Real Time Field Surveillance of Vector-borne Pathogens with PCR, 3D Imaging, and GPS/GIS - Anthony Gutierrez, PhD
8:25-8:35 a.m. Brief Overview of Borrelia Burgdorferi in Human Tissue - Steven E. Schutzer, MD
8:35-9:10 a.m. Three Dimensional Tissue Culturing of Borrelia Burgdorferi - Joshua J. Zimmerberg, MD, PhD
9:10-9:40 a.m. The Role of IL10 and IL10 Homologues in Murine Lyme Carditis - Elizabeth S. Ravech�, PhD
9:40-9:55 a.m. Break/Exhibits
9:55-10:25 a.m. Update on Laboratory Testing for Lyme and Other Tick-borne Diseases - Nick S. Harris, PhD
10:25-11:00 a.m. Babesiosis, Ehrlichiosis, and Other Tick-borne Diseases - Richard Horowitz, MD
11:00-11:30 a.m. 21st Century Clinical Trials - Daniel J. Cameron, MD, MPH
11:30-11:45 p.m. Questions & Answers
11:45-12:45 p.m. Lunch
Steven E. Schutzer, MD, Afternoon Session Facilitator
12:45-1:15 p.m. New Presentations of Lyme Disease Including Dental Foci and
Possible Treatment Modalities for Lyme Disease - Christopher J. Hussar, DDS, DO
1:15-1:50 p.m. Neurological Manifestations of Lyme Disease - Richard S. Rhee, MD
1:50-2:20 p.m. Neuropsychiatric Lyme Disease Update - Brian A. Fallon, MD, MPH, Med
2:20-2:35 p.m. Questions & Answers
2:50-3:05 p.m. Break/Exhibit
3:05-4:05 p.m. Treatment Panel - Andrea Gaito, MD, FACR, Kenneth B. Liegner, MD, Ritchie C. Shoemaker, MD
4:05-5:00 p.m. 21st Century Approaches - Dennis E. Hruby, PhD, John McMichael, PhD
5:00 p.m. Thanks and conference closing remarks.
5:30-7:30 p.m. Reception to follow
The time it takes to diagnose and treat Lyme disease may be shortened with the availability of a new finger stick test that promises to deliver results in about 20 minutes in a doctor�s office, as opposed to waiting a week or more for results to come back from a laboratory.
An article on the new test appeared in yesterday�s Archives of Internal Medicine and was based on a study conducted by researchers at the State University of New York at Stony Brook. The study concluded that the new test was equally as sensitive and more specific than the enzyme-linked test commonly known as ELISA which is now used by most doctors for initial Lyme testing.
�I think it�s going to improve the care of Lyme disease patients by making the diagnosis quicker and getting people treated earlier,� said Raymond Dattwyler, a professor of medicine and director of the Lyme Disease Center at SUNY at Stony Brook who helped lead the study.
Delayed treatment is a major problem with Lyme, a tick-borne illness that can go undiagnosed for years because there is no definitive test that can tell patients whether or not they have the disease. It sometimes manifests itself through a classic �bulls-eye� rash near the bite, but some infected individuals have no rash and just report non-specific symptoms such as fever, headache and fatigue.
�But neither the finger stick test nor the conventional ELISA test can really determine whether someone has the actual disease.�
The new test, which is sold and marketed to physicians for $10 a kit by Wampole Laboratories, a division of Carter-Wallace of Cranbury, works in a similar fashion to a home pregnancy test. Two lines appearing on a cassette indicate a positive result. Just one line means the test was negative.
But neither the finger stick test nor the conventional ELISA test can really determine whether someone has the actual disease. When either test comes back positive, many doctors still recommend that patients undergo a more specific, second blood test, called Western blot, to help confirm the results. Lyme disease is usually treated with traditionally antibiotic therapy.
The Food and Drug Administration approved the finger stick test about two years ago for laboratory use, but it was not until this summer that it received clearance for use in physician offices. New Jersey is one of the nation�s leading states when it comes to Lyme, with more than 2,000 cases typically being reported to the CDC every year.
�I have used it for over a year and it is a very sensitive test, with no variation from one kit to the next,� said Eli Mordechai, director of research and development for Medical Diagnostic Laboratories in Mt. Laurel.
But even Mordechai admitted that a negative test result does not necessarily mean a patient does not have Lyme. �Lyme likes to stay in the tissues and it may not be present in the blood,� he said.
Concern is being raised that the new test may be misused by some doctors as the sole diagnostic tool for detecting Lyme. The Centers for Disease Control and Prevention says the diagnosis should be based primarily on clinical findings.
�You don�t diagnose Lyme with a blood test. Nothing is ever going to be as important as taking a proper history and doing a good physical examination and thinking carefully and objectively,� said Leonard H. Sigal, director of the Lyme Disease Center at the UMDNJ-Robert Wood Johnson Medical School in New Brunswick.
Patricia Smith of Wall Township, president of the Lyme Disease Association, also expressed skepticism about the new test, saying she has no reason to believe the finger stick will be any more accurate than conventional ELISA testing, which she noted is often wrong.
Pittsburgh Post-Gazette - Tuesday, August 07, 2001
http://www.post-gazette.com
By Virginia Linn, Post-Gazette Staff Writer
Here it was, the start of tick season in a state with one of the highest Lyme disease rates in the country, and it still took evaluations by a pediatrician, a hospital diagnostic specialist and four infectious disease experts before an 11-year-old girl with the telltale bulls-eye rash was diagnosed with Lyme disease.
Tammy Burleson-Berkoben and son Neil, who is 10, in the backyard of their Elizabeth Township home. She believes she contracted Lyme from a tick that bit her while she was hiking. (Martha Rial/Post-Gazette
That�s because Maddison Stimmler of Natrona Heights, despite having flu-like symptoms and pain, never tested positive for Lyme in a blood antibody test. Without that positive result, she didn�t meet the strict government criteria for her illness to be counted as Lyme.
But for the doctors involved, there was no doubt that the Highlands Middle School student had been infected by a tick, probably in her back yard in early May.
That�s the confounding characteristic about this disease, which is caused by the corkscrew-shaped bacteria Borrelia burgdorferi and was first linked to tick bites in Lyme, Conn., in the mid 1970s. There�s no perfect test, and the disease is just as difficult to diagnose now as it was then.
Maddison, who just turned 12, is lucky because Dr. Carlton Gartner, chief of diagnostic referral at Children�s Hospital, put her on a dose of the antibiotic doxycycline that has cleared up the condition. Tammy Burleson-Berkoben hasn�t been so lucky.
The 39-year-old mother of two believes she was bitten by an infected tick shortly after moving to Elizabeth Township from Florida in the early 1990s, when she spent a lot time hiking in the thick woods around her home.
Since then, a spectrum of symptoms has emerged�arthritis pain and weakness in her legs that made it difficult to walk, overwhelming fatigue and mental confusion to the point that on a recent day, she lost her way in own her home. Local doctors have told her she had fibromyalgia, chronic fatigue, maybe multiple sclerosis. They�ve sent her to psychiatrists, told her it�s all in her head.
Burleson-Berkoben�s symptoms are markedly different from Maddison�s. But a few months ago, she too was diagnosed as having Lyme disease, though with a different, chronic form. Now on leave from her job as a flight attendant, she is struggling to get well�a process that has required her to fight just as hard against doctors for treatment as she has against the disease.
How to treat chronic Lyme is the most contentious and controversial part of this infection, pitting patients against doctors who refuse to give them antibiotics for their symptoms. Lyme experts agree that antibiotics work for 90 percent of patients. But in a small group of patients, severe problems that mimic symptoms of many other diseases persist or return. It�s not clear what causes these problems or how best to treat them.
�I have to get my life back,� she said. �I can�t continue to live this way.� Burleson-Berkoben has started a Lyme disease support group in the South Hills. Another group has met at an Etna church since 1989.
Nationally, the disease has grown 25-fold since 1982, according to the Centers for Disease Control and Prevention. More than 90 percent of all cases occur in just nine states, including Pennsylvania.
So far, only a handful of cases have been reported each year in Allegheny County: 14 in 1996, seven in 1997, 21 in 1998, 15 in 1999 and 11 in 2000. As of mid-July this year, seven were recorded.
Ruth Ann Tobin, a leader of the Etna support group, calls those figures �absurd.� �I get hundreds of calls,� she said. She is among the Lyme sufferers who believe the disease is vastly under-diagnosed and under-treated.
Indeed, the Lyme Disease Foundation, the first and largest Lyme advocacy and scientific nonprofit organization, in Hartford, Conn., believes the count is 13 to 15 times higher than the roughly 16,000 cases reported each year to the CDC.
When the county Health Department started getting Lyme reports, the people had been infected in places like New England and the Poconos. But as in Maddison Stimmler�s case, people also are contracting the disease here.
�We�re just going to have to make more people aware of it if we see more cases,� said Gartner, the Children�s diagnostics specialist. �It�s bound to happen; we have the deer and the ticks.�
A long path to diagnosis
Sandi Stimmler, Maddison�s mother, was upset that it took a month to get a diagnosis for her daughter. The girl first developed red bite marks on her left leg in early May. They were not itchy, but they were painful, prompting the first visit to the pediatrician. The doctor told her they were spider bites and gave her a salve to put on the rash.
Within a few days, the rash turned into the bulls-eye and spread to about six inches in diameter. The pediatrician next thought it was a skin condition. Two days later, Sandi Stimmler had Maddison in the emergency room with a lot of pain and flu-like symptoms. Tests for a strep infection and Lyme both came back negative. When her daughter�s condition worsened, Stimmler marched into the pediatrician�s office and demanded a referral to Children�s.
�I didn�t know much about Lyme,� Stimmler said. �I put my trust in my PCP [primary care physician]. Not only is the general public unaware of Lyme disease, unfortunately, some of the doctors need to be aware.�
Another problem is that lab testing is not as rigorous as it should be, Gartner said. Results are often erroneous.
Burleson-Berkoben, in her long saga, has found the same problem with awareness. As she battled the pain and weakness over the years, she had a bulls-eye rash appear intermittently on her upper arm. When it showed up again this year, she got tested for Lyme with positive results. Her doctor at the time put her on a month�s dose of antibiotic, but refused to continue therapy beyond that, even though Burleson-Berkoben�s symptoms had not improved.
When told the therapy would stop, Burleson-Berkoben broke into tears in the doctor�s office. �I was in a lot of pain, and I started crying,� she said. �What is it you�re not telling me?� she said the doctor asked, implying her problems were emotional. �Is there a problem at work? Did you have a fight with your husband?�
She searched for another doctor to help her without success. This summer, she started long-term antibiotic treatment with a doctor in Hermitage, Mercer County, whom she refused to identify, and hopes she�ll finally get well.
Another Hermitage doctor also offers long-term treatment; they�re the only two in Western Pennsylvania who treat chronic Lyme. Patients fly in from around the country to see them. Neither would discuss his therapy, which highlights the big debate about chronic Lyme.
The latest research
A study published July 12 in the New England Journal of Medicine found that Lyme disease can be prevented in patients who receive a one-dose treatment of an antibiotic given soon after the bite by an infected tick.
That same issue published another study that debunked the use of aggressive treatment with both oral and intravenous antibiotics on people suffering from the long-term effects of Lyme. This study bolsters the views of Dr. Allen Steere, the renowned researcher with the New England Medical Center who identified Lyme. He has concluded that many of these folks with chronic Lyme no longer have the bacterium in their system�which might respond to antibiotic treatment�or never had the disease at all.
Even before the publication of this study, national guidelines were published limiting antibiotic treatment. Steere�s view has drawn the wrath of chronic Lyme patients who just want to get well, and they�ve sought out doctors who will give them that aggressive treatment.
But those doctors who don�t follow established protocol are beginning to come under fire from state medical boards�the most publicized involving a Long Island, N.Y., physician, Dr. Joseph Burrascano, last fall.
Although a spokeswoman for the Pennsylvania secretary of state�s office was unaware of any similar investigations here, the few doctors who treat chronic patients are operating underground as much as possible.
�I�m finding that the doctors who advocate long-term antibiotic treatment tend to have relatives who have Lyme or, in a few cases, have Lyme themselves,� said Ken Mott, head of a national Lyme advocacy group Ticked Off and Fed Up in Gettysburg, Pa. �They�re more sympathetic to it. They�re not inclined to treat it as some psychosomatic aftermath.�
The controversy hasn�t dissuaded Burleson-Berkoben from seeking that treatment. �I�m seeing results,� she said. �I feel like I�m getting better.�
And being sure that we reach out to others and treat everyone with respect is the best way I know of keeping our democracy alive and well. I trust we will.
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