Volume: 7 Table of Contents: I. LYMENET: New Web Page Helps LD Patients Express Opinions to Legislators II. ESSAY: Lyme Disease: AromaTick Miracle III. GENETICS: Genetic diversity of ospC in a local population of Borrelia burgdorferi sensu stricto. IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-gamma)-secreting cells in blood as patients with clinical Borrelia infection. V. ABOUT THE LYMENET NEWSLETTER Newsletter: *********************************************************************** * The National Lyme Disease Network * * http://www.LymeNet.org/ * * LymeNet Newsletter * *********************************************************************** Volume 7 / Number 05 / 21-MAY-1999 INDEX I. LYMENET: New Web Page Helps LD Patients Express Opinions to Legislators II. ESSAY: Lyme Disease: AromaTick Miracle III. GENETICS: Genetic diversity of ospC in a local population of Borrelia burgdorferi sensu stricto. IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-gamma)-secreting cells in blood as patients with clinical Borrelia infection. V. ABOUT THE LYMENET NEWSLETTER =====*===== I. LYMENET: New Web Page Helps LD Patients Express Opinions to Legislators ----------------------------------------------------------------- Sender: Bruce Fletcher <[email protected]> Date: May 10, 1999 A new web page service called Lyme Political Action Connecticut was launched today, geared at focussing the electorate on pro-patient Lyme Disease legislation. In it's first day of operation, it helped residents send dozens of e-mail messages to key Legislators about the pending Lyme Bill. The site was created by Darien resident Bruce Fletcher whose wife suffers from Lyme. Mr. Fletcher is not unschooled in the way of politics, as he has served as the Chairman of the town's Democratic Town Committee and on the Representative Town Meeting. "My goal in creating this page was to create a place that provides simple step-by-step instructions for people who want to express an opinion to our Legislators about the need for pro-patient Lyme Disease laws. Many people are not familiar with the political process, but with 30 seconds work this web site helps people to send a personalized note to the 20 top decision makers on the Lyme bill now pending in Hartford." The e-mailed messages are directed at the heads of the Public Health and Real Estate and Insurance Committees, as well as the House and Senate leadership. Phone and FAX numbers are also provided, and people have already started calling Hartford. "I realized as I called and e-mailed legislators that by myself I would never have the clout to get anything done," remarked Mr. Fletcher. "Now thousands of residents will be involved in pushing for meaningful legislation." According to official records, Lyme disease has affected more than 10,000 Connecticut residents over the past 5 years, but many experts believe this is vastly understated by a factor of 5-10 times. Lyme remains the 2nd fastest growing infectious disease in the US after AIDS, and Connecticut suffers from the highest infection rate. Treatment for advanced cases of the disease involves expensive IV antibiotic therapy, but insurance companies have set arbitrary limits on the number of weeks permitted. Many new studies and physician experiences demonstrate that months of treatment are often needed. The medication costs of $200 to $300 per day quickly sap a family's financial resources, and leave many patients without treatment. Lyme Bill #5694 currently sits in Hartford, but includes language that mandates a second opinion before an insurance company must provide coverage. The bill previously required only the opinion of patients' doctors, but the Insurance and Real Estate Committee changed the wording after intense insurance company lobbying. =====*===== II. ESSAY: Lyme Disease: AromaTick Miracle -------------------------------------------- Sender: Donna Woldin <[email protected]> Right in front of the World Trade Center, right in front of all the scurrying Wall Streeters, I broke down and cried. Lyme disease! Why me? Why now? I'd just come from a bookstore where I had read everything I could about this illness after having been diagnosed earlier that day. The myriad of symptoms detailed in the books finally explained what I had been going through for the previous five years. What I read scared me to my core. A moment later, I felt a wash of extraordinary peace and a charge of electricity course through me. I knew in that instant that I had finally gotten the message I had been avoiding all my life. I knew, truly knew, that this "dis-ease" was a gift from the universe and that I would become healthier as a result of this challenge. Prior to contracting Lyme disease, I had been an active woman living in New York City. I went everywhere on bicycle (I've even been known to bike in high heels to a party), windsurfed, studied all types of dance including Flamenco, and had worked as a restaurateur for most of my life. All this changed over the course of a few short years. I needed a cane as my joints and muscles were riddled with pain. I developed constant respiratory infections. My breathing capacity decreased to 30%. A heart murmur appeared. I lost control of my bladder (charming when you are talking to a client). Serious depression became a concern. I had no energy at all. More unusual, I had extremely violent images. I lost all short-term memory, a nightmare as I had recently returned to school. I ceased all aspects of my social life. Let's not even talk about the loss of my libido. I was convinced I was going to die shortly. Within five years I saw five different doctors . None was able to help me, until I was finally diagnosed by Dr. Stephen Bernstein, an internist who specialized in rheumatoid diseases. He listened: a very rare quality today. After our first consultation I asked him "What is wrong with me?" His response was that I either had a thyroid problem or Lyme disease. I knew immediately the latter was my challenge. I remembered the vacation to Fire Island when I was bitten by a deer tick. I had had my blood tested then: negative. I requested that doctor to give me antibiotics anyway. He refused. He told me not to worry. Five years later, I found myself worrying a lot. Today, after all those years of suffering, I am so healthy and feel so wonderful that I felt I should share my journey. With the help of many wonderful people, I was able to cure myself of all the horrific symptoms coursing through my body and spirit. Aromatherapy had already been part of my life for several years. I had a side business of creating customized aromatherapy blends for individual clients. Now, I was my most important client. When one is very ill, one becomes isolated from others. It's as though there is a thin veil separating you from real and vital life. You can see the world, feel it, hear it, but there is always something preventing you from embracing it. I spent nine months working solely on regaining my health. It was my full-time job. I imagined I was staying at a Swiss sanitarium in the Alps and began my work. By going deep into the illness, I came out the other side a more compassionate person toward other people-and myself. What did I do? Well, I did take antibiotics for four weeks after first preparing my body for the aggressive attack with several naturally based preparations. I eliminated coffee, alcohol, white bread, and sugar. I took herbs and vitamins, saw a kinesiologist, massage therapist, nutritionist, and a psychologist. I began to swim every day, the only exercise I could do without aggravating my arthritic joints. This was followed by a steam bath where I inhaled my aromatherapy blends. Before getting dressed, I massaged blends into my body and then went home for a nap. I took an aromatherapy bath at least once a day. I then massaged the same oils on damp skin, put on my sweats, crawled into bed and was asleep by 5:00 P.M. every day. I needed analgesics and anti-inflammatory properties for my arthritic joints, antiviral properties to fight the infection coursing through my body, mental stimulants for my loss of short-term memory, mucolytic oils to calm and heal my respiratory system, and anti-depressants for my deep depression caused by the attack to my nervous system. I continued to see my physician weekly, who having been trained allopathically, would recommend various prescriptions for my symptoms. When he prescribed antidepressants, I (instead) created blends that made me happy. When he recommended anti-inflammatory medication I (instead) massaged myself with my blended oils. When he prescribed inhalants, I (instead) inhaled the essences from my little bottles throughout the day. Dr. Bernstein seemed impressed by the positive impact aromatherapy was having on me. It's said that Lyme disease never leaves your body and that one can get recurring problems. I've met many people with Lyme disease, some who have been taking antibiotics for years and others so debilitated they are in wheelchairs. While I honor that we are all uniquely different, I am convinced that we have extraordinary power within us to heal ourselves. By tending to and listening to our inner voice, we become in tune with the nature in us all. Above all, listen to your body. Trust what it has to say to you and know that you don't have to be a victim to "dis-ease." Reprinted with permission from THE AROMATIC THYMES. This is an edited version of the article printed in Early Fall '98. =====*===== III. GENETICS: Genetic diversity of ospC in a local population of Borrelia burgdorferi sensu stricto. ------------------------------------------------------------------ AUTHORS: Wang IN, Dykhuizen DE, Qiu W, Dunn JJ, Bosler EM, Luft BJ ORGANIZATION: Department of Ecology and Evolution, State University of New York, Stony Brook, New York 11794-5245, USA. REFERENCE: Genetics 1999 Jan;151(1):15-30 The outer surface protein, OspC, is highly variable in Borrelia burgdorferi sensu stricto, the agent of Lyme disease. We have shown that even within a single population OspC is highly variable. The variation of ospA and ospC in the 40 infected deer ticks collected from a single site on Shelter Island, New York, was determined using PCR-SSCP. There is very strong apparent linkage disequilibrium between ospA and ospC alleles, even though they are located on separate plasmids. Thirteen discernible SSCP mobility classes for ospC were identified and the DNA sequence for each was determined. These sequences, combined with 40 GenBank sequences, allow us to define 19 major ospC groups. Sequences within a major ospC group are, on average, <1% different from each other, while sequences between major ospC groups are, on average, approximately 20% different. The tick sample contains 11 major ospC groups, GenBank contains 16 groups, with 8 groups found in both samples. Thus, the ospC variation within a local population is almost as great as the variation of a similar-sized sample of the entire species. The Ewens-Watterson-Slatkin test of allele frequency showed significant deviation from the neutral expectation, indicating balancing selection for these major ospC groups. The variation represented by major ospC groups needs to be considered if the OspC protein is to be used as a serodiagnostic antigen or a vaccine. =====*===== IV. CLIN EXP IMMUNOL: Asymptomatic Borrelia-seropositive individuals display the same incidence of Borrelia-specific interferon-gamma (IFN-gamma)-secreting cells in blood as patients with clinical Borrelia infection. ---------------------------------------------------------------------- AUTHORS: Ekerfelt C, Forsberg P, Svenvik M, Roberg M, Bergstrom S Ernerudh J ORGANIZATION: Department of Neuroscience and Locomotion, Faculty of Health Sciences, University Hospital, Linkoping, Sweden. REFERENCE: Clin Exp Immunol 1999 Mar;115(3):498-502 ABSTRACT: Borrelia Lyme disease is a complex disorder that sometimes becomes chronic. There are contradictory reports of experimental Borrelia infections regarding which type of T cell cytokine responses, i.e. Th1 or Th2, are needed to eradicate the Borrelia spirochaetes. In human borreliosis a predominance of Borrelia-specific Th1-like responses has been shown. In this study, spontaneous, as well as Borrelia-specific, secretion of IFN-gamma (Th1) and IL-4 (Th2) in Borrelia-seropositive healthy asymptomatic individuals (n = 17) was investigated in peripheral blood by a sensitive ELISPOT assay, and compared with previously reported responses in patients with clinical Borrelia infection (n = 25). The seropositive asymptomatic individuals displayed the same predominance of Borrelia-specific IFN-gamma- secreting cells as the patients with clinical Borrelia infection. Interestingly, the proportion of spontaneously IL-4-secreting cells, reflecting the unstimulated in vivo secretion, was lower in the seropositive asymptomatic individuals compared with patients with chronic Borrelia infections (n = 13, P = 0.02), whereas no such difference was found compared with subacute Borrelia infections (n = 12). These findings indicate that IFN-gamma secretion alone is not sufficient to eliminate Borrelia spirochaetes in humans, although IFN-gamma may still have a beneficial role in borreliosis acting in concert with other mechanisms. =====*===== V. ABOUT THE LYMENET NEWSLETTER ----------------------------------------------------------------------- For the most current information on LymeNet subscriptions, contributions, and other sources of information on Lyme disease, please refer to: http://newsletter.lymenet.org ----------------------------------------------------------------------- To unsubscribe from the LymeNet newsletter, send a message to: [email protected] On the first line of the message, write: unsub lymenet-l ----------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX (for contributions ONLY): 908-789-0028 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director <[email protected]> William S. Stolow, President <[email protected]> The Lyme Disease Network of New Jersey ----------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITORS. ----------------------------------------------------------------------- THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY. ----------------------------------------------------------------------- SEND ALL BUG REPORTS TO [email protected] ----------------------------------------------------------------------- |
Home |
Flash Discussion |
Support Groups |
On-Line Library © 1994-1999
The Lyme Disease Network of New Jersey, Inc. |