Volume: 1 Table of Contents: WASHINGTON POST: Letter: LD at Camp David ABSTRACT: (N Eng J Med) Prevention of Lyme Disease After Tick Bites A Cost-Effectiveness Analysis NEW YORK TIMES: More Tickborne Disease Found in State [CT] COMMENTARY: New Jersey's Lyme Disease Bill, by Marc Gabriel BIBLIOGRAPHY: Listing of several interesting publications Newsletter: ***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 1 - 1/27/93 I. Introduction II. News from the wires III. Questions 'n' Answers IV. Op-Ed Section V. Partial Bibliography for Further Reading VI. Jargon Index VII. How to Subscribe and Contribute to LymeNet I. ***** INTRODUCTION ***** This being the first edition of the LymeNet Newsletter, I thought I should explain why I created it in the first place. I did it because I'm tired of seeing people suffer the consequences of ignorance. Most chronic LD patients are suffering because their disease was not recognized in time. Sometimes the patient is lucky and a simple course of oral antibiotics takes care of the problem. Sometimes the consequences of ignorance are tragic. Three weeks ago, another patient died of acute Lyme infection in Monmouth county, NJ. She was a 19 year-old college student. Now a battle is brewing between her doctors and the CDC over reporting her death as LD related. Apparently, CDC officials refuse to believe LD can kill. This newsletter will provide you with information to prevent chronic illness. In addition, it will provide those who are already infected with information on the latest treatment protocols and rehab techniques. Unfortunately, political issues keep cropping up in LD affairs, and therefore this newsletter will provide you with current political news and perspectives. I will try to provide information for both doctors, scientists *and* the lay reader. Some of the sections may seem trivial to you, others may be too technical. Please understand that this newsletter is for everyone, so you might not be interested in all the items. My primary sources of information will be Lehigh University's media research tools, and the folks at the Lyme Disease Network of New Jersey. Carol and Bill Stolow, founders of the LD Net of NJ, are working hard to extend their network to all 50 states. We will be exchanging information for the benefit of both our groups. *************************** However, YOU will be an integral part of this newsletter, too. It is designed to answer your questions. Therefore, you have to ASK questions. Questions will be circulated to the subscribers, and responses will be compiled in the next newsletter. Please do not be afraid of asking "stupid" questions. If your question really is trivial, I will be happy to answer it for you via personal e-mail. This is a moderated group, so messages you send to [email protected] will *not* automatically be redistributed. *************************** Feel free to distribute this newsletter on your local systems. You may do so as long as you don't modify its contents. Now -- On with the newsletter! This issue's news "clippets" feature 2 New York Times pieces and one medical journal abstract. The clippets highlight how extensive the tick problem is. As you will see, even President Clinton is not immune. The second letter highlights the explosive growth of tick populations. The Connecticut Agriculture Experiment Station reports that between 1991 and 1992, the deer tick population in that state *doubled*. If you can find information about the tick populations in you state, mail it in. Finally, I have included the abstract that no one knew about. In August, a New England Journal of Medicine (NEJM) published a study that concluded that preventative antibiotic treatment of people bitten by ticks in endemic areas *is* a good idea. However, this study never made it to the press wires. I verified this on the Nexis system. Interestingly enough, 4 months later the NEJM publishes a study that contradicts the first study. This second study was all over the AP wires. It made all the major papers, as well as a feature on Lifetime medical television. Headlines read "Study concludes Lyme risk low." Why? Both papers were published in the same journal. Both were peer-reviewed. Both used similar techniques. Why did one get coverage and not the other? I won't answer that question. You make up your own conclusion. I bet you didn't know that. Now you know why you need this newsletter. -Marc. II. ***** NEWS FROM THE WIRES ****** SOURCE: The Washington Post January 6, 1993, Wednesday, Final Edition SECTION: EDITORIAL; PAGE A16; LETTERS TO THE EDITOR HEADLINE: Small Danger at Camp David A Dec. 17 news story quoted Eugene D. Shapiro of Yale University as saying that routine Lyme disease treatment should be discouraged. Former President Reagan must have believed that Lyme disease was not a threat when he told President-elect Clinton to make ample use of Camp David. But things have changed dramatically at Camp David in four years, and Lyme tick-infested deer now hang out on the course where Gov. Clinton will play golf. The deer could be reduced by Secret Service sharpshooters, and the venison used in Irish stew to feed the hungry in the D.C. area. Or prime cuts could be kept for preparation of Korean "Bul Go Gi" hors d'oeuvres. I obtained the recipe when on military duty in Korea. Famous cover girl Christie Brinkley employs African Guinea hens to eat the ticks in her back yard after they have been dropped there by deer. Maybe this would work at Camp David as well. EDWIN R. RILEY Williamsburg *****=***** TITL: Prevention of Lyme disease after tick bites. A cost-effectiveness analysis. AUTH: Magid D; Schwartz B; Craft J; Schwartz JS ORGA: Emergency Medical Services, Denver General Hospital. CITE: N Engl J Med 1992 Aug 20; 327 (8): 534-41 BACKGROUND. In areas of endemic disease, the probability of Lyme disease after a tick bite ranges from about 0.012 to 0.05. Early treatment with oral antibiotics prevents most complications of Lyme disease, but antibiotics are generally not prescribed until rash or other symptoms develop. METHODS. We used decision analysis to evaluate the outcomes, costs, and cost effectiveness of three alternative strategies to treat patients bitten by ixodes ticks in areas of endemic Lyme disease: empirically treat all patients with two weeks of doxycycline, treat only patients in whom erythema migrans develops, and treat only patients with erythema migrans or a positive serologic test for Lyme disease one month after exposure. RESULTS. Empirical treatment is the least expensive strategy and results in the fewest cases of Lyme disease and the fewest complications when the probability of Borrelia burgdorferi infection after a tick bite is 0.036 or higher. For probabilities of infection below 0.036, empirical therapy prevents most major complications, sequelae, and adverse events, but it incurs additional minor complications, especially as the probability of infection falls below 0.01. CONCLUSIONS. Empirical treatment of patients with tick bites is indicated when the probability of B. burgdorferi infection after a bite is 0.036 or higher, and this treatment may be preferred when the probability of infection ranges from 0.01 to 0.035. When the probability of infection after a tick bite is less than 0.01, empirical therapy is not warranted. *****=***** SOURCE: The New York Times September 13, 1992, Sunday, Late Edition - Final SECTION: Section 13CN; Page 13; Column 1; Connecticut Weekly Desk HEADLINE: More Tickborne Disease Found in State TWENTY years ago tickborne disease was almost unheard of in Connecticut. But this summer the state has the highest rate of Lyme disease in the nation, with more than 1,000 state residents becoming infected each year. Other diseases caused by ticks have also taken hold: babesiosis, a malaria-like disease appeared in Connecticut in 1988 and is now firmly entrenched in the state's southeast corner; as many as five new cases of Rocky Mountain spotted fever are reported in the state each year, and ehrlichiosis, a disease spread by the brown dog tick that can infect people and dogs, is also a threat. Research on tickborne diseases is a vital part of the work done by the Connecticut Agricultural Experiment Station in New Haven, said Dr. Louis A. Magnarelli, the state entomologist and chief of the research center's entomology department. Population Grows Scientists have documented that the population and geographic range of the Ixodes dammini -- the tick that spreads Lyme disease and babesiosis -- have dramatically expanded in Connecticut, said Kirby Stafford 3d, a scientist at the station specializing in tick ecology and control. At test plots monitored by state scientists in Salem, Haddam and Lyme, there is evidence that the state's already large Ixodes dammini tick population more than doubled from 1990 to 1991, Mr. Stafford said. There was also an increase reported in the population of American dog ticks, which can spread Rocky Mountain spotted fever and possibly other diseases. Although Ixodes dammini ticks were once found only in coastal areas in eastern Connecticut, the ticks are now found in every county of the state, Dr. Magnarelli said. Farmers and long-time residents say it was a rare event to find a tick in Connecticut 30 or 40 years ago, Dr. Magnarelli said. "Now ticks are very abundant," he said. Is Lyme Disease a Measure? Since 1976, when Lyme disease was first identified in Lyme and Old Lyme, there has been a relatively rapid increase in the disease, Dr. Magnarelli said. "We are looking at all the tickborne diseases in the state and we're wondering if we are going to get the kind of increase in cases and geographic spread that we've seen with Lyme disease, " he said. Although Rocky Mountain spotted fever is a significant health problem in North Carolina and Virginia, Connecticut seems to be on the far northern range of the area presently affected by the disease, Dr. Magnarelli said. Very few of the state's American dog ticks are infected with the richoseal agent pathogen, a bacterium with virus-like traits, which causes Rocky Mountain spotted fever. But every summer there are at least two or three new cases of the disease in the state and scientists cannot preclude the possibility that the disease could become a more significant public health problem in Connecticut, Dr. Magnarelli said. Only one case of ehrlichiosis, which affected a dog in Milford, has been reported in the state. Dual Infection A 44-year-old man from East Lyme was infected with both Rocky Mountain spotted fever and babesiosis this summer. After suffering dangerously high fevers, anemia and weakness, and displaying distinct brown speckles on the arms and legs, which are characteristic of Rocky Mountain spotted fever, the patient was treated with antibiotics and drugs usually used for the treatment of malaria. The first documented case of babesiosis in Connecticut was reported in Stonington in 1988. The next year, eight people were found to the disease in Connecticut. Seven of the patients were residents of Stonington or Old Lyme. But it was reported that a man from central Connecticut acquired the disease through a blood transfusion. As of last month, there were five cases of babesiosis reported this year. Elderly people, people without a spleen and those have H.I.V., the virus that causes AIDS, or people with otherwise compromised or impaired immune systems are most at risk for babesiosis, according to Dr. Matthew Cartter, chief of the epidemiology division of the State Department of Health Services. The illness is generally mild and its symptoms -- fever, chills, headache, weakness and anemia -- may go unnoticed by healthy children or adults. The disease is believed to have contributed to the death of at least two elderly residents of Stonington. A 1989 study in southeastern Connecticut found that as many as 9.5 percent of people who have tested positive for Lyme disease also test positive for babesiosis, Dr. Cartter said. A single bite from an Ixodes dammini tick can spread both Lyme disease and babesiosis and doctors have been advised to look for symptoms of babesiosis in people infected with Lyme disease, he said. Reforestation a Factor Early explorers and settlers reported that the forests of southern New England were heavily infested with ticks in the 17th and 18th centuries. But by the 1830's most of Connecticut's forests had been cleared for agriculture and there were few host animals for the local tick population to feed on. Consequently there were relatively small tick populations. But since the late 19th century, agriculture has been abandoned through most of Connecticut and these farmlands have reverted to forest. The most important factor determining tick population is the number of available host animals, Dr. Magnarelli said. Reforestation and the resulting restoration of habitat for host animals, like the white-tailed deer and white-footed mice, has caused an increase in tick populations. Warmer winters and more humid summers are also factors that favor larger tick populations, Mr. Stafford said. Tickborne diseases are not considered a major public health problem by the State Department of Health Services, Dr. Cartter said. "With Lyme disease we are seeing an intense transmission of the disease in the original area where we it was first found, and a very gradual spread of the disease to other areas of the state." Other tickborne diseases, like babesiosis and Rocky Mountain spotted fever, are not expected to become as significant a public health problem as Lyme disease, he added. III. ***** QUESTIONS 'N' ANSWERS ***** Subscribers are encouraged to submit questions to [email protected] Questions will be distributed to subscribers for their thoughts, and answers will be compiled in the next newsletter. Topics may include treatment protocols, the recovery process, LD in children, "strange" manifestations, requests for support group info, insurance concerns, etc. IV. ***** OP-ED SECTION ***** This section is open to all subscribers who would like to express an opinion. This issue's commentary was printed in 4 Union County, NJ newspapers. COMMENTARY - Marc Gabriel - January 3, 1993 In 10 short years, over half a million people in the U.S. have been infected with this serious disease. It may be easily treated if it's acknowledged early, but all too often it isn't recognized in time. It's debilitating effects include nervous system damage, severe musculoskeletal pain and occasionally cardiac abnormalities. And, if you live in the Northeastern U.S., there's a good chance it's waiting for you in your back yard. It's Lyme disease, and it's running neck and neck next with AIDS for the dubious title of fastest growing infectious disease in the country. Surprised? Probably, as this disease hardly gets the press attention it deserves given the staggering infection rate. Many people still think that LD is a rare shoreline disease even though infections are being chronicled across New Jersey, in almost every state, and in Europe and Asia. The disease is a bacteria carried primarily by deer, mice, rabbits, raccoons, dogs, horses, cattle and birds. It is transmitted to humans and other animals through the bite of a tick, which carries the disease between species. The primary tick vector is the deer tick, and it's as small as the tip of a pencil. The tick bite is painless, thanks to its secretion of a chemical that numbs the pain when it sinks its mouth in your skin. Most LD patients never see or feel the tick. They only know they've been infected when the symptoms crop up. If the disease is not promptly recognized, the cost of treatment can be staggering. A recent study found that the cost of LD to society is comparable to the cost of AIDS (over $1 billion annually). And the insurance companies are running scared. Insurers are not interested in dealing with another expensive epidemic. In their efforts to keep LD expenses down, they have enlisted the help of some controversial doctors from around the state who deny that LD is a major problem. These so called "experts" have declared that LD is cured with 28 days of antibiotics. What a coincidence: a panel appointed by insurers has concluded that LD does not require large expenditures. What they don't tell you is that their findings are disputed by LD specialists, patients, and new research. Last year several published papers refuted the 28 day theory by documenting that the bacteria can survive in the body after 28 days of antibiotics. Despite these findings, the insurers are sticking to their highly disputed theory. They routinely deny treatment to sick patients using the 28 day theory to justify their actions. My former insurer, the RCHP HMO, even went a step further. They spent long hours trying to convince me that I wasn't infected. They referred my to a psychologist, implying that I was making up the symptoms. They only agreed to treat me after I was properly diagnosed at the world renowned SUNY Stony Brook Lyme Disease Center on Long Island. After 6 weeks of treatment (they told me they were being generous), they refused to pay for my follow-up treatment with a Lyme specialist. They also refused to pay the Stony Brook bill. I was lucky. I have met patients that have shouldered thousands of dollars of bills, including prohibitively expensive intravenous therapy. Some have even contemplated filing for Chapter 11 bankruptcy. New Jersey state Senator John Bennett (R-Monmouth) caught on to this injustice and proposed a bill that would stop insurers from denying patients coverage. The bill, introduced last November, states that insurers must pay for LD treatment that is deemed necessary by the patient's doctor. The bill (S-1297) was well received and ready for a vote in December until the insurers tossed a bombshell into the arena. They had an amendment submitted that would create a "triangular committee" that would "review" a doctor's request to have treatment prolonged after 28 days. The committee would consist of the doctor, a representative from the Department of Health, and a representative from the insurance company. This is simply obscene. What doctor has the time to waste a full day in Trenton with a "triangular committee" for every chronic LD patient they treat? My doctor treats so many LD patients that he might have to relocate to an office adjacent to the Health Department in Trenton if this amendment were to pass. In addition, are we to expect that the representatives from the Health Department and the insurer will suddenly agree to prolonging treatment? New Jersey's state Health Department has one of the worse records in the country when it comes to LD. They would prefer to deny LD is a problem so they can continue to turn a blind eye to the epidemic. This makes them inclined to believe the 28 day theory. The physician is outnumbered 2 to 1. It is imperative that S-1297 be passed with no amendments. Please urge your state senator to support this bill. Otherwise, all of New Jersey's insurers will receive a signal that it is OK to arbitrarily deny expensive treatments to ill patients. Doctors would have their judgments constantly questioned by fat bureaucracies who are out to save a few bucks. That would threaten the integrity of New Jersey's health insurance system, set a dangerous national precedent, and turn costly illnesses like Lyme disease into financial death sentences. V. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING ***** The following list of references was complied by Carl Brenner and John O'Donnell. We will present a few every week for the next few issues of the LymeNet newsletter. Steere, AC. Lyme Disease. N Engl J Med 1989;321:586-596 (Rather dated by now, but a good intro to the mainstream paradigms in Lyme research). Reik, Louis. Lyme Disease and the Nervous System (book). 1991, Thieme Medical Publishers (also rather dated, but a treasure trove of references on neuroborreliosis). Logigian EL, Kaplan RF, Steere AC. Chronic neurological manifestations of Lyme Disease. N Engl J Med 1990;323:1438-44. Dattwyler RJ et al. Seronegative late Lyme borreliosis dissociation of Bb specific T and B cell responses following antibiotic therapy. N Eng J Med 1988;319:1441-1448 Garcia-Monco JC, et al. Bb in the central nervous system: experimental and clinical evidence for early invasion. J Infect Dis 1990;161:1187-1193 Halperin JJ, Volkman DJ, Wu P. Central nervous system abnormalities in Lyme borreliosis. Neurology 1991;41:1571-1582 On transplacental transmission: MacDonald A. The Southampton Hospital fetal borreliosis study. Rheum Dis Clin N Am 1989;15:663-667. Lavoie PE, et. al. Culture positive, seronegative transplacental Lyme borreliosis. Arthritis Rheum [Suppl] 1987;30:S50. On persistent infection after treatment: Preac-Mursic V, et.al. Survival of Bb in antibiotically treated patients with Lyme borreliosis. Infection 1989;17:355-359 Liegner K, et.al. Culture-confirmed treatment failure of cefotaxime and minocycline in a case of Lyme meningoencephalomyelitis in the United States. Abstr. #63, Fifth Int'l Conf on Lyme Borreliosis, Arlington, VA 1992 Masters, E, et.al. Spirochetemia two weeks post cessation of six months of continuous p.o. amoxicillin therapy. (Abstr. #65, same conference). VI. ***** JARGON INDEX ***** Bb - Borrelia burgdorferi - The scientific name for the LD bacterium. CDC - Centers for Disease Control - Federal agency in charge of tracking diseases and programs to prevent them. CNS - Central Nervous System. ELISA - Enzyme-linked Immunosorbent Assays - Common blood antibody test EM - Erythema Migrans - The name of the "bull's eye" rash that appears in ~60% of the patients early in the infection. IFA - Indirect Fluorescent Antibody - Common blood antibody test. LD - Common abbreviation for Lyme Disease. NIH - National Institutes of Health - Federal agency that conducts medical research and issues grants to research interests. PCR - Polymerase Chain Reaction - A new test that detects the DNA sequence of the microbe in question. Currently being tested for use in detecting LD, TB, and AIDS. Spirochete - The LD bacterium. It's given this name due to it's spiral shape. Western Blot - A more precise antibody test. VII. ***** HOW TO SUBSCRIBE AND CONTRIBUTE TO LYMENET ***** SUBSCRIPTIONS: Anyone with an Internet address may subscribe. Send a memo to [email protected] in the body, type: subscribe LymeNet-L <Your Real Name> DELETIONS: Send a memo to [email protected] in the body, type: unsubscribe LymeNet-L CONTRIBUTIONS: Send all contributions to [email protected] All are encouraged to submit questions, news items and commentaries, regardless of expertise. ----------------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Advisors: Carol-Jane Stolow, Director William S. Stolow, President The Lyme Disease Network of New Jersey (908-390-5027) THIS NEWSLETTER MAY BE REPRODUCED AND/OR POSTED ON BULLETIN BOARDS FREELY AS LONG AS IT IS NOT MODIFIED OR ABRIDGED IN ANY WAY. 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