Volume: 3 Table of Contents: I. LYMENET: Finding Treatment II. Q&A: Neurologic Lyme Disease III. LYMENET: Bad Faith Claim Against Met Life VI. MMWR: Lyme Disease -- United States, 1994 V. About The LymeNet Newsletter Newsletter: *********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * *********************************************************************** IDX# Volume 3 - Number 10 - 7/03/95 IDX# INDEX IDX# IDX# I. LYMENET: Finding Treatment IDX# II. Q&A: Neurologic Lyme Disease IDX# III. LYMENET: Bad Faith Claim Against Met Life IDX# VI. MMWR: Lyme Disease -- United States, 1994 IDX# V. About The LymeNet Newsletter IDX# I. LYMENET: Finding Treatment -------------------------------------------- Sender: Gary M. Heir, DMD <[email protected]> I am very concerned over circumstances regarding the ability of patients to receive treatment Lyme disease. I have heard of insurance companies who arbitrarily deny coverage for medically necessary treatment and of physicians who have been intimidated to the extent that they no longer treat Lyme disease patients. I would like to know if anyone has had or heard of similar experiences. =====*===== II. Q&A: Neurologic Lyme Disease --------------------------------------------------- Sender: Bill VanDerWoude <[email protected]> We have two young adults, (18 and 22 years old) with neurologic lyme disease. Both have positive western blots. Their manifestations are mainly psychological and are responding slowly to treatment. Our son (18 years old) had an allergic reaction to claforan and is taking minocycline orally until he can be tested to see if he has allergies to other antibiotics. He has bad periods roughly every three weeks where he is out of touch, does not want to sleep and will stay up for 36 hours. These bad periods last 8 to 10 days and he refuses his medication during these periods. He can not be reasoned with during these times and things are difficult. He also has panic attacks and wants to get away from the house and has been gone all night walking when he does get out. We have had 5 of these bad periods and we are told they are herxheimer reactions. He has been on and off IV antibiotics for eight months. This has consisted of about three months of rocephin and 5 weeks of claforan to which he recently had the allergic reaction. Has anyone experienced similar symptoms with neurologic lyme? What medication worked best? Are these bad periods herxheimer reactions? How many bad periods can we expect? Is there any way to know when they will stop? Our daughter (22 years old) has only been on IV rocephin for two weeks. She is very passive and does not speak unless spoken to. Her mind is bombarded with thoughts and they are not related and she can not get them out of her mind. Some thoughts play over and over in her mind. She hesitates when she speaks and has difficulty focusing on her thoughts. Has anyone had this experience and recovered? What are the best medications that worked? We are desperate and need help. Please respond to Robert Behan at [email protected]. =====*===== III. LYMENET: Bad Faith Claim Against Met Life ----------------------------------------------- Sender: Ira M. Maurer <[email protected]> As an alternative to bringing a class action lawsuit against the insurance industry, I am considering bringing a "bad faith" claim against Metropolitan Life on behalf of individual claimants. Currently, I am receiving more calls about Met Life than any other insurer. Anyone who is having difficulty getting Met Life to pay for their Lyme disease treatment should E-Mail me at [email protected]. I am also interested in hearing from anyone who has volunteered for the Lyme disease vaccine efficacy trial of Connaught Labs and has had an adverse reaction. =====*===== VI. MMWR: Lyme Disease -- United States, 1994 ----------------------------------------------- SOURCE: MMWR 44(24);459-462 DATE: Jun 23, 1995 For surveillance purposes, Lyme disease (LD) is defined as the presence of an erythema migrans rash greater than or equal to 5 cm in diameter or laboratory confirmation of infection with Borrelia burgdorferi and at least one objective sign of musculoskeletal, neurologic, or cardiovascular disease (1). In 1982, CDC initiated surveillance for LD, and in 1990, the Council of State and Territorial Epidemiologists adopted a resolution that designated LD a nationally notifiable disease. This report summarizes surveillance data for LD in the United States during 1994. In 1994, 13,083 cases of LD were reported to CDC by 44 state health departments, 4826 (58%) more than the 8257 cases reported in 1993 (|Figure_1|). As in previous years, most cases were reported from the northeastern and north-central regions (|Figure_2|). The overall incidence of reported LD was 5.2 per 100,000 population. Eight states reported incidences of more than 5.2 per 100,000 (Connecticut, 62.2; Rhode Island, 47.2; New York, 29.2; New Jersey, 19.6; Delaware, 15.5; Pennsylvania, 11.9; Wisconsin, 8.4; and Maryland, 8.3); these states accounted for 11,476 (88%) of nationally reported cases. Six states (Alaska, Arizona, Hawaii, Mississippi, Montana, and North Dakota) reported no cases. Reported incidences were greater than or equal to 100 per 100,000 in 15 counties in Connecticut, Maryland, Massachusetts, New Jersey, New York, Pennsylvania, and Wisconsin; the incidence was highest in Nantucket County, Massachusetts (1197.6). Six northeastern states accounted for 95% of the increase in reported cases for 1994: Maryland, New Jersey, New York, Rhode Island, Connecticut, and Pennsylvania. Reported cases increased by 218 cases (121%) in Maryland, 747 cases (95%) in New Jersey, 2382 cases (85%) in New York, 199 cases (73%) in Rhode Island, 680 cases (50%) in Connecticut, and 353 cases (33%) in Pennsylvania. Reported cases remained stable in the states with endemic disease in the north-central region (Minnesota and Wisconsin) and decreased in California (36%). Males and females were nearly equally affected in all age groups except those aged 10-19 years (males: 55%) and those aged 30-39 years (females: 56%). Reported by: State health departments. Bacterial Zoonoses Br, Div of Vector-Borne Infectious Diseases, National Center for Infectious Diseases, CDC. Editorial Note: LD is the most commonly reported vectorborne infectious disease in the United States. Infection with B. burgdorferi results from exposure to nymphal and adult forms of tick vectors of the genus Ixodes: I. scapularis (black-legged tick) in the northeastern and upper north-central United States, and I. pacificus (western black-legged tick) in the Pacific coastal states. Risk for exposure to B. burgdorferi is strongly associated with the prevalence of tick vectors and the proportion of those ticks that carry B. burgdorferi. The risk for exposure may be highly focal (2) and can differ substantially between adjacent states, counties, communities, and areas on the same residential property (3,4). In northeastern states with endemic disease, the infection rate of nymphal I. scapularis ticks with B. burgdorferi is commonly 20%-35%, and even modest changes in tick numbers can substantially affect the risk for exposure to infected vectors (5). In one area of Connecticut where approximately 15% of I. scapularis are infected with B. burgdorferi, changes in the annual incidence of LD have paralleled changes in I. scapularis densities (M. Cartter, Connecticut Department of Health and Addiction Services, K. Stafford, Connecticut Agricultural Experimental Station, personal communication, 1995). In 1994, tick surveillance in the Northeast indicated increases over previous years in vector tick density. For example, in one site in Westchester County, New York, population density of I. scapularis nymphs increased 400% from 0.4 nymphs per square meter in 1993 to 1.6 nymphs per square meter in 1994 (T. Daniels, Fordham University, R. Falco, Westchester County Department of Health, personal communication, 1995), and in Rhode Island, nymphal I. scapularis density measured at sites throughout the state increased 158% from 1993 to 1994 (T. Mather, University of Rhode Island, personal communication, 1995). Ascertainment of LD cases based only on passive surveillance may result in underreporting of cases (6,7). Because of this and in accordance with recommendations for control of emerging diseases (8), some states in which LD is endemic have expanded surveillance efforts. In 1994, the New York State Department of Health augmented surveillance with additional staff, intensified active case detection, and validated some cases reported in the previous year; these efforts probably accounted for some of the increase in reported cases for New York in 1994 (D. White, New York State Department of Health, personal communication, 1995). Active surveillance, with support from CDC, is conducted by health departments in Connecticut, Michigan, Minnesota, New Jersey, New York, Oregon, Rhode Island, and West Virginia. The risk for infection among persons residing in or visiting areas where LD is endemic can be reduced through avoidance of known tick habitats; other preventive measures include wearing long pants and long-sleeved shirts, tucking pants into socks, applying tick repellents containing N,N-diethyl-m-toluamide ("DEET") to clothing and/or exposed skin according to manufacturer's instructions, checking thoroughly and regularly for ticks, and promptly removing any attached ticks. Acaracides containing permethrin kill ticks on contact and can provide further protection when applied to clothing, but are not approved for use on skin. Additional information about LD is available from state and local health departments, from CDC's Voice Information System, telephone (404) 332-4555; from CDC's Bacterial Zoonoses Branch, Division of Vector-Borne Infectious Diseases, National Center for Infectious Diseases, telephone (970) 221-6453; and from the Office of Communications, National Institute of Allergy and Infectious Diseases, National Institutes of Health, telephone (301) 496-5717. References 1. CDC. Case definitions for public health surveillance. MMWR 1990;39(no. RR-13):19-21. 2. Piesman J, Gray JS. Lyme disease/Lyme borreliosis. In: Sonenshine DE, Mather TN, eds. Ecological dynamics of tick-borne zoonoses. New York: Oxford University Press, 1994:327-50. 3. Maupin GO, Fish D, Zultowsky J, Campos EG, Piesman J. Landscape ecology of Lyme disease in a residential area of Westchester County, New York. Am J Epidemiol 1991;133:1105-13. 4. Spielman A, Wilson ML, Levine JF, Piesman J. Ecology of Ixodes dammini-borne human babesiosis and Lyme disease. Ann Rev Entomol 1985;30:439-60. 5. Mather TN. The dynamics of spirochete transmission between ticks and vertebrates. In: Ginsberg HS, ed. Ecology and environmental management of Lyme disease. New Brunswick, New Jersey: Rutgers University Press, 1993:43-60. 6. Ley CT, Davila IH, Mayer NM, Murray RA, Rutherford GW, Reingold AL. Lyme disease in northwestern coastal California. Western J Med 1994;160:534-9. 7. Jung PI, Nahas JN, Strickland GT, McCarter R, Israel E. Maryland physicians' survey on Lyme disease. Maryland Medical Journal 1994;43:447-50. 8. CDC. Addressing emerging infectious disease threats: a prevention strategy for the United States. Atlanta, Georgia: U.S. Department of Health and Human Services, Public Health Service, 1994. =====*===== V. 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