Volume: 3 Table of Contents: I. LYMENET: News From the Michigan Lyme Disease Association II. AM J MED: Ocular manifestations of Lyme disease III. J CLIN MICROBIOL: Immunoblot interpretation criteria for serodiagnosis of early Lyme disease VI. About The LymeNet Newsletter Newsletter: *********************************************************************** * The National Lyme Disease Network * * LymeNet Newsletter * *********************************************************************** IDX# Volume 3 - Number 16 - 10/04/95 IDX# INDEX IDX# IDX# I. LYMENET: News From the Michigan Lyme Disease Association IDX# II. AM J MED: Ocular manifestations of Lyme disease IDX# III. J CLIN MICROBIOL: Immunoblot interpretation criteria for IDX# serodiagnosis of early Lyme disease IDX# VI. About The LymeNet Newsletter IDX# QUOTE OF THE WEEK: "Medicine and civilization advance and regress together. The conditions essential to advance are intellectual courage and a true love for humanity. It is as true today as always in the past that further advance or even the holding of what has already been won depends upon the extent to which intellectual courage and humanity prevail against bigotry and obscurantism." -- Howard W. Haggard, M.D. Yale University, 1929 Quote submitted by a reader I. LYMENET: News From the Michigan Lyme Disease Association -------------------------------------------------------------- Sender: Kim Weber, Editor, MLDA <[email protected]> FRUSTRATED RESIDENTS SPEAK-OUT ON LYME DISEASE Are doctors reluctant do diagnose and report Lyme disease after being told by state health officials there is no Lyme in Michigan? Are patients' pleas for help being ignored? That's just what many residents from lower Michigan were saying at two public hearings, August 22 and 24th, where they had the opportunity to recount their personal experiences with this disease. It is problems like this that initiated an investigation by State Reps., Penny Crissman, R-Rochester, John Jamian, R-Bloomfield Twp., and Sandra Hill, R-Montrose Twp. More than 400 residents attended the two hearings. A busload of more than 50 people from Jackson came with the South Central Support Group, one of thirteen groups stationed in Michigan. Many witnesses had expressed their frustration with the lack of recognition and response by their local health departments and the Michigan Department of Public Health, despite a growing number of sufferers who are being diagnosed. Among these cases is Mary Patterson, 18-year old daughter of L. Brooks Patterson, Oakland County Executive. After seeing ten physicians and being told "it was all in your head", Dr. Arolnold Markowitz of Keego Harbor finally diagnosed Mary. By then, she was sick, weak and had lost 28 pounds. After his experience with physicians who know little about Lyme disease, L. Brooks Patterson was prompted to become involved with the hearings. He recommended requiring continuing education on Lyme disease for doctors and improved reporting of cases. CONTROVERSY IN DIAGNOSING AND REPORTING Richard D. Wheat, administrative assistant for the Michigan Dept. of Public Health, Office of Legal & Legislative Affairs, said that along with reporting of cases, there are approximately 300 physicians participating in active surveillance in Michigan. However, physicians not involved in this study, are treating a number of patients for Lyme disease. Some of these physicians may be reluctant to fill out the cumbersome paperwork in the reporting of cases and may also fear investigation of their practices. The controversy surrounding Dr. Joseph Natole of Saginaw, who did comply with reporting requirements, may play a role in the intimidation of these physicians. Dr. Natole, lauded by patients at the hearings for his willingness to treat in the face of recrimination, has stood up to allegations of over diagnosing Lyme disease. Formal charges by the Michigan State Attorney General led to hearings last year in Lansing; and are now pending on the ruling from an administrative judge and Board of Medicine. Another physician, who is closely watching the investigation and expressed concern over his own practice, testified that he has treated over 170 patients in nine years. He was dismayed that the medical community has "their head buried in the sand" when it comes to recognizing Lyme disease in our state. Part of the problem is the difficulty in diagnosis, due to the unreliability and interpretation of current tests. This leaves the diagnosis mainly a clinical one. Laurie Eichstead, V.P., MLDA, testified that this is very difficult for most physicians, who only receive approximately five minutes of lecture on Lyme disease in medical school. Eichstead, who has a background in nursing and works in a hospital said, "physicians are torn by the health department's information negating Lyme disease. Instead of learning what Lyme disease is and how to treat it, they are hearing that it is not a problem and how not to diagnose this disease." One area of intense interest centers in Oakland County, where two physicians are treating a number of patients for Lyme disease. Many of these patients believe they were bitten in Oakland County. From 1984-1994, the CDC reported 56 cases from Oakland County. However, in the last year alone, cases have increased ten-fold. At the Rochester hearing, Dr. Ronald Davis, chief medical officer for the Michigan Department of Health responded that there is little risk of Lyme disease in the lower peninsula. His testimony cam on the eve of an announcement that he would assume a new position as director of the Center for Health Promotion and Disease Prevention at Henry Ford Health System, Inc., effective Sept. 25th. The assertion that Lyme disease is not a threat in the lower peninsula is based on research done by Dr. Ed Walker, M.S.U., entomologist. However, Jane Huegel, President, MLDA, stated that 90% of the CDC grants were used for this study in Menominee County, in the upper peninsula, an area already know for Lyme disease. She said that many of the areas, where cases were reported, have been inadequately surveyed. When there was cooperative research done between Dr. Walker and the MLDA in Frankenmuth, 7.8% ear punch biopsies turned out to be positive using PCR testing on mice. Jean Schluckebier, Secretary of the Board of Directors, MLDA, said that the health dept., wouldn't accept these results, and that she is tired of hearing all the reasons why don't have Lyme disease in Michigan. LOOKING TOWARD DIFFERENT VECTORS "If we have this many people with Lyme disease and no deer ticks, then we should be looking for a different vector", testified Schluckebier. She said these questions were being raised back in 1989 in joint meetings with Dept. of Agriculture, Michigan Department of Health and MSU scientists. Rev. Kenneth Lindland of Jackson, whose son, Paul, suffers from Lyme disease also suggested that different vectors be seriously considered. He cited Missouri as an example where there is a high incidence of Lyme disease, yet the deer tick is not considered suspect for the transmission of Lyme in that region. Studies conducted in Missouri point to the lone star and American dog ticks as the best candidates for carrying Lyme disease. Dr. Edwin Masters has published articles on his research isolating the bacteria in patients and potential vectors. He concludes that an atypical Lyme spirochete may account for the great numbers of Lyme cases that fit the classic picture, yet fail to culture positive for this organism. The Michigan Lyme Disease Association is currently soliciting funds and involved in a large research project with entomologists who are scheduled to drag for ticks in "hot spots" this fall. The association has targeted areas where reported cases are clustered. When asked about the possibility of considering other vectors in Michigan, Jan Huegel, MLDA President said, "our research will predominantly be looking for the Ixodes scapularis (deer tick), but we aren't ruling out other vectors such as A. americanum (lone star) and D. variabilis (American dog) ticks. After listening to compelling testimonies, Reps., Crissman, Jamian and Hill will now take our concerns and suggestions to Lansing where they can work on solutions to the problems of reporting, diagnosis and treatment. Before receiving a standing ovation, L. Brooks Patterson also proposed that Governor Engler impanel a blue ribbon committee for investigating Lyme disease in our state. AFTER W-O-R-D-S Within one week of the hearings and press coverage, the MLDA received over 95 calls, most of which were from the lower peninsula. There were some residents that requested information and, then, there were those that fit the classic picture of Lyme disease and couldn't find adequate medical care. Oakland/Macomb support group leader, Linda Purdy followed-up on many of these calls and mailed out information. The MLDA is committed to the education and research of Lyme disease, and will continue to work with our legislature to address and resolve these issues that can no longer be ignored. =====*===== II. AM J MED: Ocular manifestations of Lyme disease ----------------------------------------------------- AUTHORS: Lesser RL REFERENCE: Am J Med 1995 Apr 24;98(4A):60S-62S ORGANIZATION: Department of Ophthalmology and Visual Science, Yale University School of Medicine, New Haven, Connecticut, USA. ABSTRACT: Although ocular manifestations of Lyme disease have long been noted, they remain a rare feature of the disease. The spirochete invades the eye early and remains dormant, accounting for both early and late ocular manifestations. A nonspecific follicular conjunctivitis occurs in approximately 10% of patients with early Lyme disease. Keratitis occurs often within a few months of onset of disease and is characterized by nummular nonstaining opacities. Inflammatory syndromes, such as vitritis and uveitis, have been reported; in some cases, a vitreous tap is required for diagnosis. Neuro-ophthalmic manifestations include neuroretinitis, involvement of multiple cranial nerves, optic atrophy, and disc edema. Seventh nerve paresis can lead to neurotrophic keratitis. In endemic areas, Lyme disease may be responsible for approximately 25% of new-onset Bell's palsy. Criteria for establishing that eye findings can be attributed to Lyme disease include the lack of evidence of other disease, other clinical findings consistent with Lyme disease, occurrence in patients living in an endemic area, positive serology, and, in most cases, response to treatment. Management of ocular manifestations often requires intravenous therapy. =====*===== III. J CLIN MICROBIOL: Immunoblot interpretation criteria for serodiagnosis of early Lyme disease -------------------------------------------------------------- AUTHORS: Engstrom SM, Shoop E, Johnson RC REFERENCE: J Clin Microbiol 1995 Feb;33(2):419-27 ORGANIZATION: Department of Microbiology, University of Minnesota Medical School, Minneapolis. ABSTRACT: We monitored the antibody responses of 55 treated patients with early Lyme disease and physician-documented erythema migrans. Six sequential serum samples were obtained from patients before, during, and until one year after antibiotic therapy and analyzed by in-house enzyme-linked immunosorbent (ELISA) and immunoblot assays. An immunoblot procedure utilizing a gradient gel and an image analysis system was developed. A relational database management system was used to analyze the results and provide criteria for early disease immunoblot interpretation. Recommended criteria for the immunoglobulin M (IgM) immunoblot are the recognition of two of three proteins (24, 39, and 41 kDa). The recommended criteria for a positive IgG immunoblot are the recognition of two of five proteins (20, 24 [> 19 intensity units], 35, 39, and 88 kDa). Alternatively, if band intensity cannot be measured, the 22-kDa protein can be substituted for the 24-kDa protein with only a small decrease in sensitivity. Monoclonal antibodies were used to identify all these proteins except the 35-kDa protein. With the proposed immunoblot interpretations, the sequential serum samples were examined. At visit 1, the day of diagnosis and initiation of treatment, 54.5% of the serum samples were either IgM or IgG positive. The peak antibody response, with 80% of the serum samples positive, occurred at visit 2, 8 to 12 days into treatment. The sensitivities of the IgM and IgG immunoblot for detecting patients that were seropositive into the study period were 58.5 and 54.6%, respectively, at visit 1 and 100% at visit 2. Twenty percent of the patients remained seronegative throughout the study. The specificities of the IgM and IgG immunoblots were 92 to 94% and 93 to 96%, respectively. The IgM immunoblot and ELISA were similar in sensitivities, whereas the IgG immunoblot had greater sensitivity than the IgG ELISA (P = 0.006). =====*===== VI. 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