Volume: 1 Table of Contents: ANNOUNCEMENT: Iowa State University Seeking Ticks ANNOUNCEMENT: Missouri and Southern Illinois Ticks Sought ABSTRACT: (Nord Med) Message from Lyme ABSTRACT: (J Wildl Dis) Serologic Survey for Antibodies to Borrelia Burgdorferi in White- Tailed Deer in Georgia QUESTION: Lyme Patient Access NEWS ANALYSIS: MS and LD in Connecticut ANSWER: Antibiotic Course QUESTION: Hearing Loss and Lyme Infected Tick Newsletter: ***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 22 - 9/20/93 I. Introduction II. Announcements III. News from the Wires IV. Questions 'n' Answers V. Jargon Index VI. How to Subscribe, Contribute and Get Back Issues I. ***** INTRODUCTION ***** This issue of the newsletter is comprised entirely of reader input. I would like to thank the contributors for sending in such excellent material and encourage everyone to send in stories that would be of interest to our readers. We begin with more tick requests. Mid-western researchers are looking for ticks and you can help. In the next section, Dr. Lloyd Miller uncovers a few gems in his database searches. He presents several very important pieces of information that everyone should read carefully. Tom Hoffman explains how he believes the Lyme Disease Electronic Mail Network could be used for research purposes. We continue with the preliminary results of Contributing Editor Frank Demarest's recent investigation into a peculiar increase in MS cases in one Connecticut town. Frank's interest began when he discovered a report on the increase in a local paper. You may be surprised to see the data he uncovered. We round up this issue with our Questions 'n' Answers. -Marc. II. ***** ANNOUNCEMENTS ***** From: John K. VanDyk ([email protected]) Lyme Disease Project Iowa State University Subject: Wanted, dead or alive: Iowa ticks for research Researchers at Iowa State University need your help. They have received deer ticks from 18 of 99 counties, mostly in eastern and northeastern Iowa. But more specimens are needed. Place Iowa ticks in a plastic ziploc bag with a few blades of grass to prevent dehydration. Then send the ticks, along with your name, address, and county where the tick was collected, to: Lyme Disease Project 436 Science II Iowa State University Ames, IA 50011 All those submitting ticks will receive a postcard identifying the tick. Additionally, ticks received live will be tested for spirochetes by IFA and results returned to the sender. =====*===== From: John K. VanDyk ([email protected]) Lyme Disease Project Iowa State University Subject: Hunters wanted to help Lyme research Many hunter-shot deer have engorged deer ticks around the ears and neck. These ticks may drop off and be easily collected when the body temperature of the deer drops. Ticks may also be removed from the carcass by using a scalpel or sharp knife to cut a small chunk of skin, including the tick's mouthparts, away from the deer. Ticks will remove their mouthparts from the skin overnight. Researchers at Iowa State University want these engorged ticks! Place them in a ziploc bag together with a few blades of grass to prevent dehydration. Put the bag in a container so the ticks will not be crushed in transport. Then send the ticks, along with your name, address, and county where the ticks were collected, to: Lyme Disease Project 436 Science II Iowa State University Ames, IA 50011 Especially sought are engorged ticks from deer in Lyme-endemic areas, such as Wisconsin. =====*===== From: The Lyme Disease Update (September 1993 issue) Subject: LIVE Missouri and Southern Illinois Ticks Needed for Lyme Research You can help research move forward. Collect and mail ticks (alive) to: Dr. Ed Masters, 60 Doctors' Park, Cape Girardeau, MO 63701. Please include your name and phone number and the county and state where the tick was collected. Instructions for mailing ticks: 1. Put the tick in a ziploc plastic bag. 2. Place a single blade of grass in the bag with the tick. 3. Put the plastic bag with the tick in another bag (double bag) for safety. 4. Put the ziploc bag in a non-crushable container (i.e. small box) for mailing. 5. Mail by regular mail to the above address. [From the Lyme Disease Update, nationwide monthly newsletter, September 1993, call or fax to 1-812-471-1990 for more information] =====*===== Sender: "Lloyd E. Miller,DVM" <[email protected]> Subject: Items of interest I found the following reference and abstract in a recent Medline search. Everyone in the medical profession (physicians, physician assistants, nurses, researchers, insurance representatives, etc) should read, memorize and have the abstract framed on their wall! Wahlberg P [Message from Lyme] Budskapet fr~an Lyme. Nord Med 1993;108(5):157-8 (Published in Swedish) The background to the discovery of Lyme disease teaches a salutary lesson. The symptoms and signs of this disease had been observed by doctors for a century, particularly in the Scandinavian countries, without anybody being able to draw the right conclusions. The first patients were identified in the USA by their relatives or by themselves. Recognition of their plight by the medical profession was chiefly due to the patients' tenacity. We must remember to pay attention to what patients tell us; they may often be right, even when they seem to be wrong. Where fact and theory are incompatible, it is theory, not fact, that needs to be amended. In all likelihood, we all from time to time observe disorders in our patients that are inconsistent with established scientific models, but which we nevertheless attempt to squeeze into these models. Such an approach is not uncommon in the history of medicine. The message from Lyme calls for humility and reflection. Institutional address: Asvagen Mariehamn Aland. ----------------------------------------------------------------------------- In LymeNet Newsletter v1 #13, I reported the following from the meeting at Atlantic City: Dr. Oliver, as he stated it, was told "as if they were law" certain facts about Lyme disease in the South. One of which was that there is no evidence of Bb in non-human animals in the Southeast. He showed this to be wrong. The following reference helps to show how wrong. Mahnke GL, Stallknecht DE, Greene CE, Nettles VF, Marks MA Serologic survey for antibodies to Borrelia burgdorferi in white- tailed deer in Georgia, J Wildl Dis 1993 Apr;29(2):230-6 A serologic survey for antibodies to Borrelia burgdorferi utilizing an enzyme-linked immunosorbent assay (ELISA) was conducted on white-tailed deer (Odocoileus virginianus) serum samples collected in Georgia (USA) from 1979 to 1990. Serologic results from four regions (Barrier Islands, Coastal Plain, Piedmont, and Mountain) and three age classes (0.5, 1.5, and > or = 2.5 yr) were compared. Antibody prevalence, as determined by positive results at a 1:64 dilution or higher, was 36% in the Barrier Islands, 14% in the Coastal Plain, 8% in the Piedmont, and 4% in the Mountain regions. Statewide antibody prevalence was 19%. Antibody titers generally were low, and if a more conservative cutoff titer of 1:128 were used, the statewide prevalence estimate would have been reduced to 5%. Antibody prevalence as determined at this higher cutoff value, however, still remained highest in the Barrier Islands and lowest in the Mountains. Prevalence estimates were lower in the 0.5-yr age class than in the 1.5-yr or > or = 2.5-yr age class (P < 0.05). A more in-depth retrospective study of the Barrier Islands region from 1971 to 1985 revealed a 50% overall antibody prevalence; positive results were found in every year represented except 1990. Based on these results, we propose that B. burgdorferi has been present in Georgia since at least 1971. Institutional address: College of Veterinary Medicine University of Georgia Athens 30602. ----------------------------------------------------------------------------- >From NY Times Book Review of "The Forgotten Plague" by Frank Ryan - Little >Brown & Co : Review by Stephen S. Hall (Sunday August 1, 1993) The following two statements are direct quotes. 1. Almost every significant advance against tuberculosis was made not by recognized experts in the field but by scientists working in unrelated fields who were visionary enough to see how their work could be applied against tuberculosis. By contrast, the people who were most resistant to new developments were physicians, whom Domagk once derided as "TB-popes". 2. Most important, Dr. Ryan suggests that optimism can be disastrous. In the war against clever pathogens cures are rarely complete or enduring. ********** Little has change over the years! We certainly have our share of "Lyme-Popes." Some are more vocal than others. Some even write their own dictums. The cure for Lyme has not yet been discovered but we would be well advised to continue to look for more and better cures as research progresses. Especially given the ability of Bb to evade and change. =====*===== Sender: [email protected] (Tom Hoffman) Subject: Lyme Patient Access Dear LymeNet Editor(s), I applaud your newsletter and have derived much information from it. As a recovered (or is it recovering?) Lyme disease patient and a computer nerd, I see the Internet as a great way to get information distributed easily to the masses. Of course, these masses include Lyme disease researchers (I hope). Anyway, the researchers may be interested in tapping the Lyme patients who also read the newsletter. For example, I have a what probably amounts to a CDC definition of Lyme disease with heart involvement and positive serology. I have been treated in two different periods and now (today anyway) feel fairly normal. The point is that some researcher may be interested in my or the tens, hundreds, (thousands?) of other Lyme patients that read the newsletter. They may be interested in what's already documented (hospital and doctor records, etc.) or possibly even in bodily fluids or tissues. Researchers have for some time used on-line databases to search for information. Now, they can use the Internet to find patients (i.e. samples) for their studies. Maybe, Lyme patients can even "register" their individual summary of disease, treatment and outcome. The researcher could pick the "samples" that meet the criteria they are interested in. Just a thought... thanks, III. ***** NEWS FROM THE WIRES ****** From: Frank Demarest <[email protected]> Subject: Interesting statistics >Headline: Outbreak of MS cases a concern. >Associated Press, Wallingford CT. >Reported in the Middletown (CT) Press 9/13/93. [Relevant paragraphs extracted] ... The town health department released a study that shows Wallingford's rate of MS cases is 2.5 times the Northeast regional average. The town of 40,000 has 110 reported cases compared with the regional average of 110 per 100,000 and the national average of 60 per 100,000." ... "It still doesn't mean that this is a problem," said Chad Helmick, a doctor with the Atlanta-based Centers for Disease Control and Prevention, which investigates MS cases. ... "Joan Corcoran Fishbein, 49, was diagnosed with the disease in 1976. She said she thinks the cases are linked to pesticides sprayed on Dutch elm trees. -- Wallingford is about 12 miles from Yale, where seronegative Lyme disease is considered rare, and the clinical diagnosis of Lyme disease must be supported by lab evidence. About 1/3 of the area of Wallingford is rural and adjacent to the rural towns of Durham and No. Branford. The numbers for Wallingford and the adjacent towns are: City Where Disease Number Rate (per 100,000 population) --------------------------------------------------------------------------- Lyme East 25mi Lyme 261 334 -- CT River -- Deep River East 18mi Lyme 30 693 Killingworth East 12mi Lyme 18 374 Durham East Lyme 12 209 No. Branford Southeast Lyme 25 192 Wallingford 0 Lyme 2 5 Wallingford 0 MS 110 275 No. Haven South Lyme 2 9 Hamden Southwest Lyme 7 13 Cheshire West Lyme 4 16 Meriden North Lyme 3 5 Middlefield Northeast Lyme 1 25 I find myself wondering why Wallingford has the lowest rate of Lyme disease in the immediate area. It will be interesting to see what the investigation finds about MS, and if Lyme disease is found in some cases. There are many possibilities: Lyme underdiagnosis? Pesticides killing ticks and causing MS? Random occurrences? A nearby hunting club killing deer? IV. ***** QUESTIONS 'N' ANSWERS ***** Sender: [email protected] (John Setel O'Donnell) Subject: Re: LymeNet Newsletter vol#1 #17 >Sender: [email protected] (Rich Johns) >Subject: question >Hello. I am new to this group. I recently contracted Lyme disease. >I have a question regarding my antibiotic course. >I have an Infectious Disease specialist as my doctor. He started me on a >21 day course of Doxycycline 100mg 3 times a day. This promptly gave me >heartburn, which is the only way I can describe it. It's worse though, >because it feels like something is stuck in my esophagus >Sometimes and I have a nearly constant discomfort in my stomach. When I >swallow is seems to hurt deep in my throat. >Now, none of this is too terrible and I would be willing to deal with it if >I thought that I wasn't doing damage to myself. To ease the discomfort I >starting taking it 2 times a day, ie., 100mg, instead of 3 times a day. >The reason I don't feel badly about going against my doctor's advice is >because I have heard that the course should last 4-6 weeks. Also, my >brother-in-law, who is a family doctor, one I trust, told me that 100mg >2 x a day is enough. However, I thought I'd get the wisdom of this newsgroup. YOU SHOULD NOT BE DOING THIS. Your brother-in-law is correct that the proper course should be 4 to 6 weeks. Doxycycline is not really the drug of choice at the moment; however, it is effective _if taken in adequate dosage_. You should be taking it 3x/day to achieve and maintain adequate bacteriostatic levels of the drug. Taking it in too-low dosage is likely to result in relapse after treatment, and may assist the bug in becoming deep-seated. You should go get more of the drug so that you can take it the appropriate period. Or you could switch to amoxicillin to see if you tolerate it more easily. In general, when any kind of adverse drug reaction occurs, you should be consulting your physician rather than modifying the course of the drug yourself. =====*===== Sender: [email protected] Subject: Hearing loss and lyme infected tick My daughter who is 12 years had a unilateral sudden hearing loss of about 80 percent. The doctors said it must have been caused by a virus and that since it involved the inner ear, they gave her no hope of recovery from this one-sided deafness. I was exploring on a database of periodical citations and came across an article dealing with hearing loss and lyme disease. (We do quite a bit of camping, but she has never shown any of the usual symptoms of lyme disease, i.e., rash, flu-like symptoms, stiff neck, sore throat, etc.) The citation for the article is listed below. Has anyone else experienced any sudden hearing loss related to lyme disease? Hanner,Per et al. "Hearing impairment in patients with antibody production against Borrelia Burgdorferi antigen" The Lancet, v.1, n.8628 Jan.7, 1989, pg.13-16. V. ***** 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 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 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. VI. ***** HOW TO SUBSCRIBE, CONTRIBUTE AND GET BACK ISSUES ***** 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] or FAX them to 215-974-6410. All are encouraged to submit questions, news items, announcements, and commentaries. BACK ISSUES: Available via 2 methods: 1. E-Mail: Send a memo to [email protected] in the first line of the body, type: get LymeNet-L/Newsletters x-yy (where x=vol # and yy=issue #) example: get LymeNet-L/Newsletters 1-01 (will get vol#1, issue#01) 2. Anonymous FTP: ftp.Lehigh.EDU:/pub/listserv/lymenet-l/Newsletters ----------------------------------------------------------------------------- LymeNet - The Internet Lyme Disease Information Source ----------------------------------------------------------------------------- Editor-in-Chief: Marc C. Gabriel <[email protected]> FAX: 215-974-6410 Contributing Editors: Carl Brenner <[email protected]> John Setel O'Donnell <[email protected]> Frank Demarest <[email protected]> Advisors: Carol-Jane Stolow, Director William S. Stolow, President The Lyme Disease Network of New Jersey (908-390-5027) ----------------------------------------------------------------------------- WHEN COMMENTS ARE PRESENTED WITH AN ATTRIBUTION, THEY DO NOT NECESSARILY REPRESENT THE OPINIONS/ANALYSES OF THE EDITOR. ----------------------------------------------------------------------------- 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]. ----------------------------------------------------------------------------- |
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