Volume: 1 Table of Contents: ANNOUNCEMENT: (LD Network of NJ) - Expansion to National Organization QUESTION: Pain Syndromes in LD ANSWER: How Accurate are LD Tests? QUESTION: Dogs and Ticks ABSTRACT: Use of Roxithromycin in LD BIBLIOGRAPHY: Listing of several interesting publications Newsletter: ***************************************************************************** * Lyme Disease Electronic Mail Network * * LymeNet Newsletter * ***************************************************************************** Volume 1 - Number 03 - 2/18/93 I. Introduction II. News from the Wires III. Questions 'n' Answers IV. Partial Bibliography for Further Reading V. Jargon Index VI. How to Subscribe, Contribute and Get Back Issues I. ***** INTRODUCTION ***** I would like to hear your opinions with regard to the evolution of this group. Some users would like to have more "free-flowing" discussions, as opposed to having all posts filtered by me. The drawback to this, however, is the increase in net "space" it would occupy. Is this approach warranted? Do you think there would be enough discussion to make it worth while? How about the idea of a Usenet group? As for the newsletter, would you prefer a shorter issues more frequently? Or perhaps a once-per-month roundup? Please send any comments directly to me at [email protected] . The bulk of this issue consists of questions and answers. The only News is from the President of the Lyme Disease Network of New Jersey in East Brunswick, NJ. I was not able to include the material that arrived in the past 24 hours. Those materials will be enclosed in the next issue. Sorry for the delay! -Marc. II. ***** NEWS FROM THE WIRES ***** A MESSAGE FROM THE PRESIDENT OF THE LYME DISEASE NETWORK OF NJ As we enter a new year, The Lyme Disease Network will undertake its biggest and most important project since it was founded in 1991. We are planning to expand the network to a national service organization. Our mission remains the same as it has always been: "The Lyme Disease Network is an organized, proactive group, dedicated to raising the standard of care for Lyme Disease through education, research, and policy development." By using a participatory committee structure we will develop a series of action plans which will accomplish the following goals: * Coordinate and disseminate educational materials on prevention, awareness, treatment protocols, and support group organizational guidance. * Develop a Positive Physician Alliance. Currently, there is a clear need across this country for an organized patient advocacy network. There exists today a fragmented community of Lyme Disease support groups. These groups tend to "do their own thing" and often function ineffectively. It is time we, The Lyme Community, join forces to fight this disease and represent ourselves as a determined group, with a clear mission. Funding for this project will come from several types of sources. We are seeking a grant from several institutions which specialize in funding non-profits that are health oriented. There are approximately 40 commercial businesses who have in the past donated funds in our support. They are committed to our cause and have indicated that they will continue to support us financially. The public has funded the Network through hundreds of donations. This comprises nearly 40% of our total income. The Lyme Disease Network needs your help, please take the times to send what you can afford. It's tax deductible, & will be used to directly help the victims and potential victims of Lyme Disease. LDN President, Bill Stolow 908-390-5027 III. ***** QUESTIONS 'N' ANSWERS ***** Sender: "Lloyd E. Miller" <[email protected]> Subject: Pain - questions Lyme disease causes severe pain which is, at times, extremely debilitating. This pain appears to be quite difficult to treat. The character of this pain varies from patient to patient and often varies within the same patient. I have heard it described as joint pain (with or without swelling or redness), stabbing pain ("feels like skewers are being forced through the joints"), tingling and burning sensations in arms, legs, hands and feet ("feel like I'm standing on burning hot sand"), burning sensation just under the skin (like a deep sun burn), muscle pain (cramping and aching), pain around the joints, shooting pains ("feel like someone is constantly hitting my funny bone"), headaches, neck pain, chest pain simulating heart pain. The pain varies in intensity and seems to follow a cyclical pattern. It would appear that since these pain syndromes are relatively unresponsive to currently available pain medications (NISADS, opiates, steroids) that the pathogenesis may be somewhat different than in other disease states. Questions: 1. Has anyone identified the pathogenic mechanisms of these pain syndromes? 2. Is anyone currently researching the mechanisms of these pain syndromes? 3. Has anyone found any effective means to control the pain? Through the use of medications? Other treatment strategies? 4. Why aren't current medications more effective? 5. The pain of fibromyalgia, chronic fatigue syndrome and Lyme appear to be very similar. Is there a common link somewhere? =====*===== Sender: Wojciech Basiak <[email protected]> Subject: question about babesiasis I'm looking for any information about serological tests for babesiasis. Especially I'm interested in tests available in Europe. Maybe someone can share with me his experience how accurate are this tests. I am a physician working in Institute of Infectious and Parasitic Diseases in Warsaw. I intend to investigate anti-babesia antibodies in people with high titres of anti-Borrelia antibodies in serum. In Poland no anti-babesia tests are available. Thanks in advance =====*===== Sender: "Lloyd E. Miller" <[email protected]> Subject: suggestions A couple of suggestions: 1. In addition to support group meetings how about including a calendar of and information about medical and scientific meetings devoted to Lyme disease or having relevance to Lyme? Ed.- Yes. In the future, I will be able to provide this information. It's just a matter of time until I can contact the people who can keep me up to date on the latest medical and patient gatherings. 2. Is it possible to find out about research projects worthy of financial support and how one goes about donating to such projects. Including information of this type in the newsletter periodically would be very helpful. (I wrote the LBF a couple months ago for this information and have had no reply. I am especially interested in knowing what research is being conducted in the areas of pathogenesis and treatment of chronic Lyme disease.) Ed.- I'll work on this query. Thanks for the suggestion. =====*===== Sender: "Lloyd E. Miller" <[email protected]> Subject: question response - accuracy of Lyme tests Such a simple question - not a simple answer. The best response I've heard to date is that the accuracy of any test is difficult to interpret since there is, as yet, no "gold standard test". All the tests have their good and bad points. Everyone who has developed a test feels his is the best. The following three references deal with the tests and their problems. 1. Luger SW,Krauss E: Serologic tests for Lyme disease. Archives of Internal Medicine 1990;150:761-763. 2. Schwarthz BS,Goldstein MD et al: Antibody testing in Lyme disease. Journal of the American Medical Association 1989;262(24):3431-3434. 3. Bakken LL,Case KL,Callister SM et al: Performance of 45 laboratories participating in a proficiency testing program for Lyme disease serology. Journal of the American Medical Association 1992;268(7): 891-5. I have attended several conferences; following are excerpts from notes I took - I believe them to be accurate. Lyme Disease Teaching Day - Poughkeepsie, NY - October 17, 1990 Dr Marc G. Golightly: stated that the IFA test is very good - *emphasized if done properly*. He also said the Elisa antigens are a problem - they aren't standardized. Proficiency of laboratory workers is a big problem with testing. Commercial Elisa tests very poor in picking up early (low antibody) LD; <40% picked up positives. They are better with neg results and high positives. PCR (DNA probe) clearly a research tool currently. Urine antigen: research oriented. Shouldn't be used clinically in his opinion. He felt that Western blot was still a research procedure: worse than IFA in interpretation. Interpretation a huge problem - many antigens common to other organisms. Lack of standardization - *no better than good Elisa test*. "T" cell test rarely useful. I got the impression he felt that the IFA and Elisa tests were equally good when performed by experienced technicians. John Drulle, M.D. - urine antigen testing in Lyme disease Urine antigen levels inconsistent from day to day. Often increased on the 2nd and 10th days following the initiation of antibiotic therapy. The daily fluctuations are a problem in using the test. Source of antigen is not known. *Not a test for cure* At that time he stated that 3M had a 2nd generation test on line: specificity 99%; sensitivity 80-90% Dr. Joseph Burrascano Jr. - Albany New York -- June 5, 1991 Stated that 40% of Lyme tests are falsely negative and 1% are falsely positive. (I believe he was referring to IFA and ELISA tests then available.) Lyme Borreliosis Foundation Conference - Stamford, CT. -- April 1992 Dr. Burrascano on Investigative Work with Antigen Capture Test: High specificity and sensitivity. May possibly be useful as indicator for progression of disease or of cure. At the time of the meeting the test was not available commercially and doesn't know when/if it will be. Reference: Dorward DW,Schwan TG et al: Immune Capture and Detection of Borrelia Burgdorferi Antigens in Urine, Blood, or tissues from Infected Ticks Mice, Dogs, and Humans. Journal of Clinical Microbiology 1991;29(6):1162-1170. Dr. Persing on PCR testing Major problem is false positive tests due to contamination of laboratories with DNA. Requires special precautions to avoid the problem. False negatives do occur. Urine unreliable for PCR testing: degradation products interfere with test. Dr. Liegner: Western Blot is *not* diagnostic. Fifth International Meeting - Washington - May 1992 Comments by Dr.John J. Halperin: Culture 10% sensitive (i.e. culture as means of diagnosis fails 90% of the time). Culture 100% specific. Positive serum or intrathecal antibody *with symptoms* 95% sensitive *without symptoms* only 15% sensitive. Sensitivity of PCR not currently known/ specificity about 100%?? Negative PCR or Intrathecal antibody *can not* be used to rule out CNS infection. Comments by Dr. Dattwyler Testing is a "diverse not very good area". **PREDICTIVE VALUE of positive test when patient *has* symptoms is 94-95%**. Western blot in his opinion should not be used to confirm the diagnosis because of standardization problems that exist. Comments by Frank Dressler Felt strongly that multiple positive bands were needed on the western blot to be significant. * The 41kD band has cross reaction; therefore a single band may not yield good information. Comments by Dr. Masters States a serious problem: "Lyme disease is a clinical diagnosis until you make it". Then your diagnosis is questioned - especially if you can't confirm it with tests which are not always reliable! It is very obvious that the "gold standard" test to define all stages of Lyme disease is not yet developed. Until it is the controversy over what constitutes a Lyme case will persist. Not discussed in this is the so called Gundersen test. I have no information on accuracy. See reference for information: I believe it is commercially available from a lab in California: Reference: Callister SM,Schell RF,Lovrich SD: Lyme disease assay which detects killed Borrelia burgdorferi. J Clin Microbiol 1991;29(9):1773-6. What I've learned over the years about the tests. SEROLOGY:1) Inconsistent:lab to lab :Within same lab: test to test 2) Poor quality control 3) Tests not standardized 4) Titers can rise slowly over a period of weeks 5) Titer depends on ability of patients immune system to respond to Bb antigens 6) Antibiotic effect [antigen reduction minimizes or stops antibody production ??] 7) Paired samples not very helpful -- [often see patients in later stages of illness] 8) Positive titers can last for months to years (why?) PCR - promising Finding Bb DNA in seronegative / CSF negative patients Finding Bb DNA in CSF at time of erythema migrans POSITIVE TITER POSSIBLE INTERPRETATIONS: Exposure - no clinical illness or subclinical infection Exposure - current illness unrelated Exposure to non-pathogenic strain of Bb Immunity ??? - patient recovered False result - cross reactivity - other Borrelia, Treponemes False result - laboratory error True result - Lyme disease when appropriate symptoms are present NEGATIVE TITER POSSIBLE INTERPRETATIONS: No exposure True result - Not Lyme disease - if sick then current illness is not Lyme False result - 1) Lyme disease with low levels or no measurable antibody in serum or CSF - early Lyme 2) Antibodies tied up in complexes causing negative results 3) No immune response for whatever reason. 4) laboratory error Hope this helps - in essence the answer is we don't REALLY know yet!!! =====*===== Sender: [email protected] (Mitch Collingsworth) Subject: Re: More LymeNet questions... A couple of things about the question of dogs, ticks, and lyme disease. Because we have a dog and frequently visit lyme disease areas I am concerned about this, too. First off, having seen and removed deer ticks from my wife, I strongly believe you would never be able to find them on a dog. They are just too small. The ones you do find on dogs are *much* bigger. Secondly our dog has come down with a limp in one leg at least a few times in her life for various reasons, always tracked down by the vet, and so far not related to LD. Finally, because of my concern about LD and the obvious fact that tick inspections are futile on dogs (for deer ticks), I asked our vet about it. He said that dogs can contract LD. Last year a LD vaccine was approved for dogs and as soon as he was able to acquire it our dog was vaccinated. My understanding was that the hope is that after appropriate testing, this vaccine or some variation of it will hopefully be available for humans. By the way, not all vets are created equal. The first time our dog came down with a limp, I had her looked at by a different vet first. He said to confine her so it would be rested and if it didn't clear up in a week he would probably have to operate. After a week I took her to our regular vet who said something about a bone spur or something (don't remember now, it was several years ago) and to give her *lots* of exercise and it would probably go away on its own. I did and it did. Guess which vet we've never been back to! =====*===== Sender: JONATHAN LORD <[email protected]> Subject: Errors in diagnosis of LD article I am enjoying the LymeNet newsletter. I regularly do a literature search on this topic looking for interesting articles, since my wife is a LD victim. I came across this article on the difficulty in getting an accurate laboratory diagnosis. My wife had many tests before anything came back positive. Jonathan Lord Appended Citation: Authors Bakken LL. Case KL. Callister SM. Bourdeau NJ. Schell RF. Title Performance of 45 laboratories participating in a proficiency testing program for Lyme disease serology. Institution Wisconsin State Laboratory of Hygiene, University of Wisconsin, Madison 53706. Journal Journal of the American Medical Association 268(7):891-5, 1992 Aug 19. Abstract OBJECTIVE--We show that significant interlaboratory and intralaboratory variations exist in Lyme disease proficiency testing. DESIGN--Six case -defined Lyme serum samples and three serum samples from individuals with no history of Lyme disease were randomized in four shipments and distributed to 45 participating laboratories. RESULTS--Interlaboratory and intralaboratory performances were highly variable. Approximately 4% to 21% of laboratories failed to identify correctly positive serum samples with titers of 512 or more using polyvalent serum or immunoglobulin G conjugates. With lower levels of anti-Borrelia burgdorferi antibody in the serum sample, approximately 55% of participating laboratories did not identify a case-defined serum. There was also a striking inability of many laboratories to reproduce their results on split samples from the same individual. In addition, 2% to 7% of laboratories identified serum samples from individuals with no known exposure to B burgdorferi as positive using polyvalent serum. The false positivity rate increased to 27% with the use of immunoglobulin G conjugate. CONCLUSIONS--Our results indicate that there is an urgent need for standardization of current testing methodologies. Until a national commitment is made, serological testing for Lyme disease will be of questionable value for the diagnosis of the disease. =====*===== Sender: "Lloyd E. Miller" <[email protected]> Subject: Roxithromycin I came across this abstract in a recent search and think it is of some importance. The source is European - is there a difference in susceptibility of the European strains vs. the American strains?? Hansen K, Hovmark A, Lebech AM, Lebech K, Olsson I, Halkier-Sorensen L, Olsson E, Asbrink E Roxithromycin in Lyme borreliosis: discrepant results of an in vitro and in vivo animal susceptibility study and a clinical trial in patients with erythema migrans. Acta Derm Venereol (Stockh) 1992 Aug;72(4):297-300 A new semisynthetic macrolide roxithromycin was evaluated for its potential use in the treatment of Lyme borreliosis. Using a macro-dilution broth technique, Borrelia burgdorferi was shown to be susceptible to roxithromycin with a minimal bactericidal concentration (MBC) of 0.06-0.25 microgram/ml. A systemic B. burgdorferi infection was established in gerbils; a dosage of greater than or equal to 25 mg/kg/day roxithromycin for 10 days eliminated the infection. A single blind, randomized multicenter study was performed to evaluate the efficacy of roxithromycin 150 mg b.i.d. versus phenoxymethyl-penicillin 1 g b.i.d. for 10 days in patients with uncomplicated erythema migrans. The study was interrupted when 19 patients had enrolled because of five treatment failures. All 5 patients had received roxithromycin; three patients had persisting or recurrent erythema migrans, one developed a secondary erythema migrans-like lesion and severe arthralgia and one developed neuroborreliosis. B. burgdorferi was isolated from skin biopsies after roxithromycin therapy from two patients with persistent erythema migrans and both isolates were still highly susceptible to roxithromycin (MBC = 0.03 microgram/ml). No treatment failures were seen in 10 patients treated with phenoxymethyl-penicillin. Roxithromycin is thus not recommended for treatment of Lyme borreliosis. Institutional address: Department of Infection-Immunology Statens Seruminstitut Copenhagen Denmark. IV. ***** PARTIAL BIBLIOGRAPHY FOR FURTHER READING ***** Many people have asked about the so called "ideal" Lyme treatment. There is no such ideal treatment. However, Dr. Philip W. Paparone, Director and Chief of Infectious Diseases at the Atlantic City Medical Center, Pompona, NJ, and Shore Memorial Hospital, Somers Point, NJ, has created some guidelines. They have been published in a Modern Medicine paper entitled "There is no standard approach to Lyme Disease: Your management must be individualized." [Modern Medicine, Sept 1992, 60;95-111]. For a summary of the last 10 years of LD research and epidemiology, you might wish to look at Dr. Willy Burgdorfer's "decade in review" paper. Dr. Burgdorfer is the discoverer of Bb and an honorary researcher at the NIH. The paper is entitled "Lyme Borreliosis: Ten Years after Discovery of the Etiological Agent, Borrelia burgdorferi." [Infection July/August 1991, Vol 19 No. 4;257/61-262/66] 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] All are encouraged to submit questions, news items and commentaries, regardless of expertise. BACK ISSUES: Send a memo to [email protected] in the body, type: get LymeNet-L/Newsletters x-yy (where x=vol # and y=issue #) example: get LymeNet-L/Newsletters 1-01 (will get vol#1, issue#01) ----------------------------------------------------------------------------- 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) Chief Proofreader: Ed Mackey <[email protected]> ----------------------------------------------------------------------------- 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. |