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Subject: [sci.med.diseases.lyme] Lyme Disease Newsgroup FAQ

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Archive-name: medicine/lyme-disease/ld-faq Posting-Frequency: quarterly Last-modified: 2000/07/17 Version: 1.5 URL: http://www.geocities.com/HotSprings/Oasis/6455/newsgroup-faq.html Maintainer: Milo7 <milo7@aol.com> and Art Doherty <doherty@utech.net> and Jonathan R. Strong <jrs@strong.com>
Frequently Asked Questions (FAQ) for sci.med.diseases.lyme (The Lyme Disease Newsgroup) Lyme disease is a serious bacterial illness caused by a tick bite. It affects humans and animals, and can be found throughout the world. Table Of Contents Part 0: Administrative Issues 0.00 Introduction 0.01 Disclaimer 0.02 Where to get the current version of this FAQ Part 1: General Information 1.01 What is Lyme Disease (LD)? 1.02 What is an Erythema Migrans (EM)? 1.03 Why is the illness called "Lyme disease"? 1.04 How widespread is Lyme disease? Part 2: Medical Issues 2.01 How do I find good medical care for Lyme disease? 2.02 How do I find a local Lyme disease support group? 2.03 What symptoms are used to diagnose Lyme disease? 2.04 What tests are used to support a clinical diagnosis of Lyme disease? 2.05 Can I have Lyme disease if my blood tests are negative? 2.06 What is the CDC case surveillance definition of Lyme disease? 2.07 What are common misdiagnoses of Lyme disease? 2.08 What are current clinical views on Lyme disease? 2.09 Where can I find information on ongoing Lyme disease clinical trials? 2.10 What current treatments are available for Lyme disease? 2.11 What is a Jarisch-Herxheimer reaction? 2.12 How long does Lyme disease last? 2.13 Can Lyme disease affect pregnancy? 2.14 Can children get Lyme disease? 2.15 Can pets get Lyme disease? 2.16 Can insects other than ticks transmit Lyme disease? 2.17 Can Lyme disease cause depression or other psychiatric disorders? 2.18 Can people die from Lyme disease? Part 3: Health Insurance and Disability Issues 3.01 What are my options if my insurer refuses to cover treatment? 3.02 Where can I find help with social security and/or disability issues? Part 4: Lyme Disease Information Resources 4.01 What books on Lyme disease are available? 4.02 What newsletters and journals on Lyme disease are available? 4.03 What Lyme disease resources are available on the Internet? 4.04 What national, non-profit Lyme disease organizations are there? Part 5: Additional Information 5.01 What are tick-borne co-infections? 5.02 How can one prevent getting Lyme disease? 5.03 What is the proper way to remove a tick? 5.04 When is Lyme Disease Awareness Month? 5.05 Where can I find out about the Lyme disease vaccine(s), including information on safety and efficacy? 5.06 Where do I report vaccine adverse reaction(s)? Appendix 1. Common abbreviations and/or acronyms -------------------------------------- FAQ for the Lyme Disease Newsgroup Part 0: Administrative Issues 0.00 Introduction Information in the Lyme disease FAQ, version 1.5, July 17, 2000, was compiled by Milo7 (Milo7@aol.com), Art Doherty (doherty@utech.net), and Jonathan R. Strong (jrs@strong.com), and was created on behalf of the Lyme disease newsgroup: sci.med.diseases.lyme. Readers may redistribute or quote this document for non-commercial purposes provided that they include: an attribution to sci.med.diseases.lyme; the FAQ's version number; and the website where this FAQ may be retrieved (see Section 0.03). For any other use, please contact: Milo7@aol.com, doherty@utech.net, or JRS@strong.com. This document answers Frequently Asked Questions (FAQ) about Lyme Disease (LD). The newsgroup sci.med.diseases.lyme is intended for discussion about many aspects of Lyme disease, as experienced by patients, their caregivers, friends and family members, doctors and other medical professionals involved with the illness. It is particularly helpful for those who wish to learn about Lyme disease symptoms, treatment options, and prevention strategies. Anyone with an interest in Lyme disease is free to post, as this newsgroup is designed to foster dialogue between Lyme disease patients from all parts of the world, and provide an open forum for the exchange of international medical, scientific, and lay information. Constructive criticism and on-topic debate, general understanding and support, are encouraged. Topics discussed include: * Questions regarding any aspect of Lyme disease * Disease symptoms, presentations * Current research findings * Current treatments, both conventional and alternative * Coping strategies * Social and political issues regarding Lyme disease * Insurance and disability issues regarding Lyme disease Material PROHIBITED includes: * Commercial advertisements * Posting names of doctors (without their consent) * Flames, spam, name-calling, discrimination, and abusive behavior 0.01 DISCLAIMER The information in this FAQ is developed and provided by patients. It represents an accumulation of knowledge by people who are NOT medical professionals. As useful as the material presented in this FAQ may be, it must NOT be considered to be medical advice, and must NOT be used as a substitute for medical advice. It is important that anyone who has, or thinks he/she may have, Lyme disease should consult with a licensed health care practitioner who is familiar with the illness. 0.02 Where to get the current version of this FAQ USENET: This FAQ is posted regularly to the newsgroup: sci.med.diseases.lyme It is also available online at: Frequently Asked Questions (FAQ) for sci.med.diseases.lyme http://www.geocities.com/HotSprings/Oasis/6455/newsgroup-faq.html Part 1: General Information 1.01 What is Lyme Disease (LD)? Lyme Disease (LD) is a bacterial infection caused by a spirochete (a spiral- or corkscrew-shaped microbe) named Borrelia burgdorferi (Bb). There are about 100 US and 300 worldwide strains of the bacterium. Spirochetes (pronounced SPY-roh-keets) are maintained by animals in nature, where certain ticks bite infected animals, ingest the bacteria, and then transmit the infection through subsequent feedings. Humans and pets are incidental hosts to infected ticks. Ticks can be found anywhere--woods, seashore, even in your own backyard. They can bite year-round, although peak tick season in the northeastern United States is April to September; and on the West coast is November to April. Lyme disease is a potentially serious and debilitating illness, affecting not just the joints, but all parts of the body. The disease produces many symptoms (See 2.03, 2.14, and 2.17), several of which can imitate other diseases (See 2.06). No two cases of Lyme disease are exactly alike. This is due to unique differences in each person's immune response; variations in the strains of bacteria; the possibility of active co-infections (See 5.01); and/or the intensity of a given bacterial load. (Information from the Lyme Disease Foundation) For pictures of Borrelia burgdorferi (the Lyme disease bacterium): Borrelia burgdorferi (photos) http://www.lyme.org/gallery/b_burgdorferi.html For photos of Lyme disease ticks: Ixodes scapularis (formerly, the deer tick) http://www.ent.iastate.edu/imagegal/ticks/iscap/defaulttn.html Large Photo of Tick http://library.advanced.org/11743/english/schad/zbesche.htm Tick Biology http://entomology.ucdavis.edu/faculty/rbkimsey/tickbio.html LDF: See section LD/Ticks http://www.lyme.org/index2.html 1.02 What is an Erythema Migrans (EM)? The Erythema Migrans or EM, commonly referred to as the Lyme disease "bull's-eye" rash, is considered pathognomonic (or diagnostic) of Lyme disease. This skin rash varies in size and shape; often has expanding rings of varying shades, but can be uniformly discolored. It may be hot to touch, it may even itch. It may change in color from reddish to purple to bruised looking, and it can seldom be necrotic (crusty/oozy). Multiple rashes per bite and multiple rashes not at the site of the bite may indicate disseminated disease. Lyme disease usually begins with an EM rash and flulike symptoms (headache, stiff neck, fever, muscle aches, or fatigue). The EM can appear days to weeks after the bite. However, only 60% of light-skinned patients notice this rash. And recent studies indicate that as many as 40%-55% of people never present with a rash at all, but with a flulike illness as the first sign of onset of LD. If you get an EM after a tickbite (and/or multiple rashes), it is advisable to seek prompt medical attention. In addition, try to take a color photograph of the rash. In the photo, include a ruler next to the rash for measurement, and the date of the EM. You may need this information later on as a visual record of the EM; for your medical records; for future health insurance reimbursement, etc. Currently, as part of the criteria for its case surveillance definition of Lyme disease, the Centers for Disease Control (CDC) acknowledges only EM rashes that are 5 cm (2 inches) or larger in size. This criterion is designed strictly for CDC's epidemiologic purposes, and not for the clinical diagnosis of Lyme disease. It should be emphasized that Lyme disease rashes appear in different shapes and sizes, including rashes smaller than 5 cm (2 inches). For pictures of Lyme disease EM rashes: Picture Gallery - Rashes (LDF) http://www.lyme.org/gallery/rashes.html Photos of Lyme disease rash (Texas Dept of Health) http://www.r09.tdh.state.tx.us/zoonosis/lymepict.html The bullseye (EM, or Erythema Migrans) rash http://ourworld.compuserve.com/homepages/frankd/emrash.htm 1.03 Why is the illness called "Lyme disease?" Lyme disease is named after a small coastal town in Connecticut called Lyme, where in 1975, a woman named Polly Murray brought to the attention of Yale researchers an unusual cluster of more than 51 cases of mostly pediatric arthritis. In 1977, Dr. Allen Steere and Yale colleagues identified the new clinical entity and named it "Lyme arthritis." In 1979, the name was changed to "Lyme disease," when Steere and colleague Dr. Steven Malawista discovered additional symptoms linked to the disease: problems of neurologic involvement and severe fatigue. It wasn't until 1982 that the causative agent of the disease was discovered by Dr. Willy Burgdorfer. Burgdorfer published a paper on the infectious agent of Lyme disease, and earned the right to have his name placed on the Lyme disease spirochete now known as Borrelia burgdorferi. Borrelia burgdorferi (Bb) has since been the official taxonomic name of the Lyme disease spirochete. (Information from Forschner-Vanderhoof K., Everything You Need to Know About Lyme Disease) 1.04 How widespread is Lyme disease? Currently, Lyme disease can be found throughout the US, and on every continent in the world. Infection of both people and animals is worldwide. In the United States, the Centers for Disease Control (CDC) provide a state-by-state count of Lyme disease cases. Cases are based on reports filed by physicians to each state health department. Because many physicians do not file the necessary paperwork, cases of Lyme disease may be seriously underreported. CDC officials currently acknowledge that there is "considerable underreporting" of Lyme disease. With about 17,000 cases reported in 1998, the CDC admits that the actual figure may be easily 10 times that amount. For comprehensive overview of LD epidemiology in the US and Canada: Lyme disease in the United States and Canada http://www.geocities.com/HotSprings/Spa/6772/lyme.html For a list of CDC Reported Cases of LD from 1989-1998 (based strictly on the CDC's Case Surveillance Definition of LD): CDC-reported Cases of LD 1989-1998 http://www.cdc.gov/ncidod/dvbid/Ldss2_aug99.htm For a weekly count of CDC-surveillance cases of LD, see the CDC's "Morbidity and Mortality Weekly Report," under, "Notifiable Diseases/Deaths in Selected Cities Weekly Information": Morbidity and Mortality Weekly Report http://www2.cdc.gov/mmwr/mmwr_wk.html For information on international cases of Lyme disease: International Links on Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/international-links.html Part 2: Medical Issues 2.01 How do I find good medical care for Lyme disease? To find good medical care for Lyme disease, it is crucial to locate a doctor who is educated about Lyme disease, and experienced in treating this complex illness. Such physicians are referred to in the Lyme disease community as Lyme-literate MD's (LLMD), and can be found through the help of Lyme disease support groups (See 2.02), or by referrals from the Lyme Disease Foundation (LDF) in Hartford, CT. The LDF will charge a small fee for doctor referrals and can be reached at (800) 525-2000 by telephone, or (800) 886-LYME (5963), a 24-hour national hotline telephone. 2.02 How do I find a local Lyme Disease Support Group? To find a local Lyme Disease Support Group (LDSG) simply visit the LymeNet website and search under the section called, SUPPORT GROUPS: The Lyme Disease Network http://flash.lymenet.org/ If the nearest support group is too far away, consider contacting the leader of that group to ask if he/she may know of any new start-up groups closer to your town. In addition, you can reach the Lyme Disease Foundation (LDF) by E-mail: Lymefnd@aol.com or by telephone: (800) 525-2000; 24-hour national hotline telephone: (800) 886-LYME (5963). The LDF will have current listings of support groups and doctors. 2.03 What symptoms are used to diagnose Lyme disease? For comprehensive lists of Lyme disease symptoms: The Lyme Disease Foundation (LDF) (See Diseases/LD/Symptoms of LD) http://www.lyme.org/ The Lyme Disease Network (See Overview section) http://flash.lymenet.org/ Dr. J. Burrascano's Checklist (See Diagnosing Lyme Disease section) http://dwp.bigplanet.com/eojlyme/data/folders/Lyme%20Treatment%20Guidelines/Lyme%20Guidelines%20May%202000.htm 2.04 What tests are used to support a clinical diagnosis of Lyme disease? Lyme disease is a CLINICAL DIAGNOSIS, a diagnosis based primarily on a doctor's judgment of a patient's presentation of signs and symptoms and history of illness, and secondly supported by laboratory tests. Since there is currently no gold-standard diagnostic test for Lyme disease, and existing tests for Lyme disease remain unreliable, laboratory testing serves as an adjunct to the doctor's clinical diagnosis of Lyme disease. For information on laboratory testing: The LDF (See Diseases/LD/How is LD diagnosed?) http://www.lyme.org/ Testing for Lyme Disease - Links http://www.geocities.com/HotSprings/Oasis/6455/testing-links.html 2.05 Can I have Lyme disease if my blood tests are negative? As explained in Forschner-Vanderhoof, K., Everything You Need to Know About Lyme Disease, p.67: It is possible to have Lyme disease even if your laboratory tests are negative. This is because a negative test can simply mean that the laboratory did not find any measurable Lyme disease antibodies in your sample(s). Other reasons include: 1) Your blood sample was taken too soon after infection for your immune system to have mounted a detectable response. An antibody response is rarely measurable when the EM rash first appears. 2) You are producing detectable levels of antibody, but the laboratory made a mistake. 3) You are producing antibodies to a strain of Borrelia burgdorferi (Bb) that the laboratory cannot detect. 4) You are producing antibodies, but they are bound to the Lyme disease bacterium (creating what is called a complexed antibody) without enough that are free-floating and readily detectable. 5) Your immune system may be compromised and is not responding properly to the bacterial invasion. 6) By taking antibiotics early in the disease (or for another recent or concurrent illness), you have aborted your immune system response. (This is not necessarily bad because the immune response does not always eradicate Bb anyway.) 7) The bacterium has changed its make-up, and your immune system has not noticed it. 8) The bacterium is cloaking itself within an immune system cell, limiting your body's capacity to identify and combat it. 2.06 What is the CDC case surveillance definition of Lyme disease? The CDC's case surveillance definiton of Lyme disease can be found at: CDC Division of Vector-Borne Infectious Diseases: Lyme Disease: Introduction http://www.cdc.gov/ncidod/dvbid/lymeinfo.htm 2.07 What are common misdiagnoses of Lyme disease? Common misdiagnoses of Lyme disease include, but are not limited to: Alzheimer's Disease (AD) Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig's Disease Attention Deficit Disorder/Attention Deficit Hyperactivity Disorder (ADD/ADHD) Chronic Fatigue Immune Dysfunction Syndrome/Chronic Fatigue Syndrome (CFIDS/CFS) Fibromyalgia Guillain-Barre Syndrome Juvenile Rheumatoid Arthritis (JRA) Lupus Multiple Sclerosis (MS) Lyme disease can also imitate many psychiatric and neurologic disorders including: Anorexia Nervosa Dementia Manic depression Obsessive-Compulsive Disorder (OCD) Panick Attacks Paranoia Schizophrenia Syphilis Tourette's Syndrome For information on common misdiagnoses of Lyme disease: Lyme Disease Misdiagnosed As... http://www.geocities.com/HotSprings/Spa/6772/lyme-misdiagnosed-as.html 2.08 What are current clinical views on Lyme disease? For an overview of current clinical views of Lyme disease: Infectious Diseases Conference Summaries - Lyme Disease 2000 13th Scientific Conference on Lyme Disease and Other Tick-Borne Diseases Farmington CT, March 25 - 26, 2000 http://www.medscape.com/medscape/CNO/2000/LymeCS/public/index-Lyme.html 12th International Conference on LD (Part 1) http://id.medscape.com/Medscape/CNO/1999/lyme/public/Stories.cfm?conference_id=21&day_num=1 12th International Conference on LD (Part 2) http://id.medscape.com/Medscape/CNO/1999/lyme/public/Stories.cfm?conference_id=21&day_num=2 Lyme Disease: The Sensible Pursuit Of Answers, Kenneth B. Liegner, MD http://www.x-l.net/Lyme/li.htm For a recent look at ongoing scientific controversy in Lyme disease: The Dirty Truth Behind LD Research http://www.fairfieldweekly.com/articles/lymedisease.html Germ Warfare by Rusty Unger, New York Magazine, 02/28/00 http://www.nymag.com/page.cfm?page_id=2225 For clinical perspectives on "Persistence or Relapse of Lyme disease": Persistence or Relapse of Lyme Disease - An Annotated Bibliography http://www.geocities.com/HotSprings/Oasis/6455/persistence-links.html 2.09 Where can I find information on ongoing Lyme disease clinical trials? Welcome to NY State Psychiatric Institute http://www.columbia-lyme.org/dept/nyspi/index.html NIH Awards $4.7M to Columbia U. to study Chronic Lyme Disease, Dr. Brian Fallon http://www2.LymeNet.org/domino/news.nsf/UID/FallonNIHGrant NIH Chronic Lyme Disease Treatment Study Protocol http://www.niaid.nih.gov/dmid/lymeprotocol.htm NIAID's Chronic Lyme Disease Study: Questions & Answers http://www.niaid.nih.gov/dmid/lymeqa.htm NIH Chronic LD Study--Archive http://www.geocities.com/HotSprings/Oasis/6455/nih-study-links.html 2.10 What current treatments are available for Lyme disease? Lyme disease is a bacterial infection currently treated with a variety of antibiotics. These may include drugs delivered orally, or by intravenous or intramuscular routes. Oral antibiotics include: Doxycycline Tetracycline Amoxicillin Minocycline Ceftin Biaxin Suprax Zithromax Intravenous antibiotics include: Rocephin Claforan Primaxin Azithromycin (Zithromax) Intramuscular antibiotics include: Bicillin Rocephin The 13th edition of Dr. Joseph J. Burrascano's protocol for the diagnosis and treatment of Lyme disease and related tick-borne illnesses, called, "Advanced Topics on Lyme Disease," contains information on antibiotics under the section called Treatment Guidelines Advanced Topics in Lyme Disease, Joseph J. Burrascano Jr., M.D., May 2000 http://dwp.bigplanet.com/eojlyme/data/folders/Lyme%20Treatment%20Guidelines/Lyme%20Guidelines%20May%202000.htm Antibiotics and Lyme Disease - Links http://www.geocities.com/HotSprings/Oasis/6455/antibiotics-links.html 2.11 What is a Jarisch-Herxheimer reaction? A Jarisch-Herxheimer reaction (J-H reaction) is an exacerbation of a patient's Lyme disease symptoms shortly after the introduction of an antibiotic. The antibiotic kills off or "lyses" the bacteria and when it does, bacteria release toxins into the patient's system. This reaction is similar to that seen during treatment of the spirochetal illness, syphilis. Once antibiotics are introduced, a patient with a J-H reaction will actually feel worse before feeling better. Information on the Jarisch-Herxheimer reaction (commonly referred to by LD patients as a "Herx" or "Herxheimer") can be found at: Jarisch-Herxheimer Reaction and Lyme Disease - Links http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html#J-H 2.12 How long does Lyme disease last? If treated early and promptly at the onset of illness, Lyme disease symptoms usually resolve. If left untreated or inadequately treated, the disease can progress to a more complicated chronic form. According to the US Centers for Disease Control (CDC) complications of untreated early-stage Lyme disease include: 40%-60% joint disease; 15%-20% neurologic disease; 8% carditis; and 10% or more patients being hospitalized, some with chronic debilitating conditions. Debate in the medical community exists over whether Chronic Lyme Disease (CLD) is due to persistent bacterial infection or to the body's ongoing autoimmune response to the initial infection. Much international research, including a current clinical study at the US National Institutes of Health's National Institute of Allergy and Infectious Diseases (NIH/NIAID), is focused on defining the nature of, and appropriate treatment for, Chronic Lyme Disease (See 2.09). Persistence or Relapse of Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html#persistence NIAID's Chronic Lyme Disease Study: Questions & Answers http://www.niaid.nih.gov/dmid/lymeqa.htm 2.13 Can Lyme disease affect pregnancy? Lyme disease can potentially adversely affect pregnancy. In 1985, researchers published the first proof of maternal-fetal transmission of Borrelia burgdorferi (Bb): A baby died shortly after birth and Bb spirochetes were found in the infant's spleen, kidney, and bone marrow. (Schlesinger P, Duray P, Burke B, Steere A, Stillman A. Maternal-fetal transmission of the Lyme disease spirochete Borrelia burgdorferi. Annals of Internal Med. 1985:(Vol 103) 67-68.) To date, miscarriage, premature birth, stillbirth, neonatal deaths (rare), and congenital Lyme disease have all been described in the medical literature. For more information: Pregnancy and Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/pregnancy-links.html LD: Abstracts on Pregnancy & Fetus http://www.x-l.net/Lyme/FetalLD97.htm Abstracts (from 1980s) LD & Pregnancy http://www.sky.net/~mary/pregindex.html See also: Gardner, MD, Tessa. "Lyme Disease," Chapter 11, in Infectious Diseases of the Fetus and Newborn Infant. 4th edition, Jack S. Remington, Jerome O. Klein, eds. Philadelphia: Saunders, 1995, pp. 447-528. 2.14 Can children get Lyme disease? According to the CDC's Division of Vector-Borne Infectious Diseases (DVBID), children aged 0-14 years are at highest risk for acquiring Lyme disease. This is likely due to their recreational activity in backyards, woods, parks, on school playing fields, as well as through daily contact with family (tick-carrying) pets. The presentation of Lyme disease in children is frequently characterized by symptoms including: backache; sleepiness; memory problems; pronounced difficulty concentrating (which is commonly misdiagnosed as a manifestation of Attention Deficit Disorder (ADD)); stomach pain (50% complain of this); dramatic mood swings and irritability; chest pain; joint pain primarily in the knees, wrists, and ankles; sore throats; heart palpitations; tingling or numbness; rashes that come and go; letter and number reversals; eye pain (caused by swelling of the optic nerve); weakness in a limb; and Bell's palsy (facial paralysis). For more information on Lyme disease in children: Children and Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/children-links.html Neurologic Manifestations of Lyme Disease in Children http://www2.lymenet.org/domino/file.nsf/UID/pietrucha Fairfield County Weekly Article, "Erin's World" http://www.fairfieldweekly.com/articles/kidlyme.html 2.15 Can pets get Lyme disease? The Lyme Disease Foundation states that pets can get Lyme disease, and the illness can affect individual pets quite differently. Some animals may display few or no symptoms; others may develop fever, loss of appetite, painful joints, lethargy, and vomiting. If left untreated, the spirochete may damage the eyes, heart, kidneys, and nervous system. Lyme disease has been diagnosed in dogs, cats, horses, goats, and cattle. Other species may also be at risk. For more information, contact the Lyme Disease Foundation (LDF) and request their free brochure titled, "Lyme Disease & Pets." Lyme Disease Foundation, One Financial Plaza, Hartford, CT 06103, or 24-hour Hotline: 1-800-886-LYME (5963), or E-mail: Lymefnd@aol.com 2.16 Can insects other than ticks transmit Lyme disease? Insects or Vectors, Other Than Ticks, and Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/insects-links.html 2.17 Can Lyme disease cause depression or other psychiatric disorders? In 1994, a peer-reviewed article that surveyed the international medical literature on psychiatric aspects of Lyme disease, found that, "depressive states among patients with late Lyme disease are fairly common, ranging across studies from 26%-66%." In addition, results showed that "Up to 40% of patients with Lyme disease develop neurologic involvement of either the peripheral or central nervous system [CNS]. Dissemination to the CNS can occur within the first few weeks after skin infection. Like syphilis, Lyme disease may have a latency period of months to years before symptoms of late infection emerge. Later, encephalomyelitis and encephalopathy may occur. A broad range of psychiatric reactions have been associated with Lyme disease including paranoia, dementia, schizophrenia, bipolar disorder, panic attacks, major depression, anorexia nervosa, and obsessive-compulsive disorder." (Fallon BA, Nields JA. Lyme Disease: A Neuropsychiatric Illness. Am J Psychiatry 1994;151:1571-1583.) Further research led by Brian A. Fallon, MD, Associate Professor of Clinical Psychiatry, Columbia University College of Physicians and Surgeons, and Director of the Lyme Disease Research Program at New York State Psychiatric Institute, has since documented a wide range of neuropsychiatric symptoms associated with Lyme disease including: Major depression; extreme fatigue; emotional instability (crying easily); increased irritability and mood swings; sensitivity to light (photophobia); sleep disturbances (insomnia; too much sleep); memory problems; getting lost in familiar places; dyslexia-type reversals (of numbers and letters); significant loss of libido; night terrors; extreme anxiety and panic attacks; ferocious nightmares; suicidal thoughts and attempts; mental fog; disorientation; feelings of rage; violent thoughts; abnormalities of taste; abnormalities of smell; heightened sensitivity to vibrations; heightened sensitivity to sound (including hyperacusis, a collapsed tolerance to environmental noise); depersonalization; spatial problems; and appetite changes (bulimia, anorexia). For information on neuropsychiatric manifestations of Lyme disease: Fallon et al. The Neuropsychiatric Manifestation of Lyme Borreliosis http://www.x-l.net/Lyme/1falon.htm Fallon et al. Late-stage Neuropsychiatric Lyme Borreliosis http://www.x-l.net/Lyme/Fallon95.htm The Neuropsychiatric Manifestations of Lyme Disease, Robert C. Bransfield MD http://www.mentalhealthandillness.com/lymeframes.html 2.18 Can people die from Lyme disease? People have died from Lyme disease, or from complications of the illness. For more information, see: Fatalities and Lyme disease http://www.x-l.net/Lyme/fatal_cites.htm Fatalities and Lyme disease - Links http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html#fatalities Part 3: Health Insurance and Disability Issues 3.01 What are my options if my health insurer refuses to cover treatment? Many helpful sites are available online: State Health Insurance Contacts http://www.naic.org/consumer/state/member.htm The Lyme Disease Network - (See LAW section) http://flash.lymenet.org/ The Center for Patient Advocacy http://www.patientadvocacy.org/main/index.html Families USA Foundation http://www.familiesusa.org/ Pro Bono Legal Listing http://www.abanet.org/legalservices/probono/home.html FindLaw: Legal Services Resources http://www.findlaw.com/14firms/legalaid.html Informal Guide to Appealing Health Insurance http://users.aol.com/jasonwolff/hmohelp.htm Cheryl's HMO/Disability Links http://www.aero-vision.com/~cheryl/insurance.html The HMO Page--Drs.Who Care http://www.hmopage.org/ People United for a National Health Plan http://www.his.com/~pico/nhian.htm Health Administration Responsibility Project (HARP) Home Page http://www.harp.org/ 3.02 Where can I find help with social security and/or disability issues? The frequently asked questions (FAQ) for Social Security can be found at: NOSSCR Online - Questions about Social Security http://www.nosscr.org/hallfaq.html#28 In addition, a Listserv (or free mailing list) called DISINISSUES, deals exclusively with problems regarding social security and disability. For subscribing information to DISINISSUES listserv: Disinissues - Discussion List for Disability http://www.cfids-me.org/disinissues/list.html The DISINISSUES Disability Benefits Info page, though geared towards people with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), provides helpful material for people with Lyme disease as well: The Disability Benefits Information Page http://209.133.10.27/disinissues/ Other useful sites include: Appealing Denials http://www.truemanlaw.com/appealin.htm Medical Necessity http://www.truemanlaw.com/newpage32.htm Cheryl's HMO/Disability Links http://www.aero-vision.com/~cheryl/insurance.html Part 4: Lyme Disease Information Resources 4.01 What books on Lyme disease are available? LymeNet offers a comprehensive selection of books on Lyme disease, with each title linked directly to Amazon.com. Simply access LymeNet and find the section called BOOKS: The Lyme Disease Network http://flash.lymenet.org/ 4.02 What Lyme disease newsletters and journals are available? LYME TIMES, a quarterly journal, and publication of the Lyme Disease Resource Center. Subscription rates: $25 US annual rate; $35 annual rate for Canada and Mexico; $40 other foreign countries for air mail. Payable in US funds only to: LDRC, P.O. Box 707, Weaverville, CA 96093. LYMELIGHT, a quarterly newsletter of the Lyme Disease Foundation. Subscription via: Friend of LDF membership donation of $25 The Lyme Disease Foundation http://www.lyme.org/ LYMENET (Electronic) NEWSLETTER, a free online newsletter. For subscription information: LymeNet Newsletter Info http://newsletter.lymenet.org/ SPOTLIGHT ON LYME, a free bimonthly newsletter of the Lyme Alliance. Subscription information, and archived past issues: Lyme Alliance, Inc http://www.lymealliance.org/ or Order copies by mail from: Lyme Alliance, Inc. P.O. Box 454 Concord, Michigan 49237 AMERICA ON LYME NEWSLETTER, E-mailed once a month for free. To subscribe, E-mail Woodi16@aol.com New subscribers receive a very informative pamphlet on Lyme disease. Prime Time Lyme Newsletter For membership of Lyme Association of Greater Kansas City, Inc. Family membership: $30 annually http://community.lawrence.com/info/LymeAssociation LymeSig Home Page http://ourworld.compuserve.com/homepages/frankd/lymesig.htm LymeTruth by Douglas Dodge http://www.lymetruth.org/ JOURNAL OF SPIROCHETAL AND TICK-BORNE DISEASES, a peer-reviewed quarterly, and journal of The Lyme Disease Foundation. For subscription information, see: Journal of Spirochetal and Tick-borne Diseases http://www.slackinc.com/general/jstd/jstdhome.htm The Lyme Disease Foundation http://www.lyme.org/ 4.03 What Lyme disease resources are available on the Internet? Internet: The Lyme Disease Foundation (LDF) http://www.lyme.org/ The Lyme Disease Network (LymeNet) http://flash.lymenet.org/ Lyme Disease Information Resource (LDIR) http://x-l.net/Lyme/ Lyme Alliance (LA) http://www.lymealliance.org/ Lyme Patient Action Committee (LPAC) http://pweb.netcom.com/~fletch14/LymePAC.html Lyme Disease Resource Center (LDRC) http://www.lymedisease.org/ Lyme Disease Association of New Jersey (LDANJ) http://members.xoom.com/LDANJ/ America On Lyme http://members.aol.com/ameronlyme/aolyme.html Lots of Links on Lyme Disease http://www.geocities.com/HotSprings/Oasis/6455/lyme-links.html CDC's Division of Vector-Borne Infectious Diseases (DVBID) http://www.cdc.gov/ncidod/publications/brochures/dvbid.htm NIH National Institute of Allergy and Infectious Diseases (NIAID) http://www.niaid.nih.gov/ NIH/NLM: MEDLINEplus: Lyme Disease http://medlineplus.nlm.nih.gov/medlineplus/lymedisease.html European Union Concerted Action on Lyme Borreliosis (EUCALB) http://www.dis.strath.ac.uk/vie/LymeEU/index.htm Pasteur Borrelia Biology page http://www.pasteur.fr/Bio/borrelia/Welcome.html USENET: Lyme disease newsgroup: sci.med.diseases.lyme Listservs: LYME-L - For information about LYME-L: Join or leave the LYME-L http://home.ease.lsoft.com/scripts/wa.exe?SUBED1=lyme-l&A=1 SPIROC-L, a research-oriented listserv focused on spirochete microbiology SPIROC-L: Spirochete Research Discussion Group http://www.tile.net/tile/listserv/spirocl.html Lymearduk, an LD listserv from the United Kingdom http://www.egroups.com/group/lymearduk/2.html? German-speaking discussion group accessed via: Beratende Mitarbeiter des Borreliose-Forumīs http://www.borreliose.de/forum/index.html 4.04 What national, non-profit Lyme disease organizations are there? Lyme Disease Foundation (LDF) One Financial Plaza Hartford, CT 06103 800-886-LYME Tel. 860-525-TICK Fax Lymefnd@aol.com Lyme Disease Foundation http://www.lyme.org/ Part 5: Additional Information 5.01 What are tick-borne co-infections? Tick-borne co-infections may be transmitted simultaneously with a Lyme disease tick bite, and can include: Babesiosis (a malaria-like infection caused by Babesia protozoa that parasitize red blood cells); Ehrlichiosis (a bacterial infection caused by several types of rickettsiae, which invade and kill white blood cells. There are two types of human ehrlichiosis: human granulocytic ehrlichiosis (HGE), and human monocytic ehrlichiosis (HME)). For more information on tick-borne co-infections: LymeNet - The New Lyme Disease http://www2.lymenet.org/domino/file.nsf/UID/guidelines#DIAGNOSTIC HINTS 5.02 How can one prevent getting Lyme disease? Lyme disease prevention guidelines are provided at the LDF website: The Lyme Disease Foundation http://www.lyme.org/ 5.03 What is the proper way to remove a tick? The Lyme Disease Foundation recommends these steps: To remove a tick properly: * Use fine-point tweezers to grasp the tick at the place of attachment--as close to the skin as possible. * Gently pull the tick straight out. Do not twist or squeeze it as you pull it out. * Place the tick along with a blade of grass or slightly dampened cotton ball in a small vial labeled with the person's name, address, and the date. * Have the tick identified and/or tested by a lab, health department, physician or veterinarian, if available. * Wash your hands and disinfect the tweezers. Disinfect the site of the bite as well. * Call your doctor to determine if treatment is indicated. Cautions: * Children must be told to seek adult help for tick removal. * If you must remove the tick with your fingers, use a tissue or a leaf to avoid direct contact with the infected tick fluids. * Do not prick, crush, squeeze, or burn the tick, as it may release infected fluids or tissue. * Don't try to smother the tick (e.g. petroleum jelly, nail polish) as the tick has enough oxygen to complete feeding. * If you wish to dispose of the tick, carefully fold it, sealed up, into a single piece of scotch tape and throw out. 5.04 When is Lyme Disease Awareness Month? Each year, May is officially recognized as Lyme Disease Awareness Month. During this month, national Lyme Disease Support Groups and advocacy organizations launch awareness campaigns to educate the public about Lyme disease. To find out what you can do to promote Lyme Disease Awareness this May, contact the LDF: The Lyme Disease Foundation http://www.lyme.org/ 5.05 Where can I find out about the Lyme disease vaccine(s), including information on safety and efficacy? Vaccine Information Site http://www.geocities.com/HotSprings/Spa/6772/vaccine.html 5.06 Where do I report vaccine adverse reaction(s)? Vaccine Adverse Event Reporting System (VAERS) http://www.geocities.com/HotSprings/Spa/6772/vaccine-resources.html FDA Vaccine Adverse Event Reporting System http://www.fda.gov/cber/vaers/vaers.htm Appendix 1. Common Abbreviations or Acronyms A Abx: Antibiotics Autoimmune disease: a disease in which the body's defense system malfunctions and attacks a part/parts of the body itself rather than foreign matter. B BBB (Blood Brain Barrier): a membrane that controls the passage of substances from the blood into the central nervous system. C CFIDS (also CFS, ME): Chronic Fatigue Immune Dysfunction Syndrome (Chronic Fatigue Syndrome; Myalgic Encephalomyelitis) CSF: Cerebrospinal fluid, the colorless liquid, consisting partially of substances filtered from blood and partially by secretions released from brain cells, that circulates around and through the cavities of the brain and spinal cord. CNS: Central nervous system. Cytokines: powerful chemical substances secreted by T cells. Cytokines are an important factor in the production of inflammation. D Demyelination: Damage caused to myelin by recurrent attacks of inflammation. Ultimately results in nervous system scars, called plaques, which interrupt communications between nerves and the rest of the body. Dx: Diagnosis E Encephalopathy: Changes in mood, memory, and sleep. F G H Human leukocyte antigens (HLAs): Antigens, tolerated by the body, that correspond to genes that govern immune responses. Also known as major histocompatibility complex. I Immunogobulin E (IgE): a class of immunoglobulin that function especially in allergic reactions. Immunogobulin G (IgG): an antibody-containing substance produced by human plasma cells in diseased central nervous system plaques. Immunogobulin M (IgM): antibodies that appear early in the immune response to be replaced later by IgG. J K L LLMD (Lyme-literate MD): a doctor educated about Lyme disease M N O OCD: Obsessive Compulsive Disorder P Paresthesias: Abnormal sensations such as numbness, prickling, or "pins and needles". Q R S Sx: Symptoms T Tx: Treatment U V W X Y Z -------------------------------------- Comments or questions concerning this page should be directed to Milo7@aol.com Last updated on 17 July 2000