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[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: 1.6
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@StrongGroup.com>

See reader questions & answers on this topic! - Help others by sharing your knowledge
         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@StrongGroup.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 <milo7@aol.com>, Art Doherty <doherty@utech.net>,
or Jonathan Strong <jrs@StrongGroup.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 <milo7@aol.com>.

Last updated on 17 July 2000       

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