Lyme disease
What is Lyme Disease?
Lyme disease is the most common vector-borne disease in the United States. It is a serious infection caused by spiral-shaped bacteria called spirochetes. There are several different kinds of spirochetes: the one that causes Lyme disease is called Borrelia burgdorferi and is a distant cousin to syphilis.
Recently scientists reported that Borrelia burgdorferi has been found to have come from Europe before the Ice Age. It has now been found on every continent except Antarctica and is often touted as one of the most complex organisms ever to be studied by man.
Borrelia burgdorferi-photo,CDC
Lyme disease can be transmitted to humans and animals by the bite of an infected tiny deer tick, also known as Ixodes Scapularis. Ticks that can carry Lyme disease have been identified in all 50 states and worldwide. Many scientists, doctors and patients believe that other ticks may play a role in transmitting Lyme disease to humans, as well, because the organism, Borrelia burgdorferi, has been detected in other tick species. Some reports indicate that transmission may not be likely by these other tick vectors; however, so many Bb strains that have been identified through molecular testing methods have not yet been cultured, thus have not yet been investigated. Much more research is needed in this area before scientists can determine with certainty whether any of these unstudied strains are being transmitted to humans by other ticks.
If infected, black-legged "deer ticks", Ixodes scapularis and Ixodes pacificus, may transmit Borrelia burgdorferi, also known as Lyme disease.
-photo CDC/PHIL
Although research has shown that the longer a tick is attached, the more likely it is to transmit a pathogen it may be carrying (and this makes sense); early Lyme disease studies documented some cases of transmission in only several hours. Additionally, removing a tick improperly can play an important role in contracting a tick-borne illness and, in our opinion, is not emphasized enough in the medical literature. In considering treatment, medical professionals may want to determine not only the length of time a tick was attached to a patient, but the method that was used to remove the tick. (See our PREVENTION page for recommendations about proper tick removal.)
Research shows that up to 50% of people infected with Lyme disease do not recall a tick bite. Some ticks that transmit Borrelia burgdorferi and other tick-borne diseases can be the size of a poppy seed, so people may be bitten and never even know it. This is why taking preventative measures to protect against tick bites to begin with is so important. Please check our PREVENTION page to learn more.
The Lyme disease bacteria can affect any system of the body and can cause a wide array of strange, often changing symptoms. Lyme borreliosis mimics symptoms of many other illnesses and is commonly misdiagnosed as Fibromyalgia, Multiple Sclerosis, Chronic Fatigue Syndrome, Amyotrophic lateral sclerosis (Lou Gehrig’s disease), Lupus, Parkinson’s disease, Rheumatoid Arthritis and others. Some studies have even found Lyme spirochetes in Alzheimer’s disease cases. To examine information about these illnesses and Lyme disease, please check PubMed Central’s website and search for Borrelia, spirochetes and/or Lyme disease and the named condition you would like more information about (for example: search for Lyme Disease and Multiple Sclerosis on the PubMed website).
Untreated or inadequately treated Lyme borreliosis may cause permanent damage and possibly persistent or chronic illness that may affect any organ system of the body. There are a substantial number of published, peer-reviewed research studies proving persistent Lyme disease. (Here is a report that lists seventy-three such studies and there are many more -see Persistence File http://www.lymeinfo.net/medical/LDPersist.pdf )
symptoms
Symptoms may begin (but not always) with an expanding red rash, called erythema migrans, which may appear at the bite site days to even weeks after a tick bite. This is sometimes seen in the pattern of a bull’s eye, but more frequently it is not. Sometimes it is mistaken for a spider bite or skin infection and multiple lesions may occur.
This rash confirms Lyme disease infection and is reportable as a case without any other symptoms or positive blood work in Lyme endemic counties, according to the CDC's case definition. (See Georgia Division of Public Health for the list of Georgia counties from years past which have met the CDC's case definition criteria for a Lyme endemic county by having documented at least two lab-confirmed Lyme disease cases using the strict CDC 2-tiered testing methods. You may also click here.)
Unfortunately, some studies have indicated that between 40 to 50% of patients never see a rash at all, making diagnosis much more difficult because Lyme disease symptoms can mimic so many other illnesses. It is highly recommended that if you do get a rash and/or other symptoms after a tick bite; don't delay! Take photographs of any rash and visit your doctor immediately to document the rash and to obtain treatment.
-photos, cdc
Visit the Lyme Disease Association to see more photos of Lyme disease rashes by clicking the link below.
Lyme rashes/Lyme Disease Association
Other early symptoms may be mild or vague at first and might be overlooked or mistaken for another illness, such as a virus or flu. Fever, fatigue (often severe), swollen glands, a feeling of spaciness or dizziness, muscle aches and stiffness, sore or stiff neck and jaw are all commonly reported. Symptoms can wax and wane and seem to change daily, sometimes even hourly.
The swelling of a large joint, such as a knee or elbow, occurs in approximately 20 to 30% of patients. Joint and tendon pain that often migrates and muscle and bone pain are also common complaints.
When the Lyme borrelia invade the nervous system, the disease may become more difficult to treat. Among other symptoms, patients may develop Bell’s Palsy (partial facial paralysis), headaches, irritability, anxiety, meningitis, “brain fog” and/or memory loss, lightheadedness, “pins and needles” sensations, stabbing and shooting pains, and sleep disturbance. Sometimes white lesions on the brain or spine are caused by Lyme borreliosis.
A patient with partial facial paralysis, or Bell's Palsy, caused by Lyme disease.
- photo, CDC
Chest pain, palpitations and other cardiac symptoms may be present. Lyme borreliosis can affect a patient’s vision, hearing, digestive system, respiratory system and more. This is the reason Lyme disease is often referred to as “the new great imitator.” Many doctors familiar with Lyme disease find it helpful to look for patterns of a multi-systemic infection in clinically evaluating and diagnosing patients.
"This surveillance case definition was
developed for national reporting of
Lyme disease; it is not intended to be
used in clinical diagnosis."
[emphasis added]
From the CDC Lyme Disease 2008 Case Definition
testing for lyme disease
A technician places a Western Blot strip in a test tray. If present, antigens may bind to this sheet and later be detected. - photo, CDC
Currently, there is no test that can rule out Lyme disease. There is also no test that can tell whether a person who has been treated for Lyme has been cured of the infection. Testing is problematic: both false positives and false negatives occur, although it has been reported that false negatives are far more common.
Research studies indicate that between 20 to 50 percent of people who actually have Lyme disease test negative. (Among some of the most troubling recent studies is one that found current testing methods miss 88 out of 200 positive Lyme disease cases; another 2005 study reportedly found the testing methods even worse, missing 3 out of 4 positive cases.)
If a person is infected with Lyme disease but has a negative antibody test, it is called Seronegative Lyme Disease. There are ample published research studies documenting this phenomenon in both Lyme disease and syphilis. (Linked below is a collection of 103 research study abstracts demonstrating Seronegative Lyme disease and/or other spirochetal infections: See Seronegativity file - http://www.lymeinfo.net/medical/LDSeronegativity.pdf
Many factors are thought to contribute to false negative test results. In early infection, patients may not test positive because it can take up to six weeks before antibodies against the disease build to a detectable level. Additionally, individual immune systems and the antibody levels they produce against the invading organism can vary. It is also speculated that due to Bb strain variances, the tests may not be picking up all cases. Even whether or not the patient has taken antibiotics (even one!-see longtime Lyme disease researcher Dr. David Volkman’s presentation on the IDSA website) can affect test results.
Western Blot test
-photo CDC
If a patient tests negative but has Lyme disease, it doesn’t mean that patient doesn’t require treatment. The patient still deserves treatment and should not be left to suffer due to the problems with testing methods. This is why it is so often stressed that Lyme disease is a clinical diagnosis...one based on signs, symptoms and patient history.
Whether a case meets narrow CDC
reporting criteria should
never play a role in determining
whether a patient deserves
treatment.
Like its cousin syphilis, Lyme disease is a serious spirochetal illness that can cause permanent, crippling damage. It is because of this that many doctors choose to treat patients based on medical history and clinical presentation, even though sometimes the patient may not have positive serology. Doctors choose to treat when symptoms are present to try to prevent further and/or severe problems from developing. Taking a “wait and see” approach to see if things get better is not advised if symptoms are present. Numerous scientists and doctors believe that active symptoms are indicative of active infection, particularly after examining all of the worldwide research evidence. They believe that if not adequately treated, chronic Lyme and/or permanent damage may ensue.
treatment
Oral antibiotics are usually administered to treat early stage Lyme disease. Later stages may require IV antibiotics and longer treatment courses. Relapses may be common, particularly if the disease is not treated properly at the onset of infection.
Please see our RESOURCES page for further information about Lyme disease testing and treatment.
"Not all LD patients present with typical manifestations; other conditions might be confused with LD and laboratory testing might be inaccurate."
Centers for Disease Control MMWR, January 18, 2002 / 51(02);29-31
Link to important medical literature about Lyme disease [click below]:
Lyme Info's Medical Literature Summaries
(Includes compilations of 70 research abstracts documenting the persistence of Lyme bacteria despite antibiotic therapy and 103 abstracts documenting Seronegative Bb and/or other spirochetal illnesses.)
In the headlines:
highly virulent mutations and a look at future Lyme disease testing
Recently Dr. Benjamin Luft, M.D., Professor of Medicine at Stony Brook University Medical Center and longtime Lyme disease researcher, worked with colleagues on an investigation that discovered that four highly virulent mutations of Borrelia burgdorferi (the Lyme disease bacteria), may account for why Lyme disease cases have increased so dramatically over the last 20 years. Luft’s findings, first reported in Emerging Infectious Diseases (July 2008), could also help us understand why current Lyme disease testing methods miss such a large percentage of confirmed positive Lyme cases, as reported in many studies, including a 2005 study from Johns Hopkins.
In an interview posted on the Psychology Today website, Cure Unknown author, Pam Weintraub, asks Dr. Luft more about his research:
“What we will find,” says Ben Luft of Stony Brook, “are proteins we never tested for on our ELISAs and Western blots—proteins we were never even aware of. But they will be the critical markers for invasive, infectious Lyme disease. Perhaps people who test negative on the old tests will become positive when we look for the right markers,” he adds.”
In a New Haven Register newspaper article from August 29, 2008, science editor Abram Katz discussed Luft's findings with Louis Magnarelli:
“Louis A. Magnarelli, director of the Connecticut Agricultural Experiment Station, which has done basic research on Lyme disease and ticks, said the research, published in the Journal of Emerging Infectious Diseases, is interesting and possibly important.
“This is a question that has been unanswered for 20 years,” he said. “Some patients have a severe course and others have mild cases. Are the people genetically different or are the strains genetically different? I think the answer is ‘both,’” Magnarelli said.”
In considering Dr. Luft’s findings and the fact that scientists in the Southeast have identified so many strains of Borrelia burgdorferi from our region that have yet to be studied (read our Lyme in the Southeast page for more information); it is evident that currently used Lyme testing methods are problematic and what is occurring in patients across our region, and indeed, across our nation, remains uncertain.
For further reading:
http://www.nhregister.com/articles/2008/08/29/news/a3-lymestrains.txt
Wide Distribution of a High-Virulence Borrelia burgdorferi Clone in Europe and North America. Emerging Infectious Diseases, July 2008
http://www.ncbi.nlm.nih.gov/pubmed/16207966
CALDA’s
Summer 2004, Volumes 37 & 38
is an excellent patient resource for further information
Prevent Lyme disease and other tick-borne infections!
Visit our Prevention page.
Not surprising, Lyme disease is most common among boys ages 5 to 19, according to CDC statistics, and children make up 25% of all cases. Can we really afford to continue to let cases go undetected? Support Lyme & TBD research!
How can this be?
A medical doctor diagnosed with Lou Gehrig’s disease (ALS) is given only a few years to live, but then discovers he has Lyme disease and begins to regain his strength during treatment. A professional baseball player for the Colorado Rockies is told he has Parkinson’s disease with no cure. He tests positive for Lyme borreliosis and after several months of Lyme disease treatment, compares his condition now to before therapy, saying it's “like night and day.” A scientist finds Borrelia burgdorferi DNA in Alzheimer’s disease brain samples; patients describe being misdiagnosed with Multiple Sclerosis, Fibromyalgia, Lupus, Chronic Fatigue, among many, many other illnesses. These are the fascinating stories you’ll follow in the new, multi-award winning documentary, Under Our Skin. The DVD for home use is now available.
Click on the picture above to visit UNDER OUR SKIN.
Watch a terrific interview with Under Our Skin's
Andy Abrahams Wilson by clicking HERE.
******
Another excellent resource for medical providers and patients alike is Pamela Weintraub's book,
This well-researched, comprehensive new book by Discover magazine's senior editor, recently won the award, Best Book, 2009 from the American Medical Writer's Association and literally cites hundreds of scientific studies.
Congratulations, Pam!
Conflicting Information
The battle over Lyme disease: how did we get here and where are we going? A Quote by Stricker et. al in Future Microbiology:
“…there is growing scientific evidence that chronic Lyme disease does exist, and that this clinical condition is related to persistent infection with B. burgdorferi as shown by microbiological and molecular studies. Persistent infection occurs in animal models and humans because the Lyme spirochete is able to evade both the host immune response and short-course antibiotic therapy to establish chronic infection in protected tissue sites, much like TB. This chronic infection leads to persistent musculoskeletal, neurologic and cardiac symptoms that are the hallmark of chronic Lyme disease. By contrast, the leading theory for persistent symptoms owing to ‘post-Lyme syndrome’, namely an autoimmune response triggered by the eradicated spirochetal infection, has not been supported by scientific evidence.”
*******
Ever since its discovery, scientists and physicians across the globe have been at odds over conflicting scientific research reports about Lyme disease. Literally thousands of Lyme patients, often dismissed as "a small but vocal handful", have come forward to report that, despite treatment, they continue to suffer from serious, ongoing symptoms. And sure enough, over the years when groups of scientists and physicians worldwide began to study Lyme borreliosis more closely, astonishing evidence began to emerge. Soon there was not only a little evidence, but a large body of worldwide, peer-reviewed research at odds with what some scientists and physicians were reporting.
What was going on?
On July 30, 2009, scientists, physicians and Lyme advocates presented scientific evidence and testimony before the Infectious Diseases Society of America’s Review Panel. This hearing was a direct result of Connecticut Attorney General Richard Blumenthal’s antitrust investigation of the IDSA’s 2006 Lyme Disease Treatment Guidelines authors. This investigation reportedly revealed serious flaws in the guidelines writing process and legitimate conflicts of interest among some of the authors. Click below to read the Connecticut Attorney General's official press release:
http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284
The July 30th hearing was part of the settlement agreement between the Infectious Diseases Society of America and the Connecticut State Attorney General's office. The testimony was broadcast live on the web. To watch it and to view the presentations, click below:
http://www.idsociety.org/Content.aspx?id=15026
Each presentation may be viewed for one full year on the Infectious Diseases Society of America’s website. Each speaker’s presentation is about 15-20 minutes long, and persons on both sides of the controversy testified. (We urge you to watch each presentation to gain a clear understanding of this controversy and to hear much of the worldwide, peer-reviewed scientific evidence regarding persistent Lyme infection and the inadequacy of Lyme disease tests.)
To download and watch some PowerPoint submissions, including Dr. Elizabeth Maloney’s excellent presentation, please also go to:
http://www.lymedisease.org/news/idsa_lyme_hearing/174.html
Prior to this hearing, there was a public input period when anyone could submit their written objections to the 2006 Infectious Diseases Society of America's Lyme Disease Treatment Guidelines. Among many others, groups like the Association of American Physicians and Surgeons (AAPS), the German Society of Lyme Borreliosis, and the United Kingdom’s Lyme Disease in Action, submitted written objections citing numerous research studies in their letters. The International Lyme and Associated Diseases Society (ILADS) submitted an objection including over 1600 pages of analysis and research studies. The national Lyme Disease Association submitted a 10 page challenge to the guidelines which represented (and was signed by) 34 Lyme disease advocacy groups across the nation. Dr. David Volkman issued a letter citing compelling scientific research data contradicting much of the information in the IDSA guidelines. (See below for link to Dr. Volkman's submission.)
Worldwide, the peer-reviewed scientific information about Lyme disease continues to emerge. Only by honestly examining and sharing the entire body of evidence, will we ever begin to truly understand this complex illness. Suffering patients deserve nothing less.
(click title below to read)
Comments Regarding Lyme Disease (LD) Treatment Recommendations
David Volkman, Ph.D., M.D.
Emeritus Professor of Medicine and Pediatrics
SUNY, Stony Brook, NY
Background: Ph.D. and M.D., Emeritus Professor of Medicine and Pediatrics at SUNY,Stony Brook. Board certified in Immunology, Diagnostic Laboratory Immunology, and Internal Medicine, and Board Eligible in Infectious Diseases. Previously, Senior Investigator at the NIAID and Chairman of both the Internal and External Review Boards of the NIAID. Among first to isolate and clone human antigen-specific T lymphocytes(1,2) and active in retroviral investigations (3,4). Involved in both clinical and bench research in LD since coming to Stony Brook in 1985.
The Need for Clinical Judgment
in the Diagnosis and Treatment
(click article title to read)
Elizabeth Maloney, M.D.
Journal of American Physicians & Surgeons
Fall 2009
Two separate analyses presented at 47th annual IDSA meeting (2009) reveal that Infectious Disease Treatment Guidelines are based mostly on opinion rather than fact or properly controlled trials.*
"When clinicians are using the guidelines, they should not assume that they are all based on well-designed studies...Clinicians should remain cautious when using current guidelines as the sole source for guiding patient care."
- Dong Lee, MD, Division of Infectious Diseases and HIV Medicine at Drexel University College of Medicine, Philadelphia, PA.
infectious disease treatment guidelines weakened by paucity of scientific evidence
by Daniel M. Keller, PhD
(Click title above to read article or use article title to search if unable to log in to Medscape Today.)
*Infectious Diseases Society of America (IDSA) 47th Annual Meeting: Abstract 1324, presented November 1, 2009; Abstract LB-31, presented October 31, 2009.
PROBLEMS WITH TESTING
“Problems Associated with Serologic Tests for Lyme Disease: The percentage of patients with Lyme disease who fail to develop diagnostic levels of specific antibodies varies from study to study. Lack of sensitivity of serologic tests is a problem and may lead to false-negative results and decisions not to treat patients who may actually have Lyme disease. The extent of the problem is unknown. When patients are treated with antibiotics early in the course of B. burgdorferi infection, they may never develop antibodies above the diagnostic assay cutoff.” [emphasis added]
- from NIH State-of-the-Art Conference; Diagnosis and Treatment of Lyme Disease; Clinical Courier; Vol. 9. No. 5, August 1991; National Institute of Arthritis and Musculoskeletal and Skin Diseases and National Institute of Allergy and Infectious Diseases.
“...(The Western blot for Lyme is so flawed that even its major manufacturer says he has found numerous “band” patterns more accurate than the one in use today.) Instead of relying on flawed 20th century technology, we must look to the science of the twenty-first century, including state-of-the-art genomics and proteomics that allows for the sequencing of every gene and protein involved in every stage of Lyme. With evidence of this calibre we won’t have to fight over the truth: We will know what’s going on.”
- from Disappearing a disease: when guidelines lack balance, patients suffer by Pamela Weintraub; Psychology Today website blog-Emerging Diseases, February 5, 2009
CONTROVERSY OVER CHRONIC LYME DISEASE
[Scroll down page to 11:00 a.m. and click on REAL AUDIO or WINDOWS MEDIA]
April 20, 2009
Radio interview with Dr. Samuel Shor, Associate Clinical Professor at George Washington University and Internist in private practice; Pam Weintraub, senior editor at Discover magazine and author of Cure Unknown; and Phillip Baker of the American Lyme Foundation.
The Diane Rehm Show
WAMU 88.5 FM
Physician Training Program
The most common question we hear from Georgia patients by far is, “Where can I find a physician who is keeping up with all of the Lyme and tick-borne disease research material?” Because these are such complex illnesses which are often difficult to diagnose and treat, and the scientific evidence is still emerging, it is very hard for busy healthcare providers to keep abreast of all the current data.
Turn the Corner Foundation, an organization dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases, under-writes a grant program for a Lyme and TBD disease physician training program. To learn more, click on the following links:
http://www.turnthecorner.org/2009Initiatives.html
http://www.ilads.org/lyme_programs/lyme_training.html
Lyme Borreliosis and chronic diseases: don't these deserve more investigation?
Following is a small sample - there are many similar articles.*
Multiple Sclerosis and Lyme Disease
Journal of Alzheimer’s Disease, December 2004
Chronic Fatigue, Fibromyalgia and Lyme Disease
Chronic Fatigue and Lyme Disease
*Our thanks to Lymenet.info, CANLyme, Dr. Alan McDonald and Dr. Sam Donta. Additional articles about Lyme borreliosis and ALS, Parkinson's disease, and other chronic illnesses may be ascertained by Internet searches of medical research literature.
(See more articles on Q & A/Articles page.)
Lyme and Tick-borne Disease Conferences
ILADS 2011 LYME DISEASE CONFERENCE
The International Lyme and Associated Diseases Society's 12th Annual Scientific Session
Friday-Sunday, October 28-30, 2011
Toronto, Canada
Click HERE for more details.
Healthcare providers: Get the cutting edge in scientific data. Attend both the International Lyme and Associated Diseases and the national Lyme Disease Association conferences each year.
The Lyme Disease Association's
12th Annual Lyme and Tick-borne Disease Conference
Jointly sponsored by Columbia University
October 1 & 2, 2011
Philadelphia, PA
Click HERE for more details.
