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2000This web site is in no manner affiliated with any Kaiser entity and the for profit Permanente Permission is granted to mirror this web site - Please acknowledge where the material was obtained. Link for Translation of the Kaiser Papers ABOUT US | CONTACT CONTACT FOR LYME DISEASE INFORMATION | MCRC |  RSS FeedLyme Section SiteMap |   Custom Search
 NEW:
LYME
MAPS AND OTHER TICK BORNE DISEASE MAPS OF ALL STATES IN THE UNITED
STATESReliable tick distribution and tick disease studies are sorely lacking outside of well recognized endemic areas such as the Northeast, the the country where Lyme disease is not acknowledged to be endemic. Tick infection rates and tick density can vary greatly from one area to another, even in close proximity. The most reliable indication of the potential risk of Lyme disease and coinfections is the presence of Ixodes ticks in an area. IntroductionKaiser’s Lack
of Tick Borne Disease Expertise and MisdiagnosesKaiser’s
Economic Rationale for Denials and Methods of DenialCalifornia
and the Pacific Northwest Tick Borne
Disease Information California
and the Pacific Northwest Tick Borne Disease Articles Letters Recommended
Medical ArticlesRecommended
Sites Sites
Not
Recommended Recommended
BooksConnecticut
Attorney General's Office Press
Release Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter May 1, 2008 "In
fact, United Healthcare, Health Net, Blue Cross of California,
Kaiser Foundation Health Plan and other insurers have used the guidelines as justification to deny reimbursement for long-term antibiotic treatment." The
IDSA Agreement with the Connecticut Attorney General's Office - PDFConnecticut Attorney General Investigation and Settlement Highlights Possible
Applicability of Antitrust Standard Setting Law to the
Development of Clinical Practice Guidelines By Richard Wolfram 1 Antitrust HealthCare Chronicle - PDF File Download Link A letter to United States President Barack Obama regarding Evidence based medicine & Medical Corruption In pdf form - downloadIn html formLyme
Disease and other tick borne disease maps of ALL States in the United
StatesLYME DISEASE IN CALIFORNIA Integrated Pest Management for Home Gardeners and
Landscape Professionals AUTHOR: R. S. Lane, Environmental Science, Policy and Management, UC Berkeley Lyme
disease is a serious bacterial infection caused by Borrelia
burgdorferi, a corkscrew-shaped
bacterium of the spirochete group. Other spirochetes cause diseases such as syphilis, rat-bite fever and relapsing fever. The primary means of infection is by tick bite although the disease has also been shown to be transmitted by other insects. The nymphal Ixodes tick, the primary culprit in transmission, is so small (about the size of a poppyseed) the victim will rarely notice it and will not feel it bite. People should not be lulled into thinking themselves safe because they did not notice a tick. Maternal-fetal transmission of the Lyme disease spirochete has been demonstrated by a number of credible clinical studies by Lyme disease researchers. Sexual transmission of Lyme disease is suspected by leading clinical practitioners. Because of the unreliability of most tests and laboratories, Lyme disease can be difficult to diagnose for those with no expertise. Inexperienced doctors tend to rely on highly restrictive CDC testing criteria that very few can meet – perhaps only 5% to 10% of those with proven Lyme disease that was never treated. They naively believe that if a person does not meet the strict and exclusionary CDC serodiagnostic crtiteria developed for surveillance purposes, that person does not have Lyme disease. Kaiser doctors have used this ploy as a means to support a non-diagnosis. The CDC has repeatedly stated that Lyme disease is a clinical diagnosis and that surveillance case standards should not be used for diagnostic purposes. Most experienced doctors diagnose Lyme disease according to the cluster of symptoms it can present. These symptoms are stated in the articles within this section. The most common symptom associated with Lyme disease is fatigue. The “erythema migrans” rash is the only symptom specific to the disease but only occurs in 50% or fewer of those infected. It normally occurs within 30 days of infection and then fades. Late-stage Lyme disease victims often do not notice and do not recall a rash. Kaiser’s Lack of Tick Borne Disease Expertise and Misdiagnoses Kaiser does not seem to have any doctors experienced in tick borne diseases. The guidelines they follow promote the view that Lyme disease as "hard to catch and easy to cure", despite the fact that the disease is epidemic in their market areas. Late-stage and chronic cases can involve long-term treatment and substantial expense. They also have not shown any demonstrated expertise, judging from our patient inputs, in diagnosing coinfections of Lyme disease and other infections which can be as devastating as Lyme disease. Complications of Lyme disease and tick-borne coinfections are often disabling and sometimes can be fatal. Kaiser's usual reaction is to misdiagnose the patient with a syndrome of unknown case and unknown cure or to suggest a patient has psychiatric disorders. Or the member may simply be abandoned. Some of the more common misdiagnoses are chronic fatigue syndrome, fibromyalgia, multiple sclerosis, lupus and early Alzheimer's disease. If a well meaning Kaiser doctor tries to help a patient with advanced Lyme disease, that doctor is normally forced to defer to Kaiser’s infectious disease doctors who will likely deny a diagnosis of Lyme disease. Kaiser’s Economic Rationale for Denials and Methods of Denial An upper-level Kaiser employee explained to me why Kaiser will not help Lyme disease victims. This person, and the spouse of this person, both have chronic Lyme disease. They have to go to a non-Kaiser doctor for treatment and pay out-of-pocket. This person explained that Kaiser views Lyme disease in the same context as AIDS only that Lyme disease is far more common and the risk exposure far greater. AIDS has been and is a large cash drain for Kaiser and they don’t want to repeat the experience. So their solution is not to diagnose in the first place or to severely limit Lyme diagnoses. This explanation is consistent with Kaiser’s behavior – it’s about money. Kaiser has thus far managed to escape culpability by claiming to follow restrictive guidelines published by the Infectious Diseases Society of America (IDSA). The Connecticut Attorney General has launched an investigation into the monopolistic guidelines policy of IDSA and the "Lyme experts" who authored the IDSA guidelines. There are two standards of care for Lyme disease. Kaiser will not give the member the choice of following the guidelines issued by the International Lyme and Associated Diseases Society (ILADS) because the open-ended treatment could prove too costly. Kaiser
has gone one step farther
than the IDSA guidelines in order to avoid diagnoses. West Coast
patients
have had their blood samples sent to the East Coast for analysis, a practice that has been condemned by IDSA because of the high risk of sample degradation. According to laboratory records, in some cases samples were not analyzed for as long as two weeks after the blood draw, likely rendering the sample worthless. In other cases samples have been sent to the laboratory of Allen Steere (IDSA).Another factor is that the cheap and inaccurate Elisa “screening” test that Kaiser uses is based on an East Coast strain of the Lyme spirochete. Comparison with a reference strain that differs from the strains found on the West Coast will be more likely to produce a "negative" result. Kaiser has been known to dismiss test results from the highest rated laboratories in the country for tick borne infections, no matter how specific and how diagnostic the results may be. One method used by ethically challenged HMO’s and health insurers to discourage extended treatment is to file anonymous complaints to state medical boards against doctors who “overdiagnose and overtreat” Lyme disease. In fact, Kaiser instigated one of the earliest cases of Lyme physician harassment in the United States by filing a complaint against an Oregon doctor who was diagnosing and treating Lyme patients, one of whom was a Kaiser member. Kaiser was “tipped off” to this physician when the patient attempted to fill a prescription for long-term antibiotics through a Kaiser pharmacy. Kaiser paid for an East Coast "Lyme expert" to testify before the Oregon Board of Medical Examiners on whom Kaiser appears to have an undue influence, not only in this case but other cases as well not involving Lyme disease. This “Lyme expert” is now part of the investigation by the Connecticut Attorney General. The physician was told to stop treating Lyme patients or to give up his license. Since no physician has the resources to contest Kaiser’s legal and financial assets, he chose the former and was forced to give up his Lyme patients. This early case of Lyme physician harassment has had a very negative effect on the ability of Pacific Northwest residents to get help for Lyme disease since this threat has discouraged regional doctors to become specialists in tick borne diseases. The Pacific Northwest is also home to two ex-presidents of the Infectious Diseases Society of America, David Gilbert of the Oregon Health & Science University and Walter Stamm of the University of Washington, both of whom seem to do their utmost to insure that regional doctors comply with IDSA restrictions on treating Lyme disease. Some states, including California, have adopted legislation to protect doctors treating Lyme disease. Conclusions A Kaiser member who suspects they have Lyme disease should seek help from a tick-borne disease specialist. Prompt and sufficient treatment is essential to prevent the disabling complications and probable incurability of a late-stage infection and a potential lifetime of misery. Undertreatment is a potentially dangerous option. Kaiser Lyme disease victims in Oregon and Washington normally go to California or the East Coast for competent treatment. Most tick-borne disease specialists on the West Coast are quite familiar with Kaiser members. East Coast Kaiser members have a number of excellent tick borne disease specialists available to them. As a former member of Kaiser for 27 years, I had to change health plans because three infectious disease specialists at Kaiser Permanente Northwest refused to diagnose me for Lyme disease despite specific serodiagnostic criteria and symptoms consistent with and diagnostic for Lyme disease. Two of these doctors never even saw me. At the time, I was in very poor health because of Lyme disease. It took four years of treatment by a tick borne disease specialist to regain most of my former health. The loss of 10 potentially productive years – 6 years undiagnosed and 4 years in treatment - can never be compensated. It was the callousness, ignorance and dishonesty of these doctors and the subsequent knowledge that Lyme disease denials are standard operating procedure for Kaiser that prompted me to create this Lyme disease information page for Kaiser members. The refusal to diagnose Lyme disease by Kaiser doctors, particularly late-stage disease, seems to be quite common. I hope the information on this page is helpful to those for whom it was intended and that those who read it are spared the negative and harmful experiences of myself and others regarding Kaiser and Lyme disease. Miguel Perez-Lizano For Starters An excellent informational booklet by the Lyme Disease Association of Southeastern PA. This is very well written for the newcomer to Lyme disease and other tick borne diseases. http://www.lymepa.org/html/the_basics_-_description.html "Update
on Lyme Disease" by Ginger Savely RN,
FNP-C is a comprehensive overview written in a way
http://clinicianreviews.com/index.asp?show=lesson&page=courses/105213/lesson.htm&lsn_id=105213the layman can understand the basics. Lyme Disease Information Specific To Kaiser Advice For Kaiser Lyme Disease Victims How to deal with Lyme and other tick borne infections if you have Kaiser health insurance. http://lyme.kaiserpapers.org/lymevictimadvice.html A letter to Barbara Johnson, Chief, Molecular Biology Section Centers for Disease Control and Prevention Division of Vector-Borne Infectious Diseases Re: HMO abuse of Lyme disease surveillance case definition Note; The CDC replied that they were not responsible for how HMO’s misused the Lyme disease surveillance criteria. Barbara Johnson is one of the CDC employees who has a patent interest in testing for Lyme disease, including the C6 Elisa test the CDC is now recommending. http://lyme.kaiserpapers.org/barbiejo.html "A Critique of Kaiser Lyme Disease Information"Lyme disease: Discusses some of the Lyme disease information issued by Kaiser which is simply wrong or misleading. http://lyme.kaiserpapers.org/misbymile.html The Manipulation of HMO Medical Testing By Charles Phillips, MD FACP Fresno, California, April 22, 2003 for the United States Congress. (Includes a section on Lyme disease) http://kaiserpapers.org/co/conten.html Oregon Health Care Town Hall Re: Lyme disease (Lyme borreliosis) – lack of access to care Describes Kaiser as being a major hindrance to the diagnosis and treatment of Lyme disease in the Pacific Northwest. http://lyme.kaiserpapers.org/abtmiguel.html Excerpts from Public Law 107-116 Signed by President Bush 1/10/02 “The
Committee is
distressed in hearing of the widespread misuse of the current Lyme
disease
surveillance case definition. While the CDC does state that 'this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' the definition is reportedly misused as a standard of care.” http://lyme.kaiserpapers.org/presbush.html Kaiser Lyme Disease Propaganda; Scott Smith, Infectious Diseases, Kaiser Redwood City "The Professor of Parasites" “Local cases of Lyme disease are quite unusual -- I see maybe one case per year. I would say that local residents are at very low risk for contracting Lyme disease. There's a lot more risk in Humboldt and other northern counties in California. Only about 1 percent of local ticks carry Lyme disease.” (Note; Factual information from Santa Cruz Public Health Department; “A two-year study by biologists at San Jose State University found infection rates ranging from 5 to 9 percent among western black-legged ticks (Ixodes pacificus) and American dog ticks (Dermancentor variabilis) in Santa Cruz County.”) http://sfgate.com/cgi-bin/article.cgi?file=/g/a/2003/10/27/urbananimal.DTL Kaiser Permanente responds: "Of course we treat Lyme disease at Kaiser Permanente -- but it is infrequent in California," said David J. Witt, MD, Chief of Infectious Diseases for Kaiser Permanente Northern California. Kaiser Permanente's medical group of 4400 physicians serve more than 3.1 million members in 17 hospitals and 152 medical office buildings in Northern California. "We follow clinical guidelines for diagnosing and treating Lyme Disease that were published jointly by The Infectious Diseases Society of America and American Rheumatologic Association. Our world-class clinical laboratories diagnose complex diseases - including Lyme disease. If there is any question, we send specimens to the laboratory run by Allen Steere, MD of Massachusetts General Hospital," he said. (Note:
The Lyme disease
panel of
the Infectious Diseases Society of America is under an antitrust
investigation filed by the Connecticut Attorney General. Steere, part of the antitrust investigation, has publicly bragged that his laboratory could not find evidence of Lyme disease in samples when other laboratories had positive results (for the same sample). http://sfgate.com/cgi-bin/archive/2003/11/17/urbananimal.DTL Kaiser’s Lyme Disease Executive Summary which was removed from the Internet by Kaiser. Note that these guidelines discourage testing, give a high (and false) accuracy of the Lyme ELISA screening test, restrict diagnostic criteria by focusing on joint inflammation and Bell’s palsy, and encourage a diagnosis of fibromyalgia. http://www.harp.org/eng/kaiserslymesummary.htm “In Sonoma County, only about 1 percent of adult ticks and 5 percent of nymphs are infected with the Lyme disease bacteria, (Gary) Green (Kaiser Santa Rosa, Infectious Diseases) said.” http://www.msmosquito.com/PD080507.html Note;
In the same article…“But the tick infection rate
can vary widely in areas
of Northern California.
Anne Kjemtrup, an epidemiologist with the state Department of Health Services, said that in some spots of Trinity, Humboldt and Mendocino counties, up to 40 percent of nymphal ticks have the Lyme bacterium.” http://www.sonoma-county.org/health/ph/diseasecontrol/pdf/lyme_ca.pdf Sonoma County continues to have this on their health page despite numerous requests to have it removed. This is the only non-government reference cited on the Sonoma County Lyme page. This presentation by Gary Green of Kaiser Santa Rosa suggests the use of CDC surveillance criteria as diagnostic criteria, relies on sources approved by the Infectious Diseases Society of America (IDSA), now under a Civil Antitrust Investigation by the Connecticut Attorney General, promotes the use of test kits and laboratories that are modeled around East Coast strains of Lyme disease (and less likely to give a positive result for West Coast Lyme disease), ignores laboratories on the West Coast and East Coast that have demonstrated expertise and highest accuracy in diagnosing Lyme disease, ignores many medical and scientific references that do not support Dr. Green’s (and Kaiser’s) position, and ignores alternative guidelines by the International Lyme and Associated Diseases Society (ILADS). Guidelines
for Lyme Disease Vaccine Use in
California for Health Care
Providers. This vaccine is no
longer being manufactured but is very important because Kaiser declared this disease an epidemic and backed this vaccine before it was found to harm patients.. http://www.dhs.ca.gov/ps/dcdc/disb/pdf/DHS%20Lyme%20disease%20vaccine%20guidelines.pdf
Link to 1996 CDC Map showing distribution of Lyme disease in the United States. California
Lyme Disease
Advisory Committee Information - Disease Information
and Surveillance
http://www.dhs.ca.gov/ps/dcdc/disb/ldac.htm An Update on the Epidemiology of Lyme Disease in California (dated information) http://www.dhs.ca.gov/ps/dcdc/disb/pdf/dhs_lyme_medbd_news_10_2001.pdf Part 2 http://www.dhs.ca.gov/ps/dcdc/disb/pdf/Epi%20Lyme%20Part%20II.pdf Lyme Disease in California prepared by Steve Diers, Ranger/Naturalist An excellent presentation of Lyme disease in California and in general. http://lyme.kaiserpapers.org/pdfs/Lyme Disease in California handout-Diers.pdf Tick
borne diseases
in Santa Cruz County,
California written by Kevin
Holden
currently with Center
Ventura
County,
California Lyme Disease Hot Spot Map for Comparative Medicine Schools of Medicine and Veterinary Medicine University of California, Davis ,John T. Boothby, Sulekha Anand (of San Jose State University, San Jose, CA http://lyme.kaiserpapers.org/pdfs/Ehrlichia-Santa%20Cruz.pdf http://www.ventura.org/envhealth/programs/vector_control/images/vectmap3.jpg County of Ventura, Environmental Health, Vector Control Program Lyme Disease http://www.ventura.org/rma/envhealth/programs/vector_control/lyme.htm Tick testing results from various California sites compiled by the California Department of Health Services. The test results may not be a reliable indicator of tick infection rates but the prevalence of ticks in each location should be noted. http://www.dhs.ca.gov/ps/dcdc/disb/pdf/Detection%20of%20the%20Lyme%20Disease%20Agent%20i Lyme disease in California. http://www.lymedisease.org/ Lyme
disease in
Oregon.
http://www.oregonlyme.org/news.htm Lyme disease in Washington State http://www.walyme.org/ Shows distribution of Lyme disease vectors (ticks) Ixodes pacificus and Ixodes scapularis by county. (Note; there are other ticks and insects that are known to transmit Lyme disease.) http://www.cdc.gov/ncidod/dvbid/lyme/tickmap.htm Lizard
May Act As Lyme
Disease
Panacea.
(Note; This article by UC-Berkeley discusses a study showing infection rates of ticks in Tilden Regional Park within the San Francisco Metropolitan Area. In one area 1.3 percent of adult ticks carried the Lyme disease bacterium, compared to 5.7 percent of nymphal ticks, the reduction thought to be the bacteriocidal effect on Lyme bacterium of the ticks feeding on Western Fence lizards. There are two major flaws with the extrapolation of this information. One is that the distribution of the Western Fence lizard tends to be spotty and diminishes to scarce or nonexistent as one works north of San Francisco to British Columbia. Ticks also feed on rodents and birds. Second is that, as far as is known, the Western Fence lizard does nothing to eliminate other tick borne diseases usually associated with Lyme disease. Also, in other areas, lizards have been demonstrated to carry the Lyme bacterium. http://www.berkeley.edu/news/berkeleyan/1998/0429/lizard.html Bitten by the Controversy Bug by Andy Dworkin of The Oregonian http://lyme.kaiserpapers.org/andy.html Memorable quotes from David Gilbert who is considered the regional Lyme expert in Oregon… “What is increasingly common is patients who think they have Lyme disease, not actual cases,” said Dr. David Gilbert, an infectious disease expert at Portland-based Providence Health Systems and past president of the Infectious Diseases Society of America. "I have seen, in maybe 35 years of doing this, at the most two or maybe three cases," he said. (Comment; this most certainly must qualify him as an expert – one diagnosis every 10 to 15 years.) Gilbert said that "throughout the history of medicine" some people have developed a set of nagging symptoms -- often including pain, fatigue and depression -- without an obvious cause. Some of these patients search for an explanation on their own, which creates a series of pop diagnoses that parade like fashion trends through medical offices. (Comment; a sorry excuse for physician incompetence and ignorance.) ”What You Don’t Know Can Hurt You.” Article: http://lagrandeobserver.com/news/story.cfm?story_no=10919 http://health.groups.yahoo.com/group/Robynns_Lyme_List/message/3293 Letters in response to article: http://www.lagrandeobserver.com/news/story.cfm?story_no=10952 “…the
Oregon
Veterinary Medical Association last year reported over 100
cases of Lyme disease
in the Portland metro area alone. This figure is likely also vastly under reported…”. ”Compare this to the pathetically low and grossly misleading figure of 3 human cases reported for all of Oregon last year.”This will lead to some links that direct the Lyme Disease interested person to valid medical diagnosis and treatment. http://lyme.kaiserpapers.org/lymelinks.html Liz
MacLeod of the Amador Ledger Dispatch
Spring season means increased danger of outdoor ticks, Lyme disease http://www.ledger-dispatch.com/news/newsview.asp?c=210554 Threat Of Disciplinary Action Creates Tense Atmosphere For Lyme Docs http://tinyurl.com/35aqx2 and mirrored for historical purposes at: http://lyme.kaiserpapers.org/persecute.html Confronting Lyme Disease Patient Stories - Miguel and Bo. Battle Ground man fights Lyme disease By Alice Perry Linker, staff reporter with The Reflector http://www.confrontinglyme.com/miguel.html Some Kaiser Victim Lyme Patient Stories http://lyme.kaiserpapers.org/lymepatientstories.html Letters These letters were submitted to the NY Times in response to an article critical of medical laboratories specializing in tick-borne infections. The letters state how Kaiser has used flawed Lyme testing to deny Lyme diagnoses. http://lyme.kaiserpapers.org/nytimesart.html Susan J. Landers – AMA reporter that covers public health, science and related federal policy issues. http://lyme.kaiserpapers.org/susanlanders.html A letter to Richard E. Bryant, M.D. This letter to Dr. Bryant of Oregon Health & Science University (OHSU) summarized some problems with Kaiser and Lyme disease in the Pacific NW. It was written whenOHSU published the ILADS Lyme disease guidelines on their web site. The reference was deleted after a short period of time. Kaiser and OHSU have a close relationship. Dr. Bryant never replied to this letter. http://lyme.kaiserpapers.org/bryanthelp.html Selected Letters to the Editor regarding Lyme Disease and related infections. http://lyme.kaiserpapers.org/leditor.html The Kaiser/CDC Morgellons Collaboration http://lyme.kaiserpapers.org/kaiser-cdc-morgellons-collaboration.html Recommended Medical Articles When
To Suspect Lyme Disease by
John D. Bleiweiss, M.D
An excellent monograph that has helped many. http://cassia.org/essay.htm Late and Chronic Lyme Disease: Symptom Overlap with Chronic Fatigue Syndrome & Fibromyalgia By Sam Donta, M.D. Dr. Donta is an acknowledged Lyme disease expert who has done studies for the Department of Defense. Dr. Donta refused to be on the IDSA Lyme disease panel because he disagreed with their recommendations. http://www.immunesupport.com/library/showarticle.cfm/ID/3579 Lyme Disease -point/counterpoint Raphael B Stricker†, Andrew Lautin and Joseph J Burrascano A professional and well-documented discussion of the problems inherent in Lyme disease diagnosis and treatment. http://www.lymemed.nl/discussie/point&counterpoint.pdf Evidence Based Guidelines for the Treatment of Lyme Disease (ILADS) http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses by Dr. Burrascano http://www.ilads.org/burrascano_1102.html Dr. Daniel Cameron’s Testimony Before the Massachusetts Legislative Committee on Public Health http://lymeproject.com/Dr_Cameron/News/2Our_news/0Testimony.htm Lyme Disease: the Sensible Pursuit of Answers by Dr. Kenneth Liegner http://www.lymeinfo.net/sensiblepursuit.html A synopsis by experts on the current status of Lyme disease in the US and the world. http://www.timesargus.com/apps/pbcs.dll/article?AID=/20070805/NEWS01/708050411 Lyme disease talking points - Based on comments by Dr. Dan Kinderlehrer on the Today Show http://lyme.kaiserpapers.org/drdan.html Finding a Doctor that knows how to treat Lyme Disease http://cassia.org/llmd.htm ILADS' Position Paper on the CDC's Statement Regarding Lyme Diagnosis "The Center for Disease Control's (CDC) position on diagnosing Lyme disease (LD) is an oversimplification of a complicated clinical condition. The CDC's two tiered approach using an ELISA and confirming positives by both IgM and IgG Western blots--potentially misses more than 40% of the patients. One year after the tick bite, this percentage may be greater than 50%. " "Lyme disease is a problematic diagnosis. The position adopted by the CDC makes it more complicated." http://www.ilads.org/position.htm The National Guideline Clearing House at: Kaiser seems to run part of the CDC have been after Igenex Inc., of Palo Alto for years. http://sfgate.com/cgi-bin/article.cgi?file=/c/a/2001/12/10/MN195999.DTL Infectious
Diseases
Society
of America (IDSA) Lyme Guidelines. These
guidelines are the basis for
the denial of Lyme disease diagnosis and treatment by Kaiser Permanente. A cabal of 14 authors and a somewhat larger number of cohorts with significant conflicts of interest seem to control much of the published information on Lyme disease. Unfortunately, these guidelines are blindly followed by most doctors who have little or no knowledge about Lyme disease and rely on normally sound and dependable information from the prestigious IDSA. The IDSA guidelines are also promoted by CDC Lyme scientists, many of whom have profit interests in Lyme disease. http://www.journals.uchicago.edu/CID/journal/issues/v31nS1/000342/000342.web.pdf American
Lyme Disease
Foundation. The ALDF is essentially an arm of those
relative few who have
controlled Lyme disease information for decades. This includes some of the authors of the IDSA Lyme disease guidelines. The ALDF also has ties to the CDC and vice-versa. The ALDF was formed by James Connolly of Castle & Connolly, an HMO advocate. The ALDF and its members have profit interests in Lyme disease. http://www.aldf.com/ Quackwatch’s Lyme disease information was prepared by Dr. Edward McSweegan, formerly the Lyme disease program manager for the National Institutes of Health. For various reasons, Dr. McSweegan was removed as the NIH Lyme disease program manager. One of the more bizarre series of incidents was stalking and harassing a founder of the Lyme Disease Foundation; Karen Vanderhoof-Forschner. Quackwatch has been successfully sued by patient advocates. They appear to be sponsored by HMO’s and Big Pharma. American
College of
Physicians. The ACP is another tool used by IDSA to
propagate their views on
Lyme disease. The same applies to Lyme disease information issued by the American Academy of Neurology and the American College of Rheumatology. In the case of the latter two institutions, influential members include authors of the IDSA Lyme disease guidelines. http://www.acponline.org/lyme/index.html Centers
for
Disease
Control and
Prevention.
CDC Lyme information tends to be incomplete and not
http://www.cdc.gov/ncidod/dvbid/lyme/index.htm up-to-date. The CDC is heavily influenced by the authors of the Infectious Diseases Society of America Lyme guidelines and information and recommendations are perhaps biased by the for-profit interests of Lyme scientists within the CDC. These comments also apply to Lyme disease information from the National Institutes of Health (NIH). CDC Lyme information has been diluted to the extent that it is of little benefit to the physician and patient. Wikipedia changes its Lyme information over time. Depending on whether or not the latest editorial contributor is pro-patient or pro-HMO, the level of knowledge of the contributor and whether or not the contributor has a self-profit agenda, the content will vary. The Wikipedia moderator has allowed the content to be almost entirely influenced by IDSA input. http://en.wikipedia.org/wiki/Lyme disease Recommended Sites International Lyme and Associated Diseases Society http://www.ilads.org/ Lyme
Disease
Foundation
http://www.lyme.org/ Lyme Disease Association http://www.lymediseaseassociation.org/ Canadian Lyme Disease Foundation http://www.canlyme.com/ Lyme Info is an excellent resource for information. The site is well-organized and very comprehensive. http://www.lymeinfo.net/lymefiles.html Melissa Kaplan’s Lyme Disease Page; “An Exercise In Nailing Jello To The Wall”. http://www.anapsid.org/lyme/ IGeneX Laboratories has prepared an excellent summary of testing for Lyme and other tick borne diseases. http://www.igenex.com/ Certificates of Approval for Igenex in Various States - California - Pennsylvania - Florida - New York - Maryland -and Igenex's own Certificate of Compliance with the Centers for Medicare and Medicaid Services (Nationwide in USA) Lyme Disease Network. A source of archived Lyme disease information and a discussion group. http://www.lymenet.org/ Recommended Books Everything
You Need to Know About Lyme Disease and Other Tick-Borne Disorders
by Karen Vanderhoof-Forschner http://tinyurl.com/2ja9cq Confronting Lyme Disease: What Patient Stories Teach Us by Karen P. Yerges and Rita L. Stanley http://tinyurl.com/2pn4ny Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment by Denise Lang and Kenneth Liegner http://tinyurl.com/2uhneo Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by Stephen Harrod Buhner This book by Stephen Buhner provides some alternative remedies that may be helpful to Kaiser patients who cannot get immediate help. http://tinyurl.com/3b9q8l Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub http://tinyurl.com/co3hpu Under Our Skin A dramatic
tale of microbes, medicine and money, this eye-opening new
film investigates
the untold story of Lyme disease, an emerging epidemic larger than AIDS. Each year thousands go undiagnosed or misdiagnosed, told that their symptoms are “all in their head.” |
