Introduction Main Index History Purpose Contact Notices
Kaiser Papers is informative

In Copyright Since September 11, 2000. This web site isn't affiliated with, and doesn't represent, any Kaiser entity, including but not limited to Perm­an­ente. This is instead a public interest nom­in­a­tive use site. Permission is granted to mirror this web site under Creative Commons CC BY-NC-SA 4.0. Please acknowledge where material was obtained.

History  |  Purpose  | Contact  |

Lyme Disease Information for Kaiser Permanente Patients

NEW:  Memorable and Not So Memorable Quotes by Lyme Disease Denialists This compilation of ludicrous quotes by certain of the Infectious Diseases Society of America (IDSA) Lyme disease guideline authors, their cohorts, and other Lyme disease denialists was started by an early Lyme disease activist named Douglas Dodge. This compilation had not been updated for many years. Some have been recently added. There are many more that could be added.  These comments should be preserved so they are not forgotten.https://kaiserpapers.com/lyme/memorable-quotes-by-lyme-disease-denialists.html=================================================================================================NEW:  Steven Harris ILADS presentation - Augsberg, Germany - May 28, 2011 Strategies for the Treatment of Lyme Disease A superb and comprehensive presentation on Lyme disease diagnosis, testing, and treatment.

Introduction Basic Information about Lyme disease Lyme Disease Information for Western States Lyme Disease Information Specific To Kaiser Kaiser Lyme Disease Propaganda Kaiser Lyme Disease Patient News Stories California and the Pacific Northwest Tick Borne Disease Information California and the Pacific Northwest Tick Borne Disease Articles Personal Kaiser Lyme Disease Medical Records Letters Lyme Disease Guidelines ( ILADS, IDSA, Kaiser) Recommended Medical Articles Harassment of Lyme Disease Treating Physicians Maps Public Law, Actions, Legal Opinions Lyme Disease Activism Sites Tick Identification and Control Recommended Sites Sites Not Recommended Recommended Books Recommended Video Financial Assistance for Lyme Disease Patients

Introduction 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

Basic Information about Lyme disease  

20 Reasons Why Lyme Disease Is Underdiagnosed–Summary 20 Reasons Why Lyme Disease Is Underdiagnosed–Full

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 the layman can understand the basics. http://clinicianreviews.com/index.asp?show=lesson&page=courses/105213/lesson.htm&lsn_id=105213  

Lyme disease symptom checklist by North Carolina Lyme Disease Foundation. http://www.nclyme.org/questionnaire.html  

A concise outline of Lyme disease diagnosis, test interpretation, treatment, and coinfections. http://www.holtorfmed.com/lyme-disease.html  

For an excellent presentation on Lyme disease testing (and treatment) see; http://www.ilads.org/lyme_disease/media/pdf/Ray_Stricker_Presentation.pdf

Steven Harris ILADS presentation - Augsberg, Germany - May 28, 2011 Strategies for the Treatment of Lyme Disease A superb and comprehensive presentation on Lyme disease diagnosis, testing, and treatment.

A clear explanation of Lyme Disease Laboratory Tests by Tom Grier, MS

Lyme Disease Information for Western States

  Lyme Disease in the state of Oregon   Lyme Disease in the state of Washington

Lyme Disease in Interior Western States

Lyme Disease Information Specific To Kaiser

Advice for Kaiser Lyme Disease Victims  https://kaiserpapers.com/lyme/lymevictimadvice.html     A Critique of Kaiser Lyme Disease Information https://kaiserpapers.com/lyme/misbymile.html   Kaiser Permanente Lyme Disease Executive Summary http://www.harp.org/eng/kaiserslymesummary.htm   Oregon Health Care Town Hall https://kaiserpapers.com/lyme/abtmiguel.html   Letter to Barbara Johnson of the CDC, Chief, Molecular Biology Section regarding HMO abuse of the CDC Lyme disease surveillance case definition.  (Dr. Johnson has a patent interest in current Lyme disease testing promoting an archaic and unreliable protocol. The CDC replied that they were not re­spon­si­ble for how HMO’s misused the Lyme disease surveillance criteria.) https://kaiserpapers.com/lyme/barbiejo.html     The Manipulation of HMO Medical Testing by Dr. Charles Phillips, former Kaiser doctor.  https://kaiserpapers.com/co/conten.html  

Kaiser Lyme Disease Testing https://kaiserpapers.com/co/conten.html#VI._Lyme

Kaiser Lyme Disease Laboratory Testing https://kaiserpapers.com/co/kplymetestingmk.html  The Kaiser/CDC Morgellons Collaboration  https://kaiserpapers.com/lyme/kaiser-cdc-morgellons-collaboration.html   A Letter to Richard E. Bryant; Oregon Health Sciences University  https://kaiserpapers.com/lyme/bryanthelp.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.”) Note:  The following is now placed in sfgate archives. 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).

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).

California and the Pacific Northwest Tick Borne Disease Information

California Department of Public Health and

California Lyme Disease Advisory Committee

Epidemiologic Summary of Lyme disease in California, 2001-2008

Lyme Disease in California prepared by Steve Diers, Ranger/Naturalist An excellent presentation of Lyme disease in California and in general. Includes information on finding a West Coast Lyme disease doctor. https://kaiserpapers.com/lyme/pdfs/Lyme Disease in California handout-Diers.pdf

Tick borne diseases in Santa Cruz County, California Schools of Medicine and Veterinary Medicine University of California, Davis Kevin Holden, John T. Boothby, Sulekha Anand

County of Ventura, Environmental Health, Lyme Disease

CDC Map - 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 or variants of Lyme disease.)

See also… 

Lyme Disease in the state of California   Lyme Disease in the state of Oregon   Lyme Disease in the state of Washington

Lyme Disease in Interior Western States

California and the Pacific Northwest Lyme Disease Articles

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
https://kaiserpapers.com/lyme/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.)

“…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. https://kaiserpapers.com/lyme/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

Battle Ground man fights Lyme disease The Reflector, Battle Ground, Clark County, Washington By Alice Perry Linker, staff reporter

Lyme disease often goes undiagnosed in Oregon By Deedee Schneider MA, LMT

Informed Consent Patients have a right to pick among conflicting studies By Theresa Denham

Misdiagnosed for Years Sickest Lyme patients can have nega­tive test results By Sarah Blanton

A Disease In Debate A Bend woman has chronic Lyme disease There are a number of news articles on Lyme disease in Washington State both west and east of the Cascades. Some are only available on a pay-per-view basis.

UNDETECTED LYME DISEASE CAN MAKE LIFE MISERABLE, July 6, 1988 http://www.seattlepi.com/archives/1988/8801190337.asp

First Lyme disease case reported in Kittitas County, July 28, 1989 http://news.google.com/newspapers?id=izkQAAAAIBAJ&sjid= WY8DAAAAIBAJ&pg=6914,3118567&dq=lyme+disease+washington+state&hl=en

Lyme disease suspected on the Palouse, March 9, 1990 http://news.google.com/newspapers?id=gE4tAAAAIBAJ&sjid= mNAFAAAAIBAJ&pg=2279,1323270&dq= lyme+disease+washington+state&hl=en

Montana Lab Tries to Identify Tick-Borne Disease, New York Times 2003

Mysterious tick disease afflicts Montana 2003

Tick borne disease in Montana, The Missoulian 2004

Out-of-state bites boost Lyme disease cases, Billings Gazette 2009 (Note; Dr. Paul Mead of the CDC offers his biased and misinformed views.)

Chronic Lyme disease hobbles Spanish Fork woman Dec. 28, 2009

Personal Kaiser Lyme Disease Medical Records

Letters

A letter to United States President Barack Obama regarding Lyme Disease & Medical Corruption In pdf form - download In html form

Letter to Barbara Johnson of the CDC, Chief, Molecular Biology Section regarding HMO abuse of the CDC Lyme disease surveillance case definition.  https://kaiserpapers.com/lyme/barbiejo.html

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. https://kaiserpapers.com/lyme/nytimesart.html

Susan J. Landers – AMA reporter that covers public health, science and related federal policy issues. https://kaiserpapers.com/lyme/susanlanders.html A letter to Richard E. Bryant, M.D. https://kaiserpapers.com/lyme/bryanthelp.html

Treatment Guidelines

Evidence Based Guidelines for the Treatment of Lyme Disease International Lyme and Associated Diseases Society (ILADS) https://kaiserpapers.com/lyme/pdfs/ilad-dia.pdf https://kaiserpapers.com/lyme/ilads-guidelines.html   Infectious Diseases Society of America (IDSA) http://cid.oxfordjournals.org/content/43/9/1089.full

In comparison here is what the IDSA recommended in the year 2000 https://kaiserpapers.com/lyme/pdfs/practice-guidelines-2000.pdf   ILADS vs. IDSA

Retraction of ...Clinical practice guidelines by the Infectious Diseases Society of America http://www.ilads.org/files/press_release_10_25_06.pdf   Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms  Associated with Lyme Disease  http://www.lymemd.org/Stricker.pdf

Lyme Wars - Patients with long term symptoms, lack a scientific explanation, and insurance companies' reluctance pay for treatment have created a perfect breeding ground for dissent. https://kaiserpapers.com/lyme/pdfs/lyme-wars.pdf   Kaiser Permanente Lyme Disease Executive Summary http://www.harp.org/eng/kaiserslymesummary.htm

Harassment of Lyme Disease Treating Physicians

Threat Of Disciplinary Action Creates Tense Atmosphere For Lyme Docs (Note; the first known case of Lyme disease doctor harassment occurred in Oregon and was initiated by Kaiser) https://kaiserpapers.com/lyme/persecute.html   General Accounting Office Investigation http://www.lyme.org/gao_investigation.html   Dr. Joseph Burrascano http://www.publichealthalert.org/Articles/susanwilliams/world%20renowned%20doctor%20retires.html   Dr. Charles Ray Jones   Dr. John Bleiweiss http://www.angelfire.com/planet/lymedisease/Lyme/Bleiweiss.html   Dr. Joseph Jemsek http://charlotte.rhinotimes.com/1editorialbody.lasso?-response=%2F1editorialbody.lasso&-token.folder= 2007-02-08&-token.story=154141.112113&-nothing&-token.viewcomments=yes

Dr. Ernie Murakami (British Columbia)   Letters of support regarding Dr. Murakami's invest­i­ga­tion.  and   And many others.

MAPS

Link to 1996 CDC Map showing distribution of Lyme disease vectors in the United States. (This map is no longer available at the CDC web site)   CDC Reported Cases of Lyme Disease 2009 http://www.cdc.gov/ncidod/dvbid/lyme/ld_incidence.htm   CDC National Lyme Disease Risk Map http://www.cdc.gov/mmwr/preview/mmwrhtml/rr4807a2.htm   California Risk Map - California Lyme Disease Association http://www.lymedisease.org/california/california_map.html   Washington Tick Distribution Map https://kaiserpapers.com/lyme/1990-lyme-study-washington.html   Tick Borne Disease Maps – Canines http://www.dogsandticks.com/NA-map-lyme-disease-dogs/index.html   Lyme Disease Maps - United States  

  

Note; Reliable tick distribution and tick disease studies are sorely lacking outside of well recognized endemic areas such as the Northeast, the Midwest, and California. For the most part, such studies are either nonexistent, decades old, or poorly executed in other parts of  the country where Lyme disease is not acknowledged to be endemic.

Also see maps in papers for Lyme disease in various states published elsewhere under Kaiser Papers Lyme disease information.

 

 

Public Law, Actions, Legal Opinions

Excerpts from Public Law 107-116 Signed by President Bush 1/10/02 https://kaiserpapers.com/lyme/presbush.html
"The Committee recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment."  
"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 for healthcare reimbursement, product (test) development, medical licensing hearings, and other legal cases."
 Connecticut Attorney General Lyme Disease Investigation and IDSA Settlement  Press Release:    http://www.rissenberg.com/images/Attorney_General__Attorney_General_s_  Investigation_Reveals_Flawed_Lyme_Disease_Guideline_Process,_IDSA_  Agrees_To_Reassess_Guidelines,_Install_Independent_Arbiter.pdf  (with a reference to Kaiser)  and  http://www.ct.gov/ag/lib/ag/health/idsaagreement.pdf  Mirrored here for historical purposes:

Connecticut Attorney General Investigation and Settlement Highlights Connecticut 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."
Gonzaga Law Review;  Unprecedented Antitrust Investigation into Lyme Disease Treatment Guidelines      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   https://kaiserpapers.com/lyme/pdfs/lymeantitrust.pdf

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 https://kaiserpapers.com/lyme/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

Conflicts of Interest in Lyme Disease: http://www.lymediseaseassociation.org/Conflicts.doc

IGeneX Laboratories has prepared an excellent summary of testing for Lyme and other tick borne diseases. http://www.igenex.com/

Discovery of new Lyme strains invalidates current tests    

"The Need for Clinical Judgement in the Diagnosis and Treatment of Lyme Disease" by EL Maloney - 2009  From which the Centers for Disease Control and Prevention (CDC). Table 1. ..... rom CDC epidemiologist Dr. Paul Mead.- ...... themes known to inflame phy­si­cians, and it misled readers regarding the professional credential

Armed Forces Pest Management Board Information Services Division Literature Retrieval System -- the LRS To retrieve literature from this site you will need to  log into the system as guest.  The initial message states that visitors are logged out to conserve server resources. Just click on the high hlighted link and you will automatically be signed in as guest. There are no forms to fill out and logging in is automatic.

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 - Statement by Igenex on Quality Assurance and Proficiency http://igenex.com/files/QA_PACKAGE_2010.pdf  IGENEX LICENSES Lyme Disease Network. A source of archived Lyme disease information and a dis­cus­sion group. http://www.lymenet.org/

Sites Not Recommended

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 tThe 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.http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html
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, not up-to-date and, sometimes, simply wrong. 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. The CDC's sponsorship of the private medical organ­i­za­tions, the Infectious Diseases Society of America and the American Lyme Disease Foundation, is highly inappropriate.   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

Tick Identification and Control

  Tick Identification
Lyme Disease Association http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_ Brochures/LymeRPrimer_2010.pdf   http://www.lymediseaseassociation.org/images/NewDirectory/Resources/LDA_ Brochures/Tick_Card_2009.pdf   Canadian Lyme Disease Foundation http://www.canlyme.com/ticks.html   TickEncounter Resource CenterUniversity of Rhode Island http://www.tickencounter.org/education/tick_identification
  Tick Control
How to Manage Pests of Homes, Structures, People, and Pets University of California Davis http://www.ipm.ucdavis.edu/PMG/PESTNOTES/pn7485.html

 

 
 Lyme Disease Activism Sites
Lyme Policy Wonk by Lorraine Johnson, JD http://www.lymepolicywonk.org/

 

“Under Our Skin” blog by Kris Newby http://underourskin.com/blog/   Lyme Disease Network. A source of archived Lyme disease information and a dis­cus­sion group. http://www.lymenet.org/   The Lyme Disease Foundation by Karen Vanderhoof-Forschner This was the first site related to Lyme disease activism.

The site appears to be inactive but there is some worthwhile information. http://www.lyme.org/front.htm   International Lyme and Associated Diseases Society http://www.ilads.org/   Lyme Info is an excellent resource for information.

The site is well-organized and very comprehensive. http://www.lymeinfo.net/lymefiles.html   Canadian Lyme Disease Foundation http://www.canlyme.com/   Melissa Kaplan’s Lyme Disease Page; “An Exercise In Nailing Jello To The Wall”. http://www.anapsid.org/lyme/

Lyme Disease Support Forums is national in scope and includes a number of forums including General and Support, Medicine and Treatments, Doctor Requests and others.

The Birth Certificate of Kaiser Permanente This factual and indisputable film reveals the foundation of the Kaiser Permanente health plan and provides a perspective on why Kaiser will not deal with the complexities and expenses associated with Lyme disease and other tick-borne diseases.  It was created by Juperina Stein who was irrepairably harmed by Kaiser.  The film is less than three minutes in length. This is at YouTube at: Memorable and Not So Memorable Quotes by Lyme Disease Denialists  

This compilation of ludicrous quotes by certain of the Infectious Diseases Society of America (IDSA) Lyme disease 

guideline authors, their cohorts, and other Lyme disease denialists was started by an early Lyme disease activist named 

Douglas Dodge. This compilation had not been updated for many years. Some have been recently added. There are many 

more that could be added.

 

These comments should be preserved so they are not forgotten.

https://kaiserpapers.com/lyme/memorable-quotes-by-lyme-disease-denialists.html

Recommended Books
Cure Unknown: Inside the Lyme Epidemic by

Confronting Lyme Disease Patient Stories - Miguel and Bo. http://www.confrontinglyme.com/miguel.html 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

God Science The Secret World of Rampant Genetics, Hidden Illness, and Biotech Profiteering by PJ. Langhoff. http://www.godsciencebook.com/

Recommended  Videos

February - 2 - 2011 - News Article - Film on Lyme disease, panel of doctors to come to Battle Ground Cinema https://kaiserpapers.com/lyme/film.html

Eugene Weekly articles in response to an original article on Lyme disease by Sarah Hendrickson, M.D., in her Viewpoint, “Lyme Disease Rare (in Oregon)” (1/28/2010).

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.”  Film Website: 

Lyme Disease Map Obtained from the CDC
Lyme Disease Map from the CDC

kaiserpapers.com/lyme kaiserpapers.com  In Copyright since September 11, 2000

© 2000-2024 Kaiser Papers   | Privacy policy   | Contact  | Notices

© 2000-2024 Kaiser Papers   | Privacy policy   | Contact  | Notices