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Kaiser Permanente Lyme Disease Information – A Critique
The Kaiser Healthwise Handbook and its Internet equivalent are sources of incomplete, incorrect and misleading information for Lyme disease.[1] Selected issues are discussed below.
Kaiser states;
“On the Pacific Coast, the western black-legged tick can carry the disease, but only 1% are infected. The percent of infected ticks is slightly higher (3-6%) in California’s northern coastal counties of Sonoma, Humboldt, Lake, and Mendocino. In fact the risk of getting Lyme disease is very low in California.”
The facts;
Certain areas of California are highly endemic for Lyme and other tick-borne diseases. The vector tick is found in 55 of California's 58 counties. In Mendocino County, two hours north of San Francisco, the average tick infection rate is 15 percent (range 4 percent to 41 percent), and the outdoor lifestyle brings frequent exposure to ticks.[2] These tick infection rates are on par with the worst areas of the Northeastern United States where Lyme disease is epidemic. Bites by multiple ticks can increase the probability of infection.
A research study in the Ukiah area found 24 percent of the residents had positive Lyme tests and 37 percent had definite or probable Lyme disease.[3] Another research study using tick-saliva antibodies suggests that more than one-third of San Francisco Bay Area residents have been bitten by Ixodes pacificus, the tick that is known to carry Lyme disease. [3] These facts contradict the statement that “the risk of getting Lyme disease is very low in California.”
The Centers for Disease Control (CDC) classifies the West Coast, particularly northern California, and the Northeast and North-central states as the areas with the highest incidence of Lyme disease in the United States. [4]
Other tick-borne infections endemic to California and the Pacific Northwest are Babesia, Ehrlichia, Bartonella, and Tularemia. These can either present as coinfections of Lyme disease or as a sole infection. In some areas where studies have been done, coinfections have been shown to be more prevalent than infections with Lyme disease alone.
Lyme disease is the fastest growing reportable infectious disease in the United States based on an analysis of CDC reported cases that are based on a passive, not mandatory, reporting system. The CDC has acknowledged that reported statistics greatly understate the true incidence of the disease. [5] The actual number of new cases probably exceeds ten times reported cases, or about 200,000 new cases per year.[6]
Kaiser states;
“The first sign of Lyme disease is usually a spreading red rash around the tick bite that looks similar to a “bull’s-eye” and begins four days to three weeks after the bite.”
The facts;
The erythema migrans, or “bull’s-eye” rash, only occurs in about 50% of those infected. It is not always the first sign of Lyme disease. It is a sign of the dissemination of the disease. Flu-like symptoms after exposure are usually the first sign of infection. [7]
Kaiser states;
“The next most common sign of Lyme disease is joint swelling and pain, or loss of movement on one side of the face. This usually occurs a few weeks or months after the bite.”
The facts;
This is a very narrow and restrictive definition of Lyme disease and the symptoms cited are not at all common. Bell’s palsy or loss of movement on a side of the face, only occurs in 5% to 10% of those infected. [7] Bell’s palsy can affect both sides of the face. Bell’s palsy is not considered a symptom of early-stage Lyme disease.[8] It is a neurological symptom and evidence of cranial nerve involvement. Joint swelling can be intermittent or may not occur at all.[9] Using these two symptoms only as clinical criteria will miss the vast majority of Lyme disease cases. Chronic fatigue and lethargy are the most common manifestations of Lyme disease.
Lyme disease is a serious bacterial infection that has been known to affect nearly every organ system in the body and can have devastating consequences. It is also known as Lyme borreliosis. According to the Centers for Disease Control, “…disseminated infection may be manifest as disease of the nervous system, the musculoskeletal system, or the heart.
Early neurologic manifestations include lymphocytic meningitis, cranial neuropathy (especially facial nerve palsy), and radiculoneuritis. Musculoskeletal manifestations may include migratory joint and muscle pains with or without objective signs of joint swelling. Cardiac manifestations…may include myocarditis and transient atrioventricular blocks of varying degree. B. burgdorferi infection in the untreated or inadequately treated patient may progress to late disseminated disease weeks to months after infection.”[9]
The CDC description and more comprehensive information supported by a plethora of peer-reviewed research are at odds with Kaiser’s limited definition of this disease.
Kaiser states;
“After exposure to tick areas, search clothing for ticks, then wash clothes. Perform a body check for ticks after exposure and on the following day.”
The facts;
Nymphal ticks are the primary source of infection. They are very small and rarely noticed even with body inspection. The majority of those infected with Lyme disease did not notice the tick.
Kaiser states;
“Throw away the tick.”
The facts;
Do not throw away the tick if you are able to retrieve it. The tick should be stored in a glass jar. It can be an important diagnostic tool. Public health departments can test ticks for Lyme disease. Private laboratories offer highly specific PCR (DNA) testing for Lyme disease and coinfections. Testing the tick by PCR may avoid diagnostic problems in later stages of tick-borne infections and can be done months to perhaps years after retrieval.
Kaiser states;
“Blood tests should not be done after a tick bite, because infection is rare and cannot be detected in your blood for several weeks.”
The facts;
The immune reaction to Lyme disease takes some weeks to develop. However, research has shown that about one-third of proven Lyme cases are seronegative by most blood tests.[14] The test that Kaiser will offer, the ELISA, will only detect about half of proven Lyme cases at best (four weeks after the bite). In one Kaiser study, 117 blood samples of physician and patient suspected Lyme disease were analyzed by ELISA.[10] Only one came back positive. Kaiser has used this study to support their contention that Lyme disease is rare in California. It is more likely an example of flawed testing procedures, improper specimen handling, possible sample degradation during cross-country shipping, possible improper strain comparison, and the inappropriate use of this test for cases beyond early-stage Lyme disease.[11] The ELISA is used as a screening test for new infection and is of limited value for the diagnosis of late-stage Lyme disease.[12] The ELISA is a first-tier test required by the Centers for Disease Control for surveillance reporting purposes which has criteria so strict that very few, even with proven Lyme disease, are able to meet the criteria. The case definition was structured so that there would be little doubt that cases that meet the criteria have Lyme disease. It is used to identify new cases of Lyme disease so that the CDC can determine trends in the geographical spread and frequency of the disease. Kaiser’s diagnostic protocols inappropriately conform to CDC surveillance criteria. The CDC specifically directs health care practitioners that surveillance criteria are not to be used for diagnosis. [14]
The official statistics compiled by the CDC and California, Oregon and Washington are not a measure of the true incidence of Lyme disease in these states. The State of California Lyme Disease Advisory Committee specifically discourages the use of the word “rare” to describe Lyme disease in California since the true incidence is not known.[3]
In addition, Lyme disease can be misdiagnosed as fibromyalgia, chronic fatigue syndrome (CFS), multiple sclerosis (MS), Lou Gehrig’s disease (ALS), lupus, Parkinson’s disease, Alzheimer’s disease, cardiac problems and a number of other conditions. Lyme disease is rarely considered for these diagnoses but some of these conditions are certainly not rare.
Kaiser states;
“Blood tests are helpful in diagnosing Lyme disease when signs of the disease are found by a physical exam.”
The Facts;
The ELISA test that Kaiser orders only detects recent infection that may or may not be due to Lyme disease. The ELISA has been shown to be an unreliable test in many patients with Lyme disease, both in early infection and later disease.[12] The Western Blot tests are specific to Lyme disease but are not ordered by Kaiser unless the patient has a positive ELISA. Over 75% of patients with chronic Lyme disease are negative by ELISA, while positive with Western Blot.[12] A Western Blot done by a reliable reference laboratory showing detailed antibody responses can be used for diagnosis of late-stage Lyme disease. Western Blot results are reported as “positive” or “negative” depending on whether or not strict CDC criteria were met. An experienced physician can determine the presence of the disease using detailed Western Blot results although the test summary may be reported as CDC “negative.”
The National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health, states that “the most appropriate serologic test for prior infection with Borrelia burgdorferi, the spirochete that causes Lyme disease, is the IgG western blot assay.”[13]
Kaiser fails to provide any caution to patients with regard to coinfections. Tests for coinfections should be done in conjunction with Lyme disease. Coinfections can require different treatments than those for Lyme disease. Some coinfections can be fatal. A physical exam is only part of a clinical workup in the diagnosis of Lyme disease, particularly since symptoms can be intermittent. Many symptoms cannot be determined by a physical exam. An example would be impaired mental function, which requires specialized high-quality SPECT imaging for physical proof of impairment. The CDC maintains that Lyme disease requires a clinical diagnosis. This would include possible place of exposure, a history of symptoms known to be consistent with Lyme disease, differential diagnosis to rule out other causes for the symptoms, and blood tests specific to Lyme disease, to name some of the factors which should be considered in addition to a physical examination.[4] Kaiser states;
“Lyme disease can be cured if diagnosed early and treated with the correct antibiotic. However, antibiotics should not be given just for tick bites, unless there is proof of infection.”
The facts;
Kaiser is known by Lyme disease support group leaders in Kaiser service areas to provide only minimum treatment for early-stage Lyme disease, if it is diagnosed at all. Undertreatment, prescribing low doses of antibiotics for short periods of time, has been known to result in very difficult and treatment-resistant cases of Lyme disease. [12]
Prophylactic antibiotics are recognized as an acceptable form of treatment although their effectiveness in low doses and short duration remains controversial. [15]
If left untreated or undertreated, late Lyme disease can occur weeks, months, or years after infection.[2] There is no mention of late-stage Lyme disease in Kaiser’s member information. Late-stage disease can be highly debilitating or incapacitating, can have serious consequences and can require prolonged medication. In fact, given the current state of medical knowledge of Lyme disease, it may not be possible to eradicate the Lyme bacterium once the disease progresses to later stages. But it can certainly be treated and quality of life can be resumed.
References;
1 Kaiser Permanente, Prevention & Self-Care, Lyme Disease & Tick Bites
http://www.kaisersantaclara.org/downloads/lymedisease.pdf (Note that Kaiser has removed this from the web) document stored and made available to the public here: https://kaiserpapers.com/lyme/pdfs/kpsantaclaralymedisease.pdf2 An Update on the Epidemiology of Lyme Disease in California, Medical Board of California, October 2001 http://www.dhs.cahwnet.gov/ps/dcdc/disb/pdf/dhs_lyme_medbd_news_10_2001.pdf
3 Lyme Disease Advisory Committee Minutes of the April 27, 2001 Meeting, California Department of Health Services http://www.dhs.cahwnet.gov/ps/dcdc/disb/pdf/LDAC%20Minutes%2027%20Apr%202001.pdf
4 CDC Guide To Lyme Disease http://www.nddh.org/CDC%20Guide%20to%20Lyme%20Disease.htm
5 Centers for Disease Control, Lyme Disease, Epidemiology http://www.cdc.gov/ncidod/dvbid/lyme/epi.htm to https://kaiserpapers.com/lyme/pdfs/epi.pdf
6 Surveillance for Lyme Disease – United States, 1992-1998, Centers for Disease Control http://www.cdc.gov/epo/mmwr/preview/mmwrhtml/ss4903a1.htm
7 University of California at Davis, “What are the symptoms of Lyme disease?” http://www.ucdmc.ucdavis.edu/ucdhs/health/a-z/16lymedisease/doc16symptom.html
8 Steere AC, et al, Clinical Manifestations of Lyme Disease, 1986, National Library of Medicine
9 Centers for Disease Control, Lyme Disease, Diagnosis http://www.cdc.gov/ncidod/dvbid/lyme/diagnosis.htm
10 "The Use of Serologic Tests for Lyme Disease in a Prepaid Health Plan in California," Catherine Lay, MS et al (JAMA 2/9/94-Vol. 271, No. 6) http://jama.ama-assn.org/cgi/content/abstract/271/6/460 and http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=8080498&dopt=Abstract
11 Baker, CJ, IDSA Public Statements and Positions, Letter to JCAHO on Microbiology Laboratories, March 1, 2001, Infectious Diseases Society of America http://www.idsociety.org/PA/PS&P/JCAHO_3-1-01.htm https://kaiserpapers.com/lyme/idsa.html12Donta, Sam, Late and Chronic Lyme Disease, May 15, 2002, Boston University School of Medicine http://www.immunesupport.com/library/showarticle.cfm/ID/3579
13 Profile, Fiscal Year 2001, NAIAD, pages 68-69. http://www.niaid.nih.gov/publications/NIAIDProfile/pdf/profile2001.pdf
14 Excerpts from Public Law 107-116 Signed by President Bush 1/10/02 “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...” https://kaiserpapers.com/lyme/presbush.html
15 Nadelman, et al, Prophylaxis with Single-Dose Doxycycline for the Prevention of Lyme Disease, New England Journal of Medicine, July 12, 2001 http://content.nejm.org/cgi/content/abstract/345/2/79kaiserpapers.com/lyme kaiserpapers.com In Copyright since 2000