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ABOUT US | MCRC | CONTACT| CONTACT FOR LYME DISEASE INFORMATION kaiserpapers.com/lyme | kaiserpapers.com 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. The Players Baker, Philip J. NIH/ALDF Barbour, Alan IDSA/ALDF Chunn, John Private Practice Dattwyler, Raymond IDSA Fish, Durland IDSA/ALDF Gilbert, David IDSA Gluckman, Stephen IDSA Johnson, Barbara J.B. CDC/IDSA Mead, Paul CDC/IDSA Nadelman, Robert IDSA Ostroff, Steven CDC Rahn, Daniel IDSA Schoen, Robert IDSA Shapiro, Eugene IDSA/ALDF Sigal, Leonard IDSA Stamm, Walter IDSA Steere, Allen IDSA/ALDF Weld, David ALDF Witt, David Kaiser Permanente Wormser, Gary IDSA/ALDF
Philip J. Baker, Not a M.D., was for ten years the Program Officer for the NIH overseeing Lyme disease research grants. An overwhelming proportion of these grants were awarded to a few favored members of the Infectious Diseases Society of America (IDSA) who authored the controversial 2006 IDSA Lyme disease guidelines.
Baker is now Executive Director of the American Lyme Disease Foundation (ALDF). The ALDF is clearly associated with the IDSA Lyme disease guideline authors and their cronies.The misinformation in the abstract below is not a quote, per se, but represents Baker’s biased and inaccurate views. The supporting statements can be found in the text of the article. It is unfortunate that many unknowledgeable people view this as fact.
"There is no better example of a relentless attack on evidence-based biomedical research and the integrity of outstanding scientists than that associated with the treatment of a poorly defined condition called "chronic Lyme disease." Here, a scientifically naive general population, the lay press, and legislators, who in most instances are unable to evaluate and judge scientific evidence properly, have been misled by patient advocate groups to believe that extended antibiotic therapy is the best and only solution to this condition. This has resulted in the unprecedented intrusion of government and the legal systems into the practice of medicine and scientific research. Because there is no clinical evidence that this condition is due to a persistent infection, advocating extended antibiotic therapy is not justified and has been shown to be harmful and of no benefit."
-American Lyme Disease Foundation - Chronic Lyme disease: in defense of the scientific enterprise - Baker, PJ, 2010 http://www.ncbi.nlm.nih.gov/pubmed/20631327
In one critique, the former Lyme disease program officer for the National Institutes of Health, Phillip Baker, wrote, “A partisan film such as this ("Under Our Skin") can only undermine public health by encouraging naive individuals to seek unproven remedies.”
Baker, near retirement, tells CDC's (Barbara) Johnson, "I'll certainly miss all of you people - the scientists - but not the Lyme loonies."
Johnson replies, apparently to Baker's plan to remove competing Lyme guidelines from a government web site: "This latest gesture is much appreciated...I am certainly with you."
(Barbara Johnson Ph.D. is Molecular Biology Chief, Vector Borne Diseases, Centers for Disease Control.)
-From a private email to the CDC obtained under the FOIA, September 2007
http://www.poughkeepsiejournal.com/Interactive/lyme_ties/
"To characterize such individuals (who contest his biased views) as (Lyme) “loonies” might be too kind a description".
-Response to Poughkeepsie Journal 2013
Barbour "Lyme disease is rarely fatal: only a few deaths are attributable to the disease in the entire world":
-Alan Barbour, MD, in Lyme Disease, The Cause, The Cure, The Controversy, page 34
"[Lyme disease] is curable and stigma-free":
-Alan Barbour, MD, ibid., page 192
"Lyme disease bacteria remain in the skin for two or more days until spreading to the other parts of the body. Until the microorganisms spread, there is no need for an antibiotic that is distributed throughout the body":
-Alan Barbour, MD, Lyme Disease, The Cause, The Cure, The Controversy, page 225
"Like Lyme disease, CFS and fibromyalgia are diagnosed using strict criteria that have been agreed upon by physicians and other experts. . . . Diagnoses of CFS, fibromyalgia and chronic Lyme disease undoubtedly are being made in cases that do not fully meet the strict criteria":
-Alan Barbour, MD, Lyme Disease, The Cause, The Cure, The Controversy, pages 202-203
"Many consider Lyme disease to be a nuisance that involves a trip to the physician's office every year or two and a few weeks of antibiotics":
-Alan G. Barbour, MD, Lyme Disease, The Cause, The Cure, The Controversy, page 243
". . . a topical antibiotic to prevent Lyme disease after a tick bite is desirable":
-Alan Barbour, MD, Lyme Disease, The Cause, The Cure, The Controversy, page 244
"An antibiotic ointment might prevent infection from other bacteria but would likely have little effect on B. burgdorferi":
-Alan Barbour, MD, ibid., page 222
"For many people who become infected with Lyme disease spirochetes, this immune response that limits the erythema rash is sufficient to cure them of the infection. The spirochetes have either been completely eliminated from the body or so limited in their spread that they no longer can cause harm":
-Alan Barbour, MD, ibid., page 8
"Eventually, antibodies, perhaps aided by lymphocytes, attach to spirochetes in the blood and remove them from the circulation. However, by the time that occurs, some spirochetes have left the blood and entered distant organs. They are able to do this because they can attach themselves to the sides of blood vessels and then penetrate the cells that line veins and arteries. Once they reach the other side of the blood vessels, spirochetes can reside and move in the liquid between cells":
-Alan Barbour, MD, ibid., page 9
A B. burgdorferi organism may spend some of its life inside cells. After all, for these bacteria to leave the blood and go into tissues, they must pass through cells that line the blood vessels. . . . these intracellular spirochetes can escape the effects of the antibiotics that do not penetrate into cells well. When an antibiotic of that class is stopped, so the argument goes, the live bacteria inside the cells could reseed the rest of the body":
-Alan Barbour, ibid., pages 125-126
"The fact that the N.I.H. plans to spend about $4 million on this study [the long-term use of antibiotics to treat Lyme disease] means less money for more useful projects":
-Alan Barbour, MD, in The New York Times OP-ED of July 5, 1997
“Lyme disease is primarily a disorder of suburban, educated middle- and upper-class people. Lyme disease can be as disabling as syphilis, but there usually is not a stigma to having Borrelia burgdorferi infection.”
-Alan Barbour, MD. Journal of the American Medical Association, January 21, 1998
“Currently, there are many sources of information about Lyme disease, much of which is in disagreement with the experts' advice. These sources include the Internet, books on Lyme disease written by laypersons, and pamphlets, newsletters, and call-in help lines of patient advocacy groups.”
-Alan Barbour, MD. Journal of the American Medical Association, January 21, 1998
John Chunn MD is a pediatrician in Bend, Oregon who claims a specialty in infectious diseases. He is completely unknown when it comes to Lyme disease. His comments are posted here only because they demonstrate classic and dangerous ignorance about Lyme disease. It’s a shame people have read these ridiculous and potentially harmful comments.
“Bend specialist Chunn said long-term antibiotic therapy is not needed because the bacteria are so easy to kill. “This bacteria dies so easily you can’t believe it. It just rolls over and dies.”
“If you get exposed and get treated,” said Dr. John Chunn, a Bend pediatrician and specialist in infectious diseases, “you will be positive 10 years later.”
Bend Bulletin, May 2009 – “A Disease In Debate”
Dattwyler "Negative serologic tests mean negative, and positive tests have up to a 50 to 1 chance of being false, and having a positive test does not mean you're not cured":
-Raymond Dattwyler, MD, in 1993 WLIW TV interview
Fish "Without the Lyme disease vaccine, we're back to ground zero in terms of how we're going to combat the Lyme disease epidemic," says Fish, conference program co-chair…Companies "may not want to take on (development of) a vaccine for a disease that is treatable and has a relatively low incidence.”
-Durland Fish, in USA Today quoted by Anita Manning, August 21, 2002
He proceeds down the list, name by name: "Totally bogus." "He killed one of his patients." "They tried to shut him down." Words like "crackpot," "wacko," "buffoon" and "fraud" pepper his discourse. A little later, he stops to ponder a question. "I don't know," he says after a moment's thought. "I don't know why they hate me so much."
-State Joins Dispute Over Lyme- Scientists Battle Over Treatment. By Michael Regan| (Hartford, CT) Courant Staff Writer, August 24, 2007
He had a degree in biology and wanted to do graduate work on mammals. But with the draft looming, he opted instead for an occupational deferment. "I went to work for the state health department, totally bored out of my mind inspecting restaurants. A terrible job, and I wasn't very good at it," Fish said. ... "I'm not a very good cop. ... I used to coach them on how to get by - how to cheat."
-State Joins Dispute Over Lyme- Scientists Battle Over Treatment. By Michael Regan| (Hartford, CT) Courant Staff Writer, August 24, 2007
(David Gilbert was a president of the Infectious Diseases Society of America (IDSA)) in 2002. He is known for criticizing Lyme disease professionals for their fees. Yet, he accepts fees from major drug companies that profit from symptomatic treatment of Lyme disease. Gilbert is associated with Providence Health Plan in Portland, OR.)
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. "Most of the individuals we're talking about, their clinical and lab pathology is stone-cold normal."
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.
Candida yeast infections were a popular theory for a time, he said. "It was fibromyalgia for a while, and maybe still is," he said. "But I think, unfortunately, Lyme disease will take longer to fade away."
-Source for all quotes - Bitten by the controversy bug by Andy Dworkin (Portland, OR) The Oregonian, July 20, 2005
Gluckman Dr. Stephen Gluckman, director of clinical services in the University of Pennsylvania Hospital’s infectious disease division, says the tests for Lyme are "wonderfully good." He believes the real problem is the doctors who are too willing to diagnose Lyme disease. "There are two types of Lyme doctors — and I’m not saying this in a negative way — there are doctors who are scientific, like me, and there are a lot of self-proclaimed Lyme doctors. We speak two different languages, we have nothing in common."
-Steven Gluckman, MD, Philadelphia City Paper quoted by Stephanie Ramp, July 8, 1999
(Barbara J.B. Johnson, Centers for Disease Control, patent holder and avid supporter of the unreliable ELISA test used for Lyme disease screening and recommended by the CDC and IDSA)
“…I deal with insurance issues all the time…I hear feedback from this all the time. I know I may have a pretty good pulse on what’s going on with the insurance companies with the (IDSA Lyme disease) guidelines and they are clearly relied on to deny treatment…”
“I am Barbara Johnson. I am a biochemist by training and I am speaking today on behalf of the Centers for Disease Control and Prevention concerning serodiagnosis of Lyme disease. Specifically, my statement is in support of (the) IDSA recommendation in the guidelines to use two-tiered serology (an ELISA screening test followed by Western Blots if ELISA positive) to support the diagnosis of Lyme disease in patients who have manifestations other than acute erythema migrans.
-IDSA Lyme Disease Review Panel Hearing, July 30, 2009
Paul Mead is an epidemiologist and the Lyme disease spokesman for the CDC. His comments are unimaginative and a redundant robotic drone in line with the views of the Infectious Diseases Society of America (IDSA). Although he is an MD, Mead does not have clinical experience in Lyme disease and other tick borne infections. Yet he gives treatment advice behaving very much like a tool of IDSA.
His views are, for the most part, biased and potentially harmful. It is unfortunate that they have a major influence on unknowledgeable medical professionals. It is also unfortunate that these views are disseminated by blind and unquestioning major media outlets.
"There's not a great deal of published evidence that supports prolonged antibiotic treatment," said Dr. Paul Mead, based in Fort Collins, Colo., and the leading Lyme expert for the federal Centers for Disease Control and Prevention. "There is, however, evidence that these treatments can be harmful."
-Doctor Faces Discipline Over Lyme Disease Treatment, ABC News, April 2006
“Lyme disease is a focal disease, which is really concentrated in about ten states, principally, in the northeast, the mid-Atlantic, and the upper mid-West of the United States.”(This comment ignores the high prevalence of Lyme disease in the western US, the West Coast in particular. This misinformation causes doctors to believe Lyme disease is rare or nonexistent in the west and, therefore, it is not considered in differential diagnosis.)
-CDC Podcast, Get Ticks Off - October 2008
Nadelman "The erythema migrans rash, which occurs within a mean of 7 to 10 days after a tick bite, is present in 90% or more of patients with objective evidence of Lyme disease":
-Nadelman and Wormser, MDs, ibid., page 69
" . . . transmission of B. burgdorferi by I. Scapularis (hard ticks) probably takes days. In experimental animal systems (21) and humans (5), I. Scapularis rarely transmitted infection before 48 hours of attachment":
-Robert B. Nadelman, MD, and Gary P. Wormser, MD, in ACP's Lyme Disease, page 51
"However, most patients with late-stage Lyme disease are believed to have had antecedent erythema migrans (EM), a readily identified lesion, at the site of the bite (14, 35-38). Among more than 1,000 participants followed in prospective studies at our center (unpublished data) and elsewhere (10-13), none has been reported to have developed late or latent infection (latent infection is defined as asymptomatic seroconversion, the clinical significance of which is unknown)":
-Robert B. Nadelman, MD, and Gary P. Wormser, MD, ibid., page 53
"In a person from an area not endemic for Lyme disease, Lyme disease is an unlikely cause of an expanding erythematous rash":
-Robert B. Nadelman, MD, in ACP's Lyme Disease, page 206
"The timing and distribution of this patient's rash (occurring after antibiotic therapy) suggest a photosensitive reaction to antibiotics":
-Robert B. Nadelman, MD, ibid., page 208
Ostroff "Lyme is a yuppie disease that only rich suburbanites get."
-Dr. Steven Ostroff, Associate Director in the Infectious Diseases Division of the Centers for Disease Control and Prevention during interview by Illinois legislators in June 1997
Rahn "In the pre-antibiotic era of Lyme disease, they all [acute neurologic abnormalities of Lyme disease] were shown to remit spontaneously with complete recovery being the rule":
-Daniel W. Rahn, MD, in the American College of Physicians' Lyme Disease, page 39
"[Lyme] disease onset is heralded by appearance of a characteristic skin lesion, erythema migrans, at the site of a tick bite" : -Daniel W. Rahn, MD, in ACP's Lyme Disease, page 45
"Most patients with Lyme carditis experience complete recovery, even without antibiotic therapy":
-Janine Evans, MD, co-author with Daniel W. Rahn, MD, of ACP's Lyme Disease, page 86
"No long-term cardiac sequelae have been attributed to cardiac involvement in Lyme disease":
-Daniel W. Rahn, MD, ibid., page 40
"Patients with Lyme carditis can present quite dramatically. They usually require hospitalization and careful cardiac monitoring for potential serious complications":
-Janine Evans, MD, Assistant Professor of Medicine, Section of Rheumatology, Yale School of Medicine, in ACP's Lyme Disease, page 221
"When the pre-test probability [of Lyme disease] starts high, the post-test remains high when the test result is positive-- and again, the treatment decision remains unchanged. . . . If the pre-test probability is high, but the test result is negative, the post-test probability may be substantially lower. In both cases, the use of serologioc testing can shift the treatment decision. . . . Patient expectations may also influence a physician's decision to perform a diagnostic test or to institute empiric therapy. . . . On the practice-enabling side, a final component of the American College of Physicians Disease Management Program includes patient education tools":
-Anthony D. So, MD, MPA (Senior Advisor to the Administrator, Agency for Health Care, Policy, and Research. U.S. Department of Health and Human Services, Washington, D.C., and Daniel W. Rahn, MD, in ACP's Lyme Disease, page 193
Schoen "When I contradict a previous diagnosis of Lyme disease by another doctor, it is in order to reassure the patient":
-Robert T. Schoen, MD, Yale School of Medicine, quoted in a Letter to The Editor, New Haven Register, June 3, 1997
"Your [Douglas Dodge's] history and exam do not suggest that you had Lyme disease per se but your positive Lyme titers suggest that you were exposed to the Lyme bacteria, Borrelia burgdorferi. To be on the safe side we generally recommend a three-week course of Doxycycline as you are getting for asymptomatic patients with positive Lyme titers; although we don't know for sure that even this amount of therapy is necessary":
-Anne R. Bass, MD, of Robert T. Schoen, MD's office, in letter dated August 2, 1991
"The patient's [Christine Dodge's] history does not suggest Lyme disease but suggests more a viral illness of undetermined type. . . . I have sent an ELISA and Western blot from my office particularly at the patient's husband's urging although I anticipate that these will be negative. Even if they turn out to be positive I do not think that the patient's recent illness was due to Lyme disease, and in any case she has received a two- week course of Doxycycline":
-Anne R. Bass, MD, in letter dated August 2, 1991
"The result of Christine's Lyme titers from Yale came back. The ELISA was positive with an IgM of 200 and an IgG of 100, positive being greater than 100. A Western blot was done and showed a band at 41KD for both IgM and IgG. What all this suggests is that Christine has been exposed to Lyme disease at some time in the past. But once again, the clinical history that she has and the laboratory changes that she had when she was in the hospital over the summer do not suggest particularly acute Lyme disease but looked rather more like a viral hepatitis, even if we couldn't identify which virus. In any case, Christine has gotten the two-week course of Doxycycline which should be adequate treatment given her positive test": -Anne R. Bass, MD, in letter dated August 31, 1991
"In Lyme disease recipients, Western Blot analysis is indicated to distinguish disease from seroconversion caused by vaccination":
-Robert T. Schoen, MD, ACP's Lyme Disease, page 239
Shapiro "Lyme disease prevention requires only minimal precautions; even for people living in areas with the highest concentration of positively identified cases":
-Eugene D. Shapiro, MD, Yale Children's Health Letter, April 1995
"Over time, the [Lyme] disease tends to burn itself out, even without treatment, in many people":
-Eugene Shapiro, MD, quoted by Karen Freeman in The New York Times, October 24, 1996
"Children with only non-specific symptoms, such as headache, fatigue, or arthralgia, are very unlikely to have Lyme disease. Serologic tests for Lyme disease should not be ordered for such patients because a positive test result is very likely to be a false-positive":
-Eugene D. Shapiro, MD, in ACP's Lyme Disease, page 131
"Nearly 90% of children who develop Lyme disease have either single or multiple sites of erythema migrans":
-Eugene D. Shapiro, MD, ibid., page 132
"As many as 40% of the patients with well-documented late stage Lyme disease will not have had a preceding lesion of erythema migrans . . . as the only clinical manifestation of early Lyme disease. . . . The existence of a flu-like illness without erythema migrans of early Lyme disease has been clearly established":
-Eugene D. Shapiro, MD, et al., "Early Lyme Disease: A Flu- like Illness Without Erythema Migrans," Pediatrics 91, (1993): 456-59
"There is no evidence that congenital Lyme disease is a problem":
-Eugene D. Shapiro, MD, in ACP's Lyme Disease, page 132
"The prognosis of children with Lyme disease, both early and late, is excellent, with no evidence of chronic symptoms or long- term sequelae":
-Eugene D. Shapiro, MD, ibid., page 132
"Because of the low risk of Lyme disease and the excellent prognosis of children who do develop Lyme disease, prophylactic antimicrobial treatment is not recommended for children who are bitten by a deer tick":
-Eugene D.Shapiro, MD, ibid., page
"In patients presenting with nonspecific symptoms, the positive predictive value of serologic testing for Lyme disease is low":
-Eugene D. Shapiro, MD, ACP's Lyme Disease, page 224
"There are a ton of people with non-specific symptoms and most of their positives are false positives [for the ELISA and Western Blot], so they think they have this diagnosis of Lyme":
-Eugene Shapiro, MD, quoted by Stefanie Ramp in the Fairfield County Weekly, May 20, 1999
"If all you know is that you found a deer tick on your child, the risk is 1 to 2 percent at most of having Lyme disease. And then greater than 90 percent of those will show a rash at the site of the bite.":
-Eugene Shapiro, MD, in the April 1995 issue of Yale Children's Health Letter
"Most ticks are not infected and even if a child has been bitten by an infected tick, 36 to 48 hours are needed before transmission of the bacteria takes place.":
-Eugene Shapiro, MD, ibid.
"There are probably better ways to spend health-care dollars" than on a vaccine for Lyme disease:
-Eugene Shapiro, MD in the April 1995 issue of Yale Children's Health Letter
"It [LYMErix vaccine] is fairly expensive, and I think that the biggest problem is not Lyme disease but anxiety about Lyme disease, and I'm not sure how effective the vaccine is against anxiety about Lyme disease....I don't think most people are at really high risk for Lyme disease, so the benefits don't necessarily qualify the costs.":
-Eugene Shapiro, MD, a professor of pediatrics at Yale, quoted by Stefanie Ramp in the Fairfield Co. Weekly on May 20, 1999
"It's usually not Lyme disease unless it looks, smells, and tastes like Lyme disease":
-Eugene Shapiro, MD, in the April 1995 issue of Yale Children's Health Letter
If you only go to a Lyme literate doctor, you are likely to be diagnosed with Lyme disease, because that's what they do. If you go to Midas, you're going to get a muffler. (Chronic Lyme sufferers believe that the medical world would benefit immensely from Shapiro having a Midas muffler installed on his person).
So, you know, in an anecdotal sense, taking antibiotics and feeling better doesn't mean that the antibiotics are the reason that you felt better. It may have something to do with the belief that this doctor cares for me, I'm doing something to help myself, it's very complicated and we don't know all the answers...(Shapiro's rambling and inane commentary was rightfully terminated by the host of the program).
-Maryland Public Television - Direct Connection - Lyme Disease - Under Our Skin Review - June 27, 2011
Sigal "There is no risk involved in taking the vaccine. It's not as though we're taking the organism and mucking around with it, and giving you some of it. We're giving you pure protein. It's impossible to get Lyme disease from this vaccine":
-Leonard H. Sigal, MD, principal investigator of the "whole nine yards study" of a Lyme disease vaccine, quoted in the Vineyard Gazette, July 24, 1999
"The cognitive dysfunction that occurs with depression, fibromyalgia, anxiety, or primary sleep disorder can mimic the cognitive dysfunction of late Lyme disease"
-Leonard H. Sigal, MD, in ACP's Lyme Disease, page 141
"With the statistical methods used in ELISA, one is essentially assured that a positive test result will be obtained ultimately if the test is done often enough, and such a result would be a false-positive":
-Leonard H. Sigal, MD, in ACP's Lyme Disease, page 174
"Many patients have found a place in their personas for 'chronic Lyme disease,' and this may be the most permanently damaging aspect of Lyme disease":
-Leonard H. Sigal, MD, ACP's Lyme Disease, page 149
"It could be the fibromyalgia, but you cannot assume it is Lyme disease. Or it could be Lyme disease, but you should not assume it is the fibromyalgia":
-Leonard H. Sigal, MD, in American Journal of Medicine, vol. 98, suppl. 4A
"Tertiary neuroborreliosis can be differentiated from the early disseminated neurological disease by the fact that it is later, very frequently in association with inflammatory joint disease, but quite frequently it will be on its own, and sometimes it will be the very first manifestation of Lyme disease":
-Leonard H. Sigal, MD, Chief, Division of Rheumatology, Robert Wood Johnson Medical School, New Brunswick, N.J., in his paper read at Yale's 6th Annual Lyme Disease Symposium, June 16, 1993
"Lyme disease, although a problem, is not nearly as big a problem as most people think." The bigger epidemic," Dr. Sigal said, "is Lyme anxiety." And, he said, "even if you get the disease, it is easily treatable and it is curable."
-Leonard H. Sigal, MD, Quoted by Gina Kolata in New York Times, June 13, 2001
Walter Stamm was president of the Infectious Diseases Society of America (IDSA) in 2005. His affiliation was with the University of Washington in Seattle, WA. This comment demonstrates the inappropriate relationship between IDSA and the CDC.
“Dr. Stamm (President of IDSA at the time - 2005) commented that rogue guidelines are legitimizing long-term treatment for chronic Lyme disease; as long as these guidelines can be accessed, this type of treatment can be legitimized.” (The “rogue guidelines” undoubtedly refers to The International Lyme and Associated Diseases Society (ILADS). This meeting was the genesis of the 2006 IDSA Lyme disease guidelines.)
-Closed-door meeting CDC/Board of Scientific Counselors, May 12, 2005 (The minutes of this meeting have been removed from the Internet by the CDC.)
Steere "Standard antibiotic treatment [of Lyme disease] probably fails less often than one might think. Most apparent treat ment failures actually reflect misdiagnosis":
-Allen C. Steere in Hospital Practice, April 1993
"Of the patients [788] who did not have Lyme disease, 45% had had positive serological test results for Lyme disease in other laboratories, but all were seronegative in our laboratory (17)":
-Allen C. Steere, MD, as quoted by Polly Murray in The Widening Circle, page 238
"Almost two decades after Steere, now a professor at Tufts University School of Medicine, identified the first cases of Lyme disease, he finds that 'because of misdiagnosis, the spread of this disease may be more apparent than real.' What might have looked like an epidemic of a new, highly dangerous disease, instead seems to have been blown out of proportion to the real danger":
-Yale Children's Health Letter, April 1995
"Eventually, both intermittent and chronic Lyme arthritis resolve, even in untreated patients":
-Allen C. Steere, MD, in the New England Journal of Medicine, January 27, 1994
"In all too many cases what's being called psychiatric disease due to Lyme disease is not and other forms of treatment than prolonged antibiotic therapy would be more effective for these people. . . . Lyme disease can give rise to a subtle neuropsychiatric picture in which subtle memory deficit is the most common manifestation:"
-Allen C. Steere, MD, in the The Boston Globe, August 9, 1999
"Misdiagnosis not only leads to underreporting of new cases, but also may lead at times to overdiagnosis, since Lyme disease has almost become a euphemism for chronic cases of pain and fatigue syndromes":
-Steere et al., "The Overdiagnosis of Lyme Disease," JAMA 269 (1993): #1812-1816
"A common problem in diagnosis [of Lyme disease] is mistaking fibromyalgia or chronic fatigue syndrome for Lyme disease (Box 6.2). This problem is compounded by the fact that a small percentage of patients develop fibromyalgia in association with or soon after erythema migrans or Lyme arthritis, suggesting that B. burgdorferi is one of the stressful events that may trigger this chronic pain syndrome":
-Allen C. Steere, MD, in ACP's Lyme Disease, page 114
"We remain skeptical that antibiotic therapy helps":
-Allen C. Steere, et al., Annals of Internal Medicine 86 (1997): 685
"To sum up the therapy of Lyme arthritis (Lyme disease), it appears that at this point only symptomatic treatment is feasible":
-Steere et al., Hospital Practice 143 (April 1978)
On the neurological abnormalities of Lyme disease, Dr. Steere and his colleagues reported that they "have noted no benefit from antibiotic treatment":
-Reik, L., Steere, A.C. et al., Medicine 58, 281 (1979)
"When Steere assured me that the disease was self-limiting, I stopped using antibiotics":
-Dr. Edgar Grunwaldt of Shelter Island, N.Y., quoted by Berton Roueche in The New Yorker, September 12, 1988
"The fibromyalgia syndrome, even if triggered by infection with B. burgdorferi, seems not to respond to antibiotic therapy (48). There is no evidence that prolonged antibiotic therapy for many months or years is of benefit in the treatment of either Lyme arthritis or fibromyalgia . . . (49)":
-Allen C. Steere, MD, in ACP's Lyme Disease, page 119
"Multijoint swelling accompanied by tendinitis [also tendonitis] and bursitis would be an unusual presentation of Lyme disease. Alternative diagnoses should be pursued, including systemic lupus erythematosus, seronegative arthropathies, and crystal-induced arthritis (gout or pseudogout)":
-Allen C. Steere, MD, ACP's Lyme Disease, page 218
"Within days or weeks after inoculation, the Lyme spirochete may spread in the patient's blood or lymph to many sites. The spirochete has been recovered several times from blood during this stage, and it has also been seen in small numbers in specimens of myocardium, retina, muscle, bone, synovium, spleen, liver, meninges, and brain" -Allen C. Steere, MD, New England Journal of Medicine, August 1989 "A lot of what has been described as Lyme disease, and attributed to Lyme disease, would not stand up to the scrutiny of peer review":
-Allen C. Steere, The Boston Globe, August 9, 1999
"There is more fiction to Lyme disease than fact, and only experts like myself know how to tell the two apart":
-Allen C. Steere, MD, at the 1998 Dutchess County meeting" [I'll talk] only about Lyme arthritis, not all features of Lyme disease--which is too big a topic. . . . [Let me] just be a rheumatologist":-Allen C. Steere, MD, San Francisco, April 1999, interview with Jean Hubbard of Lyme Times, April-June 1999 edition
"The symptoms [of Lyme disease] are slowly progressive, I think, with the spirochete still present. But syphilis is treatable with antibiotics, and so is Lyme disease . . . and central nervous system symptoms in Lyme disease, like CNS symptoms seen in syphilis, can occur after a long latent period":
-Allen C. Steere, MD, ibid.
"I suppose Lyme disease is one of the few diseases that some people want to have because it's defined. I think it's very difficult to have something that is not well understood":
-Allen C. Steere, The New York Times, May 4, 1999
"Eventually, both intermittent and chronic Lyme arthritis resolve, even in untreated patients":
-Allen C. Steere, MD, New England Journal of Medicine, January 27, 1994
While everyone seems to have a very adamant opinion about the safety and efficacy of Lymerix, it strikes one as slightly prophetic that the conservative Dr. Allen Steere, one of the leading researchers of the vaccine, doesn't plan to use it -- supposedly because he doesn't live in a Lyme-endemic area (Massachusetts).
-The Dirty Truth About Lyme Disease Research by Stephanie Ramp, Albion Monitor August 7, 1999
He read a part of the letter that said that the patient had undergone an M.R.I. for her dizziness but that the results came back negative. If a spirochete had damaged her brain, he said, the tests would show lesions. "Let me read you another part,"he said, "so that you understand: 'What do I do to be well again? My life has been turned upside down by "Lyme." I . . . haven't been able to work in 5 years. I've been divorced and have claimed bankruptcy due to mounting medical bills. Currently I am also trying to take care of my mother who lives with me and is suffering from pancreatic cancer, on top of all this I feel terrible."' Steere put down the letter and stared at me for a long moment. "What I suspect is that she doesn't have Lyme disease but some kind of psychiatric illness," he said.
Stalking Dr. Steere Over Lyme Disease, New York Times, June 17, 2001
Things had gotten so bad that by the time I tried to reach Steere in February, he had gone into seclusion, refusing to give interviews and, according to a friend, traveling to speaking engagements under an alias. When I called the public-relations firm that he had recently hired, the spokeswoman told me that he was afraid for his life. ….Steere's lab and private office were in their own section of the hospital, tightly guarded by bolts and alarms. When I rang the bell at his lab, a woman looked at me through a glass pane and then buzzed me in….. Hovering nervously about the room, he told me that every time someone had done an article, the media had botched the facts and that he had simply given up trying to illuminate them.…"We are now in the political phase of the disease, and I am not a very public person." Despite his obvious discomfort, he invited me to sit in on several consultations the next morning. But then, in the midst of those rounds, he again grew wary and led me into a different office and shut the door. He said that he wanted to talk to me, to help me better understand the illness, but that he was afraid of the public reaction to his words: "Doctors can't say what they think anymore. If you quote me as saying these things, I'm as good as dead."
(Much ado about nothing. Steere took a comment from a poster in the Netherlands who used his real name on a public newsgroup to bring pity and attention to himself. The comment read that Steere should be “terminated” for his limited, biased and harmful views on Lyme disease. The Dutch poster did not have a 100% understanding of the nuances in the English language. He later clarified it to mean that Steere should be terminated, meaning fired, from his position at the university where he worked. His employers apparently fell for Steere’s attention seeking ploy and spent unknown amounts of money providing “security” for Steere.)
-Stalking Dr. Steere Over Lyme Disease, New York Times, June 17, 2001
Weld "A negative test [for Lyme disease] is about 99% correct."
-David Weld, Executive Director of the American Lyme Disease Foundation (which should not be confused with The Lyme Disease Foundation in Hartford) in The Healthy Traveler, November 1997
"Many of the researchers from whom we derive new information, including Dr. Steere, are also practicing physicians with years of experience in diagnosing and treating Lyme disease. The suggestion that clinicians, who depend on medical journals for information, do not share the conclusions of Dr. Steere and other like-minded researchers is, at best, misguided. . . . The views of these researchers are, in fact, widely respected and adopted by their practicing colleagues."
-Reply by David L. Weld, executive director of the American Lyme Disease Foundation in Somers, N.Y., to an article in The New York Times of May 4, 1999
"Lyme is a socially acceptable disease. You can talk about it at any cocktail party."
-David Weld, head of the American Lyme Disease Foundation, in USA TODAY
"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 serves 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 was 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). The “world-class” laboratory Kaiser uses for Lyme disease is Quest, a mass production laboratory.)
(Note: In Mendocino county in California, one of the few counties where long term studies have been done they reported a 41.5% nymphal Ixodes Pacificus tick infection rate with B. burgdorferi and with an adult infection rate of 4%. In Santa Cruz county they had an infection rate of 30% in state parks in nymphal ticks. These infection rates are not the average though. It averages out to 7% of Ixodes ticks infected with Lyme disease in Mendicino county.) Reference for the above... www.dhs.ca.gov/ps/dcdc/disb/ pdf/dhs_lyme_medbd_news_10_2001.pdf
-Lyme Disease is a Ticking Epidemic - SF Chronicle - November 2003
Gary Wormser is the lead author of the Infectious Diseases Society of America (IDSA) Lyme disease guidelines which were the subject of an antitrust investigation by the Connecticut Attorney General. He is a professor at New York Medical College.
Dr. Wormser's views on the topic of long term complications of Lyme disease are probably best summarized by the IDSA guidelines he penned: "In many patients, post-treatment symptoms appear to be more related to the aches and pains of daily living rather than to either Lyme disease or a tick-borne co-infection."
-Lyme Policy Wonk – Lorraine Johnson - March 2011
Researchers such as Gary Wormser, a Johns Hopkins-trained infectious diseases expert and lead author of the IDSA guidelines, say the activists have created an atmosphere of intimidation that inhibits research. "I don't think there has ever been another disease for which I have been attacked on the Internet like this. . .They're not just content to just have two schools of thought, either. They kind of want to wipe out mainstream thinking and only have this school of thought." Wormser, author of the IDSA guidelines, said that throughout medical history, groups of people have blamed diverse and medically unexplained symptoms on a wide variety of ailments. Instead of chronic Lyme, he said, it was once chronic Epstein-Barr, and another time it was chronic candida. The difference now, he said, is that the Lyme groups are so loud.
-Combat Zone – Washington Post – May 2007
Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
-Antiscience and Ethical Concerns Associated With the Advocacy of Lyme Disease -Wormser et al – The Lancet – September 2011
"Panel members had no financial interests that would have affected, or been affected by, recommendations in the guidelines," the statement said. "The guidelines recommend generic drugs and generic diagnostic tests. Panel members do not stand to profit from any recommendation in the guidelines. In fact, the panel members denied themselves and their colleagues an opportunity to generate a significant amount of revenue when they recommended against expensive, repeated, long-term antibiotic therapy." Wormser et al
-Activists Force Review of Lyme Disease Guidelines – MedPage – July 2008
The Incomplete Facts; Potential conflicts of interest. G.P.W. [Gary Wormser] has received consulting fees from Baxter and research support from Immunetics, and he is a founder of Diaspex, a company that does not offer products or services. R.J.D. [Ray Dattwyler] has served as a speaker for Pfizer and is part owner of Biopeptides, a biotech company that develops vaccines and laboratory diagnostics, including products for Borrelia burgdorferi. J.J.H. [John Halperin] has served as an expert witness on behalf of Lymerix (GlaxoSmithKline). A.C.S. [Allen Steere] has received consulting fees from Baxter. P.J.K. [Patricia Coyle] has a patent pending with a university on a babesiosis diagnostic procedure that is not yet on the market. All other authors: no conflicts.
-Clinical Infectious Diseases – An IDSA Publication – 2006
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