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AJM online Letter| Volume 126, ISSUE 8, e13-e14, August 2013

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Chronic Lyme Disease: Liberation from Lyme Denialism

DOI:https://doi.org/10.1016/j.amjmed.2013.01.030
Chronic Lyme Disease: Liberation from Lyme Denialism
Previous ArticleThe Reply
Next ArticleAlternative Considerations for “Common Misconceptions About Lyme Disease”
      To the Editor:
      The Review article by Halperin et al
      • Halperin J.J.
      • Baker P.
      • Wormser G.P.
      Common misconceptions about Lyme disease.
      Am J Med. 2013; 126: 264.e1-264.e7
      concerning Lyme disease “misconceptions” is the latest in a series of Lyme denialist attacks by members and supporters of the Infectious Diseases Society of America (IDSA).
      • Halperin J.J.
      • Baker P.
      • Wormser G.P.
      Common misconceptions about Lyme disease.
      Am J Med. 2013; 126: 264.e1-264.e7
      , 
      • Auwaerter P.G.
      • Melia M.T.
      Bullying Borrelia: when the culture of science is under attack.
      Trans Am Clin Climatol Assoc. 2012; 123: 79-90
      , 
      • Auwaerter P.G.
      • Bakken J.S.
      • Dattwyler R.J.
      • et al.
      Antiscience and ethical concerns associated with advocacy of Lyme disease.
      Lancet Infect Dis. 2011; 11: 713-719
      , 
      • Auwaerter P.G.
      • Bakken J.S.
      • Dattwyler R.J.
      • et al.
      Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism.
      J Med Ethics. 2011; 37: 68-73
      This series of copycat opinion pieces is disturbing from both a scientific and political perspective because the articles frame the complex debate over chronic Lyme disease in terms of “evidence-based medicine” on the one hand, versus “antiscience” on the other. Furthermore, the latest Lyme denialist attacks appear to be a concerted effort to offset recent political action aimed at helping the scores of untreated, undertreated, and mistreated Lyme disease patients around the globe.
      The scientific problem with the copycat opinion pieces (including the Review article by Halperin et al
      • Halperin J.J.
      • Baker P.
      • Wormser G.P.
      Common misconceptions about Lyme disease.
      Am J Med. 2013; 126: 264.e1-264.e7
      ) is that among the more than 25,000 peer-reviewed articles on tick-borne diseases listed in the PubMed database, there are literally hundreds that contradict the selective “evidence” that these opinion pieces are willing to acknowledge.
      • Cairns V.
      • Godwin J.
      Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms.
      Int J Epidemiol. 2005; 34: 1340-1345
      , 
      • Stricker R.B.
      Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease.
      Clin Infect Dis. 2007; 45: 149-157
      , 
      • Stricker R.B.
      • Johnson L.
      Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic.
      Minerva Med. 2010; 101: 419-425
      , 
      • Stricker R.B.
      • Johnson L.
      Lyme disease: The next decade.
      Infect Drug Resist. 2011; 4: 1-9
      , 
      • Johnson L.
      • Aylward A.
      • Stricker R.B.
      Healthcare access and burden of care for patients with Lyme disease: a large United States survey.
      Health Policy. 2011; 102: 64-71
      , 
      • Stricker R.B.
      • Johnson L.
      The pain of chronic Lyme disease: moving the discourse backward?.
      FASEB J. 2011; 25: 4085-4087
      In addition, to serve their purpose, these authors are now ready to discredit their own publications, such as the 1988 New England Journal of Medicine article on seronegative Lyme disease by Dattwyler et al.
      • Halperin J.J.
      • Baker P.
      • Wormser G.P.
      Common misconceptions about Lyme disease.
      Am J Med. 2013; 126: 264.e1-264.e7
      , 
      • Dattwyler R.J.
      • Volkman D.J.
      • Luft B.J.
      • Halperin J.J.
      • Thomas J.
      • Golightly M.G.
      Seronegative Lyme disease: dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.
      N Engl J Med. 1988; 319: 1441-1446
      If this publication in a major medical journal should no longer be considered valid because it does not fit the authors’ Lyme denialist viewpoint, how much more “evidence” should we disregard in order to see the world through IDSA’s opaque prism? And why not discount studies that underpin Lyme denialism, such as the 2001 New England Journal of Medicine article by Klempner et al
      • Klempner M.S.
      • Hu L.
      • Evans J.
      • et al.
      Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease.
      N Engl J Med. 2001; 345: 85-92
      repeatedly used to deny treatment of Lyme disease? The methodology and results of that study have been challenged recently,
      • Delong A.K.
      • Blossom B.
      • Maloney E.L.
      • Phillips S.E.
      Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.
      Contemp Clin Trials. 2012; 33: 1132-1142
      , 
      • Fallon B.A.
      • Petkova E.
      • Keilp J.G.
      • Britton C.B.
      A reappraisal of the U.S. clinical trials of post-treatment Lyme disease syndrome.
      Open Neurol J. 2012; 6: 79-87
      and studies in animals and humans with Lyme disease demonstrate failure of antibiotic therapy and persistent infection in many cases.
      • Stricker R.B.
      • Johnson L.
      Lyme disease: The next decade.
      Infect Drug Resist. 2011; 4: 1-9
      , 
      • Stricker R.B.
      • Johnson L.
      Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science.
      Future Microbiol. 2012; 7: 1243-1246
      , 
      • Stricker R.B.
      • Delong A.K.
      • Johnson L.
      Outpatient parenteral antibiotic therapy for Lyme borreliosis: a ‘real world’ view.
      Q J Med. 2013; 106: 201-203
      In the absence of a test for cure of Lyme disease, which the authors acknowledge, the contention that patients with persistent symptoms should not receive further treatment amounts to no more than a value judgment that has left sick patients to suffer without treatment options.
      • Johnson L.
      • Aylward A.
      • Stricker R.B.
      Healthcare access and burden of care for patients with Lyme disease: a large United States survey.
      Health Policy. 2011; 102: 64-71
      , 
      • Stricker R.B.
      • Johnson L.
      The pain of chronic Lyme disease: moving the discourse backward?.
      FASEB J. 2011; 25: 4085-4087
      The political problem with this series of opinion pieces is that they gloss over the shortcomings of the shaky IDSA Lyme guidelines that have recently come under attack in scientific and legislative investigations.
      • Johnson L.
      • Stricker R.B.
      Final report of the Lyme disease review panel of the Infectious Diseases Society of America: a pyrrhic victory?.
      Clin Infect Dis. 2010; 51: 1108-1109
      , 

      Smith CH. Global challenges in diagnosing and managing Lyme disease – closing knowledge gaps. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Barthold SW. Persistence of non-cultivable Borrelia burgdorferi following antibiotic treatment: critical need for further research. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Stricker RB. Lyme disease: the hidden epidemic. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Loudoun County (VA) Board of Supervisors. Ten point action plan to mitigate Lyme disease. Available at: http://www.loudoun.gov/index.aspx?NID=2648. Accessed January 22, 2013.

      , 
      • Pearson S.
      • Huyshe-Shires S.
      Lyme borreliosis: the need for more research.
      Q J Med. 2013; 106: 203
      It is clear that the goal of opinion pieces such as the Review article by Halperin et al
      • Halperin J.J.
      • Baker P.
      • Wormser G.P.
      Common misconceptions about Lyme disease.
      Am J Med. 2013; 126: 264.e1-264.e7
      is to counteract the growing political opposition to the IDSA denialist view of Lyme disease, and IDSA intends to achieve this goal by means of data selection and repetitive disinformation. Given the extensive suffering of Lyme disease patients
      • Cairns V.
      • Godwin J.
      Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms.
      Int J Epidemiol. 2005; 34: 1340-1345
      , 
      • Stricker R.B.
      Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease.
      Clin Infect Dis. 2007; 45: 149-157
      , 
      • Stricker R.B.
      • Johnson L.
      Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic.
      Minerva Med. 2010; 101: 419-425
      , 
      • Stricker R.B.
      • Johnson L.
      Lyme disease: The next decade.
      Infect Drug Resist. 2011; 4: 1-9
      , 
      • Johnson L.
      • Aylward A.
      • Stricker R.B.
      Healthcare access and burden of care for patients with Lyme disease: a large United States survey.
      Health Policy. 2011; 102: 64-71
      , 
      • Stricker R.B.
      • Johnson L.
      The pain of chronic Lyme disease: moving the discourse backward?.
      FASEB J. 2011; 25: 4085-4087
      and the ongoing legitimate controversy over the diagnosis and treatment of tick-borne diseases,
      • Delong A.K.
      • Blossom B.
      • Maloney E.L.
      • Phillips S.E.
      Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.
      Contemp Clin Trials. 2012; 33: 1132-1142
      , 
      • Fallon B.A.
      • Petkova E.
      • Keilp J.G.
      • Britton C.B.
      A reappraisal of the U.S. clinical trials of post-treatment Lyme disease syndrome.
      Open Neurol J. 2012; 6: 79-87
      , 
      • Stricker R.B.
      • Johnson L.
      Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science.
      Future Microbiol. 2012; 7: 1243-1246
      , 
      • Stricker R.B.
      • Delong A.K.
      • Johnson L.
      Outpatient parenteral antibiotic therapy for Lyme borreliosis: a ‘real world’ view.
      Q J Med. 2013; 106: 201-203
      , 
      • Johnson L.
      • Stricker R.B.
      Final report of the Lyme disease review panel of the Infectious Diseases Society of America: a pyrrhic victory?.
      Clin Infect Dis. 2010; 51: 1108-1109
      , 

      Smith CH. Global challenges in diagnosing and managing Lyme disease – closing knowledge gaps. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Barthold SW. Persistence of non-cultivable Borrelia burgdorferi following antibiotic treatment: critical need for further research. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Stricker RB. Lyme disease: the hidden epidemic. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Loudoun County (VA) Board of Supervisors. Ten point action plan to mitigate Lyme disease. Available at: http://www.loudoun.gov/index.aspx?NID=2648. Accessed January 22, 2013.

      , 
      • Pearson S.
      • Huyshe-Shires S.
      Lyme borreliosis: the need for more research.
      Q J Med. 2013; 106: 203
      the IDSA strategy of framing selective supportive data as “evidence” and dismissing volumes of contradictory data as “antiscience” is antiscientific, deceptive, and untenable. As the Lyme disease pandemic continues to grow, the plight of Lyme disease patients fostered by the tainted IDSA Lyme guidelines will continue to attract legislative attention until these patients are finally liberated from Lyme denialism.
      • Johnson L.
      • Stricker R.B.
      Final report of the Lyme disease review panel of the Infectious Diseases Society of America: a pyrrhic victory?.
      Clin Infect Dis. 2010; 51: 1108-1109
      , 

      Smith CH. Global challenges in diagnosing and managing Lyme disease – closing knowledge gaps. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Barthold SW. Persistence of non-cultivable Borrelia burgdorferi following antibiotic treatment: critical need for further research. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Stricker RB. Lyme disease: the hidden epidemic. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

      , 

      Loudoun County (VA) Board of Supervisors. Ten point action plan to mitigate Lyme disease. Available at: http://www.loudoun.gov/index.aspx?NID=2648. Accessed January 22, 2013.

      , 
      • Pearson S.
      • Huyshe-Shires S.
      Lyme borreliosis: the need for more research.
      Q J Med. 2013; 106: 203

      References

        • Halperin J.J.
        • Baker P.
        • Wormser G.P.
        Common misconceptions about Lyme disease.
        Am J Med. 2013; 126: 264.e1-264.e7
        View in Article
        • Auwaerter P.G.
        • Melia M.T.
        Bullying Borrelia: when the culture of science is under attack.
        Trans Am Clin Climatol Assoc. 2012; 123: 79-90
        View in Article
        • Auwaerter P.G.
        • Bakken J.S.
        • Dattwyler R.J.
        • et al.
        Antiscience and ethical concerns associated with advocacy of Lyme disease.
        Lancet Infect Dis. 2011; 11: 713-719
        View in Article
        • Auwaerter P.G.
        • Bakken J.S.
        • Dattwyler R.J.
        • et al.
        Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism.
        J Med Ethics. 2011; 37: 68-73
        View in Article
        • Cairns V.
        • Godwin J.
        Post-Lyme borreliosis syndrome: a meta-analysis of reported symptoms.
        Int J Epidemiol. 2005; 34: 1340-1345
        View in Article
        • Stricker R.B.
        Counterpoint: long-term antibiotic therapy improves persistent symptoms associated with Lyme disease.
        Clin Infect Dis. 2007; 45: 149-157
        View in Article
        • Stricker R.B.
        • Johnson L.
        Lyme disease diagnosis and treatment: Lessons from the AIDS epidemic.
        Minerva Med. 2010; 101: 419-425
        View in Article
        • Stricker R.B.
        • Johnson L.
        Lyme disease: The next decade.
        Infect Drug Resist. 2011; 4: 1-9
        View in Article
        • Johnson L.
        • Aylward A.
        • Stricker R.B.
        Healthcare access and burden of care for patients with Lyme disease: a large United States survey.
        Health Policy. 2011; 102: 64-71
        View in Article
        • Stricker R.B.
        • Johnson L.
        The pain of chronic Lyme disease: moving the discourse backward?.
        FASEB J. 2011; 25: 4085-4087
        View in Article
        • Dattwyler R.J.
        • Volkman D.J.
        • Luft B.J.
        • Halperin J.J.
        • Thomas J.
        • Golightly M.G.
        Seronegative Lyme disease: dissociation of specific T- and B-lymphocyte responses to Borrelia burgdorferi.
        N Engl J Med. 1988; 319: 1441-1446
        View in Article
        • Klempner M.S.
        • Hu L.
        • Evans J.
        • et al.
        Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease.
        N Engl J Med. 2001; 345: 85-92
        View in Article
        • Delong A.K.
        • Blossom B.
        • Maloney E.L.
        • Phillips S.E.
        Antibiotic retreatment of Lyme disease in patients with persistent symptoms: a biostatistical review of randomized, placebo-controlled, clinical trials.
        Contemp Clin Trials. 2012; 33: 1132-1142
        View in Article
        • Fallon B.A.
        • Petkova E.
        • Keilp J.G.
        • Britton C.B.
        A reappraisal of the U.S. clinical trials of post-treatment Lyme disease syndrome.
        Open Neurol J. 2012; 6: 79-87
        View in Article
        • Stricker R.B.
        • Johnson L.
        Spirochetal ‘debris’ versus persistent infection in chronic Lyme disease: from semantics to science.
        Future Microbiol. 2012; 7: 1243-1246
        View in Article
        • Stricker R.B.
        • Delong A.K.
        • Johnson L.
        Outpatient parenteral antibiotic therapy for Lyme borreliosis: a ‘real world’ view.
        Q J Med. 2013; 106: 201-203
        View in Article
        • Johnson L.
        • Stricker R.B.
        Final report of the Lyme disease review panel of the Infectious Diseases Society of America: a pyrrhic victory?.
        Clin Infect Dis. 2010; 51: 1108-1109
        View in Article

      18. Smith CH. Global challenges in diagnosing and managing Lyme disease – closing knowledge gaps. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

        View in Article

      19. Barthold SW. Persistence of non-cultivable Borrelia burgdorferi following antibiotic treatment: critical need for further research. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

        View in Article

      20. Stricker RB. Lyme disease: the hidden epidemic. Testimony before House Committee on Foreign Affairs, United States Congress, July 17, 2012. Available at: http://archives.republicans.foreignaffairs.house.gov/hearings/view/?1455. Accessed April 16, 2013.

        View in Article

      21. Loudoun County (VA) Board of Supervisors. Ten point action plan to mitigate Lyme disease. Available at: http://www.loudoun.gov/index.aspx?NID=2648. Accessed January 22, 2013.

        View in Article
        • Pearson S.
        • Huyshe-Shires S.
        Lyme borreliosis: the need for more research.
        Q J Med. 2013; 106: 203
        View in Article

      Article info

      Footnotes

      Funding: None.

      Conflict of interest: RBS serves without compensation on the medical advisory panel of QMedRx Inc. He has no financial ties to the company. LJ has no conflicts to declare.

      Authorship: The work is original, and both authors had a role in writing the manuscript.

      Identification

      DOI: https://doi.org/10.1016/j.amjmed.2013.01.030

      Copyright

      © 2013 Elsevier Inc. Published by Elsevier Inc. All rights reserved.

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      Access this article on ScienceDirect

      Linked Article

      • Common Misconceptions About Lyme Disease
        The American Journal of MedicineVol. 126Issue 3
        • Preview
          Lyme disease, infection with Borrelia burgdorferi, is a focally endemic tick-transmitted zoonosis. During the 3 decades since the responsible spirochete was identified, a series of misconceptions and misunderstandings have become widely prevalent, leading to frequent misdiagnosis and inappropriate treatment. Persistent misconceptions concern the reliability of available diagnostic tools, the signs and symptoms of nervous system involvement, the appropriate choice and duration of antimicrobial therapy, the curability of the infection, and the cause of symptoms that may persist in some patients after treatment.
        • Full-Text
        • PDF
      • The Reply
        The American Journal of MedicineVol. 126Issue 8
        • Preview
          Miller's letter1 further illustrates the misconceptions about Lyme disease. The assertion that Lyme “ELISA [enzyme-linked immunosorbent assay] tests are intrinsically unreliable” is inaccurate. In the majority of patients with very early Borrelia burgdorferi infection, typically an erythema migrans, antibody is undetectable; such patients should be treated without testing. Serologic testing also may be negative in occasional patients with other early manifestations, such as facial nerve palsy. Here a convalescent titer will almost always be positive, just as in other diseases.
        • Full-Text
        • PDF

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