Virtual book burning and the Lyme Disease “Federation”
An opinion piece by author PJ Langhoff

       “If they give you ruled paper, write the other way.”[1]

One method utilized by the German Nazi party during the early part of this century to control civilian thought processes was through literary censorship. In April 1933, the german students association’s press and propaganda office declared a nationwide action which included a literary purge or cleansing by fire. The SA (Sturmabteilung, german for “storm department” or “stormtroopers”) “brown shirts,”so named for their SA uniform, participated in very public book burnings such as those in Munich and Berlin that year. More than a hundred years earlier, the poet Heinrich Heine said, “Where books are burned, human beings are destined to be burned too.”

Seventy-five years later (as we enter 2008), we again witness what appears to be a deliberate censorship declaration designed to control the thought processes of the masses, this time in the arena of the Lyme disease-afflicted. But the “books” burned aren’t necessarily made of paper, they are also the virtual books, articles, and opinion pieces located in cyberspace, the “new frontier” of medical politics. This includes peer-reviewed articles, published articles in trade journals, newspapers, research data; all the way down to the opinions of advocates, patients and also physician organizations. The end result is the attempted purging of an entire line of thinking about a complex, endemic illness which has been declared off-limits by this “Federation” to the masses; in favor of a minimized, slow-played, non-endemic, less serious version, (with devastating consequences to thousands).

Enter a small group of powerful Infectious Disease academicians and their supportive, grant-funding government agencies, and medical board associates, whom I will collectively dub here (a pretend) Lyme denialist, stormtrooper posse called the “Federation.” Please do not misquote or misunderstand. I am merely poking fun here and not remotely suggesting anyone referenced are Nazis, SA members, extremists, or are of any particular nationality. But I am making a point that in the media, we see a similar kind of censorship being played out in a very political arena, at the hands of a select group of Infectious Disease academicians (some of my pretend “Federation.”)

Some Federation members seem to trumpet their position that Lyme patients and their doctors are attention-seeking hypochondriacs who are imagining an illness which doesn’t exist. Others are attempting to promote restrictive guidelines for the diagnosis and treatment of an illness that at best, is poorly understood. Meanwhile, the earlier research and materials published by members of this imaginery Federation seems to now conflict with their most recently widely published "denials" that the illness exists in its most serious, chronic form.

And despite very ill patients and their doctors’ attempts to illustrate what the Federation already knows (that Lyme disease is a debilitating illness with a chronic form when improperly treated), the Federation appears to be working diligently in the background to silence anyone who does not agree with its current modus operandi. This includes but is not limited to the upcoming meeting December 18, 2007 at the Hartford, CT Legislative Office building from 10 a.m to noon. In what can only be described as another strategic effort on the Federation’s part, IDSA member Durland Fish will speak at a forum on Lyme disease “prevention.” Incidentally, no Lyme advocacy representatives have been invited to attend, though it is admittedly a public event.

At the same location on the same date, but at 1:30 p.m., renowned pediatric Lyme physician Dr. Charles Ray Jones will be present for his legislative hearing regarding his licensure and accusations by the CT medical board of “unprofessional conduct.” Some accusations included his failure to examine two children before prescribing medications – something that most physicians across the country in all forms of medicine, routinely do. Those who know Dr. Jones and who are familiar with his case, will tell you that is not what happened.

And it is no surprise that his hearing would be strategically targeted by the Federation either. Patients and advocates see it as another attempt by the Federation to silence anyone with an anti-Federation viewpoint. Perhaps since they cannot burn books, they might as well burn reputations. From the viewpoint of this imaginery Federation, perhaps obliterating a beloved Lyme physician who did nothing wrong, by offering their physical presence to go hand-in-hand with false accusations and trumped up charges resulting in “discipline” is a convenient way to “teach” other physicians not to go against the Federation’s views. How convenient that a Federation forum will be held at the exact location, and just an hour and a half before the very public crucifixion of a physician servant who has dedicated his life to treating thousands of ill children – someone who is perhaps the most beloved and important Pediatric Lyme specialist in the country.

And the persistence of the ideology of the Federation “members,” whom in part drafted and promote restrictive guidelines which seem to define chronic Lyme disease out of existence, and for which they previously acknowledged existed, is mind-boggling. At present, the IDSA Lyme disease guidelines are under investigation by the CT Attorney General’s office for possible anti-trust violations. This has to do with the unilateral formation of the guidelines excluding important peer-reviewed research, and the possibility that their structure and edict will impose restrictions on insurance company benefits and patient treatment options.

And patients and their physicians witness tit-for-tat publications in intermedia arguments defending both sides of the Lyme debate – a staunch Federation position with attempts at censorship, and a re-teaching that Lyme disease is “hard to catch” and “easy to treat”; and the “other side,” which includes ill patients and their physicians left with debilitating illness barely acknowledged by the Federation, government, insurance, and many doctors. How has this censorship come about?

Around 1975, academician, Infectious Disease Society of America member and Rheumatologist Dr. Allen Steere and his Yale university associates dubbed a strange illness “Lyme Disease,” so named after the town in which the first cluster cases were identified, thanks in part to the persistence of a housewife named Polly Murray. Over the course of a few years, Lyme disease was defined as an illness with various stages, including a chronic form.

In 1980, Steere and associate Malawista wrote that some patients (even when treated soon after an EM rash), developed later manifestations, and some patients with these manifestations never experienced a rash.[2] In 1983, Steere’s associate Barbour (et al.) wrote an article describing Lyme as a “multisystem” disorder.[3] In 1984, Steere and Barbour wrote an article revealing knowledge in 1955 that an EM rash could be passed from human to human.[4] The following year Steere and associate Pachner wrote an article about a triad of neurological symptoms of Lyme disease.[5] The authors discussed the duration of the acute phase of the illness lasting up to 18 months in those not receiving antibiotic therapy. (Those studied were not followed for a more extended time.)

In 1988, Steere associate Pachner wrote an article about Bb in the nervous system calling it the “new great imitator.”[6] He outlined similarities between Bb and syphilis, with the ability of both organisms to “stay alive in human tissue for years.” He also outlined the stages of LD, including early skin disease and later disease in the brain. He warned “the effective clinician must take special care to consider Lyme disease primarily because of the excellent response to antibiotics early in its course in relationship to some of the diseases it mimics.” He labeled lyme meningitis the second stage of the disease, (including the EM rash). He suggested that most patients have very mild symptoms, and called it “likely that a large percentage of patients go undiagnosed and untreated.” He further elaborated that “the frequency of progression to third-stage disease is unknown but may be quite high”, inferring this from a large number of patients manifesting Lyme arthritis, many whom bear no other symptoms. Pachner considers serology an important tool, but recognizes the test limitations: “...while the tests are understandably unreliable for identification of patients with ECM...” he explains that antibodies in some patients are not as high as in others, associating a higher prevalence of antibodies in those with more symptoms. He also states that those with only CNS disease, sometimes do not have high titers.[7] This underscores the theory that some Lyme patients can be seronegative but still have Lyme.

In an Italian paper from the same year, the topic of maternal/fetal transmission of Lyme disease was discussed. From the abstract, we learn that Lyme borreliosis acquired during pregnancy may be associated with stillbirth and fetal malformations.[8]

By 1989 the understanding of Lyme disease is growing, and more scientists are realizing the complexity of Lyme’s vast neurological symptoms. In a Scottish article from the same year we read about a “triad” of neurological symptoms of Lyme. “...meningoencephalitis, cranial neuritis and peripheral neuritis is unique to the disease...” But the list doesn’t stop there. The author describes the following manifestations: “...pseudotumour cerebri, hemiparesis, demyelinating disorders, optic atrophy, recurrent laryngeal nerve palsy and meningitis so that Lyme disease must now be considered in the differential diagnosis of a wide range of neurological disorders.”[9]

Two studies from 1993 examined the relationship between adverse pregnancy outcomes and maternal exposure to Lyme disease. One study of 5,000 mothers with infants who participated in a cord blood serosurvey showed that cardiac manifestations in the exposed infants were significantly higher within the endemic group.[10] The other study (Westchester County, NY) involved questionnaires to 2,000 women and showed that “tick bites within 3 years preceeding conception were significantly associated with congenital malformations.”[11]

In a 1994 letter to the editor of the Journal of Clinical Microbiology regarding an article by Dr. Kenneth B. Liegner, we find a patient treated for 5 days with oral doxycycline following tick removal. Three months later the patient presented with fatigue and other symptoms. He ignored these until progressive muscle hypotrophy, neurologic, gastrointestinal, genitourinary and cardiorespiratory symptoms occurred. 27 months after tick bite, he was initially diagnosed with a psychiatric disorder. 41 months following the bite, he was diagnosed by a Neurologist as having “probable encephalomyelitis due to Bb.” This case was included in the profile of patients with circulating immune complexes to Bb and poor response to “standard” treatment for Lyme disease. The letter points out the “unreliability of available laboratory tests” and stresses the importance of clinical impressions when patients are seronegative. The letter also describes a proactive approach to prophylactic and therapeutic treatments, as in such cases like the patient above which “could have been prevented.” The author’s reply stated that European literature describing “progressive” borrelial encephalomyelitis may be progressive because it was inadequately treated. He further states that the lack of appreciation for the chronic form of Lyme disease results in an “overreliance on treatment protocols developed before a clear understanding of the pathobiology of the infecting agent was possible. Now, with a clearer picture of pathogenesis, physicians may offer prolonged treatment.”[12,13]

In a continuing education videotape from 1997 issued by the NCME, our pretend Federation’s (IDSA member) Benjamin Luft (co-author of the controversial IDSA Diagnostic and Treatment Guidelines) goes on film to iterate the 1997 current IDSA beliefs about LD which include the following, important statements:

*This information was taught to physicians during a time period AFTER the 1994 Dearborn, MI diagnostic test criteria-establishing conference which included IDSA members Steere, Barbour and associates – criteria which are said to have been designed to facilitate the emergence of the LYMErix vaccine (subsequently pulled from market); criteria which are called “flawed” by Lyme-literate physicians, patients and advocates because they are said to miss the majority of Lyme patients; and criteria which are heavily promoted by the CDC and the IDSA (and its guidelines), today.

We hold these (patent) truths to be self-evident

In (1988) U.S. patent #7,045,134 we read: “Current technology enables correct diagnosis of certain infectious diseases only after the disease has progressed to a certain maturity. By that time, however, treatment is more difficult...”[15]

Patent #4,721,617, says: “The etiological agent of this disease is the spirochete Borrelia burgdorferi, which is primarily transmitted by Ixodes ticks...The spirochete has also been found in deerflies, horseflies and mosquitos...” It goes on to describe: “…As many as two-thirds of the people that become infected by this spirochete are unaware of the tick bite because of the painless bite and the small size (several mm) of the nymphal stage…The early phase of the illness often consists of the ECM, headache, fatigue, muscle and joint aches, stiff neck and chills and fever. This phase of the disease may be followed by neurologic, joint or cardiac abnormalities…"

And we learn about the chronic form of LD and other issues from this same patent: “…The chronic forms of the disease such as arthritis (joint involvement), acrodermatitis chronica atrophicans (skin involvement), and Bannwart's syndrome (neurological involvement) may last for months to years and are associated with the persistence of the spirochete…"

And more alarming: "…A case of maternal-fetal transmission of B. burgdorferi resulting in neonatal death has been reported……For every symptomatic infection, there is at least one asymptomatic infection. Lyme disease is presently the most commonly reported tick-borne disease in the United States…”

Last, we learn about the effectiveness of treatment: "...The infection may be treated at any time with antibiotics such as penicillin, erythromycin, tetracycline, and ceftriaxone…Once infection has occurred, however, the drugs may not purge the host of the spirochete but may only act to control the chronic forms of the disease. Complications such as arthritis and fatigue may continue for several years after diagnosis and treatment…”[16]

So how is it that so much was known (and there are thousands of examples over the few mentioned here), about Borrelia beginning decades ago, but those facts have now become a “hot potato” of contention between scientists, medical boards, government entities, treating physicians, patients, and insurance companies? Why are the Infectious Disease “stormtroopers” using the media to eradicate any mention of the truth about Lyme disease which has been known for 3 decades, to re-spin it in favor of minimalism?

Enter an era of self-interests, profit margins, pharmaceutical interests, government-funded research, spin-off company ownership and patent royalties held by the Federation members. This information at the very least, is likely to come to light when the CT AG investigation is completed. At best, time, publications and clinical studies will reveal the truth around Lyme disease regarding its prevalence and persistence. We find these relationships particularly interesting when we explore Federation “members” like (IDSA member) Durland Fish’s involvement in patents, research, and government-sponsored epidemiological studies using satellite technologies to map vector-transmission, among other things. The Federation of course would benefit from the censorship of the civilian mindset regarding Lyme disease – because therein an epidemic can be controlled and slow-played for maximum research dollars, profits for insurance companies and pharmaceutical and diagnostic test manufacturers. And many of the Federation members are paid spokespersons for these entities, not to mention that they are patent-holders on the technologies which are used for diagnostics and vaccines. But they won’t necessarily tell you that, because disclosures and conflicts of interest might bring their motivations under careful scrutiny – something the CT AG may currently be pursuing.

Unfortunately for my imaginary Federation, the patients, advocates, and their physicians who call themselves "Lyme-literate," are not going to go away. They are going to continue to trumpet loudly that Lyme disease in a chronic form exists, and that it must be acknowledged, and allowed open-ended, individualized treatment. Although a few pioneering physicians may be reprimanded for real or imagined "disobedience," the number of Lyme-literate physicians opting off the managed care merry-go-round will continue to increase as they answer the call of their ill patients. These brave physicians will continue to train in tick-borne illness diagnosis and treatment; which won't necessarily include the ideology of the IDSA's impractical guidelines – because for these physicians, patient care comes first over profits.

The number of academic, peer-reviewed articles proving the existence of a persistent form of LD will also increase, as will the number of patient cases with disability. Advocacy groups will not be silenced by a handful of ID stormtroopers attempting to censor civilian mindset. Unfortunately for the Federation, just as in Nazi Germany, their “regime” may indeed be falling. We see evidence in the loud, defensive protestation of subpoenas issued by the CT AG office; their "astonishment" of an investigation of their guidelines; and their increasing fears being revealed in their own publications. We witness their desire to remain highly visible within the media in staunch defense of self-serving guidelines and ideology; and most recently, their strategic presence when a beloved Lyme physician is under fire, and we see can see a transparent house of cards beginning to tumble.

Federation aside, in the end, within the world of Lyme disease, because of the controversy, patients are not being treated, illness is going unacknowledged, and the media is driven to distraction while innocent people are suffering. We suggest as patients and advocates, that the Federation go back to page 1, re-read their own previous research and publications, and leave the book burning, virtual or not, to history.


References
1. Quote from Juan Ramon Jimenez, from Bradbury R. Fahrenheit 451. Del Rey 1953.
2 Steere AC, Malawista SE, et al. Antibiotic Therapy in Lyme Disease. Annals of Inter Med 1980:93(part 1):1-8.
3. Barbour AG, et al. Lyme Disease Spirochetes and Ixodid Tick Spirochetes Share a Common Surface Antigenic Determinant Defined by a Monoclonal Antibody. Infec and Immun. 1983 Aug;41(2):795-804.
4. Schmid GP, Steigerwalt AG, Johnson SE, Barbour AG, Steere AC, et al. DNA Characterization of the Spirochete that causes Lyme disease. J Clin Microbiol. 1984 Aug;20(2):155-158.
5. Pachner AR, Steere AC. The triad of neurologic manifestations of Lyme disease: meningitis, cranial neuritis, and radiculoneuritis. Neurology, 1985 Jan;35(1):47-53.
6. Pachner AR. Neurologic manifestations of Lyme disease, the new “great imitator”. Rev Infect Dis. 1989 Sep-Oct;11 Suppl 6:S1482-6. [abstract]
7. Pachner AR. Borrelia burgdorferi in the nervous system: the new “great imitator”. Annals of the NY Acad Sci. 1988;539(1):56-64. At:
www.annalsnyas.org/cgi/content/abstract/539/1/56. Accessed 2007 Jun 19.
8. Carlomagno G, et al. Lyme Borrelia positive serology associated with spontaneous abortion in an endemic Italian area. Acta Eur Fertil. 1988 Sep-Oct;19(5):279-81.
9. Bourke SJ. Lyme disease. Biomed Pharmacother. 1989;43(6):397-400. Glasgow Royal Infirmary, Scotland, UK. At: www.pubmed.gov. Accessed 2007 Jun 16.
10. Williams CL, et al. Maternal Lyme disease and congenital malformations: a cord blood serosurvey in endemic and control areas. Paediatr Perinat Epidemiol. 1995 Jul;9(3):320-30.
11. Strobino BA, et al. Lyme disease and pregnancy outcome: a prospective study of two thousand prenatal patients. Am J Obstet Gynecol. 1993 Aug;169(2 Pt 1):367-74.
12. Lopez-Andreu, JA. Ferris J, et al. Treatment of Late Lyme Disease: A Challenge to Accept. J Clin Microbiol. 1994. [Letters to Editor] Vol 32:1415-1416.
13. Liegner KB. Lyme disease: the sensible pursuit of answers. J. Clin Microbiol. 1993;31:1961-1963.
14. Lyme Disease and Concomitant Tick-Borne Illnesses, NCME Continuing Education Videotape, featuring Benjamin Luft. 60 min. 1997 June 27.
15. USPTO. US Patent 7,045,134. Qiu, et al. 1996 May 6. http://patft.uspto.gov. Accessed 2007 Apr 7.
16. USPTO. US Patent 4,721,617. Johnson. 1988 Jan 26. http://patft.uspto.gov. Accessed 2007 Apr 6.

PJ Langhoff is an author, advocate, lyme patient, mom of 2 lyme adults, ordained minister and medical researcher.
She may be reached at pj@lymeleague.com