2011 April

30 APRIL 2011

Rhode Island may soon offer an instant lottery game called "Scratch-A-Tick" to raise money to fight tick-borne diseases like Lyme disease.

Legislation that would create the new lottery game was the subject of a legislative hearing Wednesday.

Up to $200,000 in proceeds from the game would go to tick-disease prevention and research efforts at the University of Rhode Island's Center for Vector-Borne Disease and Tick Encounter Resource Center.

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Links to this postLabels: MISC

29 APRIL 2011

Well, it looks like the makers of the infectious disease conspiracy docudrama, Under Our Skin, are showing their paranoia again. Writing on their blog, the film’s promoters say they are trying to get local PBS television stations to air their film in May, but the IDSA is “working behind the scenes” to stop them. Sounds like a conspiracy. Again.

Since when is writing a letter to PBS and another to the National Educational Telecommunications Association (NETA) considered “working behind the scenes?” How should one express legitimate concerns about an anti-science hatchet-job full of quackery, accusations and innuendo, and prompting the private practices of a handful of physicians who have been sued by patients or been hauled before state medical boards for incompetence? A letter seems like a reasonable avenue.

The Public Broadcasting Service (PBS) was created to “provide a voice for groups in the community that may otherwise be unheard,” and serve as “a forum for controversy and debate” by broadcasting programs that “help us see America whole, in all its diversity” as these anti-science activists suggest, but public television viewers typically do not see very much propaganda from neo-Nazis, the KKK, faith healers, Birthers, or fundamentalist Muslims: at least not without some explanatory context or accompanying commentary. PBS and the NETA continue to exist because they provide factual and reliable information, and scientists, physicians, politicians and other responsible citizens want them to continue that practice. Airing a propaganda piece, created by Lyme activists and Lyme doctors to attract more followers and customers, without providing some background about Lyme disease, the Lyme Movement and its film would be irresponsible.

The film’s bloggers write, “We are heartened that no PBS affiliate station has folded under the pressure.” Pressure? From a letter? Right-wing congressmen and corporations provide pressure. I don’t think the IDSA communications office has that kind of clout, money, influence, or ability to generate fear. As for local affiliates, according to the latest LymeNut count, not too many have signed up to air the film. Maybe most of them recognize junk as junk.

The blog whining closes with some regularly repeated lies about Ct. A.G. Blumenthal’s (failed) attempts to intimidate and coerce the IDSA, IDSA corruption, their “flawed” guidelines, and, of course, IDSA’s “exclusion,” “suppression” and “censorship” of information. Who would have guessed a professional society of I.D. docs and professors could be so powerful and ruthless? (Do you have to take a blood oath to join?)

Anyway, these wacky movie makers spend a lot of time denouncing clinical practice guidelines for the treatment of a common tick-borne bacterial infection, but they never have much to say about the defunct and denounced guidelines of their backers: the private practice, “Lyme literate” physicians of ILADS. Now there’s a conspiracy worth filming. Anyone got a camera?

Whatever happens with the local television affiliates probably will not impact the Lyme Movement or improve the economic fortunes of Under Our Skin. Not that many people watch PBS or NETA stations, and those who do tune in for the film are likely to be Lyme activists who have already seen it in some church basement or town library. Besides, it might conflict with American Idol or pro wrestling, and there’s just so much one can TiVo.

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Parasitology. 2011 Apr 26:1-10. Investigating the persistence of tick-borne pathogens via the R0 model. Harrison A, Montgomery WI, Bown KJ. School of Biological Sciences, Queen's University Belfast, MBC, 97 Lisburn Road, Belfast.

In the epidemiology of infectious diseases, the basic reproduction number, R0, has a number of important applications, most notably it can be used to predict whether a pathogen is likely to become established, or persist, in a given area. We used the R0 model to investigate the persistence of 3 tick-borne pathogens; Babesia microti,Anaplasma phagocytophilum and Borrelia burgdorferi sensu lato in an Apodemus sylvaticus-Ixodes ricinus system.

In infectious disease epidemiology, the basic reproduction number, R0, is defined as the average number of secondary cases caused by one infected individual entering a population consisting solely of susceptible individuals.

…if R0>1, a pathogen will persist should it be introduced, whilst R0<1 suggests it will die out. R0 is also a measure of the risk that an outbreak may occur and, when an outbreak does occur, it gives a measure of the initial rate of exponential increase of infected individuals. The proportion of a population that requires vaccination in order to prevent an outbreak is also determined using R0. R0, however, is difficult to define in natural systems due to indeterminate variability in susceptibility, infectivity and contact rates among individuals. This problem is often compounded by the presence of multiple host species and transmission routes. Given the importance of R0 in the epidemiology of infectious diseases there have been many attempts to define R0 for tick-borne infections.

Values of R0 suggested that B. microti could not persist given the distribution of life-history stages of ticks on wood mice, even if the transmission coefficients were high, if ticks fed solely on competent reservoir hosts, or if tick larval and nymphal tick burdens were unrealistically high. This was supported by the absence of B. microti in wood mice and questing ticks when screened by PCR. The inability of B. microti to become established or persist in this system is likely to be a product of the short period of infectivity that this pathogen has for ticks of 1–4 days.

In the case of A. phagocytophilum, the threshold value of R0 was achieved, but only when the proportion of competent hosts on which I. ricinus had fed was greater than that of the current study or when the transmission coefficient was unrealistically high. A. phagocytophilum was not detected in small mammals but A. phagocytophilum was found in questing ticks.

In contrast to B. microti and A. phagocytophilum, the threshold value of R0 for B. burgdorferi s.l. was achieved rapidly, requiring I. ricinus to feed on a much smaller proportion of competent hosts than encountered in the current study. This threshold value was reached using realistic transmission coefficients and required fewer larval and nymphal tick abundances to feed on mice than that recorded in the current study.

Values of R0 indicated that small mammals alone could maintain cycles of infection of B. burgdorferi s.l. without the need for alternative transmission hosts. s.l.

The ability of B. burgdorferi s.l. to become established more readily in the wood mouse-tick system than other pathogens is a product of its relatively long systemic infection duration and the secondary route of infection available via efficient co-feeding transmission.

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Links to this postLabels: Epidemiology

28 APRIL 2011

Not sure why this is suddenly news in the mainstream media. A quick look at some of the recent literature indicates many people were well aware of the connections between armadillos, people and leprosy. If nothing else, this latest paper (below) should reassure Lou Dobbsthat illegal immigrants are not a major source of cases of human leprosy in the U.S.

  1. Pedrini SC, Rosa PS, Medri IM, Mourão G, Bagagli E, Lopes CA. Search for Mycobacterium leprae in wild mammals. Braz J Infect Dis. 2010 Jan-Feb;14(1):47-53.
  2. Cardona-Castro N, Beltrán JC, Ortiz-Bernal A, Vissa V. Detection of Mycobacterium leprae DNA in nine-banded armadillos (Dasypus novemcinctus) from the Andean region of Colombia. Lepr Rev. 2009 Dec;80(4):424-31.
  3. Loughry WJ, Truman RW, McDonough CM, Tilak MK, Garnier S, Delsuc F. Is leprosy spreading among nine-banded armadillos in the southeastern United States? J Wildl Dis. 2009 Jan;45(1):144-52.
  4. Lane JE, Meyers WM, Walsh DS. Armadillos as a source of leprosy infection in the Southeast. South Med J. 2009 Jan;102(1):113-4.
  5. Deps PD, Alves BL, Gripp CG, Aragao RL, Guedes B, Filho JB, Andreatta MK, Marcari RS, Prates I, Rodrigues LC. Contact with armadillos increases the risk of leprosy in Brazil: a case control study. Indian J Dermatol Venereol Leprol. 2008 Jul-Aug;74(4):338-42.
  6. Clark BM, Murray CK, Horvath LL, Deye GA, Rasnake MS, Longfield RN. Case-control study of armadillo contact and Hansen's disease. Am J Trop Med Hyg. 2008 Jun;78(6):962-7.

Probable Zoonotic Leprosy in the Southern United States. Richard W. Truman, et al. N Engl J Med 2011; 364:1626-1633.

April 28, 2011.

Leprosy (Hansen's disease) is a chronic infectious disease caused byMycobacterium leprae. Though often considered a disease of antiquity, it is found most commonly today in tropical and semitropical regions, and a total of 249,007 new cases were reported globally in 2008. Genomic polymorphisms have allowed us to trace the historical spread of leprosy around the world, as human populations migrated. The disease was not present in the New World before Columbus discovered the American continents but rather appears to have been introduced here from Europeand Africa during colonization. Early case reports suggest that leprosy was already well established among settlers in the vicinity of New Orleans by the 1750s, and autochthonous transmission of the infection continues in the region today.

Leprosy is rare in the United States, with only about 150 new cases reported each year. The majority of these affected people lived or worked abroad in leprosy-endemic areas and may have acquired their disease there. However, about a third of all patients in the United States report no foreign residence and appear to have acquired their disease from local sources — although most are unable to recall any known contact with a person who had leprosy. These cases arise most frequently in Texas and Louisiana, but the range of endemic involvement appears to be expanding to other states.

M. leprae is an obligate intracellular pathogen that cannot be cultivated on artificial laboratory mediums. The only animal in which leprosy is reliably recapitulated is the nine-banded armadillo (Dasypus novemcinctus). Its unique susceptibility to experimental infection with M. leprae was first demonstrated in the 1970s, and armadillos have been the primary animal model for leprosy since. However, M. leprae infection also occurs naturally among some free-ranging armadillos.

The origins of M. leprae infection among armadillos, the geographic range of the infected animals, and the potential risks infected armadillos present to people have been topics of concern. The infection originated among armadillos decades before they were ever used in leprosy research, and numerous surveys have confirmed that armadillos in the southern United States are a large natural reservoir for M. leprae; its prevalence exceeds 20% in some locales. Infected armadillos have been reported in Alabama,Arkansas, Louisiana, Mississippi, Texas, and Mexico. Several case reports have suggested that armadillos may be a source of M. leprae for some U.S.patients, and contact with armadillos has been shown to be a significant risk factor for leprosy in three U.S. case–control studies.

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The self-described Lyme Wonk in California has posted a quickie review of the 485-page IOM report on Lyme disease. She suggests the “civil tone” of the report is not enough [for Lymees]. Evidently not, as the Wonk immediately gets personal and tries to connect Maria Aguero-Rosenfeld to Gary Wormser; in LymeLand Gary is evil therefore she must be evil too. The Wonk then calls A-R’s analysis of Lyme diagnostic tests “flawed,” and proceeds to misinterpret and misconstrue her presentation by suggesting the end results were too perfect (97-100% sensitive) and the patient samples (33 and 11) too few.

Of course, an actual review of the cited work shows something quite different. Here’s what the Bacon paper actually said about results and sample numbers:

J Infect Dis. 2003 Apr 15;187(8):1187-99. Serodiagnosis of Lyme disease by kinetic enzyme-linked immunosorbent assay using recombinant VlsE1 or peptide antigens of Borrelia burgdorferi compared with 2-tiered testing using whole-cell lysates. Bacon RM, et al.

Serum samples from individuals with late manifestations of Lyme disease were almost uniformly seropositive. Test sensitivities for patients with Lyme arthritis and late neurologic disease were 0.97 (95% CI,0.847–0.998) and 1.00 (95% CI, 0.741–1.00), respectively. Human serum: A panel of 839 samples (815 serum and 24 plasma specimens) was used to evaluate the diagnostic accuracy of each kELISA and traditional 2-tiered analysis. All samples were from reference collections and had been stored at -20C. Lyme disease samples (number=280) were from patients who met the CDC surveillance case definition for national reporting of Lyme disease. (Read the complete description of the various serum samples at the above link.)

Since the paper is about a comparison between two serodiagnostic methods, it is not a surprise that the patient serum samples would be positive. What’s the point of comparing two tests unless you know you have some positive samples with which to compare the two?

The Wonk also writes that the report “is not balance[d],” that the “IOM did not give opposing viewpoints equal time,” and she “would like to see more dialogue on the science, in a process that is truly mindful of presenting balanced scientific viewpoints.”

I guess it’s because she’s a lawyer that she thinks there are always two or more sides that can be argued for or against everything. But the IOM meetings and report are about the state of the science related to tick-borne infections, not balance or debate. The science is the issue, and not what the Wonk and her co-complainers think about that science. The only way to undermine or alter the existing state of the science is with new, compelling, reproducible data, and there was none of that in the offing. So there was indeed a balance—one heavily weighted in favor of 30-years worth of peer-reviewed clinical and basic research data.

Later, the Wonk asks, “Why were ILADS physicians excluded from presenting?” (I don’t know…maybe because they’re crooks and charlatans?) She insisted that “some ILADS physicians conduct research despite busy practices (Stricker, Cameron, Phillips and Shor)….” I don’t know of any research that Phillips and Shor have done. Cameron has written some argumentative commentary. As for Stricker, the only federally-funded research he’s done ended with his being barred from NIH funding and fired from UCSF.

Finally, the Wonk writes, “The formal exclusion of all ILADS physicians may “delegitimize” their viewpoints. I am concerned that viewpoints that were research grant "disadvantaged" were not properly acknowledged.”

Whether there was a “formal” or “informal” exclusion of the class clowns of infectious diseases, it’s not clear to me that their viewpoints were ever legit. Even if those viewpoints have somehow been rendered “delegit,” it is likely the result of their own words and deeds over the years. As for being “research grant ‘disadvantaged’” (only a lawyer could have thought that one up), the only way for the “funding challenged” is to practice, practice, practice better grantsmanship.

Click here to check out this annual “how to” seminar series on NIH grants and review.

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27 APRIL 2011

The Virginia Governor’s Lyme Disease Task Forcehad its final hearing on Monday, April 25, and fundamentalist home schooler Mike “what’s birth control” Farris is shocked.

"Even in Fairfax County, you have doctors who say we don’t have chronic Lyme disease here. It’s shocking, actually," said Michael Farris, who heads up the task force. A well-known constitutional lawyer, Farris is the founder of the Home School League Defense Association and Chancellor of Patrick Henry College in Purcellville. He said his wife and seven of his 10 children have been diagnosed with Lyme disease.

"There is too much denial by doctors that chronic Lyme disease exists, and it is dramatically misdiagnosed," Farris said.

I think Farris needs some therapy (or at least a condom). Fortunately, a therapist of some sort was on hand.

Dr. Robert Bransfield, a psychiatrist who received his medical training 40 years ago at Fairfax Hospital, said he has treated thousands of patients with mental symptoms associated with Lyme and tick-borne diseases. He treated patients for several years in Virginia before opening a practice in Red Bank, N.J. Bransfield said progress in treating Lyme disease is obstructed by the NIH and CDC for the "narrow, rigid and restrictive disease definitions." He blasted the CDC’s recommended ELISA test for Lyme, calling it highly unreliable and prone to false negatives.

An elderly psychiatrist practicing infectious diseases,occasionally getting sued, and writing down thoughtsbest kept to himself?

Bransfield said the task force should consider launching an Office of the Inspector General (OIG) investigation of NIH and CDC research funding for Lyme disease.

Been there, done that. I guess the good doctor—well, actually, I’m pretty sure he’s a bad doctor—doesn’t read the newspapers. The GAO looked at NIH and CDC Lyme disease programs and funding back in 2001. What did they find? Nothing.

Of course, if Dr. B. means a temporary Virginia task force should investigate two federal agencies, well, good luck with that too. Of course, there is that other crusading anti-science grandstander, theVirginia A.G. Maybe he’d be interested in taking on chronic Lyme disease after he defeats the liberalglobal climate change conspirators.

The next time Virginia tries to secede, let it.

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This blog covers infectious disease topics and the often ugly interface of science and politics. I do most of the writing and plagiarizing though there are occasional contributors.

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"In my heart, I know it delayed my opportunity for treatment," the 45-year-old father said of his Lyme diagnosis, which was actually a rare form of non-Hodgkin's lymphoma that had spread.

My Lyme doc told me and my wife that if we had kids, they would be born with Lyme Disease. We now have 2 beautiful boys...Lyme free, of course... as am I. I have Stage 4 Non Hodgkin's Marginal Zone Lymphoma AND Stage 4 Hodgkin's Lymphoma. My stupid side trip down Lyme Road slowed my Cancer diagnosis, but for the grace of God, I have been diagnosed, and I am being treated, and I will beat this!

LymeNet Europe alerted me to this lone nut summary of a recent Lyme disease conference featuring some of the usual suspects from LymeLand. I don’t think I’ve ever seen a single web page filled with so much nonsensical bullshit in my life. I really hope these clowns were just saying these things in order to hook a few more gullible, cash-carrying patients. The thought that these “doctors” might actually believe some of the pseudoscientific nonsense and technobabble they were spewing at the audience is more disturbing than thinking they are just con men looking for another mark.

Here’s the link to the conference summary web page. The main speakers at the event were Wayne Anderson ND, Joe Burrascano MD, Ann Corson MD, Steven Harris MD, Richard Horowitz MD, and Byron White (herbalist). You can find more information about the presenters here.

LymeNet Europe also tipped me to the existence of a web site devoted to quackery, which has a ‘quackometer’ for checking the content of various health and medical web sites. Not surprisingly, the Quackometer hit a big 10 after reviewing the nonsense from the above conference summary site. According to the Quackometer: “This web site is heavily laden with loosely defined terms and possibly pseudoscientific language with a quite a bit of alternative medicine flim flam. It is full of scientific jargon that is out of place and probably doesn't know the meaning of any of the terms. Using lots of physics terms like this rarely has any meaning outside of physics books. It shows little or no sceptical awareness and so should be treated with caution!”

The Quackometer site also features a “safe search” feature that filters much of the nonsense found on the Web. Type in “Lyme disease” and one gets back a long list of sites and articles warning about Lyme disease quackery and quack doctors. Nice tool for sorting web sites and news articles.

Breitschwerdt EB, Hegarty BC, Maggi RG, Lantos PM, Aslett DM, Bradley JM.Rickettsia rickettsii transmission by a lone star tick, North Carolina. Emerg Infect Dis. 2011 May.

Only indirect or circumstantial evidence has been published to support transmission of Rickettsia rickettsii by Amblyomma americanum (lone star) ticks in North America. This study provides molecular evidence that A.americanum ticks can function, although most likely infrequently, as vectors of Rocky Mountain spotted fever for humans.

Historically, transmission of Rickettsia rickettsii has been attributed toDermacentor variabilis ticks in the eastern United States and to D. andersoniticks in the western United States.

[snip]

A 61-year-old man visited his physician in May 2010 and reported a history of fevers, myalgias, and headache. He had been free of symptoms until 3 days earlier, when he experienced nausea and dizziness. The following morning, he had chills and, later the same day, a fever of 38.4°C. Mild headache and myalgias accompanied his fever. His symptoms became progressively more severe during the next 2 days, and fever reached 39.4°C.

The patient resided on a farm in central North Carolina and had occasional exposure to ticks. Seven days before the onset of illness, he had removed an embedded tick from his right axilla. He estimated that the tick had been attached for 2–3 days. Clinical examination showed an eschar-like lesion at the site of the tick bite that appeared erythematous with a necrotic center. The patient's neutrophil count (2,553 cells/μL) was within low reference limits, accompanied by 5% band neutrophils, and mild thrombocytopenia (148,000 platelets/μL).

A tick-borne rickettsiosis or ehrlichiosis was suspected, and on the 4th day of illness, the patient was prescribed doxycycline, 100 mg 2×/d for 7 days. A maculopapular rash appeared the next morning, which predominantly involved the extremities but not the palms or soles. Fever resolved within 36 hours after beginning therapy, and the rash began to fade. Within 1 week after receiving doxycycline, the patient's symptoms and hematologic abnormalities had resolved (neutrophil count 4,378 cells/μL, no band neutrophils, and platelet count of 320,000/μL).

The patient provided the tick, which he had preserved in alcohol. The tick was identified by using Herms's taxonomic key to Ixodes spp. ticks as a male lone star tick (A. americanum). Amplification of the mitochondrial 16S rRNA gene confirmed the tick species as A. americanum (417/418 bp, 99.8% homology with GenBank sequence L34313).

Acute-phase serum was collected and stored until the convalescent-phase sample was obtained. Subsequently, seroconversion to R. rickettsii antigens was documented (reciprocal acute-phase titer 64, convalescent-phase titer 512 after 4 weeks). The patient did not seroconvert to Ehrlichia sp. antigens.

[snip]

According to CDC criteria, RMSF developed in this patient after he was bitten by an A. americanum tick. Evidence to support a diagnosis of RMSF included 1) amplification of R. rickettsii DNA from the patient's blood sample at the onset of illness; 2) development of a prototypical rickettsial illness, including fever, rash, and thrombocytopenia 8 days after the tick was removed; 3) amplification of R. rickettsii from the alcohol-stored tick removed by the patient; 4) documentation of seroconversion to R. rickettsii antigens; and 5) a rapid and appropriate clinical response after treatment with doxycycline. The patient was not aware of any other recently attached ticks. Therefore, infection by an A. americanum tick caused by preexisting rickettsemia in the patient seems unlikely.

[snip]

During the past decade, CDC has reported a progressive rise in cases of RMSF, particularly in the eastern United States. During the same period, there has been a concurrent expansion in the geographic range of A. americanum ticks in conjunction with reports suggesting an increased frequency of attachment of this tick species to animals and humans. Although R. ambylommii is frequently amplified from A. americanum ticks, no current evidence supports a pathogenic role for this Rickettsia sp. in animals or humans. In contrast, A. americanum ticks can transmit R. parkeri, which is a recently documented human pathogen, most often transmitted by the Gulf Coast tick (A. maculatum).

[snip]

Taken in the context of other recent studies, this report supports the hypothesis that lone star ticks can transmit R. ambylommii, R. parkeri, and R. rickettsii infections to persons in the United States. An increasing diversity of competent tick vectors in conjunction with recent identification of novelRickettsia spp. may be contributing to the increase in seroepidemiologic surveillance trends reported for RMSF. Because extensive serologic cross-reactivity exists among rickettsial species, defining the infecting species requires organism isolation in a biosafety level III laboratory or PCR amplification and DNA sequencing, as was used in this study.

Hat tip to Microbiologybytes for the notice of a new paper speculating about the absence of human pathogens among the Archaea bacteria.

Gill EE and Brinkman FSL. The proportional lack of archaeal pathogens: Do viruses/phages hold the key? BioEssays, 15 Feb 2011.

We know that virulence-associated genes in Bacteria are highly associated with phages, probably by selection, so that these eukaryote host-killing genes can more flexibly survive by transferring in and out of Bacteria and be maintained in the bacteriophage gene pool. Based on the data discussed, it is unlikely that a bacterial phage would be able to transduce an archaeal cell. So, if key virulence factors such as the type III secretion systems and pathogen-associated toxins mentioned are difficult to replicate through convergent evolution, the lack of gene exchange from bacteriophages to Archaea may explain why so few (if any) archaeal pathogens exist.

An interesting paper that brought to mind the large number of exotoxins and other bacterial virulence factors that have a bacteriophage origin. Click here to see a large table of pathogens, phages and toxin/virulence factors.

Rapid Decline of OspC Borreliacidal Antibodies Following Treatment of Patients with Early Lyme Disease. Jobe DA, et al. Clin. Vaccine Immunol, April 2011.

Diagnostic testing for Lyme disease has improved significantly since the first tests were developed in the early 1980’s, and the result has been increased accuracy, especially in areas where the illness is not endemic or patients present with atypical signs and symptoms. Moreover, the widespread availability of improved tests offers the distinct possibility that the cumbersome two-tiered system will become obsolete. However, tests that can also be used to accurately predict successful elimination of the spirochetes after treatment have remained elusive. Such a test is especially important because other illnesses cause similar symptoms and the spirochetes can persist despite aggressive treatment. In addition, repeated infections with B. burgdorferi are possible. This can result in considerable confusion as patients and clinicians seek assurance that the treatment resolved the infection.

To date, only tests that detect antibody responses against the B. burgdorferi antigenic variation protein (VlsE) or a peptide (C6) based on the sixth invariant region of VlsE have shown promise for predicting eradication of the spirochetes, but widespread utility remains controversial.

More recently, however, researchers showed that the OspC borreliacidal antibodies produced during a natural human infection recognized a single epitope located within the 7 amino acids (AESPKKP) nearest the carboxy-terminus of the protein. In addition, Lovrich et al. showed that the borreliacidal antibodies comprised the vast majority of the OspC specific antibody response produced during early human illness.

Interestingly, vaccines that provide immunity from Lyme disease by inducing borreliacidal OspA and OspC antibodies must be administered annually because the antibodies wane to undetectable levels. In addition, we only rarely detect borreliacidal antibodies in sera from healthy individuals or patients with other illnesses, even though our region is highly endemic for B. burgdorferi and a significant number of donors have been treated previously for Lyme disease (unpublished observation). Moreover, immunoglobulin IgM OspC borreliacidal antibodies, which predominate during several stages of Lyme disease, only rarely switch to an IgG response. In fact, Mathiesen et al. speculated that the extensive cross-linking of OspC within the spirochetal membrane hinders interaction with T-cells, and the T-cell independent processing limits class switching. Based on these findings, we hypothesized that tests that detect OspC borreliacidal antibodies may also be useful for predicting successful elimination of the spirochetes after treatment. We therefore characterized the OspC borreliacidal antibody response after patients with early localized or early disseminated Lyme disease were treated with antibiotics. In addition, we compared the results to those obtained using the OspC7 ELISA.

Twelve (32%) of the 37 initial (acute) sera contained IgM OspC7 antibodies, but only two (5%) were from the patients with a single EM. The remaining ten (27%) positive patients had multiple EM, and three (8%) also produced IgG antibodies. In addition, 6 single-EM patients produced IgM antibodies within two months after treatment and two sera also contained IgG antibodies. Moreover, the antibody titers decreased to undetectable levels 6 months after treatment in two IgM positive sera and one IgG positive serum from the patients with single-EM lesions and five IgM positive sera and one IgG positive sera from the patients with multiple-EM. The findings from the borreliacidal antibody test were similar to the results from the OspC7 ELISA. Specifically, borreliacidal activity was detected in 10 (27%) acute sera, and two (5%) additional sera were positive within two months after treatment. In addition, the borreliacidal activity was detected in only the sera that contained the highest levels (OD 15 values > 1.11) of IgM OspC7 antibodies. Additionally, the borreliacidal activity had decreased to undetectable levels within 6 months after treatment in all but three previously-positive patients.

Despite the low sensitivity, however, the preliminary findings still provide strong

support for our hypothesis.

Specifically, the borreliacidal activity decreased greater than fourfold (n = 2) or disappeared entirely (n = 10) within 6 months after treatment in each seropositive subject. In addition, the IgM (n = 13) and IgG (n = 5) OspC7 antibody titers decreased greater than fourfold in each patient who had seroconverted at the time of diagnosis (acute serum) and twofold in the patients who developed a detectable IgM antibody response after 2 months.

Based on these findings, more comprehensive studies to determine the full utility of the OspC borreliacidal antibody test or OspC7 ELISA as a “test of cure” are warranted.

The Science of Why We Don't Believe Science

How our brains fool us on climate, creationism, and the vaccine-autism link.

By Chris Mooney | Mon Apr. 18, 2011 3:00 AM PDT

"A MAN WITH A CONVICTION is a hard man to change. Tell him you disagree and he turns away. Show him facts or figures and he questions your sources. Appeal to logic and he fails to see your point." So wrote the celebrated Stanford University psychologist Leon Festinger, in a passage that might have been referring to climate change denial—the persistent rejection, on the part of so many Americans today, of what we know about global warming and its human causes. But it was too early for that—this was the 1950s—and Festinger was actually describing a famous case study in psychology.

Read the entire article at Mother Jones.

This week’s IOM report on Lyme disease included a chapter on the history and sociology of Lyme disease by Robert Aronowitz, M.D., University of Pennsylvania. Some of the highlights below are worth reviewing because a slight change of perspective back in 1975 (dermatology instead of rheumatology?) might have prevented a great deal of medical and social confusion, and therefore prevented the start of Lyme activism with all of its anti-science quackery and ‘politicing.’

(Note: check out chapter 3 of Aronowitz’s book, Making Sense of Illness, for more on Lyme disease.)

From the IOM repot:

To place the discovery of Lyme disease in the United States in context, it is helpful to review earlier events in Europe. As early as 1910, European clinicians described a rash they called erythema chronicum migrans following a tick bite. In the 1930s, the disease was connected to meningitis, and people had strong suspicions that it was bacterial in origin, pointing to Rickettsia in particular. There was even speculation that spirochetes might be involved, although the evidence seemed weak. After World War II, European clinicians used penicillin to fight the illness, and it generally was thought to work. At the same time, different groups, primarily dermatologists and syphilologists, linked different syndromes, such as acro- dermatitis chronica atrophicans and Bannwarth’s syndrome, that are now considered part of the Lyme disease complex. These Europeans were already viewing the illness that Americans would later call Lyme disease as a systemic disease.

Framing Lyme disease as new disease rather than an American variant of an existing one had consequences. Early investigations focused on viruses as the prime etiological suspect. Thereforth, many cases were not treated with antibiotics, as was common in Europe. Newness brought fear, uncertainty, and controversy over the proper definition, diagnosis, and treatment of Lyme disease, as did various biological and sociological factors. The timing of the disease’s emergence coincided with the evolution of the AIDS epidemic. There was geographical risk of contracting the disease, as well as an apparent tendency for it to disproportionately affect certain populations, such as residents, especially children, of suburban areas. Diagnosis came primarily from clinical criteria, due to the imprecision of laboratory tests. Finally, because of the emergence of this new disease and the associated clinical manifestations, patients were concerned and frightened.

Disputes about the definition and diagnosis of Lyme disease helped spawn the debate about chronic Lyme disease that continues today. The controversy also spurred dispute about the benefits and risks of a vaccine against the disease that was developed during the 1990s and early 2000s. This dispute partly concerned the vaccine’s benefits and risks; however, the core issue remained the legitimacy of chronic Lyme disease as a sequela of infection with Borrelia. In particular, some people contested the diagnostic criteria employed during clinical trials for the vaccine, seeing them as much too narrow and reminiscent of the orthodox view of Lyme disease as an acute, treatable, and self-limited disease, rather than a disease that could become chronic.

[Several paragraphs about the vaccine and its demise follow.]

In conclusion, Aronowitz noted that the history and sociology of Lyme disease suggest several lessons:

  • Recognizing a new disease has no hard and fast rules: what counts often depends on historical events and participants’ interests and values.
  • Participants in such controversies need to tone down efforts to amplify fear of a disease, while avoiding overly optimistic pronouncements about it—a difficult balance to achieve.
  • Clinicians and researchers need to accept the diversity of diagnostic names and possible natural histories of a disease, and decouple disease naming and diagnosis from treatment decisions.

Well, the IOM committee charged with looking over the state of the science as it relates to Lyme disease and other tick-borne infections has completed its work. The result is a rather long (485 pages in its present form) document that doesn’t say much that is terribly interesting or useful (Apologies to some of the committee members.) Last year, when news of the committee’s planned work spread into LymeLand, there was a fair amount of hysteria, threats, demands, and finally, a boycott; all of which was reported in this blog. Looking at the report now, it’s hard to see why anyone (well, anyone who is rational) would get so excited.

The Committee was charged with looking into potential research opportunities and knowledge gaps in tick-borne infections. Some of what they identified as such is listed below.

Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases. Committee on Lyme Disease and Other Tick-Borne Diseases: The State of the Science; Institute of Medicine. 2011.

Knowledge Gaps and Research Opportunities

Ostfeld identified a number of key questions remain for future study:

  • Which factors other than the size of forest fragments predict the abundance of ticks and the prevalence of Lyme disease? Some studies show that certain types of edges between forest and non-forest habitats influence the risk of Lyme disease transmission. Other studies show that the types of matrixes surrounding forest patches are important. The degree of isolation of these fragments can also influence the vertebrate host community. Understanding these factors and their impact will require much more research.
  • Do Lyme disease, anaplasmosis, and babesiosis share common risk factors? If different hosts play different roles in infecting ticks with the pathogens that cause these diseases, that would suggest that the environmental determinants of risk of Lyme disease versus other tick-borne diseases are decoupled.
  • Which animal hosts of Ixodes scapularis ticks are of critical importance in determining the tick population density?
  • Which local and landscape features affect human use of forests and other habitats, and hence their contact with ticks? Although the density of infected nymphs in small forest fragments might be high, this finding may not be tremendously important for Lyme disease if people prefer to use more extensive forests for recreation. The decoupling of entomological risk and human behavior will mean that different educational and environmental interventions are needed to reduce risk.

Schwan noted that research is needed in the future falls into a number of key areas:

  • The number and training of medical acarologists and tick biologists are declining, and scientists who do investigate TBDs often focus only on Lyme disease-related questions.
  • Support for the training of tick biologists with wide-ranging interests and broad research portfolios are essential to ensure continued progress on the full spectrum of TBDs.
  • Field research on TBDs is particularly important: Analysis of ticks in the lab, using technologies such as polymerase chain reaction (PCR), is not enough.

Ginsberg noted a number of key areas for future work include the following:

  • The effect of physical factors on the distribution and abundance of ticks.
  • The effect of changing climate on the distribution of vertebrate hosts of tick-borne pathogens.
  • The factors that influence the infectivity of those hosts in the field versus in the laboratory.
  • The influence of the length of the active season on tick phenologies, or life cycle events.
  • Geographic patterns in the genetic structure of tick populations.
  • Efficient targeting and integration of techniques for managing human exposure to ticks. For example, land use planners and landscape architects could design communities and developments to reduce human exposure to ticks, even if they are relatively abundant. Such an approach would require a relatively modest investment.

There are a number of research opportunities to begin to answer questions regarding

outstanding issues associated with Lyme disease:

  • Create a network of investigators and clinical trials for Lyme disease and other TBDs, and promote opportunities for collaborative research.
  • Create a repository for specimens of serum and cerebrospinal fluid from patients with tickborne diseases.
  • Formalize definitions of tick-borne diseases and instruments for evaluating and following patients in different clinical groups.
  • Conduct broad-based studies of chronic Lyme disease, fibromyalgia, chronic fatigue syndrome, and other medically unexplained syndromes, free of any preconceived ideas on cause, perhaps led by the Institute of General Medical Sciences.

A number of areas are important for future research, including:

  • Developing accurate methods for identifying B. burgdorferi phenotypes:
  • Using appropriate animal models, such as the C3H persistent infection mouse model, to assess new approaches to diagnosis and treatment:
  • Developing better biological and clinical instruments to evaluate and measure the effectiveness of outcomes of treating its various manifestations:
  • Establishing standard operating procedures for developing criteria for acute and chronic Lyme disease; and
  • Gathering information and biological samples from patients at various stages of their disease, and using technology to evaluate those samples.

A number of questions offer research opportunities pertaining to babesiosis:

Epidemiology

• Where is babesiosis enzootic and endemic now and in the future?

• What is the incidence of babesiosis at the state, national and international levels?

• How fast is the incidence of babesiosis increasing?

• What is the frequency of transfusion-transmitted babesiosis?

• How often and where do pathogens other than B. microticause babesiosis?

Pathogenesis

• What is the pathogenesis of babesial illness?

• Are there B. microti substrains with varying pathogenic potential?

• What are the primary immune factors responsible for clearing babesiosis?

• What are the mechanisms that worsen the severity of babesiosis with aging?

Clinical Manifestations

• What are the long-term complications of babesiosis?

• How does coinfection with babesiosis and other co-transmitted pathogens influence transmission in the reservoir host and disease in humans?

Diagnosis

• Can scientists develop better biomarkers for babesiosis, including antibody, nucleic acid amplification test technologies, and culture?

Treatment/Prevention

• How can transfusion-transmitted babesiosis be prevented?

• What new antiparasitic therapies are available for babesiosis?

• Is the use of partial-exchange transfusion to treat severe cases of babesiosis equivalent to full-exchange transfusion?

A number of questions require additional research, including:

  • What is the natural history of HGA? Do patients with HGA have persistent health problems after recovering from acute infection? A retrospective study in Wisconsin looked at individuals during the 12 months after they had been diagnosed with HGA. HGA patients had significantly more fever, shaking chills, sweats, and fatigue, as well as higher levels of bodily pain and lower levels of relative health than individuals in a control group.
  • Clinical study groups are needed to obtain a critical mass of patients, standardize approaches, and develop sample repositories.
  • Why does the severity of HGA vary so widely? Is the severity of disease determined by host or pathogen? What are the microbial determinants and human genetic predispositions? What is the true pathogenesis and immunopathogenesis of HGA and pathogen-defined injury to tissues and organs?
  • How accurately are HGA cases identified? Are existing acute-phase diagnostics sufficient?
  • Does the poor predictive value of serology hamper effective diagnosis? How often does coinfection with other tick-transmitted pathogens occur? What are the short- and long-term consequences of proven coinfection?

Areas for future study are described below:

Diagnostics

  • Develop diagnostic assays, both serologic and molecular, that can identify patients during acute illness and differentiate the causative Rickettsiaspecies.
  • Better assess the sensitivity and specificity of new commercial serologic assays, including the IgM enzyme immunoassay.
  • Improve surveillance and research on human infections caused by tick-borne Rickettsia species other than R. rickettsii.

Emergence

  • Explore the role of the brown dog tick in the ecology of Rocky Mountain spotted fever.
  • Understand the ecological cycle of R. rickettsii in the brown dog tick, including the role of dogs as a possible reservoir.
  • Improve surveillance of infections caused by other species of spotted fever Rickettsia.
  • Given that ticks are acutely sensitive to moisture, precipitation, and temperature, investigate the role of climate change in the emergence of spotted fever rickettsioses.

Special Populations

  • Investigate preventable factors that contribute to higher mortality from Rocky Mountain spotted fever among children and American Indian populations, and in certain geographic areas.
  • Clarify links between Rickettsia infection and low socioeconomic status.
  • Investigate differences in pathogenicity amongRickettsia strains in different geographic areas.
  • Develop new antibiotics and prevention strategies specifically for rickettsial infections, particularly for pregnant women and high-risk populations for whom antibiotics are contraindicated.

There are several critical questions that offer research opportunities pertaining to the

effect of babesiosis on populations at risk for severe and fatal outcome:

1. What are the causes of life-threatening babesiosis in people who are over 50 but otherwise healthy, and how can they best be treated and the problem prevented?

2. What are the causes of life-threatening babesiosis in people with asplenia, HIV, malignancy, and pre-morbid conditions, and how can they best be treated and the problem prevented?

3. Why do people who acquire babesiosis through blood transfusion experience more severe babesiosis and how can they best be treated and the problem prevented?

Weis noted three key questions for future study are the following:

  • What is responsible for the variability in individuals’ response to infection by Borrelia burgdorferi?
  • Why do some symptoms persist in some patients?
  • What is responsible for the pathogenesis of neuroborreliosis in patients?

Norris noted a number of key questions for future study are as follows:

  • What are the cis- and trans-acting factors—that is, DNA segments and proteins—that regulate and carry out vlsE recombination?
  • Can investigators use tissue explant models to study the mechanisms of immune evasion and other aspects of the pathogenesis of Lyme disease?
  • Do differences in the vls antigenic variation systems in Borrelia correlate with distinct manifestations of the disease, such as arthritis and neurologic effects?
  • How can a Borrelia protein that induces strong antibody responses—now used to diagnose Lyme disease—help the organism evade a host’s immune system?
  • What other mechanisms of immune evasion are involved in persistent infection by Lyme diseaseBorrelia?

Barthold noted a number of key questions need future study:

  • Does collagen have a specific B. burgdorferiligand?
  • What is the role of innate immunity in the sequestration and persistence of B. burgdorferi?
  • What is the role of adaptive immunity in the sequestration and persistence of B. burgdorferi?
  • What replicative and metabolic activity do sequestered B. burgdorferi undergo?
  • What is the antibiotic tolerance of sequestered B. burgdorferi?

Ismail noted the following areas are critical ones for future study:

Understanding the Bacteria

  • The regulatory mechanisms that control the developmental cycle of E. chaffeensis;
  • Proteomic analysis of the biphasic forms of E. chaffeensis, to identify the determinants of invasiveness and virulence;
  • The mechanistic details of how the T4SS and other secretion mechanisms secrete Ehrlichia andAnaplasma effectors, and their subcellular sites of action; and
  • Identification of effector candidates—including ankyrin-motif bearing proteins and cognate partners secreted via T4SS or other secretion apparatus. This will provide a molecular basis for understanding pathogen subversion of host defense, and disease.

Understanding the Host

  • Immune defense mechanisms and regulation at the peripheral sites of tick-borne Ehrlichiainfection, such as the skin, liver, and lung;
  • The relative contribution of specialized Langerhans cells, hepatocytes, Kupffer cells, and endothelial cells to immune surveillance, immunity, and pathology;
  • Local factors influencing dendritic cell, NK, and T cell recruitment and differentiation.
  • The mechanisms controlling the cross-presentation of endosome/phagosome-derived Ehrlichiaantigens to CD8+T cells; and
  • The role of regulatory T cells in controlling immune responses to Ehrlichia.

Potential Therapeutics

  • Molecular and cellular profiles of mild and fatal infections in patients with HME;
  • Collection of human samples, such as blood, cerebral spinal fluid, and tissues;

Valbuena noted a number of key areas for future study include:

  • Determination of the mechanism by which rickettsia are reactivated in the tick to an infectious state. (The fact that the bacteria must be reactivated allows for public health intervention. For example, because ticks must remain attached to a host for at least 6 to 8 hours to transmit R. rickettsii, people at risk for exposure could prevent infection by checking their bodies daily for ticks.)
  • Further definition of the cells that are initially infected and the underlying early pathology.
  • Rickettsia could be transmitted directly into vessels and cause rapid systemic infection or, alternatively, the bacteria could move into lymphatic vessels, and from there into local lymph nodes, triggering an early response of the immune system.
  • Understanding of the preference of Rickettsia rickettsii to infect endothelial cells in vivo, given that they can infect numerous cell types in vitro.
  • Better understanding of the roles of autophagy and of the activated innate intracellular mechanisms is needed.
  • Identification of the metabolic pathways used by rickettsia during growth and replication in the cytosol.
  • Identification of genes and proteins differentially expressed and required for growth in mammalian hosts versus tick vectors.
  • Identification of the R. rickettsii antigens that stimulate a protective immune response. This will be essential for development of a vaccine against Rocky Mountain spotted fever.
  • Development of better animal models including those that better recapitulate the natural mode of transmission via tick bite and include human tissue and immune systems.

Aguero-Rosenfeld identified a number of key areas were identified for future work:

  • Development of programs to educate practitioners on the appropriate use of laboratory tests for Lyme disease.
  • Improvement of direct methods for detecting B. burgdorferi in samples from patients. For example, scientists could improve and automate culture techniques and use PCR to target several gene sequences.
  • Development of immunoassays containing a combination of recombinant or peptide antigens of importance, such as VlsE and OspC, in a bead format or other comparable method that would allow measuring the quantity of antibodies to individual antigens.
  • Development and evaluation of assays on cerebrospinal fluid that can support a diagnosis of neuroborreliosis.
  • Development of an algorithm that enables laboratory tests for B. burgdorferi infection to determine the stage of disease or duration of infection.
  • Establishment of a repository of well-characterized samples from Lyme borreliosis patients for use in evaluating new assays.
  • Recombinant antigens and peptides such as C6, including variations in gene sequences, require further evaluation for sensitivity and specificity

Hassett noted that a state-of-the-art biorepository is essential to finding biomarkers for

post-Lyme disease. To meet this research goal, the following features need to be considered:

  • A repository should include a wide-range of samples including serum, plasma, cerebrospinal fluid, organ tissue, heart rate variability, imaging studies, and genetic information.
  • The patients whose samples would be included in the biorepository must be carefully phenotyped. That detailed information should be collected and made available in regard to clinical characteristics of their Lyme disease, other medical comorbidities, psychiatric comorbidities, psychological factors, symptom profile and severity, and functional status.
  • The biorepository would have high-quality maintenance and provide open access to all researchers.
  • A conference or workshop convened specifically to hear all viewpoints regarding the attributes of such a biorepository would help make it a reality.

McBride noted there are a number of avenues for future work on vaccines against tickborne diseases:

  • For Rickettsia, live attenuated vaccine mimics the natural infection; thus Rickettsia that are genetically attenuated by gene knockouts are promising for future development of vaccines for rickettsial diseases.
  • Vector proteins are attractive vaccine candidates. T Targeting vector proteins that impair tick feeding, host immune modulating and coagulation activities and tick proteins that interact with pathogen are under investigation.
  • Vaccines with effective combinations (elements directed against both vector and pathogen) of protective mechanisms are likely to be attractive future approaches to vaccine development.

Brown noted that researchers should conduct the following work on vaccines against

tick-borne diseases:

  • Examine surface-exposed, conserved proteins are priority targets.
  • Target the subdominant antigens for persistent pathogens.
  • Use naturally associated proteins to increase T cell responses.
  • Focus on T cell epitopes recognized by the majority of individuals within a population, as well as by antibodies.
  • Study a pathogen in its human host, or an outbred large animal model.
  • Develop metrics to measure protective immune responses in these species.

April 19, 2011

LOS ANGELES (AP) – Los Angeles County health officials say the bacteria that causes Legionnaires’ disease was found in a hot tub at the Playboy Mansion where scores of people became ill after attending a fundraiser in February.

The Los Angeles Times says health officials presented their findings Friday at an annual conference at the Centers for Disease Control in Atlanta.

The legionella bacteria also causes a milder illness calledPontiac fever. Symptoms include fever and headache.

Many people who attended a fundraiser party at the Playboy Mansion came down with a respiratory illness after the DomainFest conference in February.

Officials contacted 439 people and found that 123 had fevers and at least one other symptom with 69 falling ill on the same day. Epidemiologists used social media to contact the conference attendees.

And speaking of Playboy, here’s an interesting website devoted to a ex-bunny who, like the old saying about children, should be seen but not heard.

Having spent some time in southern Africa, I was interested to read this paper about the evolution and virulence of babesiosis among non-indigenous canines. The situation is in marked contrast to African bovine babesiosis where cow, tick and parasite have had millennia to reach a degree of evolutionary accommodation. That’s not the case with man’s best (and imported) friend, the dog, who has to put up with non-domestic canine competitors, snakes, monkeys, and a variety of aggressive ticks. This may be one time when the dog might have preferred to stay at home.

Why is Southern African canine babesiosis so virulent? An evolutionary perspective.

Barend L Penzhorn, Department of Veterinary Tropical Diseases, University of Pretoria, Onderstepoort, 0110, Republic of South Africa.

Canine babesiosis is a common, highly virulent disease in Southern Africa with even pups and juveniles being severely affected. This contrasts with bovine babesiosis, for example, where host, parasite and vector co-evolved and young animals develop immunity after infection without showing clinical signs. Babesia rossi, the main causative organism of canine babesiosis in sub-Saharan Africa, was first described from a side-striped jackal (Canis adustus) in Kenya.

Although data are meagre, there is evidence that indigenous African canids, such as jackals and wild dogs (Lycaon pictus), can harbour the parasite without showing untoward effects.

Dogs are not indigenous to Africa. The vast majority of dogs presented at veterinary facilities in South Africa represent recently introduced European, Asian or American breeds. The contention is that B. rossi is a new challenge to which these dogs have not adapted.

With intensive treatment of clinical cases, natural selection is effectively negated and the status quo will probably be maintained indefinitely. It is postulated that Babesia vogeli, which frequently results in unapparent infections or mild manifestations in dogs, represents or is closely related to the ancestral form of the canine parasite, possibly originating from wolves (Canis lupus).

Read the entire article here.

Ex-Knox resident back to screen Lyme disease film

KnoxNews.Com

April 18, 2011

Filmmaker Andy Abrahams Wilson finished his documentary 'Under Our Skin' three years ago, but the fact that he'll be attending a screening of it in West Knoxville this week supports his description of how he decides what films to make.

[snip]

The director-producer spent four years and generated nearly 400 hours of footage working on thedocumentary about Lyme disease and the medical community's reluctance to acknowledge it as a chronic illness.

[If he means a chronic infection, there’s no microbiological evidence for such a phenomenon in Lyme disease, and if he means permanent, post-infection tissue injury or damage, then it’s a well-described phenomenon for many cases of Lyme, and many other infections. A good infectious disease textbook could have informed him of that, and saved him years of pointless camera work.]

[snip]

Wilson thought his twin sister, Wendy, was malingering when she complained of ailments that later were diagnosed as Lyme. It wasn't until a friend in Northern California received mistaken diagnoses of MS and ALS that he began to study Lyme disease and learned about the difficulties in identifying and treating it.

Lyme bacteria can lie dormant for years; symptoms can mirror those of other diseases; and the blood test for Lyme is unreliable.

[No, No, and No.]

'We need to change the way we look at illness and the way we look at healing,' Wilson said. 'This idea of one pathogen, one illness, one cure is a dinosaur of a paradigm.

[Obviously, Dr. Wilson has never seen one case of TB or syphilis or Q fever, or TBE or a hundred other well-known infections and their etiologic agents. Maybe he should stick to doctoring video footage.]

'Lyme disease … is not really just one pathogen. It's a complex of different pathogens, different microorganisms, genetic susceptibility, trauma, psychological factors possibly.'

[Well, doc, what then is Borrelia burgdorferi, and why is it your quack Lyme doctors see it everywhere and treat it with months or years worth of antibiotics?]

Another problem is that the mainstream medical community believes the tick-borne illness is limited geographically, even though Lyme cases have been reported in every state.

[Malaria is “limited geographically” too. That’s why there aren’t too many cases in Antarctica or Finland. Of course, people travel and they often bring home infections such as malaria, Lassa fever, Rift Valley fever, dengue and various other aliments. Just because a case of Lassa shows up in a Chicago hospital doesn’t mean Lassa fever is endemic to Illinois.]

'What is not debatable is that Lyme disease is the largest vector-borne disease in the country today, and yet we don't take it seriously,' said Wilson. 'We hear about West Nile virus and other things, but Lyme disease is (treated) like UFOs or crop circles.'

[Yes, it’s the most common vector-borne infection in the U.S. because we don’t have a lot of mosquitoes and ticks transmitting the types of viruses, parasites and bacteria that make up so much of the disease burden in the tropics and developing parts of the world. Would he be happier if the U.S. had more cases of malaria or leishmaniasis or more fatal cases of Rocky Mt. Spotted Fever?! We’re lucky it’s only Lyme: a geographically- and seasonally-limited infection that is non-fatal, non-communicable, and readily responsive to cheap antibiotics.

As for not taking it seriously, I think 30 years of federally-funded research, education and treatment trials suggests otherwise. It’s people like Wilson and his Lyme activist backers who have taken an interesting domestic example of an emerging infectious disease—due to changes in ecology and lifestyles—and turned it into a freak show of government conspiracy, Nazi doctors, secret laboratories, biological warfare, and Big Pharma finance. To date, the only things they’ve left out of their fantasies are UFOs and crop circles.]

[snip]

Computer scientist researched her own condition, Lyme disease

April 11, 2011

By Pohla Smith, Pittsburgh Post-Gazette

When doctors proved unable to cure her Lyme disease, computer scientist Jennifer Mankoff did what many people do when they're chronically ill: She went online to see what medical organizations had to say about it.

[snip]

Eventually, Ms. Mankoff found a doctor who agreed to do long-term treatment and after 18 months of antibiotics she felt well enough to stop the drugs.

During that time, she managed to get tenured, write a proposal for a research study, and start the paper with four colleagues. The topic: how longtime Lyme disease sufferers handled and were affected by the competing information online.

The study, on which she is lead author, has been accepted for presentation at the 2011 Computer Human Interaction Conference in Vancouver, Canada, next month.

The problems of accessing reliable Internet-based information have been reviewed before (here, here, here,here, here, and here) and Prof. Mankoff’s paper doesn’t add much that wasn’t already known or suspected by earlier reviewers of disease-specific topics from the Internet. Here are some of the highlights and conclusions from her paper. [Added comments are in brackets.]

We present a study exploring how people with prolonged or recurring Lyme disease symptoms engage with conflicting information online. …our participants confronted not just this basic explanation of Lyme disease [The dominant or mainstream view of this infectious disease], but at least two other explanatory models of their disease [referred to as Minority, and Alternative].

Online coherence is comparatively absent for those seeking information about Lyme disease treatment failure, reoccurrence, or prolonged symptoms.

…our interpretation of those data is also informed by the authors’ experiences with chronic illness (including Lyme disease) [What else did she have?] and conversations with physicians, researchers, and patients aligned with multiple models of Lyme disease. Additionally, we attended support group meetings, visited doctors’ offices aligned with multiple models, and immersed ourselves in reading online and offline content….

The study consisted of a survey of only 150 participants from a couple of Lyme disease forums and the waiting room of a LLMD, and a subsample of just 20 people. 140 described their online activities; 128 provided demographic information. Of the 128, 82% were female, 95% percent were white, and the median age range was 41-50. [So the typical online chronic Lyme patient is a middle-aged white female. Right away, one gets the sense that this is less an infectious disease and more likely a variety of autoimmune or post-menopausal complications. Pathogens tend to be equal opportunity pests so there should be an equal number of men.] 55% were unable to work. 20% had self-diagnosed. Everyone in the survey visited Lyme-specific websites more often than general Internet sites.

The sample is not representative of all Lyme patients. People with difficult to treat or prolonged symptoms are probably more likely than others to seek support groups and subscribe to online lists.

…when participants spoke of “chronic Lyme disease” and talked about long term antibiotics and “Lyme literate” doctors, we labeled this as aligned with the Minority model [as opposed to the Dominant IDSA model]. …Alternative models we encountered were generally consistent with the minority model that Lyme disease can be a persistent problem that is not easy to diagnose or treat, but advocated treatments not centered on antibiotics or Western medicine.

From a random collection of Lyme disease websites, 80% were found to be Alternative or Minority. Patients had authored 28% of the minority or alternative content, and none of the dominant content. Only 6% of minority or alternative content had been authored by doctors…. No support groups or blogs were in the dominant category.

…many of our participants shifted their beliefs over the course of their illness…. After they settled on an explanatory model, participants started to avoid information contradictory to it. …online resources not only helped participants to adopt a new explanatory model of their disease, but to adopt a new group identity aligned with others having the same or similar illness. As participants began to settle on their own interpretation of their disease, they found themselves increasingly out of alignment in their offline relationships. When doctors, friends, or family opposed the minority model, participants learned to associate the model with an anti-establishment and socially undesirable belief system. Some participants also discovered that questions about their belief in the minority model led to questions about whether they were really sick.

Changing others’ minds was an important part of participating in the Lyme community.

Participants who contributed actively to online Lyme related content did so in the context of a distributed online patient community in which, by the time of our study (2009), the minority model had become mainstream. In Lyme forums, which mix social interaction with the interpretation of online content, participants acted out community norms, such as protecting the names of doctors and supporting other patients.

One interviewee describes how forum members watch for hidden motives or shallow speculation about medical facts. “… as soon as somebody says, “I tried this new thing”, they’ll say, “I noticed that you never posted before. Are you trying to sell us something, or what’s your connection to this?” So there’s … somebody who can kind of be policing that. And even regular posters, if they post about something that’s a little outside the [minority model] mainstream… they will say, ‘Do you have any studies to back that up? … why is that true for you?” Another interviewee wrote, There are webmasters who … enforce a kind of public speak, something out of 1984… They don’t like to say anything negative about the conventional [minority model] treatment ...”

…the negative feedback participants received led them to identify with a new community of people, “Lymies,” as they developed a new understanding of their disease. Defense (hiding doctors) and resistance (advocacy, activism) are defining parts of this community. Participants worked to increase their new model’s legitimacy by engaging in activist behaviors. Their passion for this cause is reflected in a level of emotional engagement that one might not normally associate with Internet health information….

It is true that patients may get misleading information or become alarmed about symptoms that are in fact not serious, or they may focus too much attention on disease processes and symptoms, leading them to ruminate about their health. Alarming websites could reinforce hypochondria or cause people unnecessary concern about their health status. …if a resource refers people to sites where an issue is debated or a side is taken, how are extremists to be handled? Should their comments be deleted? Should readers be warned but not protected? Who should judge who should or should not be given a voice in the debate? Although many sites focus on the debate we highlighted, there are also Lyme sites selling questionable cures.

The study is obviously limited by the small number of self-selected people from Lyme related websites and medical practices, which the author readily acknowledges:

This study also does not address a larger social issue surrounding patient activism. Although patient activism can be seen as a case of democracy at work, and activism may encourage positive outcomes, it also can foster extremism and uncivil debate…. Our work focuses primarily on the viewpoint of people currently aligned with the minority model, and does not cover the full range of debate online or its larger social implications.

Lyme disease is more prevalent, due to better reporting, diagnosis

By P. Smith - Pittsburgh Post-Gazette

April 12, 2011

[snip]

In 2009, according to a state-by-state report issued by the Centers for Disease Control and Prevention, Pennsylvania had 4,950 confirmed cases plus 772 probable ones. That's up from 3,985 cases in 2004.

But those numbers are deceptive, say both Stephen Ostroff, director of the Pennsylvania Bureau of Epidemiology and acting state physician general, and Kevin Griffith, medical epidemiologist officer in the CDC's Division of Vector-Borne Diseases.

There are several reasons for the statistics besides a simple spread of the Lyme bacteria. They include a change in the CDC reporting procedure that has led to increased surveillance, Griffith said; what Ostroff calls "a greater recognition and appreciation" that has led to more testing and identification of Lyme; and an increase of people moving into previously wooded, high-risk areas.

The CDC also has recently changed the definition of a positive Western blot, the test used to confirm the presence of Lyme antibodies in the blood, which also could lead to more reported cases.

Nevertheless, Ostroff sees a geographic spread of the Lyme bacteria.

"When you look at it nationally, the numbers are increasing, and we also see ... a westward movement," he said.

Similarly, Nowalk [a Lyme disease researcher at Children's Hospital of Pittsburgh ] cites both greater awareness of Lyme and a spread of the Lyme bacteria as reasons for an increase of two to three times the number of cases -- he estimates a total of 60 or 70 -- seen by Children's Hospital last year. He also said experts believe the "true number" of Lyme cases is two to three times greater than that reported.

[snip]

"The later the diagnosis, the longer the duration of antibiotics you'll need," said Nowalk, a specialist in pediatric infectious diseases and assistant professor of pediatrics at Children's and the University of Pittsburgh School of Medicine.

How long a duration is a matter of some controversy that can be traced to the fact that some symptoms can linger for a very, very long time. "There can be a lot of damage or symptoms that can last months or even years," Nowalk said.

Some doctors believe those lingering symptoms mean the treatable form of the disease has developed into an untreatable autoimmune disorder they call post-Lyme disease syndrome.

Other physicians and groups call the lingering ailment chronic Lyme disease, and some of them advocate very long and varied courses of antibiotics. In some cases, insurance companies have denied coverage of that treatment.

The Centers for Disease Control and Prevention recommend two, two- to four-week courses of antibiotics, citing three federally funded studies that showed longer courses were not beneficial and had been linked to serious complications.

Most of the doctors contacted for this article said they use the CDC guidelines.

A quick note from the propaganda arm of LymeLand:

Dear UNDER OUR SKIN Supporter,

Just a quick update to let you know that starting next month…UNDER OUR SKIN will be airing on many PBS stations across the country, and every day more and more stations are programming the film.

Well, that’s not quite correct. The film may be shown on some PBS stations through NETA (National Educational Telecommunications Association). NETA is separate from PBS, so PBS has nothing to do with this B horror movie, and all the PBS member stations are independent and can broadcast whatever they choose to broadcast.

Still, it’s bad enough that some stations may use this home movie as airtime filler. Worse, this note shows that the OUS creators have learned an important trick from the quack doctors who live so well off of Lyme patients: use the patients to attract more patients and use their money to raise defense funds against medical licensing boards. Wilson and his band of merry pranksters are using foolish Lymeland denizens to promote his vision of alternative medicine and anti-science hysteria, and raise money for his production company.

Everyone is learning something new…expect the Lyme patients.

Acta Clin Belg. 2011 Jan-Feb;66(1):58-9.

False positive lyme serology due to syphilis: report of 6 cases and review of the literature. Naesens R, Vermeiren S, Van Schaeren J, Jeurissen A.

Department of Microbiology, GasthuisZusters Antwerpen, Antwerp, Belgium.

A 44-year-old man presented with visual field defects. Ophthalmoscopy revealed papilloedema of the left eye. Neuroborreliosis was suspected and serum was positively being tested using VIDAS* Lyme screen II (bioMerieux Vitek Inc). However, confirmatory testing using the Borrelia VlsE C6 titre was negative. Western Blotting on serum and cerebrospinal fluid could not confirm the possible diagnosis of neuroborreliosis.

VDRL and TPPA testing was positive, and finally, the diagnosis of neurosyphilis was established. We subsequently screened our database on patients with positive VIDAS Lyme screening and negative confirmatory testing by Western blot, and found another 5 cases in which Lyme screening was false positive due to cross-reactivity with Treponema pallidum antibodies.

Our data show that in patients with positive Lyme screening and negative confirmatory testing, performance of lues serology should be considered.

The golden rule among Lyme activists is: never reveal the name of any “Lyme Literate” physician willing to treat (and bill) you for an infection you probably do not have but would like to. People get kicked off LymeNut for mentioning the names of these quacks so there is quite a bit of nonsense employed in order to refer to any of these clowns. Case in point: the below notice of a lecture by “Dr. L.”

Gee, who could that be? I could look through the online list of well-known Lyme quacks. Better yet, I could click on the below link kindly provided by the poster, which takes me to the Skidmore lecture calendar for April 12, to discover that Dr. L is—big surprise—Ken Liegner. Why do these Lymenuts play these games?

Lecture by Dr. L, "Chronic & Neurologic Lyme Disease: An Epidemic Denied"

Where: Palamountain Hall Gannett Auditorium = Skidmore College, Saratoga Springs, NY. http://cms.skidmore.edu/events/index.cfm

PM [private message] me if you want to know his full name!

Got it, thanks.

tau·tol·o·gy

[taw-tol-uh-jee]

–noun, plural -gies.

  1. needless repetition of an idea, especially in words other than those of the immediate context, without imparting additional force or clearness, as in “widow woman.”

There’s a story (an old story) in the Vancouver papers about the state of Lyme disease in this part of Canada. Mainly it’s a rehash of activists' claims about the dangers of Lyme, the incompetence of doctors, the failure of diagnostics, and the government’s role as dark conspirator in all of the above.

But the accusations and distortions are old news, previously reported here and here.

Oh Canada!

The Internet regularly provides a flood of crazy commentary about Lyme disease (not to mention other illnesses), but it’s easy to forget that some of the online nonsense spills over into books. Apparently, there’s quite a market for this kind of ‘literature’ among the Lymees. I suppose they buy these things to re-enforce their own fears and beliefs. And like many conservatives who buy up multiple copies of right-wing screeds to give to friends and neighbors in the hope of converting them, I suspect Lymee readers do much the same. From the looks of the Lyme literature though, it would take a high degree of ignorance or gullibility to be easily swayed by this pile of myths, lies, accusations, innuendo, libel, misdirection, propaganda, paranoia, conspiracy, blatant hucksterism, and really bad writing.

Cure Unknown: Inside the Lyme Epidemic. One of the best known books about the “Lyme disease conspiracy,” it’s pages are puffed up with numerous personal anecdotes about bad health and bad doctors. Written by Pamela “I’m a real journalist” Weintraub.

The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease by Nicola McFadzean. Diet? The title says it all. Substitute the word Lyme for Strep or TB or syphilis and see how silly it looks.

The Top 10 Lyme Disease Treatments: Defeat Lyme Disease with the Best of Conventional and Alternative Medicine by Bryan Rosner. Probably one of the biggest online hucksters for Lyme disease therapies (apparently antibiotics don’t work), his product-filled websites almost make Amazon and Craigslist look bare-boned. Not surprisingly, his book is full of quack remedies and treatment protocols from many well-known quacks, and a forward by James Schaller.

Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease by Constance A. Bean and Lesley Ann Fein. A flawed book previously reviewed by Phil Baker. Read the review here.

Everything You Need to Know About Lyme Disease and Other Tick-Borne Disorders, 2nd Edition by Karen Vanderhoof-Forschner. An out-of-date compilation of her opinions and other people’s facts.

Recipes for Repair: A Lyme Disease Cookbook by Kenneth B. Singleton, Gail Piazza and Laura Piazza. Now we’ve gone from diets to recipes to treat a common bacterial infection! What’s for dessert?

When Antibiotics Fail: Lyme Disease and Rife Machines, with Critical Evaluation of Leading Alternative Therapies by Bryan Rosner, Michael Huckleberry, M.A. and Karin Driesen. When antibiotics fail you usually die, but in this case Mr. Rosner has something he’d like you to buy: a quack electromagnetic device from the 1930’s.

"It's All In Your Head," Patient Stories From the Front Lines: Intimate Aspects of Chronic and Neuropsychiatric Lyme Disease by PJ Langhoff. “What do Lyme disease, Morgellon's, HIV/AIDS, Multiple Sclerosis, Rheumatoid Arthritis, Fibromyalgia, Chronic Fatigue Syndrome/ME, Lupus, Parkinson's, Alzheimer's, Autism, Cancers, Allergies, Autoimmune diseases, Prion diseases, Leukemia, Polio, Asthma, Influenza, and other disorders of our day have in common? Where do these and other diseases come from and how did they manage to emerge? Learn startling new information about the history of infectious diseases, the origins of the Lyme disease organism, biowarfare for purposes of killing "enemy" populations not intended to target people, and important information about vaccines, genetically modified (GM) foods, animals, plants, insects, and products, and "public health" initiatives that may be contributors to past, present, and future global health crises. Who is controlling the information flow about infectious diseases of global significance?” This “writer, patient, mother, advocate, and support group leader,” who also unfortunately owns a publishing company, is going to tell you. Hold on to your tinfoil hats.

Disguised as the Devil: How Lyme Disease Created Witches and Changed History- M. M. Drymon. Rewriting history to blame the Salem witch trials on Lyme disease instead of the religious milieu and personal conflicts among the accusers and victims.

The Lyme Disease Survival Guide: Physical, Lifestyle, and Emotional Strategies for Healing- Connie Strasheim, with yet another forward by James Schaller. Apparently, this book is so bad even some Lyme activists hate it: “There is a lot of opinion and conjecture being passed off as fact. There are no references. There is poor research…. There are dangerous recommendations. The humor falls flat. And if you're not a fundamentalist Christian, you may be offended by all the god-talk.”

Lab 257 : The Disturbing Story of the Government's Secret Plum Island Germ Laboratory by Michael Christopher Carroll. Local lawyer (mis)uses the techniques of ‘creative non-fiction’ to pick up where Nelson DeMille’s wonderfulnovel, Plum Island, left off to write a conspiracy story about Nazi scientists and deadly germs (e.g., B. burgdorferi) respectively working on and escaping from Plum Island.

The Poison Plum by Les Roberts. One reviewer wrote, “The Poison Plum is a hack job -- miserably written, terrible, wooden dialogue, much of the book is Person A telling something to Person B, then Person B telling Person C the same thing ad nauseum. The underlying purpose of the book is to illustrate how the world works according to the Christian Fundamentalists. At the end, God takes matters into His own hands. But until we are thus saved, we are treated to a view of politics that blames the New World Order on "liberal" politicians and media. At page 433, the author reveals that his heroes include Senator Joseph McCarthy and FBI Director J. Edgar Hoover.”

Over the Edge- A suspense novel based on Lyme Disease and the “Lyme Wars” by Brandilyn Collins. Plot summary: if you don’t believe in Christ, I mean chronic Lyme, someone will give you Lyme disease and make you suffer. It’s worse than the Inquisition’s comfy chair. The Christian author writes, “In May of 2003 God granted me a miraculous healing of [Lyme] disease. After a special time of prayer, all symptoms disappeared within an hour. I remained completely well until 2009, when I was reinfected with Lyme. [God, apparently, was on vacation at the time.]

Radiance: A Novel by Louis B. Jones. From Amazon: “Mark Perdue has so many problems that when he starts feeling chest pains on the tarmac at LAX, it dawns on him that a heart attack might be an efficient way out. Once an eminent physicist, he hasn’t published or had a new idea in a decade. The younger professors at UC Berkeley pity him, and he’s taken to using the back staircases to avoid their looks, which all seem to be labeling him dead weight. At home, his wife has been inconsolable since the recent late-term abortion of their afflicted fetus. And he can’t deny it any longer—he is decidedly losing his mental faculties to chronic Lyme disease.” I can’t wait to find out if he joins a support group or makes an appointment with LLMD Stricker.

Things don’t seem to be going well for the ILADS boys. Their guidelines have been dropped by the National Guideline Clearinghouse. The British Health Protection Agency dismissed them. Sixteen other European and North American medical societies ignored them. Even the Poleswent out of their way to abuse them.

Now the vanity press, Dove Press, is abandoning these quackers. In the quest for legitimate scientists and physicians to serve as manuscript reviewers, the Press writes, “working with the International Lyme and Associated Diseases Society (ILADS) in the US was under consideration at that time. …we have decided not to work with this society. This decision has been reached after much consideration and feedback about and with ILADS.”

Well, their foolish patients still love them.

Sex After a Field Trip Yields Scientific First

by Martin Enserink

6 April 2011

A U.S. vector biologist appears to have accidentally written virological history simply by having sex with his wife after returning from a field trip to Senegal. A study just released in Emerging Infectious Diseases suggests that the researcher, Brian Foy of Colorado State University in Fort Collins, passed to his wife the Zika virus, an obscure pathogen that causes joint pains and extreme fatigue. If so, it would be the first documented case of sexual transmission of an insect-borne disease.

[snip]

There is no direct evidence that Foy's wife was infected through sexual contact, but the circumstantial evidence is strong. It's very unlikely that she was infected by a bite by a mosquito that first bit her husband; the three tropical Aedes mosquito species known to transmit Zika don't live in northern Colorado, and moreover, the virus has to complete a 2-week life cycle within the insect before it can infect the next human; Foy's wife fell ill just 9 days after his return. And yes, as the paper puts it, "patients 1 and 3 reported having vaginal sexual intercourse in the days after patient 1 returned home but before the onset of his clinical illness." ("My wife wasn't happy with what happened afterwards," Foy adds.)

[snip]

Foy and his co-authors believe sexual transmission of a mosquito-borne virus has never been reported before, although there were hints from the literature that it might be possible. Boars experimentally infected with the Japanese encephalitis virus, for instance, shed the virus in their semen, and female pigs artificially inseminated with it become infected.

[snip]

What's still unclear is how important sexual transmission is in Zika's epidemiology. Haddow believes it plays a very minor role at best and that the vast majority of cases occur through mosquito bites. Yet a few data points from the Yap outbreak hint that sexual transmission may have played a role, Foy says. The population aged between 30 and 59 was hardest hit, and among women, the so-called attack rate—the percentage of people who get sick—was almost 50% higher than among men. (With most sexually transmitted infections, vaginal intercourse poses a higher risk of infection for women.) But there could be other explanations for that as well; Foy says he's interested in studying the issue.

Read the whole ScienceNow article here.

By Jaclyn Reiss/Daily News correspondent

MetroWest Daily News

Apr 06, 2011

BOSTON —A local legislator is backing a bill that would create a multi-front war on Lyme disease through research, education and surveillance.

"It's really something we need to get our arms around," Rep. Carolyn Dykema, D-Holliston, said following a public health committee hearing on a plan to establish a Lyme disease commission.

The legislation calls for creating a research institute at the UMass Medical School in Worcester, which would work on tests and improving patient care.

If passed, the measure would fund educational material for physicians and teachers to identify the signs, symptoms and risks of Lyme disease and establish a clinical-screening study in regions at high-risk for Lyme disease and a statewide program to test for tick-borne diseases.

The commission would also be charged with chasing any available grants and federal funding, reviewing updates of treatment guidelines by the Infectious Disease Society of America and improving general medical care for patients with chronic Lyme disease.

Dykema said she has also filed a bill to make Lyme disease prevention and education the responsibility of the state Mosquito Control Board, which could take immediate steps in these areas.

"My interest in this issue has been driven by individuals in the community who have this disease, and I have been touched by it personally," Dykema said.

[snip]

Read more here.

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06 APRIL 2011

I missed this interesting article from last November about the efforts of quacks to organize themselves into societies and associations in order to promote, and sometimes legislate, alternative medicine and other questionable therapies and practices. Part of MedPage Today article is below.

Docs Organize to Promote Unproven Therapies They Believe In.

by Nancy Walsh, Todd Neale, and John Gever.

MedPage Today, November 26, 2010

Doctors have always provided treatments that did not have a track record in randomized, controlled trials. Often they've provided such treatments without any serious intent of obtaining scientific validation.

Rather, they were usually convinced that the treatments would work, or at least that their errors would eventually lead them to discover a real therapy.

It has also been the case that these doctors have been treated with disdain, even persecuted by the medical establishment.

Many of them retreated to the shadows, continuing to practice their brand of medicine but with a low profile. Others proudly soldiered on in what they believed to be a noble, though lonely, cause.

Now, however, they organize. Case in Point: 'Chronic Lyme disease'

The "Lyme Wars" have raged almost since the disease was first described in 1977 as a cluster of unexplained cases of arthritis among children in Lyme, a small town in Connecticut.

On one side are infectious disease experts, who have determined that Lyme disease is a straightforward infectious disease, caused by a specific spirochete and characterized by a defined constellation of symptoms ranging from a rash and arthritis to neurologic and cardiac manifestations. Treatment, according to those on this side of the argument, is based on a limited (usually less than 30 days) course of antibiotics.

On the other side are a group of physicians and patients who believe that Lyme disease can persist for years, even decades, causing pain, fatigue, and other symptoms -- even in the absence of hard evidence that they were ever infected with the Lyme parasite.

The patients are eager for treatments to relieve their misery, and the physicians are willing to provide it, often taking the form of antibiotic regimens that last for months. But this latter group has failed to gain acceptance from mainstream medical authorities such as the Infectious Diseases Society of America (IDSA).

[snip]

A group of physicians who believe Lyme is more than an infection -- the International Lyme and Associated Diseases Society (ILADS) -- responded by convening a panel of its own, and in 2004 published their guidelines, criticizing IDSA.

'Chronic Lyme' Gets Organized

ILADS was formed in 1999 as a group of physicians with the stated mission of advancing the science, clinical understanding, and management of tick-borne diseases. Central to the group's philosophy is a belief that Lyme disease is more than an infection by Borrelia burgdorferi.

"We are the physicians who treat these patients day after day, year after year, sometimes for decades, and have the long-termresponsibility for them," [Robert] Bransfield, a psychiatrist in Red Bank, N.J., and president of ILADS, said.

One of the other founders of ILADS, Bernard Raxlan, MD, has a full-time practice devoted to caring for Lyme disease patients. Of the organization, he said, "I've watched it grow and seen its influence in the academic world as well, making the whole field much more readily available to the lay public."

The group has also engaged in the policy arena, working to advance legislation requiring insurance coverage for extended chronic-Lyme treatment regimens. State legislatures in Connecticut and Massachusetts have passed laws protecting physicians who prescribe long-term antibiotics for their patients.

[snip]

Other Voices Enter the Fray

Another group that voiced objection to the IDSA recommendations was the Association of American Physicians and Surgeons (AAPS). This group was founded in 1943 with the goal of fostering private, physician-patient centered medicine.

"These guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease. Medical societies do not practice medicine; physicians do," reads a statement by this group.

AAPS** goes much further in its advocacy for patient choice. Of the American Medical Association, AAPS spokesperson Jane Orient, MD, said, "AMA is very much into corporate medicine and government-dictated guidelines, which they hope to be engaged in writing -- for profit. They believe they can formulate best practices for everybody."

This creates risks for patients and physicians alike, when clinicians fear that they are being watched and could lose their licenses and worse, according to Orient.

"Those doctors have been viciously attacked, even by their own medical boards and by the societies that consider themselves the only source of expertise. Insurance companies are behind this because they don't want to pay for the treatment. Long-term antibiotics can be very expensive," she told MedPage Today.

Gary P. Wormser, MD, an infectious disease expert from New York Medical College in Valhalla, and the lead author of the original IDSA guidelines, disagrees with the long-term use of antibiotics but acknowledges frustration with the medical community.

"There are a lot of people out there with medically unexplained symptoms who are eager to find help. I don't blame them, and we have to admit that to some extent the mainstream medical community hasn't been very helpful for their chronic fatigue, joint pains, and other problems," he said.

It must be appealing for these patients when, after months or years of poor health a physician finally says, "I know what you have and I know how to treat it," Wormser said. "If I were in their shoes I might find that appealing as well," he added.

But randomized NIH-sponsored trials of patients who have had documented Borrelia infections and had persistent subjective symptoms have found no benefit to additional antibiotic treatment.

"One thing we learned from the antibiotic trials was that 36% of patients who received placebo got better, which was really remarkable," Wormser said.

So why not let patients have the antibiotic treatments they believe can help them?

"Because antibiotics aren't really all that safe when you take them long term and unnecessarily," he said, citing risks of intravenous lines, sepsis, and potentially lethal infections. On the individual level antibiotics also can interfere with the normal bacterial flora, and on the societal level the concern is the creation of more resistant bugs.

"I don't know what the remedy is," Wormser said. "If someone would come up with genuine help for these patients, they wouldn't have to turn to alternative practitioners.”

**AAPS is explicitly antiabortion (having published multiple dubious studies and editorials claiming to link abortion to breast cancer),anti-immigration, and utterly opposed to Medicare. Moreover, it routinely publishes anti-vaccination screeds, characterizing mass vaccination as a "tool of the state" and a threat to physician autonomy. Most tellingly, if you want to know the real level of "science" published in [their journal] JPANDS, know that JPANDSroutinely publishes "studies" by mercury militia anti-vaccinationistsMark and David Geier. Indeed, JPANDs is so cranky that it is prone to publishing commentaries opposing evidence-based guidelines. Not surprisingly, MEDLINE doesn't even index JPANDS. (ScienceBlogs.com)

Jones, despite being 82 years old and badly dressed, continues to pump antibiotics into kids and other people’s money into his lawyer’s pocket. The Yale Daily News article (“Dr. Charles Ray Jones continues to face legal problems over his controversial methods surrounding the treatment of Lyme disease.”) goes over old ground, but it does note at the end that only bankruptcy or death is likely to end this nonsense. But since he’s got a defense fund of Lymee money….

You have wonder where these Lyme activists get their ideas. Take the following for example:

Most of your double blind controlled trials are funded by the pharmaceutical industry.

Wonderfully wrong. Click on ClinicalTrials.Gov and you’ll find plenty of information about completed and active trials related to Lyme disease (and many other infections and illnesses).

“ClinicalTrials.gov offers up-to-date information for locating federally and privately supported clinical trials for a wide range of diseases and conditions. A clinical trial (also clinical research) is a research study in human volunteers to answer specific health questions. Interventional trials determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments. Observational trials address health issues in large groups of people or populations in natural settings. ClinicalTrials.gov currently contains 105,330 trials sponsored by the National Institutes of Health, other federal agencies, and private industry. Studies listed in the database are conducted in all 50 States and in 174 countries ClinicalTrials.gov receives over 50 million page views per month 65,000 visitors daily.”

An then there were the four well-known treatment trials funded by the National Institutes of Health. On the other hand, I can’t think of any pharmaceutical houses or biotech companies that ever funded any treatment trials for Lyme disease.

Yet the deluded activists continue:

This means that if your disease is not on their radar, you’re going to have a long hard slog getting funding for studies on the efficacy of different treatments. Diseases that are on the agenda of big Pharma have a distinct advantage in evidence based medicine because studies, typically large scale studies, have been funded by someone with a dog in the hunt. In other diseases, the dog in the hunt may be overzealous, promoting treatments and selling drugs with little proof of effectively. But when a disease is neglected by big Pharma, the opposite occurs. Research simply isn’t done.

So Big Pharma’s involvement is bad, and when Big Pharma is not involved, it’s also bad. (I guess that explains why the activists hated having Big Pharma involved in some vaccine trials back in the 1990’s.) Good thing there’s all that federal funding to universities, hospitals and private foundations, not to mention foreign funds, as listed in ClinicalTrials.Gov.

Recently, GlobalDate releases a report that explains why Lyme disease is neglected and is likely to remain neglected by big Pharma. From the press report on the lack of pharmaceutical interest in Lyme disease:

GlobalData has estimated that the Lyme disease therapeutics market was worth $2.2m in 2009. The major reason for this limited market revenue is that there is no approved drug specifically for Lyme disease treatment. Antibiotics such as doxycycline, cefuroxime and amoxicillin are currently prescribed. The patent protection of all these antibiotics expired long ago and many generic versions of the antibiotics are available very cheaply. In 2009, the annual cost of therapy for Lyme disease with antibiotics was $81. Overall, between 2009 and 2017, the Lyme disease therapeutics market is expected to grow at a CAGR of only 4.8% to reach $3.2m by 2017.

Exactly. There’s no market because there’s no mystery. Lyme disease is a common bacterial infection that readily responses to generic antibiotics. Why invest more money in something that is well-known and easily treated? It’s not a conspiracy; it’s basic marketing. It’s not a conspiracy; it’s evidence-based medicine.

The following is a very imperfect translation from the Polish, but the basic idea—Internet disinformation about Lyme disease and the chief purveyor of that disinformation—comes across loud and clear. Interesting that the paper was published in a journal of psychiatry.

Psychiatr Pol. 2010 Nov-Dec;44(6):895-904.

Growing boreliosis anxiety and its reasons.

Rorat M, Kuchar E, Szenborn L, Małyszczak K.

At the beginning of the 21st century, the Internet became one of the most important sources of information. Medicine and health are the main topics of discussion on numerous forums and portals. Authors of the following article took the trouble to investigate Polish forums concerning Lyme disease.

A typical Google search of the Polish Internet reveals 77 forums with boreliosis threads. The largest (ca. 700 threads) and mostly quoted …of all the forums is entitled 'borelioza' and it is hosted by gazeta.pl. It was founded and it is still run by the Boreliosis Patients Association.

The Association disseminates ideas of ILADS, which presents boreliosis as a chronic, serious disease and also supports diagnostic and treating recommendations, contradictory to the standards of renowned medical authorities.

People searching the Internet for information on boreliosis are very likely to come across the webpages referring to the forum of the Association. As a result, they might encounter faulty recommendations of ILADS.

Members of the Association induce one another with hypochondriac fantasies of a disease, sometimes exceeding the limits of a delusion. The Association promotes faulty convictions about the internal "enemy"--boreliosis, incompetent and unfeeling doctors protecting it, and proposes to unite in common defence. Such actions [encourage] somatization-prone patients to undertake activities destructive to their health. It also leads to irrational social behaviour, which can be described as induced hypochondria.

CONCLUSION: The Internet has become a source of much unreliable information on boreliosis, which may potentially pose a serious threat to patients' health. While counselling patients who associate their chronic symptoms with boreliosis, physicians should not forget the possibility of induced anxiety disorder, hypochondria, or a general distrust of doctors….

Here’s some more on the traveling circus of chronic Lyme complaints being conducted by the fundamentalist and home-schooling lawyer, Mike Farris, whose own family is allegedly suffering from chronic Lyme and being treated by a well-known Lyme quack.

Farris, who doesn’t believe in science or evidence-based medicine, has conducted five hearings in Virginia (one more to go) in which anecdotes about the impact of Lyme disease (or likely some other illness) are presented as common and factual. The tearful presenters surely have, or had, some serious illnesses and many suffer the permanent damage of those illnesses, but there is simply no evidence to suggest they are all suffering from a permanent, untreatable bacterial infection.

As suggested by comments at the end of this piece, the purpose of this Virginia trail of tears seems to be to create legislation that will: 1) enshrine quackery, 2) protect quacks, and 3) shift the financial burden of that quackery to insurance companies and their subscribers. It’s an interesting twist on the usual pro-business Republican stance of protecting big businesses against individuals. But Farris has faith, and an obsession, and both can frequently override politics…and even common sense.

Lyme Disease: Epidemic ‘Largely Ignored’

Governor’s Task Force on Lyme disease hears stories of loss, pain and frustration.

By Victoria Ross

Thursday, March 31, 2011

Tricia Platas, a Springfield mother of four, sat in front of Gov. Bob McDonnell’s Lyme Disease Task Force on Tuesday, March 24, clenched her hands together, and testified about losing her 9-year-old daughter, Amber Marie, to Lyme disease.

[snip]

Platas was one of 25 area patients and caregivers who testified about their experiences with Lyme disease at Immanuel Bible Church in Springfield. They shared stories of pain, fear and fatigue with the eight-member panel of health department officials and legislators’ representatives. It was the fifth public testimony hearing about the spread of Lyme disease in the Commonwealth.

Led by Michael Farris, chancellor of Patrick Henry College in Purcellville, the task force will propose recommendations to the governor after its final hearing April 25. Farris’ wife and seven of his 10 children have been diagnosed with Lyme disease. The task force is comprised of physicians, wildlife officials, veterinarians and other experts.

[snip]

“We’re here tonight to listen to people’s stories, hear their recommendations and advocate for more public awareness and education,” Farris said. A well-known constitutional lawyer, Farris is the founder of the Home School Legal Defense Association (HSDLA) and Patrick Henry College, a Christian liberal arts college that is aimed at home-schooled students.

“Lyme disease is dramatically misdiagnosed, and there is too muchdenial by doctors that chronic Lyme does not exist,” Farris said.

“These heartrending cases of misdiagnosis, financial ruin, and social isolation are difficult to hear as we travel throughout Virginia,” Farris said. “But it is important to gather first-hand testimonies about the personal impact of long-term illness. One of our most important goals is to allow people to be heard.”

The final Task Force hearing on the educational needs in Lyme and tick-borne disease will be Monday, April 25, at 1 p.m. in Fairfax.

“I was so moved by all the stories given at the meeting that night,” Platas said in an interview after the three-hour hearing. “It saddens me to see how many people are still being made sick by this horrible little bug.

Supervisor Pat Herrity (R-Springfield) attended the hearing, and has listed Lyme Disease Awareness as one of his priorities.

In 2009, Herrity, along with Supervisor Michael Frey (R-Sully), conducted a town hall symposium on Lyme disease at Centreville High School. He said he became concerned about the prevalence of the disease after hearing from many of his constituents afflicted with the disease.

“We have an epidemic that we’re largely ignoring,” he said, adding that he hopes the panel considers that one of their recommendations should be to pass legislation similar to that enacted in Connecticut, where doctors are allowed to prescribe extended doses of antibiotics without fear of malpractice lawsuits.

According to “The Connecticut Post,” passage of the bill in May 2009, which allows physicians to diagnose chronic Lyme disease, and treat it with long-term antibiotics was one of the “cornerstone moments of Lyme disease politics over the last decade.”

Similar bills have been introduced in Rhode Island Pennsylvania, Massachusetts, New York and Maryland that would compel insurance companies to pay for antibiotic treatment for chronic Lyme disease CLD.

[snip]

Earlier this month Lyme activists and patients gathered in California to listen to one of their most (in)famous “Lyme Literate” doctors, Joe “It’s a conspiracy” Burrascano, hold forth on Lyme disease and other infectious agents. I’m not sure which is more incredible: the fact that this guy once held a license to practice medicine, or that people could sit through his nonsensical lecture without throwing chairs at him. Maybe the former since no one ever went broke underestimating the intelligence or overestimating the gullibility of the average American. Someone in the audience faithfully recorded the “highlights” from Joe’s rampage through basic bacteriology and pharmacology, and I’ve included some of her notes below. Have a shot of Jameson and read on.

Burrascano’s definition of Lyme Disease: “Lyme disease is the illness that results from the bite of an infected deer tick; it’s not one germ.”

[So out with Borrelia burgdorferi as the etiologic agent of Lyme?]

Stages of Lyme: -for one or more years – immune system breakdown and its consequences, -co-infections become important, -serologic tests less reliable, -treatment must be more aggressive and of longer duration. The sicker you are, the less reliable the tests; lyme burrows deeper and is no longer easily detected in blood.

CD-57 test – the one test that shows how long Lyme has been present.

Dr. Burrascano says he has never seen a patient without co-infections.

[More likely, he’s never seen one without cash.]

Sorting Out Co-Infections

Lyme – Gradual onset, no sweats, 4 week cycles, multisystem, afternoon fevers. It is important to take your temperature several times a day (record in journal).

Babesia – Cycles every few days, makes everything worse.

Ehrlichia – Sharp headaches behind eyes, low WBC, elevated liver function.

Mycoplasma – Made worse with exercise, aka “Chronic Fatigue Germ”, major fatigue, neurological disfunction, found in the sickest and poorest responding; have the worst CD-57 tests.

Why Igenex? Dr. B has no affiliation with them, no professional relationship with them, etc…

If a test is commercialized to be sold as a test kit, it must follow narrow CDC restrictions and guidelines. (Ironically, these restrictions were a result of the Lyme vaccine debacle.) Most Lyme tests are commercial. Commercial Lyme tests miss 75% of cases. Based on double-blind government proficiency tests, IGenex* did well.

[Reference? No? Of course not. So commercial tests follow the CDC guidelines. Most Lyme tests are commercial. Therefore, commercial Lyme test miss 75% of cases. I guess this is some kind of Burrascano syllogism, but I fail to follow the logic of it. Still, for Lymees, Igenex remains the Mecca of Lyme testing, and Joe remains one of the imams of chronic Lyme.]

Why Are Chronic Lyme Patients So Sick? [Because they’re treated by quacks?]

-High spirochete load (perhaps multiple bites)

-Protective niches in the body and biofilms allow Bb to evade the immune system and antibiotics

-Immune suppression and immune evasion

Biofilms are a protective layer: Lyme germs live in different forms: Spirochete – surrounded by a cell wall, Spiroplast – balls up, has no cell wall, Cystic form – has hard outer shell, Lyme germs can live *inside* a human cell, inside the vacule. [No, B. burgdorferi doesn’t do any of this stuff.]

Pharmacology

-Antibiotics – you must have extra-cellular and intra-cellular meds as Bb can live in and out of cells. Spirochete forms: Penicillins, Cephalosporins, Primaxin, Vancomycin. Spiroplast/L form: no cell wall Tetracyclines, Erythromycin. Cyst: Metronidazole, Tinidazole, Rifampin.

Indications For Intravenous Therapy: illness for more than one year, prior use of steroids, documented immune deficiency, abnormal spinal fluid, synovitis with high ESR, age over 60, failure or intolerance of oral therapy. Intravenous: Clarithromycin + Telithromycin, Vancomycin + Clarithromycin.

Rate of recovery dependent on germ; stronger drug will not speed recovery. Find a regimen that works and stick with it. Change when you’ve reached a plateau. Treatments: at least 4-6 weeks before changes.

Aggressive supportive therapy also necessary: Sleep cycle, Food, Supplements, Detoxing.

Progressively increase exercise program. Exercise is vital and required. Not exercising will increase risk of relapse.

[But doesn’t exercise make mycoplasma worse as noted earlier?]

Prognosis -May not cure infections, may need open-ended maintenance therapy [also known as open-ended cash flow.]

What to Watch For: Signs of persistence; continued fevers, Four week cycles of ailments, Migrating symptoms, Positive PCR or urine LDA. If you have not relapsed in 3 years, you never will.

Bartonella. The Bartonella co-infection with Lyme seems to be clinically different that “cat scratch”. Instead, they are Bartonella-like organisms; more prevelent that Borrelia in some ticks.

Piroplasms – Babesia. Is a parasite. [Takes one to known one.]

Mycoplasms: “Chronic fatigue” germ, Ubiquitious in environment (in dust, for example), Treatment is difficult.

Worms: New species of nematodes in 63 – 75% of patients from Massachusetts. Fatigue

Lives in lungs mainly.

[I can’t begin to imagine what this is all about. Nematodes?? This has something to do with a tick-borne borreliosis? Is Joe self-medicating?]

Methylation Cycle: Key component of metabolism, Need to bring up methylation cycle, This cycle can be blocked when chronically ill, 75% of Lyme patients responded better after treating. [Honestly, I have absolutely no idea what he’s talking about here. DNA methylation, maybe? Methanol? Methyl groups?]

Bornavirus: Autism-related? Distant cousin to Rabies and distemper. Brain is the site of infection. Does not damage nerve cells but blocks cell function. Brain fog, fatigue leads to depression. Treatment: Antiviral Amantading, 65 – 70% success rate.

XMRV: Xenotropic Murine Leukemia Virus, Virus – is gamaretrovirus, 1stisolated in prostate cancer, 68 out of 101 CFIDS samples contained XMRV, XMRV is found on only 3% of healthy samples. XMRV is also found present in cases of: MS, ALS, Parkinsons, Autism, Fibromyalgia

Lyme patients who did not recover: 1005 of them had XMRV. Treatment – consider adding antivirals AZT, tenofovir, raltegravir.

Basic Advice: NO steroids or other immune suppressives! No smoking at all. No alcohol (makes germs stronger, weakens immune system), Clean diet: low carb, low glycemic index, high quality proteins, Maintain hydration (Lyme patients become dehydrated quickly, sense of thirst is altered), May need mineral supplements.

[Alcohol makes germs stronger! Well, there must be some really tough bugs in Ireland and Russia. On the other hand, I.D. docs in Saudi Arabia probably don’t even need to use antibiotics with their patients.]

ENFORCED REST: You are NOT allowed to get tired, Take a break before afternoon lag,

Work and school – Go in later, leave earlier, take a midday break, take Wednesdays off, Rest on days off, No caffeine, no stimulants, Home should be quiet, comfortable, non-toxic, Nap if needed!! If you need to sleep late, do it!!

[Why Wednesdays?]

Exercise Program: Body sculpting, Gentle with free weights, exercising all muscles; very light or no weights, NO AEROBICS, Each body sculpting session 45 min; 60 minutes preferred, Begin with good progressive warm-up, Take a hot shower or bath afterward and go to bed. Lie quietly if you cannot sleep. Never exercise daily, Total rest on off days, As strength improves, increase weight and resistance but maintain high number of repetitions, As stamina improves, exercise more, but NEVER daily.

[Maybe Joe has found a second career as a personal fitness trainer at some NY gym.]

[Wow. It’s an incredible mix of medical nonsense and sheer bad advice from a guy who graduated from a real medical school. In the U.S., however, one need only get decent grades on five undergraduate science courses and score well on a national multiple-choice exam to get into a school. Once in, med school deans generally are reluctant to flunk people out because of the lost tuition and the potential damage to a school’s reputation from a high attrition rate. Still, Joe must have tempted them on more than one occasion.]

*”IGeneX, the manufacturer of the [urine antigen] test, claims a 3% false-positive rate and a 95% ability to distinguish between a positive and negative population with an antigen cut-off level of >32 ng/mL. Our results do not support these claims and indicate that this test should not be used for the laboratory diagnosis of active or suspected Lyme disease.” (Intralaboratory Reliability of Serologic and Urine Testing for Lyme Disease, Klempner MS, et al. Am. J. Med. 2001;10:217-19.)