Thanks to all for the good information.
I said I'd look into EUCALB, and what I'm finding is interesting. It looks as if in 2000, many European experts, including those in EUCALB, were working together to formulate rules to interpret European Western blots (along with other aspects of European Lyme disease).
J Clin Microbiol. 2000 Jun;38(6):2097-102.
A European multicenter study of immunoblotting in serodiagnosis of lyme borreliosis.
Robertson J, Guy E, Andrews N, Wilske B, Anda P, Granström M, Hauser U, Moosmann Y, Sambri V, Schellekens J, Stanek G, Gray J.
Public Health Laboratory, Southampton General Hospital, Southampton, United Kingdom.
A European multicenter study of immunoblotting for the serodiagnosis of Lyme borreliosis showed considerable variation in results obtained from tests with a panel of 227 serum samples. Six laboratories used different immunoblot methods, and a wide range of bands was detected in all the assays. Multivariable logistic regression analysis of data from individual laboratories was used to determine the most discriminatory bands for reliable detection of antibodies to Borrelia burgdorferi sensu lato. These bands were used to construct individual interpretation rules for the immunoblots used in the six laboratories. Further analysis identified a subset of eight bands, which were important in all the laboratories, although with variations in significance. Possible European rules, all closely related, were formulated from these bands, although there was no single rule that gave high levels of sensitivity and specificity for all the laboratories. This is a reflection of the wide range of methodologies used, especially the use of different species and strains of B. burgdorferi sensu lato. The panel of European rules provides a framework for immunoblot interpretation which may be adapted in relation to the characteristics of Lyme borreliosis in local areas.
PMID: 10834959 [PubMed - indexed for MEDLINE] PMCID: PMC86736 Free PMC Article
But by 2006 many of these authors had adopted IDSA guidelines: Gerold Stanek and Franc Strle were authors of the 2006 IDSA guidelines, and now the EUCALB guidelines copy IDSA, with a few nods to the often-cited difference in the relative proportions of arthritic, neurologic, and cutaneous sequelae, between the US and Europe.
What happened? This is a history-and-politics question, not a scientific one. The European disease didn't change, during that period. Only the academic view of it did. One possible way to find out why is to read through the history of the EUCALB members' publications and collaborations. So I will follow that line of investigation, but it will take a while. We need a European Pamela Weintraub to make an exhaustive journalistic study of the situation, but until then we'll have to settle for hints and clues.
Meanwhile, here are some details about the current EUCALB view:
http://meduni09.edis.at/eucalb/cms_15/i ... 4862e4f30b
Notice that EUCALB considers it "essential" that suspected neurological Lyme patients be subjected to spinal tap (=CSF fluid sample), and that the findings be abnormal (white blood cells and antiBb antibodies high in CSF), in order to diagnose neurological disease.
But the DBG says that abnormal findings in CSF are unlikely, except in acute Lyme meningitis. In late neurological disease, the CSF will likely seem normal. ILADS also says this. There are numerous publications supporting this view.
The US mainstream (IDSA) has also largely given up looking for late neurological Lyme disease with abnormal CSF, by saying that late NLB is so rare in the US that it's not worth looking for it.
Who is EUCALB?
Gerold Stanek (IDSA 2006 guidelines author)
Editor: Jeremy Gray
19 academics, including 2 IDSA 2006 guidelines authors
Clin Microbiol Infect. 2011 Jan;17(1):69-79. doi: 10.1111/j.1469-0691.2010.03175.x.
Lyme borreliosis: clinical case definitions for diagnosis and management in Europe.
Stanek G, Fingerle V, Hunfeld KP, Jaulhac B, Kaiser R, Krause A, Kristoferitsch W, O'Connell S, Ornstein K, Strle F, Gray J.
[note from Lorima: all authors are members of EUCALB advisory board]
Medical University of Vienna, Department of Hygiene and Applied Immunology, Vienna, Austria. firstname.lastname@example.org
Lyme borreliosis, caused by spirochaetes of the Borrelia burgdorferi genospecies complex, is the most commonly reported tick-borne infection in Europe and North America. The non-specific nature of many of its clinical manifestations presents a diagnostic challenge and concise case definitions are essential for its satisfactory management
. Lyme borreliosis is very similar in Europe and North America but the greater variety of genospecies in Europe leads to some important differences in clinical presentation. These new case definitions for European Lyme borreliosis emphasise recognition of clinical manifestations supported by relevant laboratory criteria
and may be used in a clinical setting and also for epidemiological investigations.
© 2010 The Authors. Journal Compilation © 2010 European Society of Clinical Microbiology and Infectious Diseases.
PMID: 20132258 [PubMed - indexed for MEDLINE]
(1) these case definitions are the EUCALB definitions, posted in this message, above.
(2)As in the US, there is no distinction made between surveillance (i.e. epidemiology) and diagnostic case definitions.
Lancet. 2012 Feb 4;379(9814):461-73. Epub 2011 Sep 6.
Stanek G, Wormser GP, Gray J, Strle F.
Medical University of Vienna, Institute for Hygiene and Applied Immunology, Vienna, Austria. email@example.com
Lyme borreliosis (Lyme disease) is caused by spirochaetes of the Borrelia burgdorferi sensu lato species complex, which are transmitted by ticks. The most common clinical manifestation is erythema migrans, which eventually resolves, even without antibiotic treatment. However, the infecting pathogen can spread to other tissues and organs, causing more severe manifestations that can involve a patient's skin, nervous system, joints, or heart. The incidence of this disease is increasing in many countries. Laboratory evidence of infection, mainly serology, is essential for diagnosis, except in the case of typical erythema migrans.
Diagnosed cases are usually treated with antibiotics for 2-4 weeks and most patients make an uneventful recovery. No convincing evidence exists to support the use of antibiotics for longer than 4 weeks, or for the persistence of spirochaetes in adequately treated patients.
Prevention is mainly accomplished by protecting against tick bites. There is no vaccine available for human beings.
Copyright © 2012 Elsevier Ltd. All rights reserved.
PMID: 21903253 [PubMed - indexed for MEDLINE]
Testing in Germany evaluated 2012:
http://www.ncbi.nlm.nih.gov/pmc/article ... 595427.pdf
Clin Dev Immunol. 2012;2012:595427. Epub 2011 Dec 27.
Evaluating frequency, diagnostic quality, and cost of Lyme borreliosis testing in Germany: a retrospective model analysis.
Müller I, Freitag MH, Poggensee G, Scharnetzky E, Straube E, Schoerner Ch, Hlobil H, Hagedorn HJ, Stanek G
, Schubert-Unkmeir A, Norris DE, Gensichen J, Hunfeld KP
Bacteriologic Infection Serology Study Group of Germany (BISSGG), Central Laboratory, Institute for Laboratory Medicine, Northwest Medical Centre, Academic Teaching Hospital, Medical Faculty, Johann Wolfgang Goethe-University, Steinbacher Hohl 2-26, 60488 Frankfurt am Main, Germany.
Data on the economic impact of Lyme borreliosis (LB) on European health care systems is scarce. This project focused on the epidemiology and costs for laboratory testing in LB patients in Germany.
MATERIALS AND METHODS:
We performed a sentinel analysis of epidemiological and medicoeconomic data for 2007 and 2008. Data was provided by a German statutory health insurance (DAK) company covering approx. 6.04 million members. In addition, the quality of diagnostic testing for LB in Germany was studied.
In 2007 and 2008, the incident diagnosis LB was coded on average for 15,742 out of 6.04 million insured members (0.26%). 20,986 EIAs and 12,558 immunoblots were ordered annually for these patients. For all insured members in the outpatient sector, a total of 174,820 EIAs and 52,280 immunoblots were reimbursed annually to health care providers (cost: 2,600,850€). For Germany, the overall expected cost is estimated at 51,215,105€. However, proficiency testing data questioned test quality and standardization of diagnostic assays used.
Findings from this study suggest ongoing issues related to care for LB and may help to improve future LB disease management.
PMID: 22242037 [PubMed - indexed for MEDLINE] PMCID: PMC3254124 Free PMC Article
Tests employed were those used routinely for the serodiagnosis of LB
in the participating laboratories. Figure 1 gives an overview on the frequency of the various test systems used by the participants during the surveys. The laboratories most frequently performed a two-tier protocol
, beginning with a sensitive EIA or CLIA screening (mean: N = 312 (81.9%), SD = 6.9) followed by immunoblot or line blot confirmation of the results (mean: N = 282 (74.0%), SD = 9), in compliance with the current recommendations of the CDC and most European scientific expert opinions [13, 21, 22]
. On average, for direct immunoglobulin class-specific analysis of samples, IgG- and/or IgM-EIA were used by 259 (SD = 6) and 298 (SD = 9) of the participants, respectively, during the six surveys. An immunoblot confirmatory assay for IgG- and/or IgM- antibodies was performed by 239 (SD = 6) and 238 (SD: N = 7) of the laboratories, respectively.
To improve the value of LB serology in the routine microbiological laboratory, promotion of better interassay standardisation of the commercially available test kits is necessary
[13, 35, 42] by implementing standards and procedures as suggested earlier by the Centers for Disease Control and Prevention (CDC) and the Association of State and Territorial Public Health Laboratory Directors (ASTPHLD) conference on the serological diagnosis of LB
. [Note from Lorima: this is the infamous 1994 Dearborn conference where the CDC officially adopted Dressler/Steere's 1993 5 band criteria] Most importantly, more detailed and independent clinical evaluation of assays should be legally required before placing such products on the market .[/color]
In other words, this German group wants even more compliance with the CDC's [=Steere/Dressler] 1994-95 criteria than there is now, even though it sounds as if the two-tier test dominates the system already, and the disease definitions updated in 2011 say testing is "essential" for diagnosis of non-EM Lyme, in parallel with the IDSA guidelines.
In summary, it seems likely that EUCALB is the primary importer of IDSA/CDC diagnostic standards into Europe. And, no help for European Lyme patients can be expected from EUCALB.