The challenge of Lyme disease: tired of the Lyme wars

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
Post Reply
Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

The challenge of Lyme disease: tired of the Lyme wars

Post by Martian » Wed 13 Apr 2011 15:49

The following article is a response to Tired of Lyme borreliosis - Lyme borreliosis in the Netherlands


Free full text article: http://www.njmonline.nl/getpdf.php?id=10000692 [PDF-alert]
Neth J Med. 2011 Mar;69(3):98-100.

The challenge of Lyme disease: tired of the Lyme wars.

Kullberg BJ, Berende A, van der Meer JW.

Department of Medicine, Radboud University Nijmegen Medical Centre; and Nijmegen Institute for Infection, Inflammation, and Immunity (N4i), the Netherlands.
Introduction from the article:
Few diseases have aroused more emotional attention in the press and the public than Lyme disease. Discussions have not only focused on the increasing incidence1 or the choice of appropriate treatment, but also on perceived inadequacy of serological testing and whether or not persisting fatigue, cognitive dysfunction and musculoskeletal pain are ‘real disease’ and related to persistent infection. Large numbers of patients with such symptoms attributed to Lyme disease seek medical opinions, but no consensus on approach or treatment exists.

In this issue of the Journal, Coumou et al. provide a review on several aspects of Lyme disease. This review is extremely helpful for understanding the epidemiology and immunopathogenesis of the disease. Does it also provide a framework for the Dutch physician confronted with a patient with putative Lyme borreliosis, as the authors state? Probably not, since this publication precedes and potentially contradicts the revised national CBO Treatment Guidelines for Lyme Disease, which will be published later this year.

The CBO guidelines, initially released in 2004, have been subject of much debate. Whereas the guideline recommendations on prevention and treatment of early Lyme disease – the easy part – have been generally accepted, the lack of recommendations for the approach to patients with persistent symptoms after standard treatment of short duration has been criticised. The difficult diagnosis and paucity of studies of sufficient quality on this subject have prompted the 2004 CBO Guidelines Committee to refrain from addressing this subject in depth.

In contrast, in the pending 2011 revision of the guidelines, recommendations may be expected on the approach to the patient with chronic fatigue and other persistent symptoms attributed to Lyme disease, including algorithms on possible persistence and empirical or second-line therapy. Therefore, the views by Coumou et al. in the present issue of the Journal cannot be viewed as a therapeutic guide replacing the revised 2011 CBO guidelines, which were developed according to the recommendations for evidence-based development of guidelines by a multidisciplinary committee, including the National Society for Lyme Patients (NVLP).

edit: updated link to full text; was zuidencomm.nl/njm/getpdf.php?id=10000692, but that one doesn't work anymore.
Last edited by Martian on Tue 15 Nov 2011 16:57, edited 1 time in total.

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by Martian » Wed 13 Apr 2011 18:34

Snippet from the article about studies on long-term treatment:
Whether long-term treatment may be helpful for patients with unexplained symptoms after standard therapy for Lyme disease is currently unknown. The randomised studies that have been performed have been of questionable quality and were heavily underpowered to detect potential effects.

Several trials were prematurely discontinued due to slow recruitment and were only partially published: e.g., the publication by Klempner et al. did not report the primary endpoint of success in the intent-to-treat population, but just reported results in evaluable subgroups as small as 22 to 35 patients. Thus, whereas these studies did not reveal statistically significant differences between treatment groups, they cannot serve to rule out an effect of antibiotic therapy, due to their lack of power and failure to report the predefined endpoints.

Indeed, other studies of variable quality have suggested positive outcomes on some endpoints, such as persistent fatigue, cognitive functioning or treatment failures in specific subgroups of patients with putative persistent infection, although these results were generally disappointing, and cannot be generalised.

Thus, there is a need for well-designed studies on this subject, rather than misusing outcomes of underpowered trials of disputed quality to either defend or deny the possible effect of antimicrobial therapy. A large randomised study to address this issue is currently being performed in the Netherlands.
Note: the study mentioned in the last line is: Persistent Lyme Empiric Antibiotic Study Europe (PLEASE). The principal investigator of that study is Bart-Jan Kullberg, who is also one of the authors of this article.

MedStudentIU
Posts: 9
Joined: Thu 19 May 2011 22:52

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by MedStudentIU » Thu 19 May 2011 23:24

I am particularly interested in the slow recruitment. It seems as if Lyme patients are a bit weary of experimentation, yes? I am very used to seeing people flock to these kinds of opportunities...

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by Martian » Fri 20 May 2011 15:22

MedStudentIU wrote:I am particularly interested in the slow recruitment. It seems as if Lyme patients are a bit weary of experimentation, yes? I am very used to seeing people flock to these kinds of opportunities...
Maybe it has to do with the inclusion criteria. I think there are many patients with a possible Lyme diagnosis (although many of the patients and their docs might be convinced of Lyme), but not many of whom the diagnosis is quite certain. I guess they want only the latter in most studies, so while many patients might flock to the opportunity, many patients will simply not meet the inclusion criteria.

NellyP
Posts: 43
Joined: Mon 29 Oct 2007 18:22

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by NellyP » Wed 12 Oct 2011 18:45

I just read the article by BJ Kullberg in which he mentions articles by Coumou and also the upcoming revised Dutch Guidelines.

Does anybody (Martian?) have info on either?

I really liked what Kullberg was saying, he seemed to think the revised guidelines are going to take patients with persisting symptoms into account, or did I misinterpreted what he was saying?

Nelly (in France)

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by Martian » Wed 26 Oct 2011 16:53

NellyP wrote:I just read the article by BJ Kullberg in which he mentions articles by Coumou and also the upcoming revised Dutch Guidelines.

Does anybody (Martian?) have info on either?

I really liked what Kullberg was saying, he seemed to think the revised guidelines are going to take patients with persisting symptoms into account, or did I misinterpreted what he was saying?
1. Coumou: as I wrote in the opening post, the article of Kullberg is a response to Tired of Lyme borreliosis - Lyme borreliosis in the Netherlands, which is written by Coumou et al..

2. revision of the Dutch Lyme guidelines: the revised Dutch Lyme disease guidelines will probably be published in 2012. I think Kullberg is involved with the multidisciplinary committee that contributed to the development of the new guidelines. So he knows what kind of changes one can expect.

It appears that the revised guidelines are indeed going to take patients with persisting symptoms into account, because he says "recommendations may be expected on the approach to the patient with chronic fatigue and other persistent symptoms attributed to Lyme disease, including algorithms on possible persistence and empirical or second-line therapy.". The old guidelines were lacking this.

However, I don't think one should expect anything that comes close to the one-sided ILADS approach, but much more balanced recommendations. After all, they are supposed to be evidence-based guidelines.

ChuckG
Posts: 99
Joined: Thu 17 Mar 2011 23:45
Location: Berkeley

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by ChuckG » Thu 26 Jan 2012 2:02

This appears to be a rebuttal of Kullberg

http://www.ncbi.nlm.nih.gov/pubmed/22271807

Neth J Med. 2012 Jan;70(1):3-5.
Lyme borreliosis: the challenge of accuracy.
Klempner MS, Halperin JJ, Baker PJ, Shapiro ED, O'Connell S, Fingerle V, Wormser GP.
Source
Department of Medicine, Boston University School of Medicine, Boston, USA.

Abstract
No abstract available.

PMID: 22271807

Here is the 3 page pdf link:

http://www.njmonline.nl/getpdf.php?id=10000790

Martian
Posts: 1944
Joined: Thu 26 Jul 2007 18:29
Location: Friesland, the Netherlands

Re: The challenge of Lyme disease: tired of the Lyme wars

Post by Martian » Tue 11 Mar 2014 17:28

ChuckG wrote:This appears to be a rebuttal of Kullberg
Here is a comment on both Kullberg et al. and Klempner et al.:

http://www.ncbi.nlm.nih.gov/pubmed/22516583
Neth J Med. 2012 Apr;70(3):154.

Lyme disease--the challenge for patients.

Huyshe-Shires SR, Pearson S.

Comment on: The challenge of Lyme disease: tired of the Lyme wars. [Neth J Med. 2011]

PMID: 22516583 [PubMed - indexed for MEDLINE]
Here is the 1 page pdf link:

http://www.njmonline.nl/getpdf.php?id=10000826

Post Reply