A Critical Appraisal of “Chronic Lyme Disease”

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
Martian
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A Critical Appraisal of “Chronic Lyme Disease”

Post by Martian » Tue 9 Oct 2007 16:45

N Engl J Med. 2007 Oct 4;357(14):1422-30.

A critical appraisal of "chronic Lyme disease".
Feder HM Jr, Johnson BJ, O'Connell S, Shapiro ED, Steere AC, Wormser GP; Ad Hoc International Lyme Disease Group.
Department of Family Medicine and Pediatrics, Connecticut Children's Medical Center, Hartford, CT, USA. hfeder@nso2.uchc.edu
PMID: 17914043 [PubMed - in process]

Free full text: http://content.nejm.org/cgi/content/full/357/14/1422

Quote from the full text:
Conclusions

Chronic Lyme disease is the latest in a series of syndromes that have been postulated in an attempt to attribute medically unexplained symptoms to particular infections. Other examples that have now lost credibility are "chronic candida syndrome" and "chronic Epstein–Barr virus infection." The assumption that chronic, subjective symptoms are caused by persistent infection with B. burgdorferi is not supported by carefully conducted laboratory studies or by controlled treatment trials. Chronic Lyme disease, which is equated with chronic B. burgdorferi infection, is a misnomer, and the use of prolonged, dangerous, and expensive antibiotic treatments for it is not warranted.

cave76
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by cave76 » Wed 10 Oct 2007 1:06

The NEJM and other media articles were put out at more or less the same time---- and collectively dealt a blow to those who have chronic or late Lyme; most of us simply because we couldn't get the dx or tx we needed soon enough to make a difference.

Here is the article that Dr. Stricker et al. wrote just after they appeared:

http://news.yahoo.com/s/prweb/20071003/ ... eb558547_3

ILADS Members Question Motives of New England Journal of Medicine Article on Lyme Disease Treatment -- Article in New England Journal of Medicine Fail Wed Oct 3, 5:28 PM ET

International Lyme and Associated Diseases Society (ILADS) criticizes just-published article in the New England Journal of Mediicine. Article concludes Chronic Lyme Disease a misnomer, despite significant real-world evidence proving otherwise.

Bethesda, MD (PRWEB) October 3, 2007 -- Members of the International Lyme and Associated Diseases Society (ILADS) voiced skepticism regarding the conclusions of a newly published article in The New England Journal of Medicine entitled "A Critical Appraisal of Chronic Lyme Disease".

The article, written by a committee of researchers, erroneously concludes that chronic Lyme disease is a "misnomer", citing lack of scientific evidence proving the existence of the condition. ILADS members pointed out the article does not reflect real-world patient experience with the disease.

"We have great respect for the New England Journal of Medicine," states Dr. Raphael Stricker, President of ILADS. "But we are concerned this article will continue to foster inadequate care for patients who are suffering from the longterm affects of chronic Lyme disease."

ILADS members believe the article's conclusions ignore more than 19,000 scientific studies on tick-borne diseases and reflect a huge conflict of interest. Specifically:

* The article was written by a group of researchers who have consistently voiced a narrow viewpoint on the existence of chronic Lyme disease and appropriate treatment. Eleven of the authors were members of the panel that formulated the 2006 Infectious Diseases Society of America (IDSA) Lyme guidelines. The panel is currently under investigation by the Connecticut Attorney General for exclusionary practices in formulating the IDSA guidelines.

* The authors of the article failed to disclose that they are under investigation by the Connecticut Attorney General. This omission violates the "full disclosure" policy of the journal and creates a conflict of interest by calling into question the authors' motives for writing the article.

* Several authors of the current article also participated in formulation of copycat Lyme guidelines for the American Academy of Neurology. Those guidelines were presented as "independent corroboration" of the IDSA Lyme guidelines, when in fact the same individuals were involved with both guidelines and employed the same exclusionary tactics that prompted the Connecticut Attorney General's investigation.

"It is unfortunate that this article perpetuates the narrow viewpoint on Lyme disease," added Stricker. "We believe it is in everyone's best interest to broaden the scope of the discussion within the medical community in order to better address the suffering among patients."

About ILADS:
ILADS is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

For more information contact Pam Kahl at 503.284.1534

###

International Lyme and Associated Diseases Society
Pam Kahl

***************************************

Why post this on a European Lyme site? Because it's just as important on both sides of the Atlantic. We're all in the same fix.

Martian
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by Martian » Tue 16 Oct 2007 23:40

cave76 wrote:The NEJM and other media articles were put out at more or less the same time---- and collectively dealt a blow to those who have chronic or late Lyme
According to the authors of this piece of crap article untreated or inadequately treated Lyme that lasts for years should not be called "chronic Lyme" (as it is called in the Ducth Guidelines) but "Late Lyme" instead. Then they decide "chronic Lyme" is mostly one of four categories, which are ridiculous categories, and then they say "chronic Lyme" does not exist.

Category 1: "Symptoms of unknown cause, with no evidence of Borrelia burgdorferi infection"
Categorie 2 is: "A well-defined illness unrelated to B. burgdorferi infection"

So, this is chronic Lyme disease? Oh, come on.

And what is wrong with calling "Late Lyme" chronic Lyme?

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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by LymeEnigma » Sun 28 Oct 2007 18:53

The IDSA and ILADS are constantly going out of their way to discredit one another. Anyone who reads enough literature knows that both chronic- and post-Lyme are possible....

Nick
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by Nick » Sun 28 Oct 2007 19:35

LymeEnigma wrote: Anyone who reads enough literature knows that both chronic- and post-Lyme are possible....
but in the IDSA view both are just words for something that is doubted to exist objectively at all; why all these strange, ill-defined words when it is all the same disease with usually the same disease agent present (at least if you care to check with a good test)?

Martian
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by Martian » Sun 28 Oct 2007 19:54

The following is a response from Donta about the IDSA-guidelines and chronic Lyme disease:

(Reprinted from the Journal of Clinical Diseases under fair use,
public comment exceptions)

Clinical Infectious Diseases 2007;44:1134-1135
© 2007 by the Infectious Diseases Society of America. All rights
reserved.
1058-4838/2007/4408-0023$15.00

--------------------------------------------------------------------------------
CORRESPONDENCE

Lyme Disease Guidelines-It's Time to Move Forward

Sam T. Donta

Falmouth Hospital, Falmouth, Massachusetts

Reprints or correspondence: Dr. Sam T. Donta, Falmouth Hospital,
Ter Heun Dr., Falmouth, MA 02540 (sdo...@comcast.net).

--------------------------------------------------------------------------------

TO THE EDITOR-The recommendations in the Infectious Diseases
Society of America's guidelines [1] regarding the chronic form of Lyme
disease-referred to as posttreatment Lyme disease-seem to be
encumbered by our inability to better define chronic Lyme disease
itself. We should not be debating the existence of persisting or
relapsing symptoms. There is ample evidence for their existence [2-4].
Rather, we should be moving forward, discussing the nature of the
chronic form of the illness and possible pathophysiologic mechanisms
underlying it-that is, determining whether it is a persisting
infection, whether autoimmunity is involved, and whether there are
postinfectious sequelae.


The various types and combinations of symptoms do not resemble
the typical aches and pains of daily living, but are unique in the
vast majority of patients who experience them, regardless of whether
they have received prior antibiotic treatment. The use of the term
"post-Lyme" implies that infection is no longer present; however, it
is not currently possible to determine whether infection persists.
Indeed, even in patients who have more obvious symptoms and signs of
Lyme disease that persist beyond the initial erythema migrans phase
and who have robust serologic responses to Lyme disease bacterial
proteins, it is not currently possible to isolate the bacteria. It
would appear that patients with the chronic form of Lyme disease do
not have the same robust serologic responses as patients with
oligoarthritis [5-7], perhaps indicating inadequate host responses or
bacterial factors that allow for the establishment of persisting
infection. Patients who have had known tick bites or Lyme disease-
related rashes who subsequently developed chronic symptoms of Lyme
disease were not included in the original studies of serologic
responses of patients with Lyme disease [8]. In our experience, as
well as in the experience of others, these patients have poorer and
altered immunologic responses [5-7].

Our findings, which were based on careful observations of several
thousand patients over the past 20 years, strongly support infection
as the probable cause of chronic symptoms. Antibiotic regimens
consisting of tetracycline-not doxycycline [6] or the combination of a
macrolide antibiotic and lysosomotropic agent [7]-appear to yield the
best outcomes, including apparent cures or marked, stable improvements
in >75% of patients; however, these treatments require that they be
administered for a number of months to achieve good outcomes,
depending on the duration of illness.

Our findings are also consistent with a persisting intracellular
localization of the infection. The few controlled clinical trials that
have been conducted thus far have employed different antibiotic
regimens (i.e., intravenous ceftriaxone and doxycycline [9]) and
treatments of shorter duration that have not been as effective as
tetracycline or macrolide-lysosomotropic regimens. It would be
important to validate our observations with additional controlled
trials, although measuring end points in patients who have chronic
symptoms and few, if any, objective signs is fraught with
limitations.

Until there are better, specific markers of disease activity, we
should acknowledge that there are patients who are affected by Lyme
disease to varying degrees that range from mildly symptomatic to
severely debilitating and who depend on the expertise of the members
of the Infectious Diseases Society of America for diagnosis and
treatment. In addition, we should move forward with plans to better
understand the nature of this illness and to develop better ways to
diagnose and treat the disease.

Acknowledgments

Potential conflicts of interest. S.T.D.: no conflicts

References
1. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical
assessment, treatment, and prevention of Lyme disease, human
granulocytic anaplasmosis, and babesiosis: clinical practice
guidelines by the Infectious Diseases Society of America. Clin Infect
Dis 2006; 43:1089-134. First citation in article | Full Text |
PubMed
2. Asch ES, Bujak DI, Weiss M, et al. Lyme disease: an infectious and
postinfectious syndrome. J Rheum 1994; 21:454-61. First citation in
article | PubMed
3. Shadick NA, Phillips CB, Logigian EL, et al. The long-term
clinical outcomes of Lyme disease. Ann Intern Med 1994; 121:560-7.
First citation in article | PubMed
4. Donta ST. The existence of chronic Lyme disease. Curr Treat
Options Infect Dis 2001; 3:261-2. First citation in article
5. Donta ST. Chronic and late Lyme disease. Med Clin N Am 2002;
86:341-9. First citation in article | PubMed | CrossRef
6. Donta ST. Tetracycline therapy of chronic Lyme disease. Clin
Infect Dis 1997; 25:S52-6. First citation in article | PubMed
7. Donta ST. Macrolide therapy of chronic Lyme disease. Med Sci Monit
2003; 9:PI136-42. First citation in article | PubMed
8. Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting
in the serodiagnosis of Lyme disease. J Infect Dis 1993; 167:392-400.
First citation in article | PubMed
9. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of
antibiotic treatment in patients with persistent symptoms and a
history of Lyme disease. N Engl J Med 2001; 345:85-92. First citation
in article | PubMed | CrossRef

Nick
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by Nick » Sun 28 Oct 2007 20:44

Our findings, which were based on careful observations of several
thousand patients over the past 20 years, strongly support infection
as the probable cause of chronic symptoms.
the problem here is that IDSA tries to monopolize the definition of Lyme disease to suit their own narrowminded point of view. E.g. with their very arbitrary definitions regarding what does or does not constitute Lyme disease, they make it almost impossible to have a valid scientific discussion. In recent years they have moved to only accept severely flawed and insensitive Elisa tests (plus required other factor), or a relatively unusual combination of other facts as proof of Lyme disease.

I am 100% sure that in a large percentage of patients that have had 'adequate treatment' as defined by IDSA, persistent Bb infection can be proved with sound scientific tests like PCR (of course PCR will still fail to prove infection in many patients, but that is not the point here). The current IDSA dogma is that persistent infection after treatment is extremely rare and not relevant anyway; this is a dogmatic, unscientific point of view.

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LymeEnigma
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by LymeEnigma » Mon 29 Oct 2007 4:21

I think the article is very impressive ... Matrian, where can I get an original copy?

Martian
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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by Martian » Mon 29 Oct 2007 20:11

LymeEnigma wrote:I think the article is very impressive ... Matrian, where can I get an original copy?
If you mean the article by Donta, this is the course: http://www.journals.uchicago.edu/cgi-bi ... 086/512979

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Re: A Critical Appraisal of “Chronic Lyme Disease”

Post by LymeEnigma » Tue 30 Oct 2007 16:20

Yes; thank you.

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