Re: ILADS guidelines now online

From: Phyllis Mervine (pmerv_at_direcway.com)
Date: 11/29/04 

Date: 28 Nov 2004 21:17:28 -0800

a_weisman@yahoo.com (A_Weisman) wrote in message news:<e55e6d97.0411280529.5e839b95@posting.google.com>...
> "Martijn" <Kw3Ls@hotmal.com> wrote in message news:<41a78293$0$769$3a628fcd@reader20.nntp.hccnet.nl>...
> > "Phyllis Mervine" <pmerv@direcway.com> schreef in bericht
> > news:e1aa732b.0411261025.77931507@posting.google.com...
> > > The ILADS guidelines are now up on the National Guideline Clearinghouse.
> > >
> > > http://www.guideline.gov/summary/summary.aspx?doc_id=4836&nbr=3481&string=lyme
> > >
> > > Phyllis Mervine
> >
> > But this is not the complete guidelines, just a part of it, right?
>
> No our favorite martijn, that is the whole thing.
>
> Note: No financial conflicts are disclosed. Sources of funding listed
> do not include LDA Joisey though it was claimed that LDA did provide
> funds that Phyllis claimed was one of the reasons that they needed
> reimbursement.
>
> What a joke.
>
> Evidence is not provided to support the guidelines.
>
> Vague references are made such as "Some experts recommend" but that is
> self referential, meaning they are referring to themselves as experts
> and not any peer reviewed document (probably refers to burrascano's
> guidelines).
>
> There are 66 references, mostly to themselves but they're not provided
> here.

Dear Mr. Weisman:

I think you may be a little bit confused about what I said about the
ILADS guidelines. I never said LDA provided funding for them. ILADS
had a contractual obligation with the publisher to sell a certain
number. This contract has been satisfied. ILADS gave CALDA permission
to reprint the Guidelines in our Special Patient Issue that was sent
to all CALDA members. Many other individuals have also ordered this
issue, and we are having some more printed. ILADS Guidelines can also
be obtained directly from ILADS through their website, www.ilads.org.

There are 66 references. Five of the Guideline working group are among
the authors listed in the references, hardly the "mostly themselves"
you suggest. This and your other remark - "What a joke" - are
strangely derogatory.

We are very pleased with the ILADS guidelines. They are proving to be
very useful to us in our work as patient advocates.

Below is a section from Treatment of Tick-Borne Diseases: A
Medicolegal Assessment, by Johnson and Stricker (Expert Rev Anti
Infect Ther. 2004 Aug;2(4):533-57) that describes some of the
differences between the old (IDSA) guidelines and the new (ILADS)
guidelines:

Two Lyme Camps. Given that there is no test currently available that
can demonstrate the eradication of B. burgdorferi and the lack of
studies determining the optimum length of antibiotic treatment or even
the optimum choice of antibiotic,[140] two alternative schools of
practice have emerged. Some physicians treat for thirty days
regardless of patient response "unless relapse is shown by reliable
objective measures."[144] Other physicians, reason that that if
diagnosis can only be made clinically because the current diagnostic
tests are inadequate for making a diagnosis, the determination of the
treatment end point must also be made clinically. The different
approaches have crystallized into a polemic and at times rancorous
debate between the two "Lyme camps".[145]

A number of conflicting guidelines reflecting the views of the two
Lyme camps have been promulgated over the years. Most recently, one
set of guidelines was published under the auspices of the IDSA,[144]
while another set was published by the International Lyme and
Associated Diseases Society (ILADS) [91]. Both guidelines are
"evidence-based" and peer reviewed, with the IDSA generally
recommending standardized short-term treatment and ILADS recommending
individualized treatment based on the clinical course of the patient.
Short Term Treatment Approach. The short-term treatment approach is
reflected in the IDSA guidelines. Although the IDSA itself is a large
specialty organization, the panel that drafted the guidelines was
narrowly drawn and consists almost exclusively of academic researchers
with well-known ideological views, representing one of the two "Lyme
camps." The guidelines advise that "response to treatment is usually
slow and may be incomplete" but retreatment, after a 30-day course of
antibiotics, is not recommended in the absence of "reliable objective
measures." The guidelines also provide that "there are no convincing
published data showing that repeated or prolonged courses or oral or
IV antimicrobial therapy are effective for such patients."
 
Physicians advocating the short-term treatment approach hypothesize
that any persistent symptoms after treatment reflect an autoimmune
process triggered by the infection. Basically, these physicians
assume that the infection has been eradicated once the patient has
received the presumptively adequate antibiotic treatment and provide
the patient with palliative treatment for the remaining symptoms. The
assumption that the infection has been adequately treated is
presumptive because:

· there have been no trials demonstrating the efficacy of the 30 day
antibiotic duration, and [17]
· there is currently no diagnostic test that can establish the
eradication of B. burgdorferi.

Similarly, the hypothesis that the sole cause of the continuing
symptoms is the presence of immune complexes remains unproven.
Terminating treatment despite persistent symptoms is a high stakes
risk for patients with progressive illness. In addition, steroids,
which may be used to curb autoimmune conditions, increase the
progression of active infection and are contraindicated for active
Lyme disease.[146] Some physicians have characterized the termination
of treatment despite persistent symptoms as medically sanctioned
negligence [101] because termination of treatment may result in
advanced neurological injury, debility and death.[147]

The IDSA guidelines have drawn sharp criticism from treating
physicians [101, 148] and patients [149] because they make strong
inflexible treatment recommendations based on weak evidence, place
undue weight on flawed lab tests, discount the diagnostic value of
patient symptoms, and fail to consider individual treatment response
variability, coinfections, patient preferences, or treatment
alternatives. The guidelines reliance of "reliable objective
measures" as a determinant for continued treatment of symptomatic
patients is particularly disturbing in light of the current state of
diagnostic testing. Bear in mind that Struabinger's animal studies
proved persistent infection after antibiotic treatment only by
harvesting 23 tissue sample from each dog at necropsy.[146] Animal
studies indicate that considerable infection with B. burgdorferi in
the CNS can be present without overt clinical signs.[150] As the CDC,
NIAID, and FDA have all acknowledged, the commercially available tests
today simply cannot carry the weight of this load, which is why each
of these agencies call for clinical diagnosis and discourage
over-reliance on laboratory tests.

Longer Term Treatment. The longer-term treatment approach is
reflected in the ILADS guidelines. ILADS is an interdisciplinary
group of physicians and researchers dedicated to improving the
diagnosis and treatment of tick borne diseases. Members include
neurologists, rheumatologists, internists, family practitioners,
pediatricians, immunologists, ophthalmologists, dentists, and
psychiatrists. The ILADS guidelines provide that lab tests should
play a supportive role in the clinical diagnosis and treatment
determinations for Lyme disease. Similarly, the duration of therapy
should be guided by clinical response to treatment, and treatment
should continue until resolution of laboratory abnormalities and
symptoms. The treatment guidelines discuss persistent Lyme disease,
recurrent Lyme disease, refractory Lyme disease, treatment failure,
and coinfection.
 
Physicians who advocate longer-term antibiotic treatment use an
empirical approach based on clinical evidence of active infection to
determine treatment duration. Evidence of on-going infection is
determined by examining all clinical data, including persistence of
symptoms, serologic testing, and other forms of corroborating tests,
like MRIs, SPECT imaging, neuro-cognitive testing, or other objective
neurological indications. Ultimately, the determination of efficacy
of therapy depends on the clinical response. One physician sums up
the treatment approach as follows: "Currently, no definitive tests
are available for assessing the complete absence of spirochetes in
patients. Only through a careful evaluation of individual clinical
data can the optimum duration of treatment be established. Our
observations indicate that if antibiotic therapy is terminated before
the major active symptoms have cleared, a relapse is likely."[151]

These physicians point to
· the high rate of treatment failures using short term antibiotics,
· the studies showing persistent infection despite antibiotic
treatment,
· the clinical evidence that antibiotics treatment may suppress but
not eradicate infection in some patients,
· the clinical evidence of the benefit of longer duration treatment
regimes, and
· the favorable clinical response of patients who are retreated.
 
These physicians believe that it is too early for standardization of
treatment regimes, and that treatment regimes should be individualized
based on the patients' symptoms and clinical course. From experience,
they have seen that longer antibiotic treatment regimes used in other
diseases, like tuberculosis and leprosy, are more in keeping with
their clinical experience treating patients with persistent symptoms
of Lyme disease. Although these physicians acknowledge the role
immune complexes contribute to symptoms, they regard it as unlikely
that they account for the majority of the progressive symptoms,
particularly given that many of the symptoms characterized as
inflammatory improve in response to antibiotic treatment.[22]

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