Re: Lyme Newsgroup Questions

Thank you for posting this interesting information.

Can I just add that the government of the UK is misusing CDC criteria,
as are all those in Europe who follow the guidelines of the EU-funded
body EUCALB on diagnosis, which are generally based on the CDC
approach, and require a positive blood test and CSF via the two-step
testing method as part of the mandatory criteria before a diagnosis of
neuro-Lyme can be given.

Lisa



p...@xxxxxxxxxxxx wrote:
> This doesn't answer your questions but I think it is interesting:
>
> As part of an on-going study, a survey questionnaire was distributed
to
> patients with persistent Lyme disease through the Lyme Times
> publication nationally and through selected doctors offices
throughout
> the nation during the last quarter of 2003 and the first quarter of
> 2004. Preliminary results, based on more than 100 completed
> questionnaires, suggest widespread misuse of the CDC surveillance
> criteria for diagnostic purposes resulting in significant diagnostic
> delays.
>
> Respondents were asked to provide a unique patient identifier
(initials
> of name plus birthdate) to ensure that no duplication of results
> occurred. Of those who responded, each of whom has been diagnosed
with
> Lyme disease:
>
> 1. ELISA Misdiagnoses. 67% were denied a diagnosis for Lyme at least
> once due to a negative ELISA by CDC criteria.
>
> a. Of these, 23% were denied access to a WB by their physicians due
to
> a negative ELISA.
>
> 2. Western Blot Misdiagnosis. 54% were denied a diagnosis for Lyme
at
> least once due to a negative WB by CDC band criteria.
>
> 3. Diagnosis and Treatment Delays. 67% were delayed in their
> diagnosis because of misapplication of the CDC surveillance criteria
> (either ELISA or Western Blot) as diagnostic criteria. The average
> number of years of delay in diagnosis was 3.18.
>
> 3. Method of Diagnosis. Only 14% of those responding were diagnosed
by
> ELISA, while 51% were diagnosed by WB (not necessarily meeting CDC
band
> standards) and 54% were diagnosed clinically. (Diagnosis by PCR and
> spinal tap were 5 and 3%, respectively.)
>
> Conclusion: The take home message of this is that almost 70% of
those
> responding had a delayed diagnosis based on CDC surveillance criteria
> by an average of 3.18 years. The impact of delayed diagnoses in Lyme
> disease can allow the disease to progress from one that is generally
> treatable to one that is more resistant or unresponsive to treatment,
> with devastating consequences to the patient. A recent study equated
> the disability caused by persistent Lyme disease to that of
congestive
> heart failure. Early detection and treatment is key to Lyme disease.
> The CDC should not tolerate the misuse of surveillance criteria for
> diagnostic purposes. . To prevent such misuse, the CDC should notify
> doctors and insurers that the CDC surveillance criteria should not be
> used for diagnosis or insurance reimbursement.
>
> Here is a table showing rate of treatment failures in various
studies,
> from Johnson and Stricker. Treatment of Lyme disease:a medicolegal
> assessment. Expert Rev.Anti-infect.Ther.2(4),533 -557 (2004)
> The treatment failure rate ranges from 26 to over 50%
> (I have posted this before)
>
> Sha*** et al.37%
> (69 out of 184)
> Overall, 69 case patients (37%)reported a previous relapse of Lyme
> disease
>
> Treib et al.>50%
> (44 total)
> 4.2 ± 1.2 years after a 2-week course of intravenous ceftriaxone (2
g
> daily),
> more than half of the 44 patients with clinical signs of
> neuroborreliosis and
> specific intrathecal antibody production had nonspecific complaints
> resembling chronic fatigue syndrome and showed persisting positive
> immunoglobulin M serum titers for Borrelia burgdorferi on western
> blot analysis
>
> Valesova et al.38%
> (10 out of 26)
> 3 years after treatment of 26 patients,19 showed complete response or
> marked improvement;relapse occurred in six and new manifestations in
> four
> of the cases
>
> Sha*** et al.26%
> (10 out of 38)
> Within 1 year of treatment, ten out of 38 patients reported relapse
and
> had
> repeated antibiotic treatment (five patients with intravenous
> ceftriaxone)
>
> Asch et al.28%
> (60 out of 216)
> A mean of 3.2 years after treatment,28%had relapsed with major organ
> involvement;18%reinfected.Borreliaburgdorferi antibodies remained
> positive
> in 32%.82 (38%)patients were asymptomatic.Clinically active Lyme
> disease
> found in 19 (9%).Persistent symptoms in 114 (53%)
>
> Pfister et al.37%
> (10 out of 27)
> A mean of 8.1 months after a 2-week course of intravenous cefotaxime
or
> ceftriaxone,ten out of 27 patients were symptomatic,and Borrelia
> burgdorferi
> was isolated from the cerebrospinal fluid of one patient
>
> Logigian et al.37%
> (10 out of 27)
> 6 months after a 2-week course of intravenous ceftriaxone (2 g
daily),
> 17 patients (63%)showed improvement,six (22%)showed improvement but
> then relapsed,and four (15%)showed no change in their condition

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