Re: Lyme Newsgroup Questions

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)

Shadick 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

Shadick 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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