Re: IDSA Guidelines...can anyone tell me what this means?

I think the basic problem is with the serologic testing. While IDSA may
not mean to state exactly that, the average physician is going to
interpret that as meaning in late stage illness, you have to have a
CDC+ test. I think that's what the LDA is unhappy with.

We all know that not all late stage cases are going to be CDC+.

playing the devil's advocate and trying to see things from the steere
perspective, let's take the case of a late stage patient who either
actively progressed to late stage disease without getting an EM-based
diagnosis, or reactivated a latent infection {a poorly understood
process to say the least}. now, let's suppose that at some point in
time prior to presenting for lyme diagnosis, this patient developed a
respiratory infection or an ear infection or something like that and
was given a ten day doxy script, or a 2 week erythromicin script, etc.
now, according to even steere, that sort of thing can cause CDC- lyme
serology, active seronegative disease. and given the very high
prevalence of antibiotic use everywhere in the US, this is a situation
which cannot be too infrequent.

that's just an example.

here's a question I have, and I apologize for not presenting the exact
quote. somewhere in the new IDSA guidelines, they discuss re-treatment
of late disease. and they state something like "re-treatment should
only be considered when objective clinical evidence of active disease
is obtained". however, the guidelines DON'T specifiy exactly what is
considered to be clinical evidence of continuing active disease. ie,
are they asking for positive lyme serology? a positive PCR? what about
a seronegative patient {since there has already been abx treatment,
according to steere seronegative disease can then proceed} who develops
some sort of nerve disease as evidence by EMG testing, or ...CNS
disease, negative serology, but a slightly elevated protein in the CSF,
a positive SPECT, and lesions on the MRI? is that enough?

See, this is why they need to go into more detail on this stuff. there
has been very good work done by steere and wormser and such on early
lyme disease, but the problem comes with late stage disease,
seronegative manifestations, possible auto-immune syndromes caused by
Bb but not requiring its continual activity, complicated CNS disease,
peripheral nerve disorders, etc. and I think the bottom line is, they
don't really know themselves what the answers to these questions are. I
wish they'd just admit that. probably behind closed doors they do admit
that.

I guess they can't be open about this because of the panic factor,
possibly combined with an ego factor. in any event there is some point
especially in a late stage patient who has had decent past evidence of
disease where the IDSA types need to lay off and let the patient make
his or her own decision regarding treatment. that's what is done by
medicine in other poorly understood or difficult to treat diseases such
as glioblastoma multiforme, ALS, pancreatic cancer, advanced lung
cancer, treatment-resistant TB, etc.

IDSA claims late stage "indolent forms" are "rare", but when dealing
with the most common vector-borne disease in the nation, the word
"rare" actually means THOUSANDS PER YEAR. and suddenly that doesn't
seem so rare, especially when you consider that there are only ~2,000
syphilis cases {all stages} reported every year in the US.

IDSA and EIS and CDC makes me feel like I'm a cow in a herd, and that
may be convenient for epidemiologists, but it's not american. the 14th
amendment guarantees equal treatment for all under the law, but when
people start playing god with you, they are violating this and other
basic tenets of the constitution and the american experience. the
children, friends, and family members of the IDSA members who make
policy, who speak out of both sides of their mouths, are among the
possible beneficiaries of a double standard at the expense of the
general public. they are possibly being told to avoid ticks and
exposure in endemic areas at all costs, while simultaneously the public
is told that lyme disease is "no big deal".


the 3rd Man wrote:
Actually, I am trying to figure out what the LDA is relying upon for
this statement:

"In a nutshell, the reckless new IDSA guidelines forbid doctors from
using clinical discretion in determining whether or not patients have
Lyme disease. Instead, they require that doctors either see a
characteristic rash known to occur in about half the patients, or that
patients register positive on the two tests recommended by the Centers
for Disease Control & Prevention (CDC) -- tests known to miss up to
half the patients. At any stage of disease, as many as half the
patients may remain undiagnosed".

I can't find this...does anyone understand what they mean?

If a correct interpretation, that would seem to place the IDSA squarely
at odds with the CDC, who has consistently maintained that Lyme disease
is primarily diagnosed in accord with clinical observations. And this
seems odd, as the IDSA panel members are also "expert" advisors to the
CDC...and Steere does seem to indicate the same, that is, that
diagnosis is based upon clinical findings.

They are, after all, TREATMENT guidelines...and they specifically
suggest that physicians familiarize themselves with the methods of
properly diagnosing Lyme disease.

But the guidelines themselves seem to contradict the LDA
interpretation:

"Erythema migrans is the only manifestation of Lyme disease in the
United States that is sufficiently distinctive to allow clinical
diagnosis in the absence of laboratory confirmation. In a patient with
a compatible epidemiologic and clinical history, the preferred means of
diagnosis is visual inspection of the skin lesion. Serologic testing is
too insensitive in the acute phase (the first 2 weeks of infection) to
be helpful diagnostically [102, 103, 116]. Patients should be treated
on the basis of clinical findings. In a minority of cases for which
there may be diagnostic uncertainty, both acute-phase and
convalescent-phase (i.e., 2 weeks after the acute-phase) serum samples
should be tested using the 2-tier testing algorithm recommended by the
Centers for Disease Control and Prevention (CDC) and the Association of
State and Territorial Public Health Laboratory Directors [117].
Untreated patients who remain seronegative, despite continuing symptoms
for 6-8 weeks, are unlikely to have Lyme disease, and other potential
diagnoses should be actively pursued".

"Patients should be treated on the basis of clinical findings". Isn't
that fairly clear? Doesn't that contradict what the LDA says, above?

I am not sure, but I suspect that the LDA's statement may have come
from the following statement in the "executive summary" portion of the
text:

"Clinical findings are sufficient for the diagnosis of erythema
migrans, but clinical findings alone are not sufficient for diagnosis
of extracutaneous manifestations of Lyme disease or for diagnosis of
HGA or babesiosis. Diagnostic testing performed in laboratories with
excellent quality-control procedures is required for confirmation of
extracutaneous Lyme disease, HGA, and babesiosis".

In other words, an EM rash is sufficiently unique to diagnose Lyme by
clinical observation, but no other symptom of Lyme disease is
sufficiently unique to Lyme to CONFIRM the diagnosis without a positive
serology according to the CDC standards.

But...is that that "confirmation of the diagnosis" essential before
TREATMENT?

If I am understanding the above statement that "patients should be
treated on the basis of clinical findings"...then that would tend to
indicate the LDA has misread and misinterpreted the menaing and intent.

But I am not at all sure, quite frankly.

.

Relevant Pages

  • Allen Steere NIH funding history
    ... treatment-resistant arthritis patients with a range of MHC alleles ... Lyme disease, arthritis, autoantigen, autoimmune disorder, bacterial ... Abstract: DESCRIPTION: The goal of this grant ... Borrelia, Lyme disease, biomarker, communicable disease diagnosis, ...
    (sci.med.diseases.lyme)
  • Re: Strange Illness For Over One Year, Please Help!
    ... >> to see on blood smears for diagnosis. ... I have been asked by ER doctors on how to diagnose Lyme disease and what ... The whole history of TBD is full of cross reacting antibodies. ...
    (sci.med.cardiology)
  • Re: Battle lines have been drawn over new clinical guidelines
    ... new clinical guidelines on spotting and treating Lyme disease. ... Infectious Disease Society of America are the "best that science has to ... cause the painful illness -- extends much past this period in patients ...
    (sci.med.diseases.lyme)
  • Spinning Lyme
    ... An Understanding of Laboratory Testing for Lyme Disease ... While Lyme disease is a clinical diagnosis, ... almost a third of the patients actually do not ...
    (sci.med.diseases.lyme)
  • Most Excellent Lyme Info???
    ... Townsend Letter for Doctors and Patients, ... Lyme Disease was initially regarded as an uncommon illness caused by the ... (Ehrlichia in white blood cells and Babesia in red blood cells). ...
    (sci.med.diseases.lyme)
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