[BLINK 07/26/2004] IF YOU ARE NEW TO LYME.........

From: lyme_lighthouse (lyme_lighthouse_at_aol.com)
Date: 07/26/04 

Date: Mon, 26 Jul 2004 13:59:01 GMT

...the very first thing you must learn is that the diagnosis and
treatment of Lyme Disease (as well as several other related
vector-borne illnesses) is an extremely controversial and politically
charged subject. One result is that an unmoderated newsgroup such as this
finds itself under constant attack from anonymous individuals with
questionable motivations, who utilize a combination of subterfuge (e.g.,
posting as other well-known users with slightly mis-spelled user names),
intimidation and well-timed imflammatory posts to maintain a perpetual
flame-war within the newsgroup. Thus, while there are occasional nuggets
of valuable information found here, this simply may not be the best location
for the uninitiated to find basic information.

For the mainstream CONSERVATIVE view on treatment and diagnosis, visit
these sites HOWEVER READ FURTHER BELOW

http://www.aldf.com

http://www.journals.uchicago.edu/CID/journal/issues/v31nS1/000342/000342.html

You should be aware that not everyone is in agreement with the above
guidelines and opinions. A significant number of Lyme patients have
found the mainstream minimal treatment such as recommended above to be
insufficient, leaving them with ongoing and sometimes serious illness.
Further, an unknown (and possible large) number of persons who are
newly infected may be going undiagnosed based on the controversial
two-tier testing currently recommended by the conservative camp. Be
aware that if you see a local doctor, these conservative guidelines and
opinions are those with which (s)he will most likely be familiar.

While not as widely accepted at this time, more progressive guidelines
for diagnosis and treatment exist. If you suspect you have Lyme
or one of the associated diseases (even if you have previously tested
negative), or if you have been diagnosed and received the mainstream
course of treatment but have not improved, it's time to make yourself
aware of the more progressive views on these illnesses, as well as the
political forces that may be hindering an honest and open dialog regarding
the many problems surrounding these illnesses.

What political forces? Those active in the Lyme community have been
warning for years that Lyme (and several associated illnesses) are more
widespread, and much more persistent and serious than is currently
acknowledged. How much more widespread and serious no one can say
exactly but some suspect the epidemic is quite extensive, with many
people remaining undiagnosed, or misdiagnosed with other problems that
are difficult to differentiate from Lyme and/or associated infections.
Combine this with the fact that even for those who are "lucky" enough
to be correctly diagnosed, cost-effective and reliable treatment
remains elusive for an apparently significant percentage of this group.
Again no can say how many cases have not responded, but progressives
suspect the number of treatment failures is much higher than claimed
by conservative estimates.

So if the progressives are correct, there is a potentially large
population of persons infected with one or more persistent organisms,
whose only known semi-reliable treatment (usually months to years of
antibiotics) is potentially expensive (especially if administered via
IV). Most importantly, the expense of such extended, open-ended treatment
is nearly impossible to predict, even on a patient by patient basis,
never mind over an entire patient population. From a business perspective
(e.g., from the point of view of an insurance actuary) this could only be
perceived as a nightmare scenario for the managed healthcare industry.

This is one possible explanation for the relentless stream of
well-publicized conservative studies and opinions in the large
media and mainstream journals, attempting to demonstrate that

(1) only a small percentage of the population is infected (with the
    subtle implication that current testing methods are adequate to
    determine this is true), and
(2) of the small group actually infected, the vast majority are cured
    with a short, cost-effective "standard" course of oral antibiotics
    (a conclusion based at least partly on studies which rely on those
    same questionable blood tests), and finally
(3) the very small number of people who remain ill after the
    "standard" course of antibiotics must be suffering from some
    "post-Lyme syndrome" whose cause, while not well understood,
    cannot possibly come from persistent infection since the standard
    treatment has been "proven" to be so effective.

Many grassroots Lyme activists and patients are concerned that
at least some well-known conservative experts have acknowledged
(or worse, unacknowledged) associations with (and thus might be unduly
influenced by) large business interests like the managed healthcare
industry. Grassroots groups' concerns and suspicions are further fed by the
fact that so many Lyme sufferers' everyday experiences (as well as a
sizeable body of inexplicably ignored studies and reports) seriously
contradict the conservative findings. In response, patients and advocates
have set up their own web sites to provide the public with an alternative
view. Here are a few of those sites:

http://www.lymediseaseassociation.org/index.htm

http://www.lymenet.org (a moderated support group is available here)

http://www.lyme.org/index.html

A growing group of physicians and researchers acknowledge the problems and
limitations of the mainstream interpretation of Lyme Disease and related
infections:

http://www.ilads.org

Here are two well-known books that describe in detail the
many problems and challenges facing Lyme patients (try your local
library before buying!)

http://www.medicine-book.com/Coping_With_Lyme_Disease_A_Practical_Guide_to_Dealing_With_Diagnosis_and_Treatment_0805047751.html

http://www.medicine-book.com/Everything_You_Need_to_Know_About_Lyme_Disease_and_Other_TickBorne_Disorders_2nd_Edition_0471407933.html

The above links are only meant as starting places! There are many
other helpful progressive resources as well -- too many to list here.

Many find the difference in opinion between the conservative and
progressive camps (as well as the level of hostility often associated
with those differences) to be stunning, especially at first. Each individual
must ultimately decide which of the two starkly differing interpretations
of these diseases best fits their own experience and proceed accordingly.

Good luck!