[BLINK 01/11/2005] IF YOU ARE NEW TO LYME...

From: lyme_lighthouse (lyme_lighthouse_at_aol.com)
Date: 01/11/05 

Date: Tue, 11 Jan 2005 14:59:01 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.

So where else should you look?

For the mainstream CONSERVATIVE view on diagnosis and treatment, 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
"mainstream" guidelines and opinions. For starters, a significant number
of successfully diagnosed Lyme patients have found the mainstream minimal
treatment regimen as recommended above to be insufficient, leaving them
with ongoing and sometimes serious illness. Further, an unknown (and possibly
large) number of persons who are newly infected may be going undiagnosed based
on widespread acceptance and reliance on the controversial two-tier testing
(ELISA, THEN perhaps Western Blot) currently recommended by the
mainstream/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 grassroots 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 an
apparently significant percentage of those who are "lucky" enough to be correctly
diagnosed, cost-effective and reliable treatment remains elusive. Again no one
can HONESTLY say with confidence how many cases have not responded to standard
courses of treatment, but grassroot progressives suspect the number of treatment
failures is much higher than claimed by conservative estimates. Part of the problem
is the extended length of time it can take (sometimes years) for late-stage illness
to manifest itself.

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 (for example, 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 a likely 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, which they most certainly are NOT),
(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 maintain 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.

Incidentally, the problems discussed here are not peculiar to the realm of Lyme
Disease but are representative of systematic (albeit subtle) managed healthcare
manipulation of the perception of various diseases across the board, in the ongoing
effort by the insurance industry to influence and control the behavior of
practicing physicians, thus controlling healthcare cost. Most everyone knows
today's healthcare system is broken -- the reason is that MBAs, not doctors,
now define standards of medical care.

In response, patients and advocates have set up their own web sites to
provide the public with an alternative view regarding Lyme and associated
illnesses. Here are a couple of those sites:

http://www.lymediseaseassociation.org

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

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.amazon.com/exec/obidos/tg/detail/-/0805075631/103-1882334-3516605?v=glance

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!