Re: In Praise of Lyme Activists

a_weisman_at_yahoo.com
Date: 12/29/04 

Date: 28 Dec 2004 23:00:37 -0800

zipzip wrote:
> d'oh! i should have read your statements...
>
> "Yes with the standard treatment as they always have been. However
> those who don't succeed on the standard Steere Yale treatment course
> are
> still as f%^%ED as ever. Probably worse."
>
> ... in context before i elaborated! aren't i the *** for calling
you
> pompous at the end of my message. my own mirror is laughing at me in
> irony. sincerest apologies, but think you picked up on that.
> definitely clarified now, and happy holidays, new year, etc to you
too.
>
> late, and going to bed, so i will i re-read, digest your comments and
> reply tommorow...
>
> zip

It didn't bother me, apology accepted and not really necessary. My
original statement WAS unclear. Thank you for pointing that out so that
I could clarify what I meant.

By the way, I'd like to add that ANOTHER failure of Lyme activism and
"advocacy" is not admitting that MOST people (*the overwhelming
majority) do seem to do fine on the "standard" treatment (at least
OSTENSIBLY as defined in my original post).

Why not admit that? Why not say that we AGREE with Steere's studies
(when he did studies rather than opinion pieces with no new data for
years now) which show that MOST people do well--but also document
treatment failure rates even higher than 10-20%, some show treatment
failure rates of 35%.

Our real quibble should be that treatment failure rates of 10-35% are
demonstrable, real, really tragic and unacceptable.

In other words, let's admit that 80% (or 75%) do just fine. But let's
rail and rage at the fact that Steere et al would deny the existence of
the others, and would deny them treatment, even a try, any hope.
Because THAT is unacceptable!

Think about it for a second. West Nile Virus is a subclinical or
asymptomatic, mild, self limited disease for MOST people (over 95% who
get it don't even know they have it or had it).

Yet NO ONE denies how serious WNV can be (in fact it is terribly ironic
that pretty much everything they say about Lyme is true about WNV--it
is rare, relatively hard to get and for most people it really is
nothing to worry about). In fact, those who get really ill or die from
WNV are people at great risk from ANYTHING--really old people who will
die when they get the flu (and 35-40,000 a year die from the flue, not
just old people but predominately old people) and people who are
immunocompromised, such as HIV/AIDS patients.

Funny thing in all the time since WNV hit the scene and got so much
attention, publicity and funding for research, I can't find one single
WNV support group or disease advocacy organization. Not one.

What does that say?

So it would be much more effective to admit what really shouldn't be
denied but make the point that for those who don't do well, that we
need to do better, to try at least, not write them off, resign them to
disability and misery.

Now that's the truth!

What bothers me and destroys our credibility is the LymeNUT sort of
mentality which takes the position that EVERYTHING is Lyme, that
everyone with Lyme requires endless treatment w antibiotics, that LLMDs
can do no wrong and that mainstream doctors are uniformly "ducks" and
can do no right!

What is amazingly amusing is when they post things wondering how many
doctors read that cybernuthouse called the FLASH board, always certain
that "the enemy ducks" are surveilling them and wanting to know the
names of LLMDs and wanting to know their scary secret plans so they can
plot to defeat them. One time I saw them wonder how many people from
Harvard were reading the site? LOL

The place is an intellectual trailer park; their leader is an anonymous
nutcase, they are a bunch of ill informed extremists and quack remedy
advocates, and their huggy huggy nonsense is a thin veneer over their
truly hostile insular extremist moronic mentality.

Gee notsogreatclod, you could be one of their heros! Go join up with
that whack job "tincup" and blow them some of your meaningless
rhetorical moralizing bubbles from your tired old soapbox, they'll
cheer you, they'll love you, they'll keep sending your posts "to the
top" they won't care that you're ignorant and reactionary, they LOVE
that over there!

So why not spare us oh not so greatclod, spread some of your fishy
"wisdom" and moralizing to them. Give us a break already.

Go tell them what a great success lyme activism is, what a heroine
kathleen is (or maybe she's on heroin?), tell em about all the
yalecrap, lead them to more great victories which have made things so
wonderful for all of Lymeland. Give yourself a pat on the back, they'll
all join you. You can even issue your own action alerts over there and
they'll blindly follow. You and LymeNUT perrrrrrfect together!

To be clear: the last part of this post was directed to the not so
great clod NOT to zip zip!