I am responding to ideas posted throughout the thread overall, and I
must say that this has been one of the most impressive to post here in
what seems quite a while.  I wasn't aware of any specific year that
there was a great crossroads or turnaround in strategies, but even if
there was, how stubbornly is necessary change in research and
treatment protocols is going to be and has been resisted by many
doctors and even in major medical centers and since the time I became
ill with this, which was late 2000.

One other minor detail to address here is that I wasn't aware that
there were
CPCRN centers until just reading this, but heard through the grapevine
about
a doctor in Jackson, Mississippi who, after checking webpages, seems
to be near retirement.

I just made my first trip out of town to see one of the doctors either
in
the CPCRN network or close to it and was impressed with the attitude I
see
those doctors who participate in it have, in regards to this illness.
Take for instance this newsgroup, in which (and about which I have
complained repeatedly) is constantly a debate between those people who
throw all their
eggs in the antibiotics/massage basket and those others who adamantly
insist
that this disease is not infectious in etiology at all.  And I also
think back
about how long it has taken me to jump ship from one to almost the
other side
altogether, if not quite.  

Early in 2002, I remember telling my doctor, who believed in
antibiotics and massage primarily, that I was no longer expecting a
cure from this by constantly throwing antibiotics at it, and before
dropping me at the end of April that year, he would more or less shrug
his shoulders as if to say that he didn't know or that perhaps I was
being arrogant.  He did insist on slow growth sensitivity lab results,
and once he dropped me, I was quite uncertain I would
ever get so careful treatment again.  The costs of having this done
with him,
however, seemed rather nominal in comparison with what the Baylor
specialists here would charge, and who had me completely terrified
that either I had to be put on intravaneous antibiotics or as a
greater copout, that if I was still having issues with pain with this
and there was nothing to really treat it, that the problem was one
that is in my head.  The doctor I saw out of town just very recently
emphatically stated to me without my asking him, that the problem
wasn't something in my head.  

For the second half of 2002 and all the way up until now, I have been
going out to a doctor rather hard to get to transportation wise, and
who would just as likely throw the specimen over his left shoulder as
turn it in for five to seven day slow growth exams, or pardon me, more
likely ...  I was somehow
very cynically or fatalistically or some of both be able to laugh
about this very fact.   Just to show what a dependency can develop or
in my case, had developed (and whose fault mostly? - the Baylor
specialists in one of the largest medical centers in the world), I
decided to go cold turkey with the antibiotics (my third course of
bactrim had me feeling almost completely well most of this time)
around Thanksgiving 2002 and went to three more urologists for second
opinion, hoping to get the slow growth results I still thought I
needed, and had to almost by force (the threat of acute prostatitis
coming on) get back on antibiotics or in fact, the bactrim, after my
'results' with the third alternate urologist (and the first one among
them to do tests - two day) I had seen told me that I needed Cipro or
Levaquin, which I knew by then I had completely worn out, or my MRSA,
VRSA pathogens (if they had developed quite that far) had learned to
resist by then.

Phew!  This narrative seems long, but probably not so long compared to
some other stuff I posted here back in 2001 and 2002.  After a several
month course of Bactrim that worked weakly during the first months of
2003, I was put on
amitriptyline (and now accompanied by the strong alpha blocker
doxasosin, which in a way may make hytrin look first generation by
comparison, but don't take my word for it - I am not a doctor) and
nervously stopped the antibiotics, fearing
I'd have to be put on them again in 2 or 3 months with still less
certain results.   Here it is May 15th and I'm three weeks away from
having been off for a year.  The out of town guy I saw, and who I have
sworn to confidence on this (I trust him without asking), sent my
doctor in Houston, who I have made fun of above a bit but who has been
fully supportive of my decision to turn myself in to the CPCRN, a
congratulatory letter on how well my case has been
managed so far, and 'for a number of years by now.'  We both shared a
really good laugh over that and moreover, over 'how challenging my
case has been so far.'  'He just does not know how challenging it has
been.'  At a Kerry rally I attended here a few weeks ago at the
University of Houston, I shared with Sheila Jackson Lee in just a few
phrases (to allow for space to also briefly lay in on the Bush - Ariel
Sharon relationship) where I had been, and she was appreciative.  A
long way from having seriously considered taking Amtrak out to Tucson
to see Polacheck in 2001 - a consideration I dropped after several
days.

Someone had posted here already in this thread that without
antibiotics, he can not depend on 'just nothing', which all the
chinese herbs, saw palmetto, quercetin, etc, had amounted to for me
thus far.  Whatever the double blind exams have said, and given what
autoimmune and neurological characteristics that this condition can
manifest, one can not alienate those professionals altogether who at
least nominally have to rely on antibiotics for consolation of their
patients.   Problem is, with these professionals, they are relying on
a level of research that had already been available in the early
1960's, around the time I was born and perhaps until the past several
years, we haven't been
really updated very much.  Antibiotics still need to be there, as to
testimonies with acute prostatitis attest, but absolutely as a last
result, and with alternative therapies as numerous as we can put
together, test, and administer to patients.   The amitriptyline I take
(and never was prescribed to me for depression) was discovered by my
urologist perfectly on the sly, as he
had another patient with serious emotional symptoms, and the same
medication had
started treating for this had started responding physically to it for
our doctor's satisfaction.  He had also read up on it, of course, from
medical reports avaiable.

I 'accidentally' included in with a medical records fax to the doctor
I saw, a xerox of opera tickets, and by way of response, right after
he had walked in, he explained to the nurse practitioner Leporello's
Catalogue Aria and did a perfect Leporello. There would be hope for
him, for whenever he may want out himself, God forbid.

Matt, I read about you here:
http://tinyurl.com/yvy9d

If you are interested in male pelvic pain, you may wish to read more at
http://www.chronicprostatitis.com and
http://www.chronicpelvicpain.us/

Fel free to join our board and add your comments!