how to educate your urologist/ref to Shoskes
From: davemaschine (dhs_at_neosoft.com)
Date: 12/12/04
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Date: 12 Dec 2004 11:31:35 -0800
I have not posted here in really quite a while, but though doing much
better than well over a year ago, feel I am really on to something.
Dr. Shoskes, according to the chronic prostatitis website, has reported
success using elavil and neurontin with his patients, and also goes
about diagnosis by means of palpitation of the pelvic floor muscles
(levatar ani). I have never had such work performed in my case. I am
all but completely ready to throw out the cause of any of the suffering
I have endured these past four years as infectious, except for any
component that way being of a very tangential nature (i.e., bladder
infection and related). I have had a swollen prostate on DRE's before,
but with what reading and/or research that is available now, cause for
any of that seems to originate really somewhere else entirely than with
infection or to take things a step further, in the prostate, to begin
with.
On the minus or negative side, compared to what I read about other
patients here, I am on quite a heavy dose of Elavil - 75 mg a day, or
25 mg/3x. I read elsewhere just now about titration of 10 to 30 mg of
this, and about this causing side effects. I had to titrate this up
very slowly, compared to what my doctor asked for, and for the first
two months, stayed and perhaps wisely so, on Septra. Going back to the
beginning of this time, we are talking about twenty months, the last
eighteen of which I have been completely off antibiotics. Side
effects? Much sleepiness, weight gain (especially if I do not watch
it), and mild tremors (very mild compared to first rounds of several
types of antibiotics) at the very outset of taking the medications.
One of the worst experiences of tremor with abx was with an antibiotic
I read 2 months after the fact at Shoskes' website as one that doesn't
enter the prostate at all. In other words, the mention of side effects
I request to be taken up as only a side issue. Other patients, based
on their experience, of course, may feel otherwise.
I inquired with my most recent uro, and one I managed to see over a
period of nearly 30 months, about switching from Elavil to another
tricyclic, due to the weight gain, and he acted skeptical that that
would be a good idea, since I might (sooner) get a flare-up in response
in the attempt to make such a change. It is this week that I start with
a new urologist, due to the one I had seen for so long, comparatively
speaking, having retired. I chose on purpose the younger of the two
doctors replacing him.
The thought occurred to me yesterday of emailing one or two doctors
around University of Texas Health Center of Houston and requesting they
order the David Wise book for the medical center library there. A
small group of doctors, I believe, is subscribed to the Kegel Exercise
theory, as to how to treat pelvic muscle disorders or prostatitis, but
I just finished reading a lot of naysaying at the chronic prostatitis
website about this. I asked one or two people in the kinesiology
department at U of Houston and my uro about this, and got puzzled and
derisive responses, pretty much. I pretty much have thought up until
now that any means of pelvic floor relaxation and Kegels Exercises are
directly related. I now assume now that this at least may be all
wrong, but I could be stepping on an ego or two to even vaguely suggest
as much. So, instead, I would like to raise the question with this
newsgroup as to explain more clearly, thoroughly what the differences
may be in procedure, desired and real effect, etc.
One further thing to inquire about is those doctors who tell their
patients that the disease we have is all in our heads? Without this
being true at all, could there perhaps be a grain of truth to such a
cop-out? The doctor I flew up to see in the northeast quad of the U.S.
made it specifically clear to me that he denies this to be the case,
and of course, I was all ears. Offering this notion to a patient who
is, for dear life it seems, altogether psychologically dependent on
antibiotics, quite cruel, without offering any alternative, except to
see a psychiatrist, who we know does not specialize nearly as well in
the area of pelvic floor muscles or prostatitis, as urologists,
neurourologists, pscyhourologists (one I made up - i.e. Buchner's
Woyzeck - the control of the musculus constrictor vesicae is a function
of the will, quoth the doctor in tht play), etc., are.
How can a patient suggest to a doctor that this perhaps should be a
disease to go under quite a different name? I thought that perhaps the
new name for everything on the web was beginning to change to something
like 'pelvic myofascial neuropathy,' but returning to my sources this
morning, am finding 'pelvic myoneuropathy' instead. How many years
are we away from changing the name of this newsgroup? Rhetorical
question.
I may or may not have a follow-up question for Dr. Shoskes here
himself, but perhaps to avoid sending this thread reeling off in the
wrong direction entirely and in all due respect to Shoskes, will at
least abstain from doing so for now. Nothing ridiculously off-topic in
mind to ask, by the way. For sake of the vaguest notion of brevity, I
sign off here, looking forward to at least one or two interesting
responses, even from Shoskes himself, if he feels so emboldened. :-)
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