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Medical Forum / Diseases and Disorders / Prostatitis / December 2004

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how to educate your urologist/ref to Shoskes

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davemaschine - 12 Dec 2004 19:31 GMT
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.  :-)
Gutbuster - 13 Dec 2004 11:56 GMT
>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.

Snipped as you can tell.

I grow tired and weary about the complaint. I do have CP for sure. Mine is
bacterial. When it gets so bad it feels like someone has a razor blade on my
left side slowly slicing inside of me, I resort to strong antibiotics but
unless that happens, strong Saw Palmetto.

Nothing else do I take for the relief of this.

I also have a raft of other problems, one of which is IBS. For that problem,
apparently I am to have no caffeine at all but I also have severe and
untreatable sleep apnea and without a strong caffeine dose, I cant work. The
added benefit of doing the opposite to medical advice so far as CP and IBS
is concerned is that I not only pee more freely, I also crap easier.

So, I can work maybe 4 or so hours a day, can do my business without a
problem and all due to doing the opposite to what doctors tell me.

I find there is absolutely NO use once diagnosed, in going back to a doctor
for help. If there is some new breakthrough, you'll find it on Internet
before your doctor knows about it unless your doctor was the one who
invented the breakthrough. The doctors don't care because they cant help you
and they tend to look at you and treat you like a hypochondriac even though
they are the ones who first thought you had CP before being diagnosed.

So, do NOT go to a doctor once diagnosed, drink a lot of caffeine and pee
and crap better. Take Saw Palmetto in strong doses until the pain gets too
much then go to the doctor for your strong antibiotics. Don't take too many
pain killers as they tear your insides up and like me you eventually start
showing blood in urine or crap or both and by stopping taking the pain
killers, about a week later it is cleared up. Sit on chairs like camp chairs
with a strip of stuff like calico as the seat so the pressure on your arse
isn't as bad as it could be. Don't sit down in any one session for more than
20 minutes without getting up and just standing there if you are watching
TV, for about 5 minutes before you sit down again.

None of that will cure you but like palliative care, it is just management
of the problem. It is all you can do - and stay away from doctors. You don't
work as well if you keep getting the vibe from them that you are a lazy good
for nothing whinger who should be in a mental asylum undergoing treatment
for psychiatric disorders even though you DO have health problems. If you
feel down, you feel worse. I say "don't give them the satisfaction"!
NorthernSpy1 - 13 Dec 2004 12:11 GMT
>  but I also have severe and  untreatable
> sleep apnea and without a strong caffeine dose, I cant work.

You seem pretty sophisticated, and hopefully know that obstructive sleep apnea
can be treated with CPAP machines, or some sort of mouth guard, and in any
event often by just losing weight.

Sometimes people with sleep apnea have other ailments (ie, rest leg syndrome)
which curiously is sometimes greated with neurontin, which every good
prostatitis-ite already knows about.

Caffeine late in the day can disrupt sleep later on, perpetuating the
fatigue-coffee-bad sleep pattern.  You probalby know that too.

I find sleep is my best defense against this stuff.  The less sleep, often the
worse the symptoms.

- Carlos
Gutbuster - 14 Dec 2004 12:13 GMT
>>  but I also have severe and  untreatable
>> sleep apnea and without a strong caffeine dose, I cant work.
[quoted text clipped - 3 lines]
> can be treated with CPAP machines, or some sort of mouth guard, and in any
> event often by just losing weight.

The mouth guard doesnt work (been there and done that personally) for almost
everyone and evry other treatment for varying reasons cant, either, with me.
Losing weight doesnt necessarily make any difference. I have had sleep apnea
since the day I was born yet I didnt snore and was skinny as anything until
in my mid 20s.

> Sometimes people with sleep apnea have other ailments (ie, rest leg
> syndrome)
> which curiously is sometimes greated with neurontin, which every good
> prostatitis-ite already knows about.

I do have about 6 auto immune problems.

> Caffeine late in the day can disrupt sleep later on, perpetuating the
> fatigue-coffee-bad sleep pattern.  You probalby know that too.

I do which is why I dont take it then normally.

> I find sleep is my best defense against this stuff.  The less sleep, often
> the
> worse the symptoms.
>
> - Carlos

The more sleep for me, the better the chance that I damage my brain. When
you wake up with blood coming out of the nose and eyes just because you were
asleep too long and a headache that knocks you down for 3 days, you learn to
regulate your sleeping patterns to cope to something most people couldn't
do.
NorthernSpy1 - 15 Dec 2004 12:29 GMT
>Losing weight doesnt necessarily make any difference I have had sleep apnea
>since the day I was born yet I didnt snore and was skinny as anything until
>in my mid 20s.

I understand.

Fwiw, CPAP works for me.   Took me many months to get used to it, but I love my
mask and the sleep it helps me get.  If you havne't checked this out recently,
you may want to revisit it -- there are new models of masks, etc.; all easier
than it once was.

- Charles
Gutbuster - 16 Dec 2004 12:08 GMT
> >Losing weight doesnt necessarily make any difference I have had sleep
> >apnea
[quoted text clipped - 13 lines]
>
> - Charles

Makes no difference what mask you use when your sleeping reflex is to hold
your breath if wind is blown in your face - which I apparently do!

:(
NorthernSpy1 - 13 Dec 2004 12:03 GMT
>Dr. Shoskes, according to the chronic prostatitis website, has reported
>success using elavil and neurontin with his patients

Is that "success" or an admission of defeat?   Doesn't that treat symptoms
only?

I'm a big fan of Dr. Shoskes based on his online writings which indicate a
willingness to try different things.  And at least he does treat the symptoms
when all else fails -- there's a lot to try before accepting that as the end of
the road.

BTW Dr. Shoskes is temporarily out of job, and his prostate research and
protocols shut down.  Which is distressing.

http://www.dshoskes.com/
   "The Cleveland Clinic Florida has decided to close their Kidney Transplant
program and let go of its staff. Therefore effective Jan 1, 2005 I will no
longer be working there. I am considering several job offers from top ranked
academic institutions, but will not take a new appointment and move my family
until the summer."

>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.  :-)

I don't think he's posted here in ages.  That's not likely to change.

http://www.dshoskes.com/
"In addition, because I will have no malpractice liability coverage, I will not
engage in any clinical interactions, including communicating with patients (new
OR established) by phone or email"

Of course, he presumably wouldn't need insurance to post in a newsgroup, since
he'd not be giving medical advice.

- Carlos
 
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