Re: Re: Ulcerative colitis personality

[Guest guest]

I am not a PWC, but the

widower of a PWC who used 110% of her meager strength to decry the

"Power of Mind" faction. All it did was make her look like a nutcase.

I admire my wife for taking a stand but neither would I have condemned

her for not taking a stand. Labeling such people without qualification

as "Uncle Toms" will only fragment a world already full of people who

are understandably cranky. I see it as generating heat rather than

light.

Let's not blame the victims, let's blame the victimizers. Let's not

misplace our anger but direct it where it belongs.

--Bob

phagelod wrote:

I condemn, without reservation, those PWCs who have the strength

to

post on internet forums, but lack the courage to confront the "Uncle

Toms" among us. There can be, and will never be, a reconciliation

between the "Power of the Mind" faction, and the rest of us. PWCs

need to appreciate that impasse, and to confront those PWC adherents

of pseudoscience as worse than enemies--as traitors. That won't be

enough, but I don't see a more plausible path than the one that

starts with that step. We cannot hope to gain credibility when

supposedly sick people embolden healthy people in further de-

legitimizing us.

>

> You can't win for losing. If you "present" with your "complaints"

you

> are crazy. If you ask for the mercy of death you are crazy. If

you

> say, as you put it, "thank you sir, may I have another" you are

lazy and

> still maybe crazy.

>

> I would not fault profoundly ill, exhausted and brutalized

patients for

> what they do or don't do, because it doesn't much matter. Until

society

> decides to quit pushing inconvenient truths aside and letting Big

Pharma

> and the psychological establishment manipulate them, nothing will

change.

>

> I think we need to attack those vested interests by highlighting

their

> evil machinations against a range of illnesses, not to mention

their

> incestuous relationships with each other, before we'll see change.

>

> --Bob

>

>

[Guest guest]

Thank you Bob, I think that's the right balance. It is possibly the very worst part of being ill, being blamed for the situation - which is what the "it's all a product of your imagination or bad attitude, or poor coping skills" brings us - as does the "if you don't stand up for yourself you deserve what you get." It is my belief that all we can do is look for teachable moments and press on. Although if others wish to stand up and shout I certainly support that, just don't have to strength to join in and see it at best as chipping away at the wall of resistance while creating more resistance. And, yes, sometimes it does take a frontal assault to get their attention, just not a good long term plan.

infections From: bob@...Date: Tue, 9 Dec 2008 13:08:42 -0700Subject: Re: [infections] Re: Ulcerative colitis personality

I am not a PWC, but the widower of a PWC who used 110% of her meager strength to decry the "Power of Mind" faction. All it did was make her look like a nutcase. I admire my wife for taking a stand but neither would I have condemned her for not taking a stand. Labeling such people without qualification as "Uncle Toms" will only fragment a world already full of people who are understandably cranky. I see it as generating heat rather than light.Let's not blame the victims, let's blame the victimizers. Let's not misplace our anger but direct it where it belongs.--Bobphagelod wrote:

I condemn, without reservation, those PWCs who have the strength to post on internet forums, but lack the courage to confront the "Uncle Toms" among us. There can be, and will never be, a reconciliation between the "Power of the Mind" faction, and the rest of us. PWCs need to appreciate that impasse, and to confront those PWC adherents of pseudoscience as worse than enemies--as traitors. That won't be enough, but I don't see a more plausible path than the one that starts with that step. We cannot hope to gain credibility when supposedly sick people embolden healthy people in further de-legitimizing us.>> You can't win for losing. If you "present" with your "complaints" you > are crazy. If you ask for the mercy of death you are crazy. If you > say, as you put it, "thank you sir, may I have another" you are lazy and > still maybe crazy.> > I would not fault profoundly ill, exhausted and brutalized patients for > what they do or don't do, because it doesn't much matter. Until society > decides to quit pushing inconvenient truths aside and letting Big Pharma > and the psychological establishment manipulate them, nothing will change.> > I think we need to attack those vested interests by highlighting their > evil machinations against a range of illnesses, not to mention their > incestuous relationships with each other, before we'll see change.> > --Bob> >

[Guest guest]

For a kinder take on 'disease personality', see this web page:

http://www.cpnhelp.org/personality_changes_in_mu

[Guest guest]

Is that a Wheldon piece? He and Stratton are doing such great work. Thank goodness there are some who actually "get it", who understand patients and have designed effective protocols based on actual science, not psuedo science or doctored science or plain old wishful thinking (like so many others we've been subjected to).

penny

From: Norman Yarvin <norman.yarvin@...>Subject: Re: [infections] Re: Ulcerative colitis personalityinfections Date: Saturday, December 13, 2008, 1:44 PM

For a kinder take on 'disease personality' , see this web page:http://www.cpnhelp. org/personality_ changes_in_ mu

[Guest guest]

Yes, " D W " on that site is Wheldon.

On Sun, Dec 14, 2008 at 06:02:07PM -0800, Penny Houle wrote:

>Is that a Wheldon piece? He and Stratton are doing such great work.

>Thank goodness there are some?who actually " get it " , who understand

>patients?and have designed effective protocols based on?actual science,

>not psuedo science or doctored science or plain old?wishful thinking

>(like so many others?we've been subjected to).

>

>penny

>

>

>

>From: Norman Yarvin <norman.yarvin@...>

>Subject: Re: [infections] Re: Ulcerative colitis personality

>infections

>Date: Saturday, December 13, 2008, 1:44 PM

>

>

>For a kinder take on 'disease personality', see this web page:

>

>http://www.cpnhelp.org/personality_changes_in_mu

[Guest guest]

Well said Barb ..i think we all agree with your

take on our

position ...My symptoms are also returning ...it follows a bout of

flue. Almost

exactly a year ago my symptoms faded following a cold ..i'm in no doubt

that

the cold virus triggered my immune system ..this time it was a bit more

than a

cold ..i think it weakened me so the bugs from within overwhelmed my

immune

system .

There’s no doubt that our problems stem from a hijacked stressed immune

system

....It's obviously the key in many infections ..we host many would be

pathogens

but our IS keeps them at bay ,, with MRSA ,. medical staff host MRSA

but its

only the patients who succumb.

I do think my

particular infection is Bartonella. I met with Dr Joe Burrascano

last year . He said that

there is more and more evidence to suggest that Bartonella

is a major

factor in chronic illness . One interesting fact he told me was that

Azithromycin

Is

very effective against the bacterium ,if you respond well to zith it’s

a good

indication of Bartonella infection . I respond very well to zith …

Anyway

I hope this relapse is a passing phase. i’ll keep you all posted

http://aac.asm.org/cgi/content/full/48/6/1921

I’ve updated my site to

include some amazing studies ..

I’m just in the process of formulating a

treatment protocol .its difficult to keep motivated ..I’ve found that a

huge

industry has built up around autism ..There’s plenty of people making a

lots of

cash from autistic children ..The tragedy is the parents of the kids

just don’t

see it ..

http://www.yeast-candida-infections-uk.co.uk/

Barb Peck wrote:

I have come to see Medicine mostly as a business that's necessary

for

Big Pharma to make lots of money. The business of medicince also

seems to be regulated by the big Insurance companies- who take Big

premiums from people, then deny treatment..

I don't see anybody actually looking for a way to cure anything

(unless it's Malaria - then they're mostly just pushing mosquito

nets).

I've been 'round the barn with the AIYH (all in your head) dx..

But I don't really know how to answer Matts question.

I haven't seen any inprovements in most diseases in 30 years, and my

expectations are pretty low for seeing anything within my life time.

I'm having a relapse of Lyme symptoms.... and am trying to manipulate

whom every I have to to get what I want- (and I'm educated now enough

in bacteria, and the chemistry of abx to know what I want and why).

And I'm not adverse to go down alternative avenues to get what I want.

I try to NOT be involved too deep anymore with any Dr...There's so

few I have any respect for whatsoever. It's the position of a pawn

in a bigger game.

Barb

> >

> > When will medical orphans show some pride and get up off of

their

> > knees? Who is more pathetic, the racist, or the minority who

> > accepts a second class status without resistance?

> >

> > Even when the suffering becomes so profound and protracted

that it

> > becomes irrational to go on living:

> >

> > http://www.dailymai

l.co.uk/news/ article-1092865/ Devoted-mother-

> > <http://www.dailymai

l.co.uk/news/ article-1092865/ Devoted-mother->

> > arrested-mercy- killing-yuppie- flu-daughter- died-massive-

morphine-

> > overdose.html

> >

> > the suicide will end up being used as "evidence" of a

psychiatric

> > problem. PWCs go on like sheep, hoping that if they are just

nice

> > enough, submissive enough, then they will be thrown some

crumbs.

> >

> > It is the role of psychology to legitimize denigration; to

turn

> > bigotry into a profession. There are many examples:

Drapetomania,

> > the refrigerator mother, the employment of Munchausen by

proxy as

a

> > way to keep mothers in line, etc. I was minding my own

business,

> > investigating ulcerative colitis, but you just can't escape

their

> > bigoted pronouncements:

> >

> > "In the majority of the patients studied psychological

abnormalities

> > and disorders far beyond the range of individual differences

in

the

> > average population were found to antedate the initial onset

of the

> > colitis. In relation to other investigations control groups of

> > patients have been examined by methods which are identical

with

> > those used in the present research. In the ulcerative colitis

> > patients the degree of difference from average individuals

was so

> > gross as to make a special control group unnecessary. A dated

> > clinical history and a dated life history, taken

independently and

> > verified from relatives, showed that disturbing events in the

> > patient's life had preceded the onset, return, and increase of

> > symptoms more often than can be due to chance."

> >

> > quoted from a paper published in the 1938:

> >

> > http://www.pubmedce

ntral.nih. gov/articlerende r.fcgi?artid= 2211121

> > <http://www.pubmedce

ntral.nih. gov/articlerende r.fcgi?

artid=2211121>

> >

> >

> > Ah, psychiatric anomalies supposedly predating disease onset.

Sound

> > familiar?:

> >

> > http://www.ncbi.

nlm.nih.gov/ pubmed/17088506

> > <http://www.ncbi.

nlm.nih.gov/ pubmed/17088506>

> >

> > Ulcerative colitis is an inflammatory condition, with

recently,

and

> > clearly demonstrated genetic risk factors. Only bigots could

assert

> > a psychiatric cause for bleeding out your butt.

However, "Ulcerative

> > colitis personality" seems, now, to have gone out of vogue.

So it

> > is not that PWCs employ fashionable diagnoses... .:

> >

> > http://www.ncbi.

nlm.nih.gov/ pubmed/9456062

> > <http://www.ncbi.

nlm.nih.gov/ pubmed/9456062>

> >

> > ....but that the defamation of patients with medically

unexplained

> > diseases by psychologists reflects the fad of the times.

> >

> > Yet PWCs go on saying, "Thank you, sir, may I have another?",

whilst

> > tolerating the "Uncle Toms" among us who promote "stress" as

causal,

> > and "brain work" as therapeutic.

> >

> > Who is more pathetic?

> >

> > Matt

> >

> >

>

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[Guest guest]

Hi Barb /all , well its a timely question ...After

my bout

of flue a few weeks before xmas a short course of abx's controlled my

symptoms.

As time passed i felt progressively better i thought my immune system

was

taking charge and that did appear to be the case ...That is until a few

days

back ,, i was just counting my blessings when i realised my increasing

tiredness,

headaches aching joints etc were or could be the dreaded returning ,,i

know it sounds feeble not recognising the symptoms but the symptoms

came on so cunningly

...Anyway three days back i took 100mg of Doxy , it sounds a

contradiction with

such diverse symptoms but the Doxy worked like magic and i am now

symptom free.

Its quite a contrast to the times when i was utterly dependent on

taking high

dose at least two abx's a day.

It's good to hear that your responding well to treatment . It would

seem that we live with pathogens rather than kill them off ..as my

hypothesis.

I think

the last major advance with me was addressing oxidative stress and it's

affect on the Methylation cycle ..

Like yourself

i'll keep you all posted on events .......

Barb Peck wrote:

Hey :

Have you started therapy- and how are you doing with your relapse?

Here's the update on mine.. I'm responding very well- as a matter of

fact all symptoms have abated (headaches, very stiff neck, popliteal

cyst on left knee, tinnitis, migrating pain and feeling like I'm

coming down with the flu abour 2Xper week.

In Dec. I started therapy:

1 month of 300 mg Doxy/day (I weigh about 130 lbs)

5 days of 400 mg Hydroxychloroquine (HCQ)and 200 mg Doxy per day

3 days of weaning off Doxy.

10 days of 400 mg HCQ and 1 gram of Clarithromycin (CLR) per day.

I'm almost donw with the HCQ/CLR.

I've not had any breaks between the abx. Interesting becuase in 2002

I couldn't stay on abx for very long at all and had to pulse

everything becuase I felt so bad on them and had so many side effects

(or localized herxes). I had to get off DOxy because of dreams

escalating to daytime hallucinations.

This time I only had 1 hallucination and 1 nightmare.

In 2002 I couldn't take Zith becuase it slugged up my gallbladder

within 24 hrs (Bms turned sand color, and I could feel my liver press

on my right rib.). CLR is the same chemical class (but not exactly

the same - collects more in the lung than the gallbladder).

I haven't had any problems with CLR.

So I deduce from all that that my bacterial load is WAAAY lower now

than it was in 2002 - and my difficulties were probably mostly from

die-off.

In any case- I finish up this therapy in about 5 days.

Hope to have another 4 years symptom free.

I've taken measures for anti-yeast and will continue with that regime

(maybe get a candida panel - haven't decided yet).

Let me know how you're doing.

Barb

> > > >

> > > > When will medical orphans show some pride and get

up off of

their

> > > > knees? Who is more pathetic, the racist, or the

minority who

> > > > accepts a second class status without resistance?

> > > >

> > > > Even when the suffering becomes so profound and

protracted

that it

> > > > becomes irrational to go on living:

> > > >

> > > > http://www.dailymai l.co.uk/news/

article-1092865/ Devoted-

mother-

> > <http://www.dailymail.co.uk/news/article-1092865/Devoted-mother->

> > > > <http://www.dailymai l.co.uk/news/

article-1092865/

> > Devoted-mother-

> > <http://www.dailymail.co.uk/news/article-1092865/Devoted-mother->>

> > > > arrested-mercy- killing-yuppie- flu-daughter-

died-massive-

morphine-

> > > > overdose.html

> > > >

> > > > the suicide will end up being used as "evidence" of

a

psychiatric

> > > > problem. PWCs go on like sheep, hoping that if they

are just

nice

> > > > enough, submissive enough, then they will be thrown

some

crumbs.

> > > >

> > > > It is the role of psychology to legitimize

denigration; to

turn

> > > > bigotry into a profession. There are many examples:

Drapetomania,

> > > > the refrigerator mother, the employment of

Munchausen by

proxy as

> > a

> > > > way to keep mothers in line, etc. I was minding my

own

business,

> > > > investigating ulcerative colitis, but you just

can't escape

their

> > > > bigoted pronouncements:

> > > >

> > > > "In the majority of the patients studied

psychological

> > abnormalities

> > > > and disorders far beyond the range of individual

differences

in

> > the

> > > > average population were found to antedate the

initial onset

of the

> > > > colitis. In relation to other investigations

control groups of

> > > > patients have been examined by methods which are

identical

with

> > > > those used in the present research. In the

ulcerative colitis

> > > > patients the degree of difference from average

individuals

was so

> > > > gross as to make a special control group

unnecessary. A dated

> > > > clinical history and a dated life history, taken

independently and

> > > > verified from relatives, showed that disturbing

events in the

> > > > patient's life had preceded the onset, return, and

increase of

> > > > symptoms more often than can be due to chance."

> > > >

> > > > quoted from a paper published in the 1938:

> > > >

> > > > http://www.pubmedce ntral.nih.

gov/articlerende r.fcgi?artid=

> > 2211121

> > <http://www.pubmedcentral.nih.gov/articlerender.fcgi?

artid=2211121>

> > > > <http://www.pubmedce ntral.nih.

gov/articlerende r.fcgi?

> > <http://www.pubmedcentral.nih.gov/articlerender.fcgi?>

> > artid=2211121>

> > > >

> > > >

> > > > Ah, psychiatric anomalies supposedly predating

disease onset.

> > Sound

> > > > familiar?:

> > > >

> > > > http://www.ncbi.

nlm.nih.gov/ pubmed/17088506

> > <http://www.ncbi.nlm.nih.gov/pubmed/17088506>

> > > > <http://www.ncbi. nlm.nih.gov/

pubmed/17088506

> > <http://www.ncbi.nlm.nih.gov/pubmed/17088506>>

> > > >

> > > > Ulcerative colitis is an inflammatory condition,

with

recently,

> > and

> > > > clearly demonstrated genetic risk factors. Only

bigots could

> > assert

> > > > a psychiatric cause for bleeding out your butt.

> > However, "Ulcerative

> > > > colitis personality" seems, now, to have gone out

of vogue.

So it

> > > > is not that PWCs employ fashionable diagnoses... .:

> > > >

> > > > http://www.ncbi.

nlm.nih.gov/ pubmed/9456062

> > <http://www.ncbi.nlm.nih.gov/pubmed/9456062>

> > > > <http://www.ncbi. nlm.nih.gov/

pubmed/9456062

> > <http://www.ncbi.nlm.nih.gov/pubmed/9456062>>

> > > >

> > > > ....but that the defamation of patients with

medically

unexplained

> > > > diseases by psychologists reflects the fad of the

times.

> > > >

> > > > Yet PWCs go on saying, "Thank you, sir, may I have

another?",

> > whilst

> > > > tolerating the "Uncle Toms" among us who promote

"stress" as

> > causal,

> > > > and "brain work" as therapeutic.

> > > >

> > > > Who is more pathetic?

> > > >

> > > > Matt

> > > >

> > > >

> > >

> >

> >

> > ----------------------------------------------------------

------

> >

> >

> > No virus found in this incoming message.

> > Checked by AVG - http://www.avg.com

> > Version: 8.0.176 / Virus Database: 270.9.17/1846 - Release

Date:

12/12/2008 18:59

> >

> >

>