This is what it is like to have CNS lyme in @%$@$%!@!* Oklah

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Mockingbird

Posted: Fri Jan 19, 2007 12:47 am

Guest

You are sick, you are ill, and no one listens to you. It is a denial of
experience. Everyone acts and pretends as if you are all right, when
you know that you are not. You KNOW what you are experiencing, and no
one is willing to acknowledge the validity of your experiences..And
then, when you try to get help, everyone ignores you and lies to you
{consciously or subconsciously} and you are left in desperate
straights, because you need help but can't get it anywhere. You might
even run into an aggressive, abusive egotistical doctor who refuses to
acknowledge your suffering -straight from the medical files: {I'm X}

"It appears that the psychiatric evaluation was was not to the depth or
degree that is desirable, perhaps because X was unwilling {not true}
and had recently been hospitalized at G Psychiatric Hospital in H.
Apparently he heard what he wanted to hear {at another clinical
setting}, that there may be some type of organic explanation for his
symptomology rather than psychiatric {as if there is no such thing as
organic mental illness}, but temporal lobe seizures have been diagnosed
by EEG and he has improved with taking drug Y and was started on drug
A....It is my present opinion that it would not be in his best interest
to do a spinal tap to try to confirm or reject his fears of a CNS
infection...the risk would outweigh the benefit. The risk of a false
positive would likely be greater than the risk of actually having an
infection and not doing the testing. In addition, if the testing was
done and is negative, he would simply substitute another fear and
require additional testing to reject those fears."

two weeks later...{by the way I have a journal of my own, written at
the time, that accompanies this timeline, also psych records + other
consults including neuro recs describing the TLE dx in detail}

"X responded to my request for him to come in so that we can visit with
him about his current status. He has been back to F to see Dr. P. He
has seen Dr. W here. He is now taking C rather than A. He is most
concerned about being so tired and he sleeps as much as 10 or 11 hours
a day. He also still has some concern about J{a very rare CNS
condition} and I reminded him and he agreed that the objective risk is
minimal and the risk of testing is greater than the actual risk of
disease...."

By the way, the above doctor actually wrote bible verses on
prescription paper as a 'cure'. a cure that didn't work, and helped
destroy my faith in God in the process.

5.5 years and many shattered relationships later, I had a positive
Spect and + blots.

blah blah blah blah blah...I have @#%@% boxes of this sh-t and that
doesn't include the most revealing records, the psych records which are
hidden from view but are very disturbing. actually I accidentally
managed to get a copy of some of those...would anyone be interested in
that?

OK, I went through YEARS of this mental butchery. You should see the
exchanges I had later on with a psychiatrist, where I was trying to
convince him that he was wrong, and I was right.

I turned out to be right!

This all pops into mind, because now I am in the midst of an intense
relapse, accompanied by serious oscillating delusional and other
neuropsychiatric symptoms, and guess what that means? It means I have
to jump through 5000 hurdles, costing thousands of $$$$ I don't have,
in order to get help. All while I am trying to get a @%@#&^ fix on
reality, which isn't easy. It means I have to f-ing go to NY area docs,
costing thousands of $$$$ I don't have, and then have them convince my
local doc that I need a certain type of therapy. Otherwise, my
insurance network won't cover it if the local GP won't go along and
that is not a f-ing given.

If the local GP doesn't go along, guess what that means? It means I
have to find a new GP, and that could take a period of months!
Meanwhile, my life is a living f-ing hell and I am sleeping 14-18 hours
a day and screaming at the slightest f-ing provocation.

You don't want this to happen to your children. That's why it is
important to change the IDSA regs. Late stage CNS lyme patients deserve
to have access to better options for alleviating symptomology.

the 3rd Man

Posted: Fri Jan 19, 2007 1:54 pm

Guest

Mockingbird wrote:

Quote:

This all pops into mind, because now I am in the midst of an intense
relapse, accompanied by serious oscillating delusional and other
neuropsychiatric symptoms, and guess what that means? It means I have
to jump through 5000 hurdles, costing thousands of $$$$ I don't have,
in order to get help. All while I am trying to get a @%@#&^ fix on
reality, which isn't easy. It means I have to f-ing go to NY area docs,
costing thousands of $$$$ I don't have, and then have them convince my
local doc that I need a certain type of therapy. Otherwise, my
insurance network won't cover it if the local GP won't go along and
that is not a f-ing given.

Where...may I ask...is your family in all of this? I believe that you
have made reference to having some family members or relatives in some
research or medical position...academia of some sort...

And where is Fallon? Where is your therapist?

You know, when you deliberately put out false versions of the
truth...what are we supposed to do, here?

Quote:

You don't want this to happen to your children. That's why it is
important to change the IDSA regs. Late stage CNS lyme patients deserve
to have access to better options for alleviating symptomology.

The IDSA G-U-I-D-E-L-I-N-E-S are NOT...REPEAT...N-O-T "regs".

See if you can understand that.

Mockingbird

Posted: Fri Jan 19, 2007 2:46 pm

Guest

to answer your question, my family {ie my parents} of course will have
to bail me out of this situation. Remember two things...one....the doc
I see is in the NY area, and that is not cheap and that is not in my
insurance network.

as far as my relative and extended family goes, uh, well that's a
complex situation, but let's just say he's not an ID specialist, a
neurologist, a psychiatrist, or an LLMD. I was misdiagnosed with TLE at
his university after fairly extensive examination including psychiatric
and neurologic and other areas also. I spent a couple of years fighting
this misdiagnosis, and later negative encounters damaged my
relationship with all of these people.

If I put out a fake version of the truth, whatever the truth might be,
it was because I was trying to get a reaction out of others, which is
EXACTLY what they are up to, so I don't feel badly about it.

I have a therapist locally, but I can't see him right now. It's a very
frustrating situation.

A lot of people are putting out fake versions of the truth. I'm not
alone in terms of that sort of behavior.

the 3rd Man wrote:

Quote:

Mockingbird wrote:

This all pops into mind, because now I am in the midst of an intense
relapse, accompanied by serious oscillating delusional and other
neuropsychiatric symptoms, and guess what that means? It means I have
to jump through 5000 hurdles, costing thousands of $$$$ I don't have,
in order to get help. All while I am trying to get a @%@#&^ fix on
reality, which isn't easy. It means I have to f-ing go to NY area docs,
costing thousands of $$$$ I don't have, and then have them convince my
local doc that I need a certain type of therapy. Otherwise, my
insurance network won't cover it if the local GP won't go along and
that is not a f-ing given.

Where...may I ask...is your family in all of this? I believe that you
have made reference to having some family members or relatives in some
research or medical position...academia of some sort...

And where is Fallon? Where is your therapist?

You know, when you deliberately put out false versions of the
truth...what are we supposed to do, here?

You don't want this to happen to your children. That's why it is
important to change the IDSA regs. Late stage CNS lyme patients deserve
to have access to better options for alleviating symptomology.

The IDSA G-U-I-D-E-L-I-N-E-S are NOT...REPEAT...N-O-T "regs".

See if you can understand that.

the 3rd Man

Posted: Fri Jan 19, 2007 2:57 pm

Guest

Mockingbird wrote:

Quote:

Well, the reason I asked, is that your posts sounded...well,
distressed...more than usual, anyway...and in those situations, you
would probably be well-advised to turn to your family...especially if
one of those family members has medical expertise and/or connections.

That gives you a considerable advantage that most of us do not share.

Quote:

If I put out a fake version of the truth, whatever the truth might be,
it was because I was trying to get a reaction out of others, which is
EXACTLY what they are up to, so I don't feel badly about it.

I don't...and have not. That's the truth. I really don't care if you,
or anyone else believes it. I can only tell you the truth.

Quote:

I have a therapist locally, but I can't see him right now. It's a very
frustrating situation.

I assume there is a sort of 'crisis intervention' option available to
you? Or someone you could see in his/her absence? (I really am not
familiar with this sort of thing).

Quote:

A lot of people are putting out fake versions of the truth. I'm not
alone in terms of that sort of behavior.

Well, you certainly are somewhat omniscient, though...to know who is
telling the truth and who is not...who is naughty and nice...who is
guilty and not. You got Tarot cards or sumthin'?

In your regard...I am merely noting inconsistent statements that i have
observed...and a tendency toward...exaggeration, shall we say?

the 3rd Man

Posted: Fri Jan 19, 2007 3:36 pm

Guest

Mockingbird wrote:

Quote:

oh, sometimes I exaggerate, sometimes I underplay, sometimes I
fabricate, sometimes I completely omit..it depends on what you are
referring to...people around me are all doing the same thing!

Well, you seem to think so, anyway.

Quote:

we live in a world full of liars!

Not completely surprising that you hold that opinion...since you admit
to being somewhat loose with the truth, yourself.

Have you ever considered that might be a rationalization for your own
prevarication?

Quote:

If you really want to know the truth about something, I'll send you my
records! I can even get a lawyer to subpoena my psychiatric records!

No, thanks.

Quote:

oh, my family? LMAO. Yeah, I have what you could call a relationship
with my mom. other than that, it's pretty empty. my medical relatives?
Lol. you haven't done your homework.

I have NO idea what this could possibly mean. WHY would you think I
would bother?

I haven't seen them in 10 years,

Quote:

and that is for directly lyme-related reasons. my last visit I was
insane, and I wasn't properly diagnosed. a lot of ill-will came from
that. I don't blame them and I don't think they blame me, but until
allen steere gets his ass roasted ona fucking barbecue pit, these
individuals who also have massive steer-like egos aren't going to be
able to accept exactly what happened.

Well, I wish you and others would be somewhat more willing to at least
entertain, consider, other possible explanations for your distress.

Seems to me that many within the "chronic' community have an almost
fanatical, religious-type obsessive BELIEF (and that is what it really
is) that the symptoms are being driven by continuing and persistent
infection.

That MAY be true. There is considerable scientific evidence for that
proposition.

Might not be.

But when the BELIEF becomes so dominant as to exclude other possible
explanations...well...you ahve to understand that the TRUTH might be
excluded as well.

Open minds are a "good thing".

Quote:

my therapist is a cognitive therapist. 1.5 years of therapy just went
down the fucking drain. he can't help me with medical issues, I think
you understand that. He's not a psychiatrist. I do see psychiatrist{s}
but that isn't local.

Well, I am only raising the subject in context of whether or not you
have someone that you can talk these things out with...if not...it
might be a good idea to try to find someone...and perhaps your family
can assist there.

Quote:

.....................................................................

by the way, you mentioned my nasty attitude towards women. well, guess
what. I didn't always behave like that. It took about 25 disturbing
incidents and lengthy events to bring the attitude about. I love people
and I enjoy as you say 'giving'. I was a romantic idealist!

And that makes you vulnerable.

but then I

Quote:

discovered that my ideals weren't shared...by almost anyone!

And that has made you cynical.

We live in

Quote:

a world of backstabbing whores and lying cunts! It's all about how much
money you make and what you can do for them! I'm not personally a
selfish person!

I'm just over the edge! Fuck'em!

Well, the trick really is to maintain your devotion to Love and all
that...romance...in the face of heartbreak and betrayal, isn't it?

Quote:

eye candy! that's all women these days are anymore, tits and ass,
flashy clothes, and nothing underneath!

Uh-huh...I assume by writing that, that you do understand the problem...

Mockingbird

Posted: Fri Jan 19, 2007 5:28 pm

Guest

I'm not debating you on certain points...right now, the last few days,
I've been overly emotional, alternating between very pissed off,
understanding, quesitoning reality, delusional constructs, etc. and a
little ill physically and I'm not exactly rational. even when I am very
unstable, usually I can at least entertain the possibility.

now, as far as the chronic stuff goes, you're absolutely right. and, in
my case, I have a complication because I have a pituitary disorder
which clouds the picture. but pituitary disorders don't cause nerve
conduction issues, parasthesias, encephalopathies, depersonalization,
paralyzing weakness and fatigue etc. they CAN result in other
neurospych syndromes which is a complicating factor, no question about
it. look it up.

I suspect based on experience that I am having a relapse of this stuff.
It's abundantly obvious, in fact. as far as objective evidence, I don't
know. a spect scan I am guessing would show something, as would the
nerve studies. as far as serology, I've had so much abx etc. that it is
rendered useless. a negative result, and steere admits this, means
nothing, because seronegative disease can occur after abx therapy. and
that's using the steere definition of serology, which I don't think is
the best personally.

one problem with OBJECTIVE evidence is there are many areas of the body
that have not been adequately explored, or explored at all, for
OBJECTIVE evidence of chronic Bb infection...spleen...bone
marrow...liver...brain...and look at the lit on brucellosis and some
other diseases, and you can see that there are chronic cases with
negative serology proven only either at autopsy or on deep tissue
biopsy.

brain biopsies are dangerous. what would a bone marrow probe show? I
don't know. I'm betting dollars to donuts that if someone looked at my
bone, they would find something, I'm saying this b/c of certain
symptoms I experience...but then again, maybe not. but see, the
problem is, no one is looking at that stuff, and no one will, because
there is no precedent. the precedent-setters have been reluctant to set
a precedent. why? one can only guess.

Of course I'm vulnerable. If I wasn't vulnerable, I wouldn't be
spouting 7800 different versions of bullshit everywhere. I did NOT used
to be like this. My experiences have shaped me, and now I live in my
own little world. I keep hoping to meet an angel, but instead I keep
meeting angles. Sharp pointy obtuse angles.

And despite what you might think, with me it is NOT about what is on
the outside of a person. It is what is on the inside.

#%^#@$!^#$#!$!

the 3rd Man wrote:

Quote:

Mockingbird wrote:

oh, sometimes I exaggerate, sometimes I underplay, sometimes I
fabricate, sometimes I completely omit..it depends on what you are
referring to...people around me are all doing the same thing!

Well, you seem to think so, anyway.

we live in a world full of liars!

Not completely surprising that you hold that opinion...since you admit
to being somewhat loose with the truth, yourself.

Have you ever considered that might be a rationalization for your own
prevarication?

If you really want to know the truth about something, I'll send you my
records! I can even get a lawyer to subpoena my psychiatric records!

No, thanks.

oh, my family? LMAO. Yeah, I have what you could call a relationship
with my mom. other than that, it's pretty empty. my medical relatives?
Lol. you haven't done your homework.

I have NO idea what this could possibly mean. WHY would you think I
would bother?

I haven't seen them in 10 years,
and that is for directly lyme-related reasons. my last visit I was
insane, and I wasn't properly diagnosed. a lot of ill-will came from
that. I don't blame them and I don't think they blame me, but until
allen steere gets his ass roasted ona fucking barbecue pit, these
individuals who also have massive steer-like egos aren't going to be
able to accept exactly what happened.

Well, I wish you and others would be somewhat more willing to at least
entertain, consider, other possible explanations for your distress.

Seems to me that many within the "chronic' community have an almost
fanatical, religious-type obsessive BELIEF (and that is what it really
is) that the symptoms are being driven by continuing and persistent
infection.

That MAY be true. There is considerable scientific evidence for that
proposition.

Might not be.

But when the BELIEF becomes so dominant as to exclude other possible
explanations...well...you ahve to understand that the TRUTH might be
excluded as well.

Open minds are a "good thing".

my therapist is a cognitive therapist. 1.5 years of therapy just went
down the fucking drain. he can't help me with medical issues, I think
you understand that. He's not a psychiatrist. I do see psychiatrist{s}
but that isn't local.

Well, I am only raising the subject in context of whether or not you
have someone that you can talk these things out with...if not...it
might be a good idea to try to find someone...and perhaps your family
can assist there.

.....................................................................

by the way, you mentioned my nasty attitude towards women. well, guess
what. I didn't always behave like that. It took about 25 disturbing
incidents and lengthy events to bring the attitude about. I love people
and I enjoy as you say 'giving'. I was a romantic idealist!

And that makes you vulnerable.

but then I
discovered that my ideals weren't shared...by almost anyone!

And that has made you cynical.

We live in
a world of backstabbing whores and lying cunts! It's all about how much
money you make and what you can do for them! I'm not personally a
selfish person!

I'm just over the edge! Fuck'em!

Well, the trick really is to maintain your devotion to Love and all
that...romance...in the face of heartbreak and betrayal, isn't it?

eye candy! that's all women these days are anymore, tits and ass,
flashy clothes, and nothing underneath!

Uh-huh...I assume by writing that, that you do understand the problem...

the 3rd Man

Posted: Fri Jan 19, 2007 6:47 pm

Guest

Mockingbird wrote:

Quote:

Of course I'm vulnerable. If I wasn't vulnerable, I wouldn't be
spouting 7800 different versions of bullshit everywhere. I did NOT used
to be like this. My experiences have shaped me, and now I live in my
own little world. I keep hoping to meet an angel, but instead I keep
meeting angles. Sharp pointy obtuse angles.

And despite what you might think, with me it is NOT about what is on
the outside of a person. It is what is on the inside.

What I am trying to say to you is simple...if you want HELP, you have

to ask for it.

And first, you have to admit that you need it to yourself.

And you need to work WITH people...(even doctors)...and NOT tell them
they're all wrong when you don't hear what you want to hear. Try to
keep an open mind. Raeloize that your judgement may not be the best
right now.

Take a GOOD look at Kathleen...ask yourself if you really want to
windup like her...blaming everyone imaginable for the mess her life has
become...obsessed and driving all away who would be willing to help
her.

Sorry if this is a bit direct...but since you posted this stuff and
addressed it to me...I will tell you that my advice is to go to your
family and ask for their HELP.

Sorry, but that's the best advice I can think of.

the 3rd Man

Posted: Fri Jan 19, 2007 6:54 pm

Guest

the 3rd Man wrote:

Mockingbird wrote:

"Of course I'm vulnerable. If I wasn't vulnerable, I wouldn't be
spouting 7800 different versions of bullshit everywhere. I did NOT used
to be like this. My experiences have shaped me, and now I live in my
own little world. I keep hoping to meet an angel, but instead I keep
meeting angles. Sharp pointy obtuse angles".

And despite what you might think, with me it is NOT about what is on
the outside of a person. It is what is on the inside.

What I am trying to say to you is simple...if you want HELP, you have
to ask for it.

And first, you have to admit that you need it to yourself.

And you need to work WITH people...(even doctors)...and NOT tell them
they're all wrong when you don't hear what you want to hear. Try to
keep an open mind. Realize that your judgement may not be the best
right now.

Take a GOOD look at Kathleen...ask yourself if you really want to
windup like her...blaming everyone imaginable for the mess her life
has
become...obsessed and driving all away who would be willing to help
her.

Sorry if this is a bit direct...but since you posted this stuff and
addressed it to me...I will tell you that my advice is to go to your
family and ask for their HELP.

Sorry, but that's the best advice I can think of.

Mockingbird

Posted: Fri Jan 19, 2007 7:41 pm

Guest

Oh, I'll go to my family. I will say " we need to make arrangements for
a new form of therapy wrt lyme".

Now, what happens then is I have to jump through 3000 hoops. my LLMD
will switch therapies. If the LLMD wants to go IV, things get about
1000X more difficult. and then..if someone wants 'objective evidence'
then we'll have to make arrangements for SPECT and other expensive
nerve tissue testing. things I can't afford, BTW.

please keep in mind, #3, that I have been through all of this and more
a zillion times before. I already HAVE the psychological and
neuropsychiatric bases covered. You're acting as if I blame all of my
problems directly on neurolyme and that is just not the case. I might
harp a lot on it because that is the topic of this forum, but I do have
significant non-lyme problems too. The CNS lyme predominates though,
and makes everything much much worse. If I have to prove that I am
having continued neurolyme problems and need at minimum a switch in
meds, then I will do that. I know this disease like the back of my
hand. I know what is going on here. Can I prove it? Yes, I've done that
before.

It's just a hugely gigantic pain in the ass, that's all.

so my question to you is...why are you saying "you need to admit to
yourself"??? LMAO. that is not the issue here. the issue is getting
other people to understand."hear what I want to hear"?

You're just trying to piss me off. And I'm sorry, but in the case of
lyme {and actually, a couple of other very significant health issues} I
can demonstrably prove to you that for many many years, I was right,
and those fuckheads were wrong. Unfortunately it destroyed me in the
process. Since this was during my 'formative years', the damage was
magnified. Now I'm chronically ill, and for some f-d up reason,
someone{s} just wants me to be even more sick.

I've got the scientific data. Objective evidence. So I just don't
really trust any of these brainwashed MDs anymore, beyond my LLMD and a
couple of others.

Damn, you are the king of pissing people off. You should meet the
queen!

as far as kathleen goes, it's basically a fact that neurolymies and
organic mental illness patients in general suffer from OCD/persevering
thinking. I struggle with that myself.

the 3rd Man wrote:

Quote:

the 3rd Man

Posted: Fri Jan 19, 2007 9:00 pm

Guest

Mockingbird wrote:

Quote:

Damn, you are the king of pissing people off. You should meet the
queen!

Yes, well, sorry if what I said doesn't please you. Said I was
sorry...but that's my advice.

Maybe you should try over at Lymenet. They tend to be much more
supportive, actually.

Look...I really am not all that familiar with the deatils of your
situation, so what I have been saying to you, I think, was to be
understood in very general terms,only...and that is...if you are
experiencing some sort of crisis...go to your family...don't look for
guidance from strangers on the internet.

Explain what is going on with you...ask their cousel and
advice...LISTEN to them and be willing to accept advice.

Don't tell them why they are wrong and how you can prove everyone else
is wrong.

Quote:

as far as kathleen goes, it's basically a fact that neurolymies and
organic mental illness patients in general suffer from OCD/persevering
thinking. I struggle with that myself.

Kathleen needs help.

She has ben told so many times. And by friends.

She spends her days in an endless exchange of insults and taunts with
some equally pathetic sadistic moron who she seems to think is
"McSweegan", a microbiologist and published author...apparently never
noticing that the jerkoff can't spell...or doesn't seem to realize that
the past tense of "I saw" is not "I seen"...or understands the proper
use of an apostrophe.

She is blaming all the misfortune in her life on conspiracies of
others...and it's sad enough...but newbies sometimes don't catch
on...they think she must know something.

She doesn't.

Look...nice talkin' to you and all...but I really need to get out of
here...I've got some laundry to do...appreciate it if you will just let
me bow out, now...

....have a nice life...okay?

the 3rd Man

Posted: Fri Jan 19, 2007 9:13 pm

Guest

the 3rd Man wrote:

Quote:

Mockingbird wrote:

Damn, you are the king of pissing people off. You should meet the
queen!

Yes, well, sorry if what I said doesn't please you. Said I was
sorry...but that's my advice.

Maybe you should try over at Lymenet. They tend to be much more
supportive over there, actually.

Look...I really am not all that familiar with the details of your
persoanl or family
situation, so what I have been saying to you, I think, was to be
understood in very general terms,only...and that is...if you are
experiencing some sort of crisis...go to your family...don't look for
guidance from strangers on the internet.

Explain what is going on with you...ask their counsel and
advice...LISTEN to them and be willing to accept advice.

Don't tell them why they are wrong and how you can prove everyone else
is wrong.

"as far as kathleen goes, it's basically a fact that neurolymies and
organic mental illness patients in general suffer from OCD/persevering
thinking. I struggle with that myself".

Kathleen needs help.

She has ben told so many times. And by friends.

She spends her days in an endless exchange of insults and taunts with
some equally pathetic sadistic moron who she seems to think is
"McSweegan", a microbiologist and published author...apparently never
noticing that the jerkoff can't spell...or doesn't seem to realize
that
the past tense of "I saw" is not "I seen"...or understands the proper
use of an apostrophe.

She is blaming all the misfortune in her life on conspiracies of
others...and it's sad enough...but newbies sometimes don't catch
on...they think she must know something.

She doesn't.

Look...nice talkin' to you and all...but I really need to get out of
here...I've got some laundry to do...appreciate it if you will just
let
me bow out, now...

...have a nice life...okay?

Mockingbird

Posted: Sat Jan 20, 2007 12:01 pm

Guest

Seems to me that many within the "chronic' community have an almost
fanatical, religious-type obsessive BELIEF (and that is what it really
is) that the symptoms are being driven by continuing and persistent
infection.

That MAY be true. There is considerable scientific evidence for that
proposition.

Might not be.

But when the BELIEF becomes so dominant as to exclude other possible
explanations...well...you ahve to understand that the TRUTH might be
excluded as well.

........................................................................................................................

this comment has been pissing me off all night. not because it came out
of your mouth, but because of the general idea behind it. one possible
interpretation is that the reports and sufferings of chronic lyme
patients do not in fact have validity until it is demonstrated in a
laboratory that it is a persisting infection. The belief of persisting
infection is dominant in large part because this, as a source of
symptomology, HAS NOT BEEN ADEQUATELY EXPLORED. Therefore, a lyme
patient is left to wonder "what in the hell is going on" if he or she
has continued illness. Especially if he or she has any insight at all
into the scientific squabbles or the incredibly f-d up shenanigans
taking place wrt politics and sh-t like that.

Again, this disease, which is very bizarre, has not even been close to
being adequately described...and you can look at the lit and tell there
has been some serious BSing and dice rolling by certain scientists. and
this might be continuing, also. It's possible that there is an entire
body of fabricated bogus literature out there, while the real science
remains behind closed doors.

If you want to exclude persisting infection {which does happen} as the
dominant cause of 'chronic lyme', then it has to be excluded in the
literature and through scientific study first. and this has not been
done.

there seems to be a pattern of conscious avoidance. someone who
complains of persisting infection, they might be right. jesus...look at
the literature on chronic brucellosis. There were people who were ill
for decades and were told that it was all in their heads, and then
suddenly they get a + biopsy for brucellar osteomyelitis, in abscence
of serology. In fact, back in the 50's, a brucella researcher who had
been infected in the laboratory wrote a very disturbing article to a
journal about her own decades-long experiences with the medical system.
Apparently things haven't changed.

That COULD be happening with lyme in the US. No one knows, because a
thousand different angles haven't been explored. Why?

BTW, the truth in such a complex disease is probably not just one
answer. there are probably many truths, many answers, differing from
patient to patient.

the 3rd Man wrote:

Quote:

the 3rd Man wrote:
Mockingbird wrote:

Damn, you are the king of pissing people off. You should meet the
queen!

Yes, well, sorry if what I said doesn't please you. Said I was
sorry...but that's my advice.

Maybe you should try over at Lymenet. They tend to be much more
supportive over there, actually.

Look...I really am not all that familiar with the details of your
persoanl or family
situation, so what I have been saying to you, I think, was to be
understood in very general terms,only...and that is...if you are
experiencing some sort of crisis...go to your family...don't look for
guidance from strangers on the internet.

Explain what is going on with you...ask their counsel and
advice...LISTEN to them and be willing to accept advice.

Don't tell them why they are wrong and how you can prove everyone else
is wrong.

"as far as kathleen goes, it's basically a fact that neurolymies and
organic mental illness patients in general suffer from OCD/persevering
thinking. I struggle with that myself".

Kathleen needs help.

She has ben told so many times. And by friends.

She spends her days in an endless exchange of insults and taunts with
some equally pathetic sadistic moron who she seems to think is
"McSweegan", a microbiologist and published author...apparently never
noticing that the jerkoff can't spell...or doesn't seem to realize
that
the past tense of "I saw" is not "I seen"...or understands the proper
use of an apostrophe.

She is blaming all the misfortune in her life on conspiracies of
others...and it's sad enough...but newbies sometimes don't catch
on...they think she must know something.

She doesn't.

Look...nice talkin' to you and all...but I really need to get out of
here...I've got some laundry to do...appreciate it if you will just
let
me bow out, now...

...have a nice life...okay?

the 3rd Man

Posted: Sat Jan 20, 2007 12:27 pm

Guest

Mockingbird wrote:

Quote:

NO. NO. NO. Not what I said.

If you look through the literature, you can find all kinds of
statements from (some of) the "boys", in essence, saying that we really
don't know what these people are suffering from...what the cause of
their symptoms is...but we don't deny their suffering. (I think
Klempner, after the antibiotic trial...and Wormser, recently).

You, and other Lyme patients, in my opinion, make a big mistake when
you talk like that. You look like fools in front of the media.

The issue is CAUSE AND EFFECT. What causes the symptoms after
"appropriate" antibiotic treatment?

Permanent tissue damage is one possibility.

Autoimmune reaction is another.

Another disease process altogether...have you ever noticed, on message
boards, that there is considerable variance in symptoms?

But I did not mean the above as an exclusively generalized
principle...but also, to my mind, a way for an individual to think
about their own situation...

....in other words, if you get too locked-in to the "persistent
relapsing infection" option...

....it is POSSIBLE that the REAL underlying cause of the person's
illness will be ultimately overlooked and discarded.

But that, in my opinion...ALSO includes keeping an open mind as to the
possibility of continuing infection as a cause.

I said so, in the entire quotation and added that there is considerable
scientific evidence to support that.

Maybe you get pissed off too easily.

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