Pat Smith and the Reign of Error

Pat Smith and the Reign of Error

Does anyone know what the LDA actually accomplishes through all this
agitation and issuance of "action alerts"?

I mean, since I have been watching...I don't think I have seen them do
anything of substance, except continually raise money for the defense
of doctors who were under (mostly deserved) scrutiny by state practice
review boards.

I also have seen various posters whose opinions I trust, suggest that
CALDA and the LDA "enabled" the Klempner study which seemingly damaged
the longterm antibiotic cause so badly.

And then the LDA gave Fallon a lot of money to do a study...and he
said his results confirmed what Klempner said, in essence.

And if this most recent stunt with AG Blumenthal is actually a
"victory"...well, hell, I wonder what a defeat would look like?

And ALL the attempts to pass Federal legislation (although I have NO
idea why anyone thinks this is a good idea, in the first place)...no
success whatever, right? No clue.

What are they doing? What is their contribution, here? Aside from
waving signs and shouting like absolute fools? Making Lyme patients
look crazy and making physicians afraid of the words "Lyme disease"?
And the never-ending stream of "press releases"...

Here's what their website says:

"The LDA has many achievements. One in particular, which is shared
with the Greenwich Lyme Disease Task Force, is the creation of the
Columbia Lyme Disease Research Center. View the press release for the
event that raised awareness and money for this center. Find out who
attended that night... many famous media personnel! Also, feel free to
take a look through the following letters of support written by
various, influential officials and other supporters".


There you go...we measure our success by how much poorer our
contriburtors are...

...(oh, sorry...I forgot about how we "raised awareness"...that seems
to be a big agenda item for them. Sort of karma-cosmic, you know. My
bad...I guess my awareness still needs to be raised).

What bullshit.

Re: Pat Smith and the Reign of Error

On May 20, 10:14 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:


Oh my...this is just awful...how NOT to lobby for your cause.

Truly embarrassing.

http :// www .youtube,com /watch?v=13bj 6L1hbI

Re: Pat Smith and the Reign of Error

On May 20, 9:32 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> On May 20, 10:14 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
> Oh my...this is just awful...how NOT to lobby for your cause.
>
> Truly embarrassing.
>
> http :// www .youtube,com /watch?vbj 6L1hbI

Terrible....but all in all, even though is not always the case, I
think that something is better than nothing. Is good to make noise (I
agree that there are much better ways to go about this) but the media
and health officials will have to acknowledge that something is going
on. That is not just a few with deluded minds.

compare Marie McQuhae's story (Canada):

<object width="425" height="355"><param name="movie" value=" http ://
www .youtube,com /v/qpnyMIPglLI&hl=en"></param><param name="wmode"
value="transparent"></param><embed src=" http :// www .youtube,com /v/
qpnyMIPglLI&hl=en" type="application/x-shockwave-flash"
wmode="transparent" width="425" height="355"></embed></object>

with Jodi's story (Australia):

<object width="425" height="355"><param name="movie" value=" http ://
www .youtube,com /v/zQ0FyO2c1tU&hl=en"></param><param name="wmode"
value="transparent"></param><embed src=" http :// www .youtube,com /v/
zQ0FyO2c1tU&hl=en" type="application/x-shockwave-flash"
wmode="transparent" width="425" height="355"></embed></object>

Re: Pat Smith and the Reign of Error

On May 20, 9:32 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> On May 20, 10:14 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
> Oh my...this is just awful...how NOT to lobby for your cause.
>
> Truly embarrassing.
>
> http :// www .youtube,com /watch?vbj 6L1hbI


Terrible....but all in all, even though is not always the case, I
think that something is better than nothing. Is good to make noise (I
agree that there are much better ways to go about this) but the media
and health officials will have to acknowledge that something is going
on. That is not just a few with deluded minds.

Compare Marie McQuhae's story (Canada):

http :// www .youtube,com /watch?v=qpnyMIPglLI

with Jodi's (Australia):

http :// www .youtube,com /watch?v=zQ0FyO2c1tU

Re: Pat Smith and the Reign of Error

On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
> Terrible....but all in all, even though is not always the case, I
> think that something is better than nothing. Is good to make noise (I
> agree that there are much better ways to go about this) but the media
> and health officials will have to acknowledge that something is going
> on. That is not just a few with deluded minds.
>

I am responding here to the text...haven't seen the videos (I am still
on dial-up, takes forever, can you summarize, please)? What it is that
you wish me to see?

I take no issue with what you say. Patients (myself included) are
suffering and don't have all the answers that they need to secure
appropriate healthcare. No denial of the issue or the problem...but
with the approach.

But I seriously doubt that passing legislation is the answer...nor is
seeking redress in Court a viable option, either.

It simply is an issue of scientific/medical controversy, to my
mind...and despite watching years of outrageous accusations of
wrongdoing being hurled at every opportunity...I have yet to see a
single instance where any facts lend credence to the charges.


What I am saying is outrageous here is Ms. Smith's behavior.

In my opinion, this is just appalling and extremely disrespectful. A
disgrace.

And an embarrassment.

Just shouting and demanding and getting in your face is just...dumb.

Re: Pat Smith and the Reign of Error

On May 21, 6:55 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
>
>
> > Terrible....but all in all, even though is not always the case, I
> > think that something is better than nothing. Is good to make noise (I
> > agree that there are much better ways to go about this) but the media
> > and health officials will have to acknowledge that something is going
> > on. That is not just a few with deluded minds.
>
> I am responding here to the text...haven't seen the videos (I am still
> on dial-up, takes forever, can you summarize, please)? What it is that
> you wish me to see?
>
> I take no issue with what you say. Patients (myself included) are
> suffering and don't have all the answers that they need to secure
> appropriate healthcare. No denial of the issue or the problem...but
> with the approach.
>
> But I seriously doubt that passing legislation is the answer...nor is
> seeking redress in Court a viable option, either.
>
> It simply is an issue of scientific/medical controversy, to my
> mind...and despite watching years of outrageous accusations of
> wrongdoing being hurled at every opportunity...I have yet to see a
> single instance where any facts lend credence to the charges.
>
> What I am saying is outrageous here is Ms. Smith's behavior.
>
> In my opinion, this is just appalling and extremely disrespectful. A
> disgrace.
>
> And an embarrassment.
>
> Just shouting and demanding and getting in your face is just...dumb.

I'm with you 3rd, I agree with everything you have said so far. About
the videos, I really think you should check them out, maybe let them
load overnight? It won't be the same if I just describe them to you.

Re: Pat Smith and the Reign of Error

On May 21, 11:16 pm, chronichel...@yahoo,com wrote:
> On May 21, 6:55 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
>
>
>
>
> > On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
> > > Terrible....but all in all, even though is not always the case, I
> > > think that something is better than nothing. Is good to make noise (I
> > > agree that there are much better ways to go about this) but the media
> > > and health officials will have to acknowledge that something is going
> > > on. That is not just a few with deluded minds.
>
> > I am responding here to the text...haven't seen the videos (I am still
> > on dial-up, takes forever, can you summarize, please)? What it is that
> > you wish me to see?
>
> > I take no issue with what you say. Patients (myself included) are
> > suffering and don't have all the answers that they need to secure
> > appropriate healthcare. No denial of the issue or the problem...but
> > with the approach.
>
> > But I seriously doubt that passing legislation is the answer...nor is
> > seeking redress in Court a viable option, either.
>
> > It simply is an issue of scientific/medical controversy, to my
> > mind...and despite watching years of outrageous accusations of
> > wrongdoing being hurled at every opportunity...I have yet to see a
> > single instance where any facts lend credence to the charges.
>
> > What I am saying is outrageous here is Ms. Smith's behavior.
>
> > In my opinion, this is just appalling and extremely disrespectful. A
> > disgrace.
>
> > And an embarrassment.
>
> > Just shouting and demanding and getting in your face is just...dumb.
>
> I'm with you 3rd, I agree with everything you have said so far. About
> the videos, I really think you should check them out, maybe let them
> load overnight? It won't be the same if I just describe them to you.- Hide quoted text -
>
> - Show quoted text -

Okay, thanks.

I'll try.

Re: Pat Smith and the Reign of Error

On May 21, 11:16 pm, chronichel...@yahoo,com wrote:
> On May 21, 6:55 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
>
>
>
>
> > On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
> > > Terrible....but all in all, even though is not always the case, I
> > > think that something is better than nothing. Is good to make noise (I
> > > agree that there are much better ways to go about this) but the media
> > > and health officials will have to acknowledge that something is going
> > > on. That is not just a few with deluded minds.
>
> > I am responding here to the text...haven't seen the videos (I am still
> > on dial-up, takes forever, can you summarize, please)? What it is that
> > you wish me to see?
>
> > I take no issue with what you say. Patients (myself included) are
> > suffering and don't have all the answers that they need to secure
> > appropriate healthcare. No denial of the issue or the problem...but
> > with the approach.
>
> > But I seriously doubt that passing legislation is the answer...nor is
> > seeking redress in Court a viable option, either.
>
> > It simply is an issue of scientific/medical controversy, to my
> > mind...and despite watching years of outrageous accusations of
> > wrongdoing being hurled at every opportunity...I have yet to see a
> > single instance where any facts lend credence to the charges.
>
> > What I am saying is outrageous here is Ms. Smith's behavior.
>
> > In my opinion, this is just appalling and extremely disrespectful. A
> > disgrace.
>
> > And an embarrassment.
>
> > Just shouting and demanding and getting in your face is just...dumb.
>
> I'm with you 3rd, I agree with everything you have said so far. About
> the videos, I really think you should check them out, maybe let them
> load overnight? It won't be the same if I just describe them to you.- Hide quoted text -
>
> - Show quoted text -

Okay...I managed to see them both.

But I'm afraid that I still don't know what your point is. Either I am
dim (distinct possibility)...or it may not be as obvious to others as
you may suspect.

Yes, there are similarities between the two cases, I guess.

But would you care to elaborate on what you see as the issue, there?

Re: Pat Smith and the Reign of Error

On May 22, 7:44 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> On May 21, 11:16 pm, chronichel...@yahoo,com wrote:
>
>
>
> > On May 21, 6:55 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
> > > On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
> > > > Terrible....but all in all, even though is not always the case, I
> > > > think that something is better than nothing. Is good to make noise (I
> > > > agree that there are much better ways to go about this) but the media
> > > > and health officials will have to acknowledge that something is going
> > > > on. That is not just a few with deluded minds.
>
> > > I am responding here to the text...haven't seen the videos (I am still
> > > on dial-up, takes forever, can you summarize, please)? What it is that
> > > you wish me to see?
>
> > > I take no issue with what you say. Patients (myself included) are
> > > suffering and don't have all the answers that they need to secure
> > > appropriate healthcare. No denial of the issue or the problem...but
> > > with the approach.
>
> > > But I seriously doubt that passing legislation is the answer...nor is
> > > seeking redress in Court a viable option, either.
>
> > > It simply is an issue of scientific/medical controversy, to my
> > > mind...and despite watching years of outrageous accusations of
> > > wrongdoing being hurled at every opportunity...I have yet to see a
> > > single instance where any facts lend credence to the charges.
>
> > > What I am saying is outrageous here is Ms. Smith's behavior.
>
> > > In my opinion, this is just appalling and extremely disrespectful. A
> > > disgrace.
>
> > > And an embarrassment.
>
> > > Just shouting and demanding and getting in your face is just...dumb.
>
> > I'm with you 3rd, I agree with everything you have said so far. About
> > the videos, I really think you should check them out, maybe let them
> > load overnight? It won't be the same if I just describe them to you.- Hide quoted text -
>
> > - Show quoted text -
>
> Okay...I managed to see them both.
>
> But I'm afraid that I still don't know what your point is. Either I am
> dim (distinct possibility)...or it may not be as obvious to others as
> you may suspect.
>
> Yes, there are similarities between the two cases, I guess.
>
> But would you care to elaborate on what you see as the issue, there?

Well my point is that (and this is my opinion),a lot of people
(specially in industrialized countries) are experiencing severe
symptoms/illness that can't just be dismissed as psychosomatic.
Whether is it chronic lyme or not it, this "epidemic" (particularly in
the U.S, Canada and the U.K) should be of concern for public health
officials. In other words, I can see a question arising on this regard
(by politicians, health officials etc) such as : Well, if is not lyme
why are these young healthy people just suddenly becoming so ill?

I see now just from anecdotal evidence (personal as well) that it
can't just be a few people with nothing else to do. I personally don't
believe in chronic lyme as is described by many, I however do believe
in persistence of the bacteria such that it would present as a
relapsing condition. I'm also certain about immune dysfunction that
can be caused by the mimicry of the ospA antigen with certain tissue
and also a dis regulation directly affecting normal cytokine function.

What's interesting is that in Marie McQuhae's case their parents are
convinced that her daughter has chronic lyme, and they alluded to
their certainty based on test results from american labs, I'm going to
go out on a limb and guess that these results were from labs such as:
Igenex, Fry, or Bowen.

In other words, even if the approach was wrong, I still think that
this whole campaign is beneficial. At the very least I have heard from
other physicians their interest in this phenomenon and most of them
agree is not chronic lyme but are intrigued with this whole
controversy. At least one expert in I.D back in Connecticut has been
very interested in finding out why this all came about and he agrees
is not a matter of just a few people with psychosomatic symptoms.

Re: Pat Smith and the Reign of Error

On May 22, 1:12 pm, chronichel...@yahoo,com wrote:
> On May 22, 7:44 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
>
>
> > On May 21, 11:16 pm, chronichel...@yahoo,com wrote:
>
> > > On May 21, 6:55 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
>
> > > > On May 21, 7:53 pm, chronichel...@yahoo,com wrote:
>
> > > > > Terrible....but all in all, even though is not always the case, I
> > > > > think that something is better than nothing. Is good to make noise (I
> > > > > agree that there are much better ways to go about this) but the media
> > > > > and health officials will have to acknowledge that something is going
> > > > > on. That is not just a few with deluded minds.
>
> > > > I am responding here to the text...haven't seen the videos (I am still
> > > > on dial-up, takes forever, can you summarize, please)? What it is that
> > > > you wish me to see?
>
> > > > I take no issue with what you say. Patients (myself included) are
> > > > suffering and don't have all the answers that they need to secure
> > > > appropriate healthcare. No denial of the issue or the problem...but
> > > > with the approach.
>
> > > > But I seriously doubt that passing legislation is the answer...nor is
> > > > seeking redress in Court a viable option, either.
>
> > > > It simply is an issue of scientific/medical controversy, to my
> > > > mind...and despite watching years of outrageous accusations of
> > > > wrongdoing being hurled at every opportunity...I have yet to see a
> > > > single instance where any facts lend credence to the charges.
>
> > > > What I am saying is outrageous here is Ms. Smith's behavior.
>
> > > > In my opinion, this is just appalling and extremely disrespectful. A
> > > > disgrace.
>
> > > > And an embarrassment.
>
> > > > Just shouting and demanding and getting in your face is just...dumb.
>
> > > I'm with you 3rd, I agree with everything you have said so far. About
> > > the videos, I really think you should check them out, maybe let them
> > > load overnight? It won't be the same if I just describe them to you.- Hide quoted text -
>
> > > - Show quoted text -
>
> > Okay...I managed to see them both.
>
> > But I'm afraid that I still don't know what your point is. Either I am
> > dim (distinct possibility)...or it may not be as obvious to others as
> > you may suspect.
>
> > Yes, there are similarities between the two cases, I guess.
>
> > But would you care to elaborate on what you see as the issue, there?
>
> Well my point is that (and this is my opinion),a lot of people
> (specially in industrialized countries) are experiencing severe
> symptoms/illness that can't just be dismissed as psychosomatic.
> Whether is it chronic lyme or not it, this "epidemic" (particularly in
> the U.S, Canada and the U.K) should be of concern for public health
> officials. In other words, I can see a question arising on this regard
> (by politicians, health officials etc) such as : Well, if is not lyme
> why are these young healthy people just suddenly becoming so ill?
>
> I see now just from anecdotal evidence (personal as well) that it
> can't just be a few people with nothing else to do. I personally don't
> believe in chronic lyme as is described by many, I however do believe
> in persistence of the bacteria such that it would present as a
> relapsing condition. I'm also certain about immune dysfunction that
> can be caused by the mimicry of the ospA antigen with certain tissue
> and also a dis regulation directly affecting normal cytokine function.
>
> What's interesting is that in Marie McQuhae's case their parents are
> convinced that her daughter has chronic lyme, and they alluded to
> their certainty based on test results from american labs, I'm going to
> go out on a limb and guess that these results were from labs such as:
> Igenex, Fry, or Bowen.
>
> In other words, even if the approach was wrong, I still think that
> this whole campaign is beneficial. At the very least I have heard from
> other physicians their interest in this phenomenon and most of them
> agree is not chronic lyme but are intrigued with this whole
> controversy. At least one expert in I.D back in Connecticut has been
> very interested in finding out why this all came about and he agrees
> is not a matter of just a few people with psychosomatic symptoms.

I meant to say other physicians (besides I.D.). I'm not a physician.

Re: Pat Smith and the Reign of Error

On May 22, 3:12 pm, chronichel...@yahoo,com wrote:
> Well my point is that (and this is my opinion),a lot of people
> (specially in industrialized countries) are experiencing severe
> symptoms/illness that can't just be dismissed as psychosomatic.

Yes. Agreed. Absolutely.

> Whether is it chronic lyme or not it, this "epidemic" (particularly in
> the U.S, Canada and the U.K) should be of concern for public health
> officials. In other words, I can see a question arising on this regard
> (by politicians, health officials etc) such as : Well, if is not lyme
> why are these young healthy people just suddenly becoming so ill?

Yes.
>
> I see now just from anecdotal evidence (personal as well) that it
> can't just be a few people with nothing else to do. I personally don't
> believe in chronic lyme as is described by many, I however do believe
> in persistence of the bacteria such that it would present as a
> relapsing condition. I'm also certain about immune dysfunction that
> can be caused by the mimicry of the ospA antigen with certain tissue
> and also a dis regulation directly affecting normal cytokine function.

Personally, I am trying to keep an open mind about whether "chronic
Lyme" exists or not. Assuming that I was correctly diagnosed,
something continues to drive a recurrence of symptoms with me. And
episodic...I recently relapsed after almost eight months of being
"clean". I have been doing this act for about ten years, now. I have
been trying to exercise my butt off...to remove any possibility of
just atrophy...or lethargy, psychologically-driven anything...and I
can tell you that the symptoms returned suddenly and with little
warning. I had been feeling great, was not stressed at all...in very
good spirits and outlook.

In other words, seems damned real to me.

Whether this is bacterial or merely inflammatory...to me, doesn't much
matter (on a very personal level). What it means is that I am fairly
severely limited in daily living activities. And...these symptoms
appeared first early in the illness...that is, the ones that just
reapppeared.

But part of the perception problem, I think, lies in the simple lack
of recognition on the part of some in the activist community that the
existence of these symptoms are really not being denied.

There are a variety of other possible explanations, though, including
permanent damage, or the awakening of some other disease process
incidental to the original infection.

What I think is a legitimate issue...on the part of the chronic
advocates...is that the IDSA would remove antibiotics from them and
not provide viable alternative therapies...at the same time insisting
that the numbers of the chronic population are relatively small. If so
few people are affected, then why worry so much about the overuse of
antibiotics? Even if the purpose is simply to reduce inflammation?

I think the rigidity of the response on the part of the mainstream is
a legitimate and puzzling problem...and it seems, at times, to be
indicative of an attitude that is almost mechanical in nature, and
indifferent to human suffering.

>
> What's interesting is that in Marie McQuhae's case their parents are
> convinced that her daughter has chronic lyme, and they alluded to
> their certainty based on test results from american labs, I'm going to
> go out on a limb and guess that these results were from labs such as:
> Igenex, Fry, or Bowen.

Yes. And I will tell you, that even though I am a pretty good sized
guy... over six feet...(athletically built, no shrinking
violet)...just because of the damned diagnosis I have been subjected
to the same "malingerer" treatment by mindless medical professionals
who are more interested in getting to the next patient, processing the
next unit...than in truly healing and helping.

I would imagine that women are even more vulnerable to this type of
"treatment".

And...I suspect that there is a part of everyone that simply doesn't
WANT to believe that your life can be so completely destroyed by the
bite of a bug so small that it is nearly impossible to detect...they
can't believe that someone can become so ill...because they would
rather NOT believe that.
>
> In other words, even if the approach was wrong, I still think that
> this whole campaign is beneficial. At the very least I have heard from
> other physicians their interest in this phenomenon and most of them
> agree is not chronic lyme but are intrigued with this whole
> controversy.  At least one expert in I.D back in Connecticut has been
> very interested in finding out why this all came about and he agrees
> is not a matter of just a few people with psychosomatic symptoms.-

Yeah. Problem is, though...that other physicians, some I have
encountered, are also visibly leery of the entire issue, only vaguely
understanding what is going on with it...and seem to have an almost
compulsive urge to deny fairly even the most straightforward and clear
cases...and would rather treat Lyme patients as psych cases.

I am going to assume that this is largely due to the zaniness
surrounding the issues...and a direct impact of some of the more
strident "activist" voices.

But the real "system" issue...the big, structural question...is, I
would propose, whether it is at all advisable for patient groups to be
so forcefully inserting themselves into a debate of
professionals...whether laypersons should be able to weigh in on
matters reserved for highly-trained professionals and professional
societies.

Simply, whether, we should be politicizing a debatable question of
scientific fact and evidence. I think if I were a physician, I would
be very troubled by the IDSA affair, and what appears to be an attempt
of patients to seize control and over-rule the judgment of
professionals.

Surely, the answer to his is ultimately, a firm and resounding , "no'.
A situation where the patients diagnose themselves and prescribe their
own treatment? Tail wagging the dog, isn't it?

And what I objected to with the Blumenthal thing...is that I don't
think a lawyer/politician necessarily makes a better arbiter of the
matter. You don't want a career politician playing self-serving games
with this.

It really has to be left to medical professionals...in my opinion...to
sort out. Even if it takes time and people are injured by the delay.
The soundness of the entire healthcare system is more important.

Seems to me that the underlying medical question...what is really
shaping the whole debate...is a struggle between the role "evidence-
based" treatment versus empirical observation within the parameters of
medical practice.

To my layperson way of thinking...there is a danger in restricting
therapies based solely on the lack of existing "proof" at the
moment..,es pecially when there is a real possibility that further
research may, someday provide the very proof that was previously
lacking.

What I still don't understand, is why physicians would be so
inflexible in their approach in the case of an emerging disease about
which they may not understand critical factors.

But...as I have said before, I don't get to vote...and shouldn't.

Anyway...

Re: Pat Smith and the Reign of Error

On May 22, 2:52 pm, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> On May 22, 3:12 pm, chronichel...@yahoo,com wrote:
>
>
> Personally, I am trying to keep an open mind about whether "chronic
> Lyme" exists or not. Assuming that I was correctly diagnosed,
> something continues to drive a recurrence of symptoms with me. And
> episodic...I recently relapsed after almost eight months of being
> "clean". I have been doing this act for about ten years, now. I have
> been trying to exercise my butt off...to remove any possibility of
> just atrophy...or lethargy, psychologically-driven anything...and I
> can tell you that the symptoms returned suddenly and with little
> warning. I had been feeling great, was not stressed at all...in very
> good spirits and outlook.
>
> In other words, seems damned real to me.
>
That's my point precisely, that I still could see a situation of
relapsing nature. However, from a biological point of view I don't see
how it is possible that someone would go on antibiotics for months
with out any improvement (well obviously unless is an antibiotic that
doesn't have any effect on the bacteria). Actually what I hear most
often is the "excuse of a herx reaction" (so in reality many are
actually feeling worst). I can't think of any other bacterial
infection that behave this way. Again not to say that in some
instances the use of long term antibiotics is warranted. but I'm not
aware of any situation were a patient (with a bacterial infection)
would have to wait months to see improvement. Now in terms of I.V
versus orals, to me is pretty much of a scam. I could even understand
I.V in situations when the load of bacteria is so high that there is a
sense of urgency, which would be probably short term followed by
orals. Specially considering this is a slow growing bacteria.

>
> Whether this is bacterial or merely inflammatory...to me, doesn't much
> matter (on a very personal level). What it means is that I am fairly
> severely limited in daily living activities. And...these symptoms
> appeared first early in the illness...that is, the ones that just
> reapppeared.

My take on that is the same, and my story is similar as well. The
issue is that it may just not be only inflammatory but it could
involve imbalance of neurological pathways ( but both the immune and
neuro systems are intertwined). Meaning (IMHO) that just treating
inflammation is not the answer.
>
> But part of the perception problem, I think, lies in the simple lack
> of recognition on the part of some in the activist community that the
> existence of these symptoms are really not being denied.
>
> There are a variety of other possible explanations, though, including
> permanent damage, or the awakening of some other disease process
> incidental to the original infection.

Exactly, and some (a lot) of quacks are taking advantage of that.
Since Lyme can cause everything and anything.
>
> What I think is a legitimate issue...on the part of the chronic
> advocates...is that the IDSA would remove antibiotics from them and
> not provide viable alternative therapies...at the same time insisting
> that the numbers of the chronic population are relatively small. If so
> few people are affected, then why worry so much about the overuse of
> antibiotics? Even if the purpose is simply to reduce inflammation?
>
I think the fear is actually the health of the patients due to the
side effects of drugs. Specially, when you see so many physicians, NP,
chiros etc used it as a money making scheme. I agree, they should
provide alternative therapies and give it the appropriate significance
(i.e. so people don't have to struggle when they apply for
disability). I don't think they are opposed to the use of antibiotics
as anti-inflammatory, they just believe they are better ways to go
about that. Again, I don't think is just an issue of inflammation, a
better approach maybe is immunomodulation (which also abx can help
with). If you noticed, the Klempner study wasn't about whether chronic
lyme existed or not, but about whether the use of long term
antibiotics was beneficial for those patients with persistent
symptoms.
>
>
> I think the rigidity of the response on the part of the mainstream is
> a legitimate and puzzling problem...and it seems, at times, to be
> indicative of an attitude that is almost mechanical in nature, and
> indifferent to human suffering.
>
Yes, and that's why I feel that letting the politicians know about
that is important.


> > What's interesting is that in Marie McQuhae's case their parents are
> > convinced that her daughter has chronic lyme, and they alluded to
> > their certainty based on test results from american labs, I'm going to
> > go out on a limb and guess that these results were from labs such as:
> > Igenex, Fry, or Bowen.
>
> Yes. And I will tell you, that even though I am a pretty good sized
> guy... over six feet...(athletically built, no shrinking
> violet)...just because of the damned diagnosis I have been subjected
> to the same "malingerer" treatment by mindless medical professionals
> who are more interested in getting to the next patient, processing the
> next unit...than in truly healing and helping.
>
> I would imagine that women are even more vulnerable to this type of
> "treatment".

Yes true, I'm 6 and used to be very athletic. I have a real issue with
a lot of Drs and even scientists. However, because of that (and just
like you), I haven't fallen for irrationality.
>
> And...I suspect that there is a part of everyone that simply doesn't
> WANT to believe that your life can be so completely destroyed by the
> bite of a bug so small that it is nearly impossible to detect...they
> can't believe that someone can become so ill...because they would
> rather NOT believe that.
>
I'm not sure that is the reason, malaria is transmitted by a mosquito
and that doesn't imply that Drs don't believe it can make someone
really ill. Is more a matter of not having something tangible,
something definitive like death (extreme) for example.
>
> > In other words, even if the approach was wrong, I still think that
> > this whole campaign is beneficial. At the very least I have heard from
> > other physicians their interest in this phenomenon and most of them
> > agree is not chronic lyme but are intrigued with this whole
> > controversy. At least one expert in I.D back in Connecticut has been
> > very interested in finding out why this all came about and he agrees
> > is not a matter of just a few people with psychosomatic symptoms.-
>
> Yeah. Problem is, though...that other physicians, some I have
> encountered, are also visibly leery of the entire issue, only vaguely
> understanding what is going on with it...and seem to have an almost
> compulsive urge to deny fairly even the most straightforward and clear
> cases...and would rather treat Lyme patients as psych cases.
>
Yes but I believe those are the ones who would be skeptical any way.
Meaning that this whole controversy haven't necessarily polarized them
(or maybe it has).
>
> I am going to assume that this is largely due to the zaniness
> surrounding the issues...and a direct impact of some of the more
> strident "activist" voices.
>
> But the real "system" issue...the big, structural question...is, I
> would propose, whether it is at all advisable for patient groups to be
> so forcefully inserting themselves into a debate of
> professionals...whether laypersons should be able to weigh in on
> matters reserved for highly-trained professionals and professional
> societies.
>
> Simply, whether, we should be politicizing a debatable question of
> scientific fact and evidence. I think if I were a physician, I would
> be very troubled by the IDSA affair, and what appears to be an attempt
> of patients to seize control and over-rule the judgment of
> professionals.
>
> Surely, the answer to his is ultimately, a firm and resounding , "no'.
> A situation where the patients diagnose themselves and prescribe their
> own treatment? Tail wagging the dog, isn't it?
>
> And what I objected to with the Blumenthal thing...is that I don't
> think a lawyer/politician necessarily makes a better arbiter of the
> matter. You don't want a career politician playing self-serving games
> with this.

Of course, I always thought this was more as a political stunt than
anything. I wouldn't be surprised at all if he runs for governor of
CT.
>
> It really has to be left to medical professionals...in my opinion...to
> sort out. Even if it takes time and people are injured by the delay.
> The soundness of the entire healthcare system is more important.
>
> Seems to me that the underlying medical question...what is really
> shaping the whole debate...is a struggle between the role "evidence-
> based" treatment versus empirical observation within the parameters of
> medical practice.
>
> To my layperson way of thinking...there is a danger in restricting
> therapies based solely on the lack of existing "proof" at the
> moment..,es pecially when there is a real possibility that further
> research may, someday provide the very proof that was previously
> lacking.
>
> What I still don't understand, is why physicians would be so
> inflexible in their approach in the case of an emerging disease about
> which they may not understand critical factors.

Yes. me neither.
>
> But...as I have said before, I don't get to vote...and shouldn't.
>
> Anyway...

Re: Pat Smith and the Reign of Error

On May 22, 6:22 pm, chronichel...@yahoo,com wrote:
>
>
> > On May 22, 3:12 pm, chronichel...@yahoo,com wrote:
>
> > > That's my point precisely, that I still could see a situation of
> relapsing nature. However, from a biological point of view I don't see
> how it is possible that someone would go on antibiotics for months
> with out any improvement (well obviously unless is an antibiotic that
> doesn't have any effect on the bacteria).

Yes. And I, as I suppose do others, also...look at the entire
controversy through the prism of my own perspective...I evaluate the
issues through what I recognize as having occurred with my own case.

I surely don't think two weeks of doxy were at all effective...but
after some time...I was noticing no effect of the antibiotics on the
symptoms. They did a pretty extensive testing at that point...several
years post-bite...and there was no immune reaction, period. So, to
some extent, the mainstream camp's observations seem to track with my
own.

. Now in terms of I.V
> versus orals, to me is pretty much of a scam. I could even understand
> I.V in situations when the load of bacteria is so high that there is a
> sense of urgency..."

YES! Exactly. And this is the question that the online patient
community always seems to want to ignore. Why the IVs? The IDSA
Guidelines suggest the IV in neuro and cardio situations...I assume
for the very reason you indicate...to deliver the goods quickly and
bring up the load where there is a plausible danger to the patient.

And the lack of a coherent answer to the question may be critical to
understanding...uh...shall we say, some of the "dynamics" of the
controversy?

). If you noticed, the Klempner study wasn't about whether chronic
> lyme existed or not, but about whether the use of long term
> antibiotics was beneficial for those patients with persistent
> symptoms.

Yep.
>
> Yes, and that's why I feel that letting the politicians know about
> that is important.

Okay...but this "raising awareness" stuff is pure and utter bullshit.
This means "we got an ass-whuppin".

The stuff on video is absolutely horrendously bad. And WHY are they
doing this, at all? Pallone TOLD them he wasn't going to move the
thing. They can't possibly win. So WHY even ask their "constituents"
to go through the motions? Do they actually think that they could
possibly make him back down in public?

Lunacy.

And it has always been like this. Online...I have been called every
name in the book, (recently graduating to ally of Satan, well,
hell...the villains always get the best roles)...for simply doubting
that chronic infection may exist.

It's like they are part of the Spanish freakin' Inquisition..."heresy,
heresy"!

WHY after all that I have been subjected to...do these IDIOTS have to
publicly disgrace and demean my very suffering?

So long ago that it now seems as it were another lifetime...I had to
deal with "grassroots activists"...just like the guy in the video in
Pallone's office.

To my mind...while I will say that there are a few people in
governement because they can't find private employment, have relatives
in high places...there are also many dedicated people who work hard,
and take their jobs seriously...are there because they chose public
sector involvement and are trying to make a difference.

The "grassroots" types...they have a playbook...their behavior is
fairly consistent. In the case I was involved in...they made the same
sort of demands you are seeing here. They are an enormous burden to
getting anything constructive done...usually have very little
political "smarts"...and when the thing is over...will hold a press
conference proclaiming that they deserve the credit for all the hard
work that YOU did.

I worked with a couple of guys who had a lot of campaign experience
between them. Both locally and nationally. Learned a lot from just
listening to them. What I remember about the grassroots types...one of
them says, "they start out with the best of intentions...then comes
the power struggles...the internal leadership fights. Then, it is ALL
about the leader".

And THAT is exactly what you are seeing. Did you notice how the Pat
starts out incensed that there was no one there to receive her
threats? LOL.

> Yes true, I'm 6 and used to be very athletic.

Well...for the record, I said I was "athletically built". I wasn't a
jock, by any means (two left feet) ...did work my way through college
and law school as a construction worker, though...where I learned a
colorful and interesting way to express myself. Some of the internet
ladies have commented on this mode of expression. I am so...deeply
ashamed. (not).

I have a real issue with
> a lot of Drs and even scientists. However, because of that (and just
> like you), I haven't fallen for irrationality.

Some of them are lucky to still have their teeth, ones who have
interacted with me...
>
> > And...I suspect that there is a part of everyone that simply doesn't
> > WANT to believe that your life can be so completely destroyed by the
> > bite of a bug so small that it is nearly impossible to detect...they
> > can't believe that someone can become so ill...because they would
> > rather NOT believe that.
>
> I'm not sure that is the reason, malaria is transmitted by a mosquito
> and that doesn't imply that Drs don't believe it can make someone
> really ill. Is more a matter of not having something tangible,
> something definitive like death (extreme) for example.

Right. And we have already had the West Nile warnings...but nothing in
regard to Lyme, which is slowly becoming a problem in suburban areas
here (Chicago). I have been monitoring the pleas at LymeNUT for LLMDs
in the Chicago area...they are increasing.

The difference, I would submit, is that Lyme can become localized...an
area can become infested. This can probably have an effect on property
values and the local economy if the area is a recreational getaway for
the urban dwellers. (Like Wisconsin).
>
> > > In other words, even if the approach was wrong, I still think that
> > > this whole campaign is beneficial. At the very least I have heard from
> > > other physicians their interest in this phenomenon and most of them
> > > agree is not chronic lyme but are intrigued with this whole
> > > controversy.  At least one expert in I.D back in Connecticut has been
> > > very interested in finding out why this all came about and he agrees
> > > is not a matter of just a few people with psychosomatic symptoms.-

I think that there is a right way and a wrong way to go about this. I
do agree that physician awareness is the critical issue for
prevention...if I follow...but the focus of most of this agitation is
really on maintenace of chronics.

What you want, I would think...is focus on prevention and quick
diagnosis, especially in an area like Chicago, where it would seem
that we are about to have a bad year. This means bringing the docs up
to speed. And believe me, they ain't close...most of them...
>
>
> > And what I objected to with the Blumenthal thing...is that I don't
> > think a lawyer/politician necessarily makes a better arbiter of the
> > matter. You don't want a career politician playing self-serving games
> > with this.
>
> Of course, I always thought this was more as a political stunt than
> anything. I wouldn't be surprised at all if he runs for governor of
> CT.

Yeah. Something. They are always posturing for the next campaign. The
next office on the horizon.

Re: Pat Smith and the Reign of Error

On May 20, 11:14 am, the 3rd Man <derdrittemann2...@yahoo,com > wrote:
> Does anyone know what the LDA actually accomplishes through all this
> agitation and issuance of "action alerts"?


What have you accomplished?
You're too cowardly to post under your own name
much less perform any actions to help anyone.

All you do is come out here anonymously and
criticize everyone else.

As if that weren't both insane and cowardly.

Kathleen M. Dickson

Re: Pat Smith and the Reign of Error

On May 24, 5:17 am, Mort Zuckerman <morph...@yahoo,com > wrote:

> What have you accomplished?

I am "raising awareness".

> You're too cowardly to post under your own name
> much less perform any actions to help anyone.

Gee, Kathleen...have you heard about what happened with poor Sarah?
Now...WHY do YOU think it is a good idea to post under your own
name?...when just about all the internet experts say DO NOT DO THIS.

LOL. I happened to see where Carla mentioned that the bad guys had
tracked down her real name. No...she posted a link to it. She's just
not real bright, it would seem.

What difference does it make, anyway? You and your equally disturbed
friends will just decide that I am "Joel" in disguise, anyway.
>
> All you do is come out here anonymously and
> criticize everyone else.

OH! And YOU do it under your own name? Which somehow makes it better?
What in the hell is your problem now? You don't care for criticism of
the Pat? I was under the impression that you weren't too fond of her,
either.

The ONLY reason you are probably not sued for libel is that you don't
have enough assets to make it worth anyone's while.
>
> As if that weren't both insane and cowardly.

Yeah, whatever...shouldn't you be off mindlessly yelling at passersby
on the street corner about LYme CrYMes? Assaulting the virgin ears of
the populace with the exciting details of the Dearborn Conference?

Sprinkiling Holy Water on your keyboard (good idea, BTW...make sure
you use LOTS of water)... or whatever...spotting images of Jesus in
toast?