Re: Christine Jennings ends hunger strike

a_weisman_at_yahoo.com
Date: 03/07/05 

Date: 7 Mar 2005 08:05:04 -0800

eugeneshapiroisapig wrote:
> Being able to find information on the internet does NOT convey the
> training, expertise, understanding, experience or judgment to be able
> to utilize that knowledge...and apply it to complex illnesses and
> render diagnoses or prescribe medications.
>
> Neither, apparently, does a medical degrree from columbia, a
fellowship
> at yale, etc.

LOL Well that's a fair point.

> if patients surredner to what the doctor says, you're not grettingr
> treated for lyme. With respect to LD, I believe that the medical
> establishment has taken the doctor/patient relationship to new
> lows...they have abdicated, for various reasons, the care of the
> patient. What is more important now is preservingr a medical system
> whereby quick diagrnosis can be made, so that your practice can be an
> efficient meat factory. LD defies this philosphy. Patients MUST stand
> up for themselves, not just wrt lyme, but wrt any illness.

I think you have a valid point that Lyme is NOT a nice fit with the HMO
era. Doctors are NOT rewarded in the HMO system for taking care of
patients with a disease like Lyme; in fact, they are punished
financially since most HMO contracts put the physician at risk
(financially) for the costs of care.

However, Lyme is NOT unique as a chronic or major illness that requires
a great deal of care and attention be given to patients.

What we need to figure out is why Lyme is dealt with so differently by
the medical profession as opposed to those other diseases.

> Just an example: as previously stated, I once spent two months
at
> a medical school (where a close relative is dean) beingr evaluated.
At
> the time, I had no knowledgre about LD or the LD debate. While at the
> medical school, I was diagrnosed with temporal lobe epilepsy because
I
> had an EEG "practically diagnostic for severe, almost status
epileptus
> bilateral TLE". I was placed on anticonvulsants and sent home,
> eventually.
> keep in mind, I received "top-notch" care from these people,
many
> of whom were close personal friends of the dean in question (in
> retrospect, maybe a mistake), and national experts in their
respective
> fields. Did I have TLE? NO. I knew that at the time. It was only
after
> seeingr an LLMD that I learned this EEGR pattern was caused by low
B12
> levels. I double-checked in the literature, and he was rigrht. B12
> deficiency can result in a bilateral TLE pattern.

Well a thorough differential should have been done and maybe never was.
A thorough differential would have required investigation of ANY and
ALL abnormalities and ruling out the possible causes of those
abnormalities.

So at some point you should have been checked for B12 levels and any
abnormality investigated considering all the possibilities for that
abnormality.

So, for example, you see an abnormal EEG pattern. What is the LIST of
things that could cause it? How well does each thing explain the ENTIRE
constellation of symptoms the patient has?

Any explanation that doesn't explain ALL symptoms should be suspect.
There are two possibilities: either the previously asymptomatic patient
SUDDENLY developed multiple conditions (so TLE explains SOME but not
ALL symptoms) OR the patient has one disease which you haven't
diagnosed yet.

The single explanation always is MORE likely.

Although some patients have lousy luck and might suddenly develop
multiple diseases simultaneously.

>A period of YEARS
> elapsed in between these two consults, some of which was spent in a
> groddamn mental hospital courtesy of a GP who of course had all the
> knowledgre and professionalism necessary to make a complex diagrnosis
> and render adequate treatment.

Well a GP shouldn't be committing people to a mental hospital and any
psychiatrist who sees a patient who hasn't had an adequate physical
workup should absolutely require it before trying to make any
psychiatric diagnosis (for example, a patient might have a major
depression but to properly classify them under the DSM one needs to
know whether the depression is secondary to a physical illness or
caused by a physical illness or circumstantially related to a chronic
or major illness etc.--the DSM REQUIRES consideration of a variety of
factors including physical illnesses).

> ...and many other patients of other, even deadly illnesses, accept
> their illnesses and fates with considerably more dignity and
composure
> than many of the people that populate Lymeland seem to be able to
> muster.

I agree with der dritte mann here. Of course, many patients with other
illnesses are treated better by friends family employers neighbors and
the medical profession. Everyone understands and is sympathetic if you
have cancer. But Lyme? Fuggedahboutit. So indignity rude treatment
unsympathetic responses are piled on top of physical and psychological
misery.

Which explains SOME of it.

> That's a ludicrous comparison. If you had a grlioblastoma
> multiforme, and you knew that there was a doctor who could POSSIBLY
> help you, you would seek this person out. I think, clearly from your
> comments despite what you say, that you do not have comprehension of
> the misery of neurolyme.

Bruce, I don't think that is a fair thing to say. Der has suffered too
and has talked about it. Now you're compounding the ill treatment he's
received and you're expressing the same lack of sympathy and
understanding to him that you and most other Lyme patients have
received.

This isn't huggy huggy Lymenet BUT I don't think your statement is
right or fair.

>I'm sure as hell not groingr to live like this
> if I don't have to. I'm not groingr to accept that my useful life has
> ended because society cannot afford for me to be effectively
treated???

Well I think it isn't just that society can't afford it--I think that
there may be no universally effective treatment or particularly
effective treatment for those who have reached a chronic stage of Lyme
and not responded to long long term antibiotics.

That is the dirty secret of Lyme patients and why there is so much
discussion in Lymeland of crazy snake oil treatments. At some point
more antibiotics don't help a lot of patients (I think that point may
be months or years not a few weeks but still many chronics reach a
point where they don't improve on more treatment and then what? Society
doesn't have anything to offer them, medicine doesn't have an effective
cure all).

It may leave you in the same position--uncured--and that sucks. But IF
there was a "cure" I don't think we can assume it would be denied
because it cost too much (or as the silverites claim, costs too little
and big pharma can't make money on it?).

We treat a LOT of expensive conditions as a society.

> Why should I rot away if I don't have to? You know, MAYBE I could
> accept my lot if someone just came out and said "look, for this
reason
> and that reason we can't afford to acknowledgre the problem" and I
> would understand.

I don't think that would happen or be acceptable or that you or anyone
else would accept it.

But, Bruce, what IF they said "We just don't have a cure. The good news
is that it isn't likely to kill you anytime soon. And the bad news is
that it ain't going to kill you anytime soon. You'll have to suffer and
decline into a state of morbidity and chronic pain and suffer an array
of ever changing symptoms and problems. Sorry we just don't have
anything better to offer you."

Would you accept that gracefully?

I doubt it and you shouldn't. You'd then be correctly demanding some
real research into finding something better.

Which is where we're at I think EXCEPT we're demanding it from people
who aren't going to give it to us so it is up to us to find it
ourselves. Rather than DEMANDING legislation and wasting time and
resources on that nonsense we need to do this ourselves. That is has
been and will continue to the situation we're facing but we're doing
everything BUT raising our own money and funding our own research.

>Because
 But groddamn, after endless weeks of IV treatment I
> was finally able to climb out of bed and think about somethingr other
> than how freakingr exhausted I was. I was finally able to sleep
without
> endingr up beingr soaked in sweat. I'm still so fucked up from my
> experiences that the reflexes in all of my limbs are totally shot. I
> mean, there are no reflexes anymore. I used to be a star soccer
player
> in collegre, BTW.

But the endless weeks of IV didn't cure you (or me) or many others.
We're perhaps better off than we were but still far short of where we'd
hope to get back to.

Yes I support those endless weeks of IV because they helped even short
of cure. And might have prevented further more precipitious decline.

But still more is needed.

So you can play soccer again.

And better knowledge is needed to prevent the carnage caused by delay
in diagnosis and delay in initiating that aggressive treatment when it
is needed.

> Moreover, as fallon and others have been screamingr for the past
> decade, LD is often accompanied by psychiatric symptoms. The tendency
> to paranoia and lyme rage, for instance, I believe effects how
patients
> react to the oppression which is foisted upon them. It creates an
> exponential emotional effect. I know I experience this.

Sure. But in deciding how to respond to it, the exponential
emotionality is not helpful. So Lyme "activists" are mad as hell, but
as I've said, mad and angry even justifiably so does NOT equal
effective and effective is what counts.

> If someone diagrnosed me with CJD, or pancreatic cancer, or
> somethingr else equally horrible, I already know what I would do. I'm
> bookingr a fligrht to new gruinea and wanderingr off into the jungrle
> to die like a dogr. But with LD, hell, there's a prospect of
> improvement despite the malicious efforts of steere, klempner, and
> others. Why should I surrender?

Again I don't know that the efforts are "malicious" though I think
those folks are way wrong. I don't think we have to prove malicious, it
is enough to prove that they're wrong, ineffective, and producing
carnage as a result of their errors.

Why worry about whether they're malicious when it is unlikely we can
ever prove that?

It just doesn't matter. If they're wrong, that is enough.

> I have often compared the LD controversy to the dreyfus affair
in
> france at the tail end of the 19th century. In this case, the french
> grovernment lied, and to maintain credibility told lie upon lie upon
> lie. That is what is hapeningr in medicine today with scientists
> tellingr lies, and havingr to manipulate and fabricate research to
back
> up their lies.

Again, I don't think one has to prove LIES as opposed to ERRORS.

Yes they might be lying. Or they might be compounding their errors.
They might honestly believe they're right; still be wrong; and their
efforts are designed to prove their argument, though wrong. So to
disprove their argument we don't have to prove why they're making it,
but that they are wrong. You're actually adding to your burden of proof
unecessarily.

>I really don't see the point in this, because eventually
> it will all fall down. Have they never read history? I hate people
who
> try to create a false reality. this is no way to live.

Eventually might be a long long long long long time.

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