the real issue in the Jones case
pm...@direcway.com
IDSA standard of care basically constitutes, as Ken Liegner has
eloquently said, medical neglect.
* You were bitten by a tick? Here, have 200mg. of doxycycline.
There's no proof it works but it's cheap and it will get you off my
back.
* You think you have Lyme? Most people who think they do, don't
really. You have chronic fatigue, fibromyalgia, multiple sclerosis,
mental illness, etc.
* Your child has Lyme? 2 weeks of antibiotics will cure him.
* You think your child still has Lyme after treatment? Maybe we
should check you for Munchausen's by proxy.
* You have a positive test? It either doesn't meet the CDC
criteria, it's a false positive, or a positive test doesn't prove
active disease.
* You need an LLMD appointment after getting nowhere with 10 other
doctors? You either have to travel several hours, wait several months
for an appointment, or the practice is closed to new patients because
there aren't enough LLMDs.
For people with Lyme disease the IDSA standard of care says, "Heads I
win, tails you lose." And then they go after LLMDs and Lyme labs,
trying to reduce the already pathetically limited resources. Why should
we put up with this? When is the Lyme community going to say, "Enough!"?
Frank de Groot
> * You were bitten by a tick? Here, have 200mg. of doxycycline.
> There's no proof it works but it's cheap and it will get you off my
> back.
Or worse, they say: "There is no need for preventive antibiotics."
> * You think you have Lyme? Most people who think they do, don't
> really. You have chronic fatigue, fibromyalgia, multiple sclerosis,
> mental illness, etc.
Or worse, they say: "There is absolutely nothing wrong with you, you're as
fit as a fiddle".
> * You have a positive test? It either doesn't meet the CDC
> criteria, it's a false positive, or a positive test doesn't prove
> active disease.
Or worse, they say: "I do not want to look at this test, get it out of my
eyes, we do not acknowledge any tests apart from or own".
> * You need an LLMD appointment after getting nowhere with 10 other
> doctors? You either have to travel several hours, wait several months
> for an appointment, or the practice is closed to new patients because
> there aren't enough LLMDs.
Or worse, there aren't _any_ LLMD's in one's country.
> Why should
> we put up with this? When is the Lyme community going to say, "Enough!"?
Because of human nature. There is no such thing as a Lyme community, and
most people lack the will or power to do anything.
Mockingbird
Not surprising to see this kind of misguided misinformation from you
though.
There are specifics to this case that we don't know. What we do know is
that the complaint has something to do with prescribing long distance
for patients who were not established patients without ever having seen
them.
There's NO indication that it has anything to do with ANYTHING you say
below.
Which is why "help" from folks like you is the LAST thing Dr Jones
needs. Because you are prepared to proceed in total ignorance--but
without hesitation.
And remember the saying Errabundi Saepe, Semper Certi. (Often Wrong,
Always Certain.)
It ought to be the well earned motto of Lyme "activists" like you.
Shut up until you actually know something.
Which would almost certainly be a looooooooong silence.............
And a blessed one!
Mockingbird
very specific facts of THIS case. There's no reason to believe the case
is about anything like the below.
You guys are Errabundi Saepe, Semper Certi. (Often Wrong, Always
Certain.)
pm...@direcway.com
know what the case is about. Why should we let our enemies frame the
issue? This is about access to care, which we have a HUGE problem with
because of the IDSA. The standard of care is indeed relevant here if
you consider the practical options for the child in Nevada, where there
are NO LLMDs. Or the options for any other patient who has to wait for
months or travel hundreds of miles to see an LLMD. Why should anyone
wish to see that child's health deteriorate further while he waits for
his/her appointment with the only pediatric LLMD in America, or in the
world, as far as I know? The law is made for man, not man for the law,
remember.
Somebody has already added to the original list:
* You can't possible have Lyme disease because we don't have it here.
* You finally get to your far distant, too busy Lyme doctor, but
can't pay for the appt. because your insurance won't cover it.
* Or, the LLMD can't afford to keep accepting Medicare, so after
having been misdiagnosed for years so that you are now disabled,
the
only medical coverage you have will not pay for the treatment you
need.
* Even when you figure out how to pay for the LLMD appt., your
insurance refuses to cover the medications that are required
because
it isn't "medically indicated."
* You have an EM rash? Oh, that's really ringworm, or eczema, or
hives, or nerves, or a spider bite. So you don't need antibiotics.
See, it went away
by itself! Oh, no, it doesn't have anything to do with the pain you
feel, or your exhaustion, or your trouble thinking. No, that is
probably depression, or menopause.
I don't expect you to agree with me and other people will have to make
their own decision about which "leaders" to follow. I think setting up
a legal defense fund for Dr. Jones would be a good first step.
ps I do know the saying but we translate it, Not always right, but
never in doubt. Surely that applies to you in your often strident
assertions?
porch monkey
one time before I died...
Mockingbird
No, Phyllis. I said that I think DR JONES AND HIS LAWYER should set the
strategy NOT IDIOTS LIKE YOU, who, no matter how well meaning,
CONSISTENTLY FUCK THINGS UP FOR EVERYONE!
> I know what the case is about.
Apparently not--not from your post. Not a clue.
>Why should we let our enemies frame the issue?
That's pretty ironic coming from Neville Chamberlin, Lyme patient
representative to the NIH study--who let our enemies frame the study!
And, the way it works in a case like this, the "enemies" DO "frame" the
issue--the charges are up to them. And that "frames the issue."
And, the truth is that you don't know that your "access to care"
defense has ANY RELEVANCE OR VALIDITY to the specifics of the charge
here.
Not a freaking clue.
As usual.
>This is about access to care, which we have a HUGE problem with
> because of the IDSA.
Nope. APPARENTLY the issue is about Dr Jones having prescribed
treatment for two children from Nevada who were not established
patients.
Factually, the defense will come down to whether or not he had an
adequate basis for his diagnosis, whether the treatment was
"reasonable" and whether the monitoring was appropriate.
IT HAS NOTHING TO DO WITH ACCESS TO CARE, with the exception--as Dritte
phrased it of whether "preserving the patient's health until they can
be seen" is appropriate.
See, the difference is that he has a clue, and you do not.
>The standard of care is indeed relevant here if
> you consider the practical options for the child in Nevada, where there
> are NO LLMDs.
Only in a very small way and only as dritte framed it. And still the
questions will be: was there an adequate basis for the diagnosis; was
the treatment "reasonable", was it properly monitored; IF there was a
problem, did Dr Jones respond appropriately.
>Or the options for any other patient who has to wait for
> months or travel hundreds of miles to see an LLMD. Why should anyone
> wish to see that child's health deteriorate further while he waits for
> his/her appointment with the only pediatric LLMD in America, or in the
> world, as far as I know? The law is made for man, not man for the law,
> remember.
Nope it is more fact specific than that.
And it sure ain't what you began this thread with. It isn't the global
issues at all--it is the specifics of this case.
> Somebody has already added to the original list:
Well guess what? NOTHING PLUS NOTHING EQUALS NOTHING. NONE OF YOU HAVE
A FREAKING CLUE AND YOU'D DO DR JONES A FAVOR BY LETTING HIS LAWYERS
HANDLE IT AND NOT YOU SELF IMPORTANT NITWITS!!!
> * You can't possible have Lyme disease because we don't have it here.
>
> * You finally get to your far distant, too busy Lyme doctor, but
> can't pay for the appt. because your insurance won't cover it.
>
> * Or, the LLMD can't afford to keep accepting Medicare, so after
> having been misdiagnosed for years so that you are now disabled,
> the
> only medical coverage you have will not pay for the treatment you
> need.
>
> * Even when you figure out how to pay for the LLMD appt., your
> insurance refuses to cover the medications that are required
> because
> it isn't "medically indicated."
>
> * You have an EM rash? Oh, that's really ringworm, or eczema, or
> hives, or nerves, or a spider bite. So you don't need antibiotics.
> See, it went away
> by itself! Oh, no, it doesn't have anything to do with the pain you
> feel, or your exhaustion, or your trouble thinking. No, that is
> probably depression, or menopause.
>
> I don't expect you to agree with me and other people will have to make
> their own decision about which "leaders" to follow. I think setting up
> a legal defense fund for Dr. Jones would be a good first step.
IF HE ASKS FOR IT THAT WOULD BE FINE if done properly.
> ps I do know the saying but we translate it, Not always right, but
> never in doubt. Surely that applies to you in your often strident
> assertions?
Go fuck yourself Phyllis.
Assmunch Johnson
Fuck You
board.
I've got a temp of 103 right now, not that this is an excuse.
pm...@direcway.com
"And, the truth is that you don't know that your "access to care"
defense has ANY RELEVANCE OR VALIDITY to the specifics of the charge
here."
And you don't know that the "access to care" argument WON'T buy
something, so why not use it? You waste energy battling chimeras - the
lawyers WILL handle it. DUH. However if patients can start thinking of
what the IDSA is doing to us in terms of reducing our already limited
access to care, I think that is a valuable message that needs to get
out there, in news stories, whenever we have an opportunity. We are
anticipating new IDSA guidelines in the spring - what do you think -
will they be better or worse? My guess is, worse. What are YOU doing
about it? My guess would be, nothing. Do you think we should do nothing
about that, also? Just let them kick us again, thank you very much.
There are many scenarios that can play out with the Jones case, and
many possible points where patient interests could be inserted if
people are thinking about it, thinking about who they know or
connections they have. If you and your friends hadn't monopolized this
board maybe we could have a productive discussion about it here. But
I'm not expecting anything except the usual abuse from you.
Mockingbird
No it isn't an excuse. Do you think you should perhaps be in bed
resting or in the hospital rather than testing the limits of screenames
on google groups?
I actually hope that someone figures out why you have such a high fever
and that it gets better and that you feel better.
I personally have been quite ill for several weeks (with a RAGING
HORRIBLE sinus infection which has made my head feel like it is going
to explode and has made my skull sensitive/painful to the touch and has
prevented me from getting much sleep because it hurts to put my head
down--but I do not think this is Lyme related at this point although I
do know Lyme patients who have had terrible problems with sinus
infections and sinusitis and chronic sinus infections--I have never had
this before).
Not that this is an excuse either.
So I hope you feel better bruce. Sincerely.
Look at it this way--if it is NOT Lyme and just a bad URI or flu or
something and you get over it in a reasonable period of time, that is
refreshing as opposed to the Lyme--at least I've found that to be the
case with such other "minor" and TRULY self limited infections.
Yukon King the wonder dog
pm...@direcway.com wrote:
>
> "There are many scenarios that can play out with the Jones case, and
> many possible points where patient interests could be inserted if
> people are thinking about it, thinking about who they know or
> connections they have".
Well, see, that's just it, Phyllis...it's about Dr. Jones...or at least
it's supposed to be...and NOT "inserting patient interests".
Understand?
Butt out.
Let his lawyers tell you what help they need.
Do you really want to help him...or yourself? Theoretically, helping
him is helping others, isn't it?
Mockingbird
p...@direcway.com wrote:
> Rude strident person wrote:
> "And, the truth is that you don't know that your "access to care"
> defense has ANY RELEVANCE OR VALIDITY to the specifics of the charge
> here."
>
> And you don't know that the "access to care" argument WON'T buy
> something, so why not use it?
Why not? Because it might not have anything to do with anything and it
might make things worse as I explained in the thread entitled "Dr Jones
the mistakes so far"
>You waste energy battling chimeras - the
> lawyers WILL handle it. DUH.
Wrong. It ain't "chimeras" when people are already talking about and
planning things that no one has asked them to do and which could easily
make things worse--as I explain in a couple of examples on the other
thread.
>However if patients can start thinking of
> what the IDSA is doing to us in terms of reducing our already limited
> access to care, I think that is a valuable message that needs to get
> out there, in news stories, whenever we have an opportunity.
NO THIS IS ABOUT THESE CHARGES AND DR JONES AND HE IS NOT TO BE YOUR
CAUSE CELEBRE TO ADVANCE YOUR AGENDA YOU SELFISH SELF IMPORTANT NITWIT!
Let HIM decide. Let he and his lawyer decide.
Perhaps they want NO PUBLICITY AT ALL! Perhaps that would be the best
strategy--I don't know and neither do you.
So shut up and DO WHAT HE AND HIS LAWYER ASK ONLY IF AND WHEN THEY ASK
FOR IT AND DO ONLY THAT WHICH THEY ASK AND NOTHING MORE!!!
It is NOT your license or your life or your case.
> We are
> anticipating new IDSA guidelines in the spring - what do you think -
> will they be better or worse?
I honestly do not know. I don't see how they could be much worse.
>My guess is, worse.
Right. That is your GUESS.
>What are YOU doing
> about it? My guess would be, nothing. Do you think we should do nothing
> about that, also? Just let them kick us again, thank you very much.
What do you think can be done about it? Do you think a letter writing
campaign to attempt to suppress the guidelines is appropriate? Like you
idiots thought it was a good idea to try to have the NY TIMES kill the
story about Igenex? Nope, not a good idea. Freedom of expression.
What do I think SHOULD be done about it?
I think that the "llmds" ought to come up with their own EBM
guidelines--not the crap they put in that self published thing they
then charged people for in ERAITS.
And I think that a response should be prompt to refute that which is
refutable in whatever guidelines ARE put out. I think that "llmds"
ought to try to have some input into any new IDSA guidelines. And, no,
I don't think an angry patient pr campaign would make ANY difference at
least not for the better.
Sometimes doing SOMETHING is NOT better.
> There are many scenarios that can play out with the Jones case, and
> many possible points where patient interests could be inserted if
> people are thinking about it, thinking about who they know or
> connections they have.
IF AND ONLY IF DR JONES AND HIS LAWYER DECIDE THAT IS WHAT THEY WANT TO
DO!
> If you and your friends hadn't monopolized this
> board maybe we could have a productive discussion about it here.
Phyllis you biased moron--it was kathLOON and lisa who ruined this
board--while you stood by and did nothing to stop it, made no comments
about it and you have no right to complain now.
>but
> I'm not expecting anything except the usual abuse from you.
Okay then--go fuck yourself Phyllis. And don't do ANYTHING unless asked
to for Dr Jones--sometimes help like the "help" you offer is like
asking for a hole in the head--you can and have made things worse in
the past. DO NO HARM PHYLLIS. And don't run off and do anything unless
and until Dr Jones and his legal team ask you to.
Got that?
Oh yeah--go fuck yourself you preachy self righteous hunchbacked troll!
(there's some of the abuse you asked for)
Fuck You
board.
Mockingbird
pm...@direcway.com wrote:
SNIP
> There are many scenarios that can play out with the Jones case, and
> many possible points where patient interests could be inserted
What RIGHT do YOU have to make HIM your martyr or cause celebre? This
is about HIM and HIS LICENSE and HIS LIFE.
Do what he asks if and when he asks it and only that--if you want to
help HIM.
This is NOT an opportunity for YOU to push YOUR agenda.
>if
> people are thinking about it, thinking about who they know or
> connections they have.
See here's ANOTHER example of how you can make it worse. THe implicit
suggestion here is that people should try to exert influence to affect
the outcome of this case with "who they know."
Do you see or understand how that could BACKFIRE and piss off the board
that will make the decisions and even amount to a criminal conspiracy
to obstruct justice?
Probably not.
You nitwit.
You self important self righteous ninny.
It ain't about YOU. If your "agenda" and his coincide--so be it--THEN
you get to advance your agenda. If not, then you can decide if you want
to help him anyway, or butt the fuck out!
>If you and your friends hadn't monopolized this
> board maybe we could have a productive discussion about it here.
Well as I said, it is a little late to start talking about who
monopolized and ruined this board, and you're off target too (it was
kathLOON and the kathLOONATICS).
And your version of a "productive discussion" is that people do what
YOU (in your VERY finite wisdom) tell them to do and anyone who
disagrees is a steerite troll or paid steere camp plant or is disloyal
to the Lyme cause or is a "do nothing" obstructionist.
And is probably right since you are pretty much always WRONG.
> But
> I'm not expecting anything except the usual abuse from you.
See a few lines above starting with "you nitwit..."
Oh and go fuck yourself!
Barney
disagrees is a steerite troll or paid steere camp plant or is disloyal
to the Lyme cause or is a "do nothing" obstructionist.
.....................................................................
that really does have a stalinist ring to it.
of course it took a stalin to beat hitler.
Mockingbird
Okay but the difference being that Stalin made the trains run on time
(there was an efficiency--brutal but efficient--which is not to imply
that I approve of stalinist dictatorship or the murder of millions for
the sake of efficiency).
On the other hand, Phyllis and the Lyme "activists" take credit for
trains running on time when they've never left the station. Things are
NOT efficient at all. In fact, the only trains that have ever left the
station ran off the tracks and into one another under the brutal
dictatorship of Pat Smith and Phyllis and their ilk.
oklahomaisfo...@yahoo.com
She SOOOOOOOOOOOOOOOOOOO does not get it. Obstinately refuses to get
it.
How bout her MIScharacterizing what I was saying as "do nothing" which
OF COURSE ANYONE WHO CAN READ could clearly see that I was NOT
saying--I was saying DO NO HARM and IF YOU WANT TO HELP DO EXACTLY WHAT
DR JONES AND HIS LAWYER ASK YOU TO DO, NOTHING MORE AND NOTHING LESS.
In fact, that is what I said from the very beginning when I first
posted the story that he MIGHT be in trouble--I suggested verifying it
and doing what he and his lawyer asked and NOT DOING what a bunch of
chicken without their heads self important self aggrandizing clueless
reactionary self proclaimed "Lyme activists" suggested--no matter how
well meaning. And that's another difference--all these evil motives are
attributed to me but I give them credit for MEANING WELL--I don't think
they realize how their egos and anger and self righteousness and self
importance get in the way of doing well.
Well fuck em. That's why I've dropped any pretense of civility--it
doesn't matter how one puts it to them--notwithstanding Phyllis' claim
that "productive discussion" could have been had (if WE hadn't ruined
the board!) the truth is that there is no discussion--there is do as
Phyllis and the girls say--or else you're the enemy! So no matter how
one puts suggestions that differ from their own views, the hostility
with which such suggestions are met invariablly leads me to just say
it, not sugar coat it. Fuck em. They refuse to listen to anyone else
even when they're so obviously wrong.
dali
Sinusitis can kill. (although i doubt that is your case). Google
grossan irrigators. If you have an infection try putting some abx in
the saline. Silver works the best due to fungal problems that may
arise. Or just try plain saline. Havn't had a sinus problem in years,
and I use to get them BAD. as in sinus obliteration bad.
Mockingbird
Uh thanks for the advice. NO thanks on the silver. I'm going to stick
with medication and treatments prescribed by my doctor. But, yeah, the
sinus infection is RAGING AND HORRIBLE and not to be taken lightly.
Mockingbird
case. And read the thread. You DO insist it is about the IDSA and that
it is a chance to "insert patient issues " to advance YOUR agenda.
And I am posting my first response to you too, reposting it. Then read
the thread. See what an udder fool you made of yourself you cow (IF you
happen to have some physical deformity that actually makes you look
like a cow, I am not making fun of it so I apoligize in advance--IF you
don't I stick with the "udder fool" and "you cow" comments)!
MY RESPONSE:
Nope, sorry Phyllis. That ain't the real issue.
Not surprising to see this kind of misguided misinformation from you
though.
There are specifics to this case that we don't know. What we do know is
that the complaint has something to do with prescribing long distance
for patients who were not established patients without ever having seen
them.
There's NO indication that it has anything to do with ANYTHING you say
below.
Which is why "help" from folks like you is the LAST thing Dr Jones
needs. Because you are prepared to proceed in total ignorance--but
without hesitation.
And remember the saying Errabundi Saepe, Semper Certi. (Often Wrong,
Always Certain.)
Mockingbird
pm...@direcway.com wrote:
> Rude strident person wrote:
> "And, the truth is that you don't know that your "access to care"
> defense has ANY RELEVANCE OR VALIDITY to the specifics of the charge
> here."
>
> And you don't know that the "access to care" argument WON'T buy
> something, so why not use it?
Why not use it?
BECAUSE IT AIN'T YOUR DECISION. And you DO NOT know the "real issue" in
this case. You are simply jumping to conclusions.
As a matter of fact the complaint was NOT filed by Yale, by Shapiro, by
the IDSA or anyone or anything close to that.
THis complaint was NOT filed because "steerites" have an issue with Dr
Jones.
And thus "your enemies" are NOT necessarily the enemies of Dr Jones in
this case.
The case is NOT ostensibly about Lyme. It IS about whether it violates
a standard of care to diagnose and prescribe FOR FIVE MONTHS without
ever seeing a patient.
And making it about Lyme Disease and YOUR ANTI IDSA agenda may be the
WORST idea possible.
Or not--BUT THAT IS UP TO DR JONES' LEGAL TEAM TO DECIDE NOT YOU!!!
>You waste energy battling chimeras - the
> lawyers WILL handle it.
IF YOU BUTT OUT AND LET THEM. And as I have explained it is NOT about
"chimeras' but actual courses of action already begun, letters and
emails already sent, rallies already being planned, calls and FAXes
already sent to the CT medical board, Dr Shapio, the Governor of Ct,
the speaker of the Ct house, plans for a trip to the rally being made,
calls to send letters and letters already sent to the media etc.
ALL OF THAT HAS ALREADY HAPPENED.
Not "chimeras."
>DUH. However if patients can start thinking of
> what the IDSA is doing to us in terms of reducing our already limited
> access to care, I think that is a valuable message that needs to get
> out there, in news stories, whenever we have an opportunity.
This is NOT an "opportunity" for YOU to advance YOUR AGENDA.
And making a martyr of Dr Jones may be the WORST POSSIBLE STRATEGY and
I would hazard a guess that it is.
>We are
> anticipating new IDSA guidelines in the spring - what do you think -
> will they be better or worse? My guess is, worse. What are YOU doing
> about it? My guess would be, nothing. Do you think we should do nothing
> about that, also? Just let them kick us again, thank you very much.
What are YOU doing about it?
Letters to the IDSA from patients? LOL
THREATS from patients to the IDSA?
Attempts to stifle publication?
> There are many scenarios that can play out with the Jones case, and
> many possible points where patient interests could be inserted if
> people are thinking about it, thinking about who they know or
> connections they have.
Wrong stupid and wronger.
> If you and your friends hadn't monopolized this
> board maybe we could have a productive discussion about it here. But
> I'm not expecting anything except the usual abuse from you.
GO FUCK YOURSELF
Mockingbird
>From the standpoint of the CT medical board (and pretty much every
medical board in the country without exception), it is NOT correct to
say that Lyme patients do NOT have access to care.
And, in fact, it is demonstrably wrong.
What you REALLY mean is that they do not have access to the care that
YOU think is appropriate.
However, 99.9999% of the medical community believes that the IDSA IS
appropriate--it IS the "standard of care."
Even you can't argue that--you can take the position that you think it
sucks (and I do too). But it IS the standard of care. You even argue
that is a problem (and I don't disagree).
So rather than taking on the effort of trying to prove that the
standard of care is wrong globally, in the context of this case, what
is a much better strategy would be to say that IT WAS NOT APPROPRIATE
IN THIS CASE!
Argue that this is the exceptional case. Because then you're not taking
on the unecessary burden of proving that the IDSA is globally
incorrect--in fact, the IDSA and all that it is based on recognizes the
unusual case that does require more treatment. Rather than arguing that
congenital Lyme is common, just argue that it happened here. Why take
on more of a burden than you would have to?
NOT FOR YOUR AGENDA--but for THIS case.
So rather than arguing that Dr Jones does this frequently and he is
right to do it, which only opens up other cases he's handled to
scrutiny and presents the board with a pattern of activity, just focus
on the facts of THIS case. Let him argue that his diagnosis HERE was
correct, his treatment HERE was correct, that in THIS CASE no one else
would treat the kid.
Do you see the difference in approach between "inserting patient
interests" and advancing YOUR AGENDA and defending Dr Jones IN THIS
CASE?
Your way is sure to martyr him, and a dead martyr is NOT worth more
than a living saint except if you're starting a religion.
And rather than starting a religion the focus here is MUCH more
practical: saving Dr Jones license and his ability to treat children
with Lyme.
In fact, in reality, none of this probably flies because IF the kids
were in such dire need of diagnosis and treatment Dr Jones has no
excuse for not having simply made time to see the kids earlier--from
the standpoint of the board at least.
So rather than making it a circus or a big pr event or an opportunity
to advance your Lyme crusade, the best resolution of this case is most
likely a defense that the children were NOT harmed, that the diagnosis
was most likely correct or at least had a reasonable basis, that the
treatment was reasonable and did no harm, that treatment was properly
monitored, and while it would have been better to see the kids FIRST,
he will do so in the future.
And that no draconian penalties such as license surrender suspension or
removal should be considered--that a lesser penalty is all that would
be appropriate--that Dr Jones has a stellar reputation and an
unblemished one and an impeccable record and there are plenty of
patient testimonials, awards, accomplishments and he is a benefit to
patients and the community is much better off with a good doctor who
perhaps made a mistake or error in judgment than without him.
So slap him on the wrist, make him take some additional CME courses and
let's all move on.
Without PR, without fanfare, without trying to prove anything more than
that.
Because making it HIGH PROFILE will force the board's hand--make them
make an example of him, make it impossible to achieve such a non trial
disposition of the matter.
Do you hear what I'm saying Phyllis?
The letters from patients should NOT say "Dr Jones treated my kids for
months without seeing them" or anything like that--it will NOT help to
make it a point that this is a pattern and practice and try to justify
it.
See even if the standard of care SUCKS, the truth is that "negligence"
in medicine is defined as a deviation from the standard of care. So
deviating from the standard of care is NOT a defense, and taking on the
task of proving the standard of care is wrong is taking on more than
necessary and might lose the day anyway--you could lose while
winning--because it would still be a deviation and thus negligent.
And honestly diagnosing and starting treatment without ever seeing a
patient--for MONTHS is something that is hard to defend (we understand
why it was done but the medical board NEVER will and NEVER will condone
it--NEVER).
So all the fuss that you want to start, and your PR strategies and
interventions by muckety mucks can ONLY hurt.
IF AND WHEN the legal team decides otherwise they will let you know.
And then tell you EXACTLY what they want done. ANd then--if you REALLY
want to help, you will do EXACTLY THAT and NOTHING MORE.
No embellishment. Nothing more.
Here it is from the lawyers:
"We are currently in discussions about the case & are forming a
strategy to proceed. We will contact you as soon as we are ready to
recommend a specific course of action....Please do not take any action
until we have a recommendation as it may adversely affect the case."
PLEASE PLEASE PLEASE LISTEN TO THAT.
They will form a strategy NOT YOU. DO NOT TAKE ANY ACTION UNTIL they
have a recommendation as IT MAY ADVERSELY AFFECT THE CASE."
If there is anything about that which you don't understand, please ask.
Perhaps we can help clarify that for you. But basically it means DO
NOTHING ABSOLUTELY NOTHING UNLESS AND UNTIL ASKED AND THEN DO WHAT THEY
ASK AND ONLY WHAT THEY ASK AND NOTHING MORE!
Thanks!
pm...@direcway.com
encourage a media circus AROUND DR JONES and I would discourage and
have discouraged activities that have not been cleared by Jones legal
team. We are in communication with the legal team. But I think we, the
Lyme community, could benefit from such an approach if it were done in
another context, much like the AIDS community did and for that matter,
how we ended the Vietnam war. NOT in relation to this particular case,
but as a new approach. I happen to know that govt agencies, NIH and HHS
for example, have in the past been very concerned when Lyme patients
converged on Washington in any number (even 10 or 20) that they were
going to do something outrageous. Don't you ever get tired of people
being so damn "nice?" Oh, I forgot, you aren't nice. But I have been
"nice" and look what they did to us and continue to dish out. You have
lambasted me for my role on the advisory committee, and maybe I was too
nice. I wasn't even that nice, but was not able to effect any change.
This has nothing, and everything, to do with where Jones is today, and
I think we all should look at it and change our strategy. Don't you? Or
are you satisfied with progress? Oh, I forgot, you also don't like
legislation, presumably even dr. protection legislation such as was
passed in California recently. So what DO you suggest. How about
pouring blood in files? Lying in the streets? Tying ourselves to trees?
Or lie there and get kicked again, and again, and again?
ps your use of the term "YOUR AGENDA" in capitals gives my suggestion
much more weight than I would give it. It is only an idea thrown into
the ring to be discussed, not AN AGENDA.
rebecca
organized, because that sort of thing attracts MEDIA ATTENTION. We
really need a randall terry type of person to galvanize people into
action. and it's hard with lyme, because the very nature of the disease
renders the population in question apathetic and unenergetic.
any media attention is good media attention, for this issue, at this
particular time.
Mockingbird
Thank you!
> I never intended to create or
> encourage a media circus AROUND DR JONES and I would discourage and
> have discouraged activities that have not been cleared by Jones legal
> team.
Well the problem is that this is a community filled with very angry
people--and I fully understand their anger--but being angry doesn't
equal being effective.
They're used to a response which is RALLY PROTEST SCREAM AND YELL and
it has NEVER been at all effective. In fact, it is very reactionary and
often very counterproductive.
And there is a great deal of running around like chickens without
heads--angry--mad as hell and intent on not taking it anymore--but what
happens?
We get it even worse.
There is very little real thought about how to be effective, what is a
GOOD idea and what is a bad one. There is a tendency to ACT for the
sake of acting rather than thinking things through. And very little
learning from mistakes. And a lot of self congratulations even in the
face of disaster.
And too much about whose feelings are getting hurt rather than focusing
on what are good ideas or bad ones.
>We are in communication with the legal team.
Yes I understand that. However, the introduction sent out under the
CALDA name as written by Lorraine Johnson is still problematic. I hope
that you consider sending out a correction, and not embellish upon what
the legal team has asked for--which is nothing further.
The problem with what Lorraine wrote is that it still attempts to frame
the issue and promote an agenda that the legal team has SPECIFICALLY
not decided to pursue. And, from what I know, it also misstates the
charges--there is no accusation about the long term treatment being
improper per se--it is NOT about diagnosis or treatment of Lyme per se,
it is about diagnosing and treating ANY DISEASE without having seen the
patient--and not for a short period of time, but for five months!
God bless Dr Jones and I fully understand why he might have done that
(if he did and he doesn't seem to deny it). But I'm willing to predict
that the defense is not going to be that it was really okay to do
that--instead it will be that no harm was done, there was a reasonable
basis for the diagnosis, the treatment was reasonably warranted and
properly monitored, and he wouldn't do the same thing again, and there
is no record of his having committed violations in the past, no intent
to do it in the future, no harm done, an impeccable and impressive
record of fifty plus years as a dedicated, caring physician and that no
draconian penalties are warranted--in fact, perhaps he made a mistake
but really there is no need for discipline at all--he won't do it
again, and no harm was done or intended and he took reasonable steps to
prevent any harm from being done.
As a matter of fact, I understand that the letter that Dr Jones first
sent out was done BEFORE he hired a lawyer. And I bet the lawyer was
horrified at the letter Dr Jones did send out.
It just isn't the right tack to take here.
I know how Dr Jones feels, but he needs to avoid communicating to the
Board that he thinks this is okay and he'd do it again. He needs to
show that it was a one time error, a mistake in judgment, and that he
wouldn't do it again. Honestly, a much better approach which is much
more likely to achieve the desired result--the practical result--that
he keeps his license and is able to continue practicing and treating
children with Lyme.
IF the legal team decides on a different strategy, one that involves PR
or (much less likely) influence, or anything like that, well, that will
be on the basis of the particular facts.
I understand that the complaint was NOT filed by some group of doctors
or organization with an anti Lyme anti llmd agenda. I do NOT believe
there is any history of the CT board scapegoating llmds or ever
targeting Dr Jones or any other llmd in CT (and there are only a
couple) before. It is NOT NY or NJ--where, arguably, there is a much
clearer agenda from the medical boards that IS anti llmd--and in those
circumstances a different approach MIGHT be appropriate--depending on
the facts of the individual case.
>But I think we, the
> Lyme community, could benefit from such an approach if it were done in
> another context, much like the AIDS community did and for that matter,
> how we ended the Vietnam war.
There's a big difference. AIDS patients were well organized to begin
with because they largely already fell into groups that had suffered
discrimination. AND the bigger difference is that there was NOT a
medical controversy about the disease--there was a political one--that
involved discrimination against homosexuals by the Reagan
administration and the far right. But there's another difference--their
doctors were on their side and willing to stand up and be counted. And
other differences--they were well before they were too sick to do
anything. And the lethality rate was incredibly high in the beginning.
But Lyme patients are NOT well organized to begin with. There are no
preexisting organizations. And our doctors are NOT willing to stand up
for us and be counted--they don't want their names used on the
internet! And they are a tiny distinct minority with not a lot to back
them up medically and scientifically.
No, I think the situations are very very different and call for much
different strategies. The ACT UP approach won't work with Lyme--it
hasn't and it won't. It just makes us look like the nuts they say we
are.
>NOT in relation to this particular case,
> but as a new approach. I happen to know that govt agencies, NIH and HHS
> for example, have in the past been very concerned when Lyme patients
> converged on Washington in any number (even 10 or 20) that they were
> going to do something outrageous.
Yes because we are perceived as NUTS. So they called security--however
they were not "concerned" in any broader sense. We have no impact, no
clout, no power. And the other thing is that we REALLY do NOT have the
numbers necessary to have any impact, clout or power.
AIDS rallies involved tens of thousands, even millions. So did anti war
rallies in the Viet Nam era.
What is the largest number we have EVER had? A few hundred at a rally
in NY. And often it is ten or twenty folks, some of the dressed up in
tick outfits--and frankly that doesn't add anything to our credibility.
In fact, it hurts--it shows us to be nutty and that is how they dismiss
us and further marginalize us.
All this serves is to vent anger and ire--and it is not effective for
us in our situation, hasn't been and won't be. How many more years do
we have to do the same thing and have the same dismal results?
If a LYme rally occurred in the woods and no one was there to
notice....
> Don't you ever get tired of people being so damn "nice?"
Well, yes but probably not in the sense that you mean. I am tired of
the catering to the most delicate sensibilities and when someone
offends someone else they are shunned--and offending someone has often
been just because one disagrees and says things like a rally is
pointless and not going to be effective.
I do NOT think that being angry and ranting at govt officials or
doctors is going to change their minds. We face a MUCh different
problem--changing attitudes in medicine. And you do NOT do it by
yelling and screaming and calling doctors names.
Medicine as a cultue is often conservative and ideas are very difficult
to change--to change the "conventional wisdom" takes time and effort to
persuade.
You CANNOT legislate it or demand it.
It is a slow painstaking effort that may take years and years but it
involves convincing and persuading by producing our own studies and
evidence and slowly changing people's minds.
Barry Marshall did it with H Pylori. He just received a Nobel prize
too! Years ago he was considered a whacko! And laughed at. He did it
not with yelling screaming cursing protesting rallies but by producing
evidence and changing minds and attitudes.
And that is what we have to do.
Will it be easy or happen overnight? NO.
But after a couple of decades of the former approach failing, we
haven't begun. If we had begun years ago, we'd be that many years
closer. The journey of a thousand steps begins with the first one...
>Oh, I forgot, you aren't nice.
You'd be surprised. I can be. But I can live with not being nice too.
>But I have been
> "nice" and look what they did to us and continue to dish out. You have
> lambasted me for my role on the advisory committee, and maybe I was too
> nice. I wasn't even that nice, but was not able to effect any change.
I acknowledge that PART of the problem was that you WERE lied to.
BUT part of the problem was that you were naive--rather than nice.
Naive in that you needed to get things IN WRITING. You needed to
understand that you DID have certain powers--there were laws about
advisory committees and you were bamboozled--but you didn't do what you
needed to do to understand your powers and to exercise them
effectively. And your options were not limited to signing off and
keeping quiet. At some point your best option was to resign and make
public WHY. And to make issues out of what was going on.
Instead, and it is archived here, people raised concerns--that were
prescient--not just hindsight but warnings aired in advance.
And, as is too typical in Lymeland, people were told to stilfe. The
dissenters were accused of some type of disloyalty. We were told this
is the best we can do and be quiet and go along with things.
It was all very naive. And, incompetent.
But, it was the first time for so many and naivetee ruled the day.
Seriously no disrespect intended.
My bigger issue with it all is that there is no apparent recognition of
the mistakes that were made and no indication that there were any
lessons learned. Because the same attitude is displayed when we've
discussed legislation for example. If we don't support it--and we point
out real problems with it--even real risks and dangers it is WE who are
lambasted and accused of disloyalty and told to stifle--again. Same
thing.
And I dare say if the NIH did another chronic Lyme study, the same
thing would happen today. The same way with many of the same people
involved.
That's the issue.
I also found it very offensive that you refused to answer questions
posed--after all, you were supposed to be a PATIENT representative.
Don't you think that includes some accountability to those you're
supposed to be representing?
> This has nothing, and everything, to do with where Jones is today, and
> I think we all should look at it and change our strategy. Don't you? Or
> are you satisfied with progress? Oh, I forgot, you also don't like
> legislation, presumably even dr. protection legislation such as was
> passed in California recently.
Were doctors being prosecuted in California? Did it change anything?
Don't be so dismissive of the comments that dritte and I have made
about legislation Phyllis. Look at the concerns we've raised--the
issues we've raised.
NO I am NOT satisified with the progress. I see zero steps forward and
many steps back.
Which means that perhaps a VERY different strategy is called for.
And not necessarily one where we are angrier and more militant. Or rant
and rave MORE rather than less.
>So what DO you suggest. How about
> pouring blood in files? Lying in the streets? Tying ourselves to trees?
> Or lie there and get kicked again, and again, and again?
> ps your use of the term "YOUR AGENDA" in capitals gives my suggestion
> much more weight than I would give it. It is only an idea thrown into
> the ring to be discussed, not AN AGENDA.
I suggest that we need to raise money ourselves, provide funding for
studies, build a quantuum of evidence to support our beliefs in the
proper approach to diagnosis and treatment, work WITH academics,
establish our credibility, get our doctors to STAND up--and DEMAND that
they do the right thing--not support some of the disgusting and abusive
practices that go on in SOME llmd offices. That we make rational
decisions, think before acting, and act rationally and in a way that
has some chance of being effective. First I think we need to understand
where we are, what the problem is that we're dealing with, and then
devise strategies to help ourselves.
It is not a plan designed to satisfy the desire for instant
gratification. But again, the journey of a thousand steps has to start
with the first one. And if we do the same damned thing for the next
twenty years that we've done for the past twenty years, we're going to
be twenty years later and even further behind the eight ball.
Sorry there are no simple answers.
But seriously, why don't we have marches for raising funds and
awareness, golf outings, dinners, auctions, runs, telethons etc--and
have our focus on those things to raise money for research--money that
we control and direct. And if we raise money we WILL attract credible
researchers because they need money. And seed money for research will
lead to more research, and then we can get NIH funding for OUR
research--we complain now that we don't get money--but show me the
proposals by our guys that have been submitted and rejected? In fact,
we demand more money for NIH research and CDC programs on Lyme but
right now who do we have that is going to use it in a way that we
approve of? Right now that money is going to Allen Steere et al--do we
really WANT more money for him?
The federal lyme bills are disastrously flawed and would only
accomplish things like that.
I know this probably isn't what you want to hear, and I know it will
not make any difference that I'm saying it, but let's check back in
another 20 years of doing it the way it has been done and maybe then
you'll see that if we did what I'm saying we would have been 20 years
of steps further on our long hard journey....