Clock 'ticking' down on Jones

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X-member
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Re: Clock 'ticking' down on Jones

Post by X-member » Wed 21 Jul 2010 23:39

My Dr (and I think most Swedish Dr are) is very responsible, and check with test so I don't be harmed by the treatment.

Maybe there is Dr, that don't do this?

But, if the Dr:s "do things right", what is wrong with givning people who suffer from an chronic infection, treatment that help them?

I, myself is in heaven now, compared to the hell i was living in, before I got this treatment.

Claudia
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Location: Connecticut, USA

Re: Clock 'ticking' down on Jones

Post by Claudia » Wed 21 Jul 2010 23:48

Carina,

I was going to write much of what LymeHystorian wrote -- and what Spanky wrote prior.

I live in the same area as Dr. Jones.

For 5 years my son has been under the care of a medical doctor for his CNS Lyme disease treatment (periods off and on antibiotics during this time). There has never been an issue. Everything has been covered under our private HMO-type insurance.

This doctor makes sure he always sees my son in person on a regular basis, that he has had regular bloodwork to check his liver function, etc. when on antibiotics. He makes sure that my son is seen by other specialists when there are specific symptoms that could be totally unrelated to Lyme, such as a urologist for his urinary hesitation/dysfunction, and a psychiatrist for his psychiatric manifestations.

Also, before (clinically) diagnosing Lyme, he was very thorough in testing for -- and ruling out other possibilities.

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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Thu 22 Jul 2010 1:20

"Carina":
Ok, since IDSA:s Guidelines (IDSA call it Guidelines) are only recommendations, an american Dr can do as he like too, then?
My understanding would be that an individual physician in the US would be free to exercise his/her professional clinical judgment in treating a case of Lyme disease. Do what's best for the patient without fear of professional discipline.

That is, the IDSA Guidelines are not rigid, inflexible mandates that must be followed absolutely (despite what some online activists claim and continually misrepresent).

But what a doctor can do or cannot do, of course, is subject to the standards of professional behavior of the medical profession, as established by members of that profession.

That means that a doctor is supposed to conduct his practice within generally accepted medical standards...and whether or not a doctor has deviated from those standards is a matter of professional peer review.

From my personal perspective, I think that it is important to keep in mind when viewing the political controversy involving Lyme disease treatment in the US (and particularly what is said about it online) that most of the issues involve a relatively small group of doctors who have chosen to make the treatment of Lyme disease a mainstay of their practice, if not specializing in it, exclusively. They believe that the IDSA Guidelines are inadequate.

I think it is probably fair to say that most US doctors would disagree with that.

That is, that most US doctors would willingly, voluntarily accept the opinions of the IDSA on Lyme, as the IDSA is a well-respected authority on infectious disease. That's the basic problem that the activists fail to accept in regard to the IDSA Guidelines. If they, indeed, have some sort of status as an unrecognized standard of care...it is because a majority of doctors accept them as authoritative.

And that is not something that you can address, or should try to address, either legally or politically. Rather, what you need to do is produce convincing evidence that the scientific/medical community accepts, that the current understanding of the disease is incorrect.

One almost never hears of a doctor being subjected to disciplinary measures because he/she strayed beyond the recommendations of the IDSA in a single, solitary case...or even several cases.
What harm have Dr Jones done to his patients?
Well, my understanding is that he can also be subject to discipline for violating the appropriate standards of the practice of medicine.

And that is a matter for his peers...and only his peers to determine. My understanding is that they did find him to have violated certain principles.

From what I gather, for instance, one of the charges involved the prescription of antibiotics to a patient that he had not had an opportunity to examine, in person. While I may have a personal opinion as to whether that would be appropriate or not under the circumstances, only his professional colleagues are in a position to judge. My understanding is that the initial complaints were a result of a divorce proceeding. One parent arguing that the other was subjecting the children to unecessary medical procedures. (If there is some actual evidence linking this complainant to the IDSA or other bogeyman...I have never heard of it).

But the initial decisions of the board allowed Dr. Jones to continue to practice. Nonetheless, the attorneys for Jones decided to appeal the decisions.

Lyme patients are contributing to this defense. Paying for it, under some notion that the complaint, raised by an estranged parent, is somehow linked to the larger controversy over Lyme disease treatment.

One million US dollars have been expended on this so far.
But Swedish experts have started with "a thing" and that is to say, that chronic active Lyme (=of long duration) doesn't exist at all (probably because IDSA claim that chronic/persistent/hard to cure Lyme doesn't exist), and that is absolutely wrong!
Actually, the IDSA doesn't claim, as I understand it, that "chronic Lyme" doesn't exist...simply that there is inadequate evidence, currently, to conclude that it does.

As to whether that is "absolutely wrong"...

...I don't know.

From my perspective, the important thing here is the integrity of the scientific method and process.

And in particular, that it not be subjected to ill-considered attempts to politically leverage conclusions from completely unqualified laypersons.

And I am most definitely an unqualifed layperson. In my view, I am simply unqualified to have an opinion on the ultimate scientific question.

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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Thu 22 Jul 2010 3:55

And back to the original topic:

It would appear that there is a different version being told over at Lymenet about the sequence of events leading up to the monitor being chosen:

Tincup:
Volunteers, including several members from LymeNet and a number of support group members, and his staff made hundreds of personal contacts (phone calls, faxes, etc) to find monitors that would be suitable to satisfy the Board's idiot requirements.

While that was going on...

The company that was recommended by the Medical Board/Department of Health .. uggggg on that... was hired so he could at least get the name of someone to submit by the deadline. They could hardly reject a name from a company they wanted him to contact.

And that way he could meet his obligation and dead-line and not be further sanctioned by the toads. I almost could feel the toads drooling at that point... thinking they could nail him again.

But, the search that we did for a monitor was successful and we may see some changes to this situation?
http://flash.lymenet.org/ubb/ultimatebb ... 001#000025

The newspaper article seemed to indicate that the monitor was the one found by the company that Jones' attorney objected to:
But the board withdrew plans for the hearing Tuesday after learning that Jones had found a monitor. Dr. Robert Elisofon, a retired pediatrician, will review 12 of Jones' patient charts each month. Jones found him with the help of a company that identifies monitors.
The previous article, the one before the deadline loomed saying that Jones had no monitor, had indicated that:
A Massachusetts company that contracts monitors located one for Jones’ case. The company, however, would not tell Jones who the monitor would be and wanted him to sign a contract that Attorney Pollack found troublesome.
So, looks like somebody has gotten their facts wrong...

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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Thu 22 Jul 2010 17:15

"Spanky":

It would appear that there is a different version being told over at Lymenet about the sequence of events leading up to the monitor being chosen:

While on the surface this might appear kind of trivial, petty...I think this is actually kind of, well...revealing...

Today, the activist (Sn) posted the following in regard to the monitor issue:
The one chosen for now (since the one Dr. J located was rejected), see link below, was from the company that was recommended by the health department.
And previously, Jones' attorneys had objected to this...so it sort of looks like team Jones had to swallow their objections at the last minute and either accept this monitor or quit.

Nonetheless, the Sn-cup then tells the poster who asked the (understandable) question about the obvious discrepency to:
".... please try get the facts straight. Not doing so is upsetting to parents and others as they have already told you".
So how, then was the search that she describes "successful"? And listen to this one:
"Oh Suzanna, it was a team effort. I wish we could do more to help parents deal with the garbage that the IDSA tosses our way, but it is good to know it may help parents and allow them more "kid" time and hopefully, less worry! Thanks!

And:
Anyhow, when we learned that the monitor was not accepted at the last minute, concerned folks jumped in to try to help so Dr. J's doors would remain open for the kids.

Volunteers, including several members from LymeNet and a number of support group members, and his staff made hundreds of personal contacts (phone calls, faxes, etc) to find monitors that would be suitable to satisfy the Board's idiot requirements.

I think some have previously noted that the ability of some of these "activists" to "spin" events to their view is, well, quite remarkable, to say the least.

But this one...

Well, I am trying to avoid using the "L" word...but when you spin something...facts... to the point where it is misleading, deceptive...false?

Anyway..."interesting"...to see such a clear-cut example and realize that this is the sort of thing that Lyme patients are being subjected to by so-called "activists"...

...and not always on such a limited basis, either, unfortunately.

And by all means, let's all be nice and call it "spinning" and not outright lying...but if you're asking people to give you money...uhhh...I think you had better do your best to tell them the truth.

Always.

Cobwebby
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Re: Clock 'ticking' down on Jones

Post by Cobwebby » Fri 23 Jul 2010 0:19

Anyhow, when we learned that the monitor was not accepted at the last minute, concerned folks jumped in to try to help so Dr. J's doors would remain open for the kids.

Volunteers, including several members from LymeNet and a number of support group members, and his staff made hundreds of personal contacts (phone calls, faxes, etc) to find monitors that would be suitable to satisfy the Board's idiot requirements.


I don't understand why all this activity had to be done hush hush? But that's the way it is with TC. If she really wants the lyme community behind her efforts than throw the doors open -why keep people in the dark the way she does when she is working on something "really important'. Is there an underlying paranoia going on? And anyway- when she finally does reveal-it's not something she has done- it's just reporting what has been done by others. i just don't get it. Wouldn't the board be impressed to know that the lyme community was working so hard to help Dr. J find a monitor? Oh that's right- I forgot- Dr. J had to rely on an outside company to find a monitor for him.

It is so refreshing to read your analysis of the situation, Spanky.

and Claudia- if I understand your post- your son is being treated for Lyme Disease- but not by Dr. Jones?
I hope you know some of the CT players so you can offer some referrels to other parents who may be feeling a bit anxious with TC hysterics.

VICTORY? Victory for the Board-Thank goodness they came through for Dr. J by accepting the monitor from the outside company. Holy Crab
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Claudia
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Location: Connecticut, USA

Re: Clock 'ticking' down on Jones

Post by Claudia » Sat 24 Jul 2010 16:05

Cobwebby wrote:
and Claudia- if I understand your post- your son is being treated for Lyme Disease- but not by Dr. Jones?
I hope you know some of the CT players so you can offer some referrels to other parents who may be feeling a bit anxious with TC hysterics.
No, Dr. Jones is not my son's treating physician (nothing against Dr. Jones, I would have brought my son to him if it had been appropriate in his circumstance. I have heard nothing but wonderful patient feedback on him from local patients).

At least here in my part of Connecticut, there are several doctors I am aware of that are knowledgeable about Lyme disease and take the infection and its treatment seriously.

Cobwebby
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Re: Clock 'ticking' down on Jones

Post by Cobwebby » Sat 24 Jul 2010 19:31

Thanks Claudia- I agree - I think Dr. Jones is a great and dedicated doctor.
What I object to is the doom and gloom , all is lost if Dr. Jones should have to stop practicing attitude on LNusa.
Just wanted to know there really were other docs for those parents pulled into TinCup's drama.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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