Clock 'ticking' down on Jones

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Cobwebby
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Re: Clock 'ticking' down on Jones

Post by Cobwebby » Wed 21 Jul 2010 4:59

Unbelievable!
Regardless- the clock is still ticking down for Jones-like it or not.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Wed 21 Jul 2010 16:09

Cobwebby wrote:Unbelievable!
Regardless- the clock is still ticking down for Jones-like it or not.
Here is a bit I noticed over at Lymenet, that, I guess, more or less sums up what I gather is the general attitude, the driving force behind this farce:

If I were Dr J, retirement would not be an option. Unless he stays it is a victory for the other side and sends a message that if you treat lyme aggressively that they will hound you until you quit.

There is a lot riding on this battle. We have to let them know that we will fight! We have to let them know that we will win and make them look like fools in the end.
Yeah. Sure.

Well, who, exactly are "they", anyway?

The parent that filed the complaint against Jones stemming from the divorce proceeding?

How, exactly are "they" connected, here? How does that work? I remember when Alan Steere was public Lyme enemy #1. Then it was Klempner. Then Wormser. Now, I guess, just the IDSA in general. Gotta have enemies.

And what message does throwing away $1 million to the winds really send?

Who are the "fools"?

I wonder if the people responsible for leading this grand, glorious charge will ever feel any sense of responsibility or even shame, for taking these people's hard-earned money and just wasting it?

These are, after all, the very same people they claim to be helping, right?

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Re: Clock 'ticking' down on Jones

Post by X-member » Wed 21 Jul 2010 19:07

Spanky, you wrote:
"I wonder if the people responsible for leading this grand, glorious charge will ever feel any sense of responsibility or even shame, for taking these people's hard-earned money and just wasting it?"
Please let us know if you know any Dr that know how to treat (with the only options to treat that we have today) chronic ACTIVE (hard-to-cure) Lyme in children, that is cheaper!

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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Wed 21 Jul 2010 20:00

Carina wrote:Spanky, you wrote:
"I wonder if the people responsible for leading this grand, glorious charge will ever feel any sense of responsibility or even shame, for taking these people's hard-earned money and just wasting it?"
Please let us know if you know any Dr that know how to treat (with the only options to treat that we have today) chronic ACTIVE (hard-to-cure) Lyme in children, that is cheaper!

Sorry if my wording wasn't exactly clear or precise, but that statement that you have quoted is not referring to treatment issues, but the very specific (lack of) legal merit (in my opinion) of the continued, laborious, defense of Dr. Jones before the Connecticut Medical Board, here in the US.

Only.

What I was saying, (and have said, several times, now), is that it is simply wasting Lyme patient's money to continue to pursue the matter and appeal decisons that allowed Jones to continue to practice.

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Re: Clock 'ticking' down on Jones

Post by X-member » Wed 21 Jul 2010 20:46

I think that every Dr who help us who suffer from chronic active (hard-to-cure) Lyme, need all the support we can give!

And, I don't understand why they don't change the IDSA-Guidelines to be only recommendations.

I Sweden we only have recommendations, so a Dr in Sweden can actually do as he like.

I am sorry that I misunderstood your words, but it sounds like you think that Dr Jones (and his patients) are "wasting their money for nothing".

But, what I have seen, it lookes like "things are changing" all over the world, so maybe we (who suffer from chronic active, and hard to cure Lyme) one day don't have to discuss (over and over again) what IDSA "don't want to understand"!

Cobwebby
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Re: Clock 'ticking' down on Jones

Post by Cobwebby » Wed 21 Jul 2010 21:00

Carina-
Are there pediatric Lyme Specialists in Sweden?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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Re: Clock 'ticking' down on Jones

Post by X-member » Wed 21 Jul 2010 21:46

Cobwebby, you wrote:
Carina-
Are there pediatric Lyme Specialists in Sweden?
Nope, the nearest one is in Germany!

Swedish Dr are allowed to do what they like, but in the most cases they don't. Maybe because IDSA (and our own infection "specialists") claim that we don't exist. :?

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Spanky
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Re: Clock 'ticking' down on Jones

Post by Spanky » Wed 21 Jul 2010 22:01

"Carina":

I think that every Dr who help us who suffer from chronic active (hard-to-cure) Lyme, need all the support we can give!
When used in the United States, it is important to realize that the words "chronic Lyme" technically mean a persistent, recurring infection AFTER treatment.

This is a problem for many on US-based Lyme boards, also.

The terms are often used indiscriminately to apply to any continuing symptoms following treatment, regardless of cause.
And, I don't understand why they don't change the IDSA-Guidelines to be only recommendations.
The IDSA Guidelines ARE only recommendations, despite what you may have read elsewhere.
I am sorry that I misunderstood your words, but it sounds like you think that Dr Jones (and his patients) are "wasting their money for nothing".
That was specifically talking about the wisdom of continuing to defend a medical disciplinary proceeding, or not.

I was talking about the specifc advantages and disadvantages of political/legal issues involving the situation with Dr. Jones.

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Re: Clock 'ticking' down on Jones

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

Spanky, you wrote:
"The IDSA Guidelines ARE only recommendations, despite what you may have read elsewhere."
Ok, since IDSA:s Guidelines (IDSA call it Guidelines) are only recommendations, an american Dr can do as he like too, then?

In Sweden, there is (of course) also a "rule" for Dr:s not to do any harm.

What harm have Dr Jones done to his patients?

Spanky wrote:
"When used in the United States, it is important to realize that the words "chronic Lyme" technically mean a persistent, recurring infection AFTER treatment."
Exactly what we who suffer from chronic Lyme in Sweden mean too!

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!
Last edited by X-member on Wed 21 Jul 2010 23:25, edited 1 time in total.

LymeH
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Re: Clock 'ticking' down on Jones

Post by LymeH » Wed 21 Jul 2010 23:25

Carina wrote:Swedish Dr are allowed to do what they like, but in the most cases they don't. Maybe because IDSA (and our own infection "specialists") claim that we don't exist. :?
Carina wrote:I think that every Dr who help us who suffer from chronic active (hard-to-cure) Lyme, need all the support we can give!
There are ethical obligations imposed on physicians in the United States to First Do No Harm. Many of the Lyme physicians are treating patients with unproven protocols and using medications excessively or for unproven off-label uses. Those non-standard, unproven uses have not been thoroughly evaluated. When physicians start throwing medications at some perceived chronic infection haphazardly the patient often suffers. There are many risks associated with the Lyme 'treatments', aside from the questions regarding long-term use of antibiotics. Just look at the adverse reaction lists that accompany most medications. Some of those are very serious, life-threatening problems and can result in permanent injury to the patient.

People seem to become obsessed with chasing the bacteria and forget about all other aspects of the medical care. This jeopardizes the patient’s health, and for that matter, it can jeopardize others, too. Too many physicians do not seem to be able to distinguish the difference between a drug-induced reaction/interaction and a Lyme symptom, or they don't even consider the possibility of drug-induced symptoms. This is true even when they are the ones prescribing the medications.

When physicians disregard all other possibilities for an illness and simply throw every treatment known to them at the patient, it is reckless and endangers lives. I understand you to say that in Sweden doctors can do as they please. Well, fortunately, I live in the United States and doctors can't simply do as they please.

Just because someone is ill and another offers to help them, does not mean that the help is good. There is a huge difference between the cautious use of controlled treatments and controlled use of medications for off-label uses, and a complete lack of restrictions on medications and treatment. Additionally, it is not safe to be putting extremely ill people on IV's and expect them to infuse themselves safely. There are substantial risks of infection.

No, allowing doctors to “do what they like” is not safe. There needs to be established standards and guidelines. There are too many doctors/people out there willing to treat people as perpetual patients, either intentionally or out of sheer ignorance. Ethics...ethics...ethics…

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