Christopher Smith's Lyme Disease Bill 2557

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by X-member » Tue 27 Dec 2011 20:44

Spanky, you wrote:
All we are talking about is an attempt to provide doctors who see patients with the best advice and information possible. Would you rather they not do this at all?
Where do we (or our physicians) who suffer from a more complicated Lyme find this info and advice, Spanky?

I give you an example:

"Complications of Coinfection with Babesia and Lyme Disease After Splenectomy"

http://www.jabfm.org/content/21/1/75.full

Quote (but it is more info in the site):
He was prescribed doxycycline but did not improve. Twelve days after presentation he noted myalgias with associated difficulty walking and was seen in the emergency department. Intra-erythrocytic parasites were noted on a thick blood smear; malaria was diagnosed and the patient was prescribed oral chloroquine.

One day later the diagnosis was changed to babesiosis and treatment was changed to oral clindamycin and quinine. Several days later the patient was hospitalized with dark-colored urine and Babesia parasitemia of 4%. He initially received intravenous quinine and clindamycin, but he did not respond and treatment was changed to atovaquone, azithromycin, and a 2-week course of doxycycline. He developed adult respiratory distress syndrome, presumably from a Babesia parasitemia now up to 16%; this necessitated an exchange transfusion. The myalgias and weakness worsened and primary demyelinating polyneuropathy was diagnosed on electromyography. A magnetic resonance image of the brain was normal but serum IgM and Western Blotting were positive for Lyme disease. Despite a 1-month course of ceftriaxone, neuropathic symptoms did not improve until he received a 5-day course of intravenous immune globulin (IVIG).

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 27 Dec 2011 20:59

"Carina":

Spanky wrote: "All we are talking about is an attempt to provide doctors who see patients with the best advice and information possible. Would you rather they not do this at all"?
Where do we (or our physicians) who suffer from a more complicated Lyme find this info and advice, Spanky?
Well, again, Carina, I think it is fair to say that the intent behind the IDSA Guidelines was to provide a general statement about the treatment of tickborne diseases that applies to most instances...noting that those guidelines were not to be interpreted as supplanting, or substituting for the individual clinical judgement of the physician.

So, they are directed at the vast majority...and not the isolated exception.

What I constantly hear from online patients are arguments that stress exceptional circumstances, as if these somehow invalidate the general rule...

...which we are ALL supposed to understand is not correct.

The exception does NOT invalidate the rule.

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by X-member » Tue 27 Dec 2011 21:09

Spanky, you wrote (about IDSA:s guidelines):
So, they are directed at the vast majority...and not the isolated exception.
Is this a forum for "the vast majority" only?

Isn't this forum for people with more complicated Lyme?

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 27 Dec 2011 21:20

"Carina":

Spanky wrote, in reference to the IDSA Guideline: "So, they are directed at the vast majority...and not the isolated exception".
Is this a forum for "the vast majority" only?
Well, no. Not that I am aware of. But I was replying to comments directed at perceived faults with the IDSA Guidelines...and saying that one needs to remember that when drafting a document like that, you probably can't take into account all possible exceptions to the general rule.

You have to keep it generalized if it is to become a useful document and not an incomprehensible mess.

But what I am saying also, is that I think it should also be kept in mind that most of the people online who are talking about this are probably somehow exceptions to the general rule...

...so you are probably getting a type of "optical" illusion...of the minority actually being the majority of cases.
Isn't this forum for people with more complicated Lyme?

I wasn't aware that it was for them, exclusively.

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by X-member » Tue 27 Dec 2011 21:23

Spanky:
Carina: Isn't this forum for people with more complicated Lyme?
I wasn't aware that it was for them, exclusively.
Why not start a topic about uncomplicated Lyme cases, then?

Why discuss it (or give info about it) in this topic?

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Tue 27 Dec 2011 21:30

"Carina":
Why discuss it (or give info about it) in this topic?
This topic was about a piece of proposed legislation currently pending before the US House of Representatives*.

No offense intended, but I really don't think that you should interpret any topic posted here as allowing a discussion of 'complicated Lyme'.

In accord with the Admin's wishes...we need to at least TRY to appear to stay on topic.

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* Edited correction. Originally said "Pennsylvania House". Kind of funny, but understandable mistake, as the thread that discussed that legislation went in the exact same direction.
Last edited by Spanky on Tue 27 Dec 2011 23:56, edited 1 time in total.

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Re: Christopher Smith's Lyme Disease Bill 2557

Post by X-member » Tue 27 Dec 2011 21:47

Spanky, you wrote:
This topic was about a piece of proposed legislation currently pending before the Pennsylvania House of Representatives.

No offense intended, but I really don't think that you should interpret any topic posted here as allowing a discussion of 'complicated Lyme'.

In accord with the Admin's wishes...we need to at least TRY to appear to stay on topic.
Ok!

Let us do that!

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