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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RitaA
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by RitaA » Wed 21 Dec 2011 18:24

Spanky,

You wrote:
Or...the right of every American citizen under the 1st Amendment to 'mock' his fellow citizens, for that matter, either.

I wasn't saying that I never do that...I do it all the time. I was just saying that I wasn't doing it in that instance.

And I enjoy it.

Favorite targets: Republicans. Green Bay Packer fans. University of Michigan fans. People from Wisconsisn. (It's not serious, just good-natured fun). People who think green bean casserole is a side-dish. LymeNUTS. ILADS. Judges. The list goes on...and on...
Yes, yes. I certainly wouldn't want to deprive you of your fun. :-P

Rita A

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Wed 21 Dec 2011 18:27

"RitaA":
Unfortunately, Lyme disease patients are the ones who get stuck in the middle of all the controversy. That point often gets missed.
But maybe another point that gets missed is that there really isn't a 'controversy'...except one that is artificially contrived, manufactured.

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Wed 21 Dec 2011 18:29

"RitaA":
Yes, yes. I certainly wouldn't want to deprive you of your fun. :-P

Well, be careful, though, then...or I will start mocking the people who accuse me of mocking the other people that I really wasn't mocking...

...and then we will have to form an advisory committee to sort out who is mocking who...

Edited to add:

And I think that, when directing my 'mocking' comments at the LDA or CALDA, I have been careful to 'mock' their stances on policy only...and so far as I know...not attack them personally as individuals. At least, I hope that I haven't...

RitaA
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by RitaA » Wed 21 Dec 2011 18:41

Spanky,

You wrote:
But maybe another point that gets missed is that there really isn't a 'controversy'...except one that is artificially contrived, manufactured.
That thought has crossed my mind too at various times. I believe one contributing factor may be that advances in science can seem painfully slow for those who are ill and want answers today. This is not confined to Lyme disease by any means, so it helps me to keep things in perspective by considering the ongoing efforts to address HIV/AIDS -- never mind malaria and Hepatitis C.

You also wrote:
Well, be careful, though, then...or I will start mocking the people who accuse me of mocking the other people that I really wasn't mocking...

...and then we will have to form an advisory committee to sort out who is mocking who...
But of course. ;)

Rita A

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Wed 21 Dec 2011 18:57

"RitaA":

Spanky wrote:

"But maybe another point that gets missed is that there really isn't a 'controversy'...except one that is artificially contrived, manufactured".
That thought has crossed my mind too at various times. I believe one contributing factor may be that advances in science can seem painfully slow for those who are ill and want answers today. This is not confined to Lyme disease by any means, so it helps me to keep things in perspective by considering the ongoing efforts to address HIV/AIDS -- never mind malaria and Hepatitis C.

Yeah.

And my thinking on all of this has certainly shifted over time, too, but the way I am thinking of all of this, these days, is:

If the four major studies on post-Lyme treatment therapy were to be accepted as valid by ILADS members and their supporters...

...ILADS and all of the associated entities, including the LDA and CALDA would pretty well be out of business.

They would have to close shop unless they could find some sort of legitimate claim that these studies were somehow flawed.

And I haven't seen them being able to do that, either.

But I think that people need to consider just how BIG the money now is probably getting...on the side of the anti-IDSA crowd.

That's a powerful incentive to "believe" in chronic Lyme.

("Chronic" Lyme, there, meaning: persistent infection following appropriate treatment).

Margarita
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Margarita » Wed 21 Dec 2011 19:24

Sorry, Henry, but right now people suffering with late Lyme symptoms are getting no help whatsoever from doctors that follow IDSA guidelines. Until evidence based approach gives us some explanation and treatment we will keep going to the doctors that are ready to help us. Especially when we hear so many testimonies of people getting better on long term Abx and relapsing when off antibiotics.

When the common sense and the experience of all the doctors that treat Lyme are so much at odds with "evidence based approach" maybe it's time to go back and do more studies. Clearly, there is a subgroup of chronic Lyme patients who are being helped by continuing Abx therapy. Maybe it's time to study them and look for an answer, what makes them so different from the patients that are fine after 3 weeks of Abx?

Henry wrote:
I am especially concerned about the tendency of Lyme disease activists and their organizations to condemn and disparage organizations like the IDSA, CDC, and NIH, as though they are all involved in some worldwide conspiracy; that is ridiculous. Most of the recommendations made by these organizations are based on the results of evidence-based research presented in peer-reviewed scientific journals. This is "rock-solid" research, in many cases supported by NIH funding that is very competitive to obtain. If it -- and the scientists who do such work-- can't be trusted, then where does one go to get reliable information?

However, there are certain conflict of interest issues that promote the status quo. In the case of prolonged antibiotic therapy for the treatment of chronic Lyme disease, where is the financial gain in recommending short-term treatment with an oral generic antibiotic that cost "pennies" to complete? That pales in comparison to the cost involved for long-term intravenous antibiotic therapy, administered by a drug infusion company, that is a major supporter of ILADS. The question to ask is who gains from all of this? Certainly not the patient.

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Wed 21 Dec 2011 19:35

"Margarita":
Until evidence based approach gives us some explanation and treatment we will keep going to the doctors that are ready to help us.
But ARE they actually helping you...or...are they helping themselves?
Especially when we hear so many testimonies of people getting better on long term Abx and relapsing when off antibiotics.
And what do you do when you hear testimonies from Lyme patients that say either: "I plateaued"...or..."at some point, I could tell that I was no longer improving"?
When the common sense and the experience of all the doctors that treat Lyme are so much at odds with "evidence based approach" maybe it's time to go back and do more studies.
As I have said before, in other threads...GO FOR IT. But realize that because of the consistent results of the other tests...the PROBABILITY of achieving a different result is not likely.

You need funding to do research. I know where there WAS, once, a million dollars that could have been spent on research.

Gone now.

Henry
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Henry » Wed 21 Dec 2011 19:56

Margarita: You and others often make the claim that a subset of patients with chronic Lyme disease is being helped by prolonged antibiotic therapy. But, there is no way to prove that is so without doing a placebo-controlled study. At least four of them have been done with NIH support and showed no beneficial effects. However, in one study -- the largest one-- there was a placebo effect of 38%. I submit that those testimonials claiming benefit could really be due to a placebo effect.

Also, there are those who test negative according to the CDC criteria, but are relieved to learn that they have Lyme disease after testing positive according to IGenex's criteria that has never been validated. I submit that these people are falsely positive and do not have Lyme disease. No wonder they go from doctor to doctor -- and spend so much money-- trying to find a cure for a disease that they don't have. Granted-- they are suffering from something. But, it's not Lyme disease. :bonk:

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Spanky
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by Spanky » Wed 21 Dec 2011 20:31

"Henry":
Also, there are those who test negative according to the CDC criteria, but are relieved to learn that they have Lyme disease after testing positive according to IGenex's criteria that has never been validated.
Not sure what you are referring to, there, Henry? As I mentioned in another thread, I had IgeneX test me. The reports returned, were based on CDC criteria. (Positive ELISA, negative blot, in my case. It just isn't true that they always return positive results).

And I think that if IgeneX is going to be routinely criticized, then in fairness, it should be 'evidence-based', and aside from the business over the LUAT, if I remember correctly their lab has always passed challenged methods scrutiny. Right?

Granted-- they are suffering from something. But, it's not Lyme disease. :bonk:
Surely...you are not suggesting that some people who have been previously treated do not continue to experience symptoms after treatment?

When you say "Lyme disease" are you meaning active infection only?

X-member
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Re: Christopher Smith's Lyme Disease Bill 2557

Post by X-member » Wed 21 Dec 2011 21:10

This is soo stupid! :D

Whatever you suffer from, it can not be Lyme!

Ok, so now the Lyme problem is solved once and for all! :D

Or, will this problem come back, when they find a better treatment, especially when it comes to late Lyme?

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