Thursday, October 20, 2011

0 Where Have All The Sane Lyme Patients Gone?

Here is an exchange I've seen elsewhere on the internet, names removed to place more focus on the content:

Do you think that morgellons stuff is a joke? Or lida mattman saying that Lyme can be transmitted by doorknobs and pens? Or that every sample she's ever seen shows Lyme?

No, those who put forth these theories are not joking. And no, I do NOT believe these things. And YES, I think they are damaging.

there are minions ready to believe anything.

This is true --patients who remain ill and find themselves fighting mainstream treatment guidelines have become angry and confused, and almost anything sometimes seems possible to them. They lack the scientific/medical background to distinguish.

Sober? Maybe. Not when they insist that mcsweegan is poisioning their well water though. I've heard some crazy stuff.

This is an old story. Let's move on. The baton has passed.

More sober and savvy than most people who have ever posted here? Sure. But that is like saying that they see and hear better than Helen Keller.

Many times people work behind the scenes because of forums like sci.med, which have gotten issues so knotted and confused.

I know some people with Lyme who aren't extremists. But they're few and far between.

Define extremist: In some circles, simply believing the cure didn't take after 28 days doxy is considered extreme. I find that if I talk to people logically and rationally they can respond in kind. Most people I have met in Lyme are turned off by the outrageous antics of the most notorious protagonists here, and I will not name the names. I don't know who you have met --but those I speak to, while sometimes empathetic, are NOT marching in line with a RICO lawsuit.

I've seen more than one "llmd" and waited in their waiting rooms with other lyme patients and heard them start talking or started talking with them. They're "informed" but don't seem to distinguish between what is good information and what isn't.

They are very confused by the situation --but the confusion starts with what medicine has handed down to them, not with the patients. If you create an artifactual disease that people don't have, then the patients who don't fit your model might be accused of factitious illness. It's a very frustrating situation for patients. The psychopathology starts with medicine, and patients are caught up and then labelled pathological, themselves. It is one of those Freudian boxes --the patients find there is no way out.

I don't see a lot of rationality anywhere.

It's hard to be rational in the face of an irrational situation that predated your involvement.

I don't think that two wrongs make a right and that rigid academic experts views are "balanced" by the views here.

Of course I do not believe this --I am simply saying that extremism begets extremism. I hold to my view that the dysfunction in Lyme was kicked off by biomedicine and not by patients.

It is just as easy to conclude that both are wrong and that maybe the "truth" is somewhere in between. Or nowhere in between but somewhere else entirely.

You must resolve dysfunction before you attempt to learn the truth.

I think you're glossing over things. Let's say you reject what the  academics say. Why does that mean that you have to buy into what Lida Mattman says?

I don't buy into what Mattman says. And nor do I reject academic research --some of what the academics say is right-on. But some of them have misused their craft and trampled the scientific method (perhaps unwittingly) in the process creating an unduly restrictive disease definition, discarding or twisting data, and spawning an untenable, dysfunctional situation out in the field. Most patients who appear dysfunctional once they get to Lyme were perfectly functional before --it is the scene and the situation --the disturbing dissonance between patient experience and medical paradigm-- that is at fault.

Rejecting the false negatives on elisa or western blot doesn't mean accepting a specific Lyme speciality lab's test results does it?

we don't need to keep debating this --of course not.

Have Lyme patients made things better?

Sadly things have not gotten better, but worse, IMO.

So you didn't answer the question. Where have all the sane Lyme patients gone?  Where is the forum, in real life or on the internet where I can find them? Where do they dominate? Where is rationality revered over reactionary radicalism?

I have met many MANY sane Lyme disease patients. I am sorry you have not. They are everywhere.

Lyme patients are fully to blame for how they've responded to the medical establishment.

Lyme patients are between a rock and a hard place --they have been dismantled, dismissed, and made fun of; they have been misdiagnosed for so long they develop chronic illness when they could have been totally cured. Lyme patients are angry. But they have not often strategized well in the past, I'll grant you that.

It's been a very bad confluence of situations and personalities all around, I'm afraid. It is, in short, a disaster: But if you don't look to what has transpired in medicine and science to stanch out the dysfunction, you will be spinning your wheels to the end of time. Should Lyme patients do a better job of achieving this? Yes of course.



And another comment from a Chronic Lyme Disease patient seen elsewhere, from someone who reminds me of LymeEngima (but was not identified as such):

"I have Chronic Lyme and I hated the movie “Under Our Skin”.  All it did was try and instill panic in people who are already sick and vulnerable to making desperate choices.  [...]
The IDSA Guidelines scare me. The doctors who treat Lyme scare me. The treatments scare me and the fear and anger around the whole subject scares me. Nothing about Lyme resembles even handed scientific principles and more closely resemble hysteria."

Comments such as this are rare to come by online. Few Lyme disease patients have said anything negative about UOS or admitted that everything about Lyme disease scares them.



These comments are a prelude to my own post about why and how dealing with Lyme disease drives me crazy, so I put them here for review and discussion.

Any thoughts from those of you reading along?

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