Followup: Lyme, CT patients 10 -20 years later

Topics with information and discussion about published studies related to Lyme disease and other tick-borne diseases.
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Spanky
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Spanky » Sat 14 Aug 2010 23:45

Interesting to think about this in terms of a health insurance perspective. What are the longterm risks of insuring someone who has previously had Lyme disease? And what, if anything, does that tell you about the longterm consequences of the disease?

Usually, the insurance companies know very well what the risks are. That's how they make their money. They analyze the risks and can make a very good estimate of whether they will win or lose money if they issue a policy.

I tried to see if I could get a private insurer to sell me a policy at the time I was diagnosed. I think eight or ten companies were consulted. None accepted.

So, I recently saw some ads and figured, since I'm now more or less symptom free...let's see if I can get a policy, now.

I was rejected in two days. I think one day was even a Sunday.

The reason? Previous diagnosis of Lyme disease, tachycardia.

What does that mean? Well, to me, it means they clearly don't want to take a risk on me. But whether they actually know something...or just won't take the risk because they don't know...are uncertain of the risk...

...I don't know. But what that says to me, is they don't like my chances of not needing major healthcare expense again in the near future. So, I had better think about what that means to me.

There is a lot of this, "I don't know" going around in Lymeland...and yeah, beware of anyone with all the answers.

There are only questions.

Cobwebby
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Cobwebby » Sun 15 Aug 2010 0:53

Perhaps it's different if the insurance is provided through an employer, but in the past few years I have shifted from one insurance company to another with no problems. Lyme disease has never been an issue.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
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Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Sun 15 Aug 2010 2:39

Spanky wrote:

...and yeah, beware of anyone with all the answers.

There are only questions.
Yes. Exactly my point in bringing this thread up.

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Sun 15 Aug 2010 4:27

Picture of map referenced in my November 11, 2007 post (a broken link there now) of "Total Lyme Cases Reported by the CDC 1990-2006": note the reported count is 265,486 cases during this 16 year period, and the CDC estimates that this represents only about 10% of the actual cases that meet CDC surveillance criteria.

Image

Again, Steere et al in their published study offers long term (10-20 year) follow up results on just 84 individuals. These were Steere's original Yale study participants, which met his very narrow symptom definition at that time. This is significant because he favored patients with swollen knees -- and excluded patients with psychiatric manifestations of the disease.

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Spanky
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Spanky » Sun 15 Aug 2010 13:26

"Claudia":

Yes. Exactly my point in bringing this thread up.
Well, what was your point in bringing this up,then?

Sorry, but I'm not following you...what signifigance does this have for you?

I don't get it...

If the point of this article was about the uncertainty of outcomes compared to treatment options...the currently available evidence just doesn't support any improvement.

Until the available evidence does support some improvement in short term or long term outcomes...then the ILADS approach, I think, has to be correctly described as being founded on belief, rather than science.


(But back to the insurance thing...I would have to suspect that someone, somewhere, has been compiling stats on how much a person previously diagnosed with Lyme spends on healthcare compared to the average.
That's just the type of thing they do. That might be a good indication of longterm consequences).

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Sun 15 Aug 2010 14:22

Claudia wrote:

Spanky wrote:

...and yeah, beware of anyone with all the answers.

There are only questions.
Yes. Exactly my point in bringing this thread up.
I was agreeing with you that there are more questions, more unknowns, than answers. That was my point, the significance to me in bringing up this thread to begin with.

I am also interested when old threads resurface, by myself or others, to see any new discussion, points of view, new directions that the thread may take, such as your contribution about the long term health insurance consequences for Lyme patients. -- from both older, and the newer forum members that may be reading it for the first time.

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Spanky
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Spanky » Sun 15 Aug 2010 16:10

"Claudia":

I was agreeing with you that there are more questions, more unknowns, than answers. That was my point, the significance to me in bringing up this thread to begin with.
Well, I guess my reaction to the original thread, though, is...???

So? Doesn't tell you very much of anything, really.

The only thing that I really take away from it is that it sounds like people who had some degree of facial palsy may still have some residual effects, years later. Permanent damage is something people seem not to want to talk about. And if that's the case, then bombarding it with even more antibiotics is not going to help, either.

The other thing, to be brutally frank, is the just silliness and pure goofiness of some online Lyme discussions. The piling on of speculation on top of conjecture and surmise and suspicion.

Great example there. You've got 22% not participating...

...and within a very short time, you've got a very laughable implication that maybe they died a horrible Lyme death...contact, c/o: Melanie 'the Grim' Reber.

A couple of LymeNUT's alltime hysterical whining priss-britches at their goofy best, there.

Claudia
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Claudia » Sun 15 Aug 2010 16:38

Spanky wrote:
The other thing, to be brutally frank, is the just silliness and pure goofiness of some online Lyme discussions. The piling on of speculation on top of conjecture and surmise and suspicion.
Yes, and the pontificating.

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Spanky
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Spanky » Sun 15 Aug 2010 16:44

"Claudia":

Yes, and the pontificating.
Oh, well, if someone is "pontificating" (as opposed to discussing, throwing out ideas)...then the thing to do is to take them down a notch by simply answering them, don't you think?

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Dr Googlittle
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Re: Followup: Lyme, CT patients 10 -20 years later

Post by Dr Googlittle » Fri 17 Sep 2010 22:36

Hi,

Perhaps this paper might be relevant to this thread:

J Neurol. 1989 Sep;236(6):322-8.
Meningoradiculitis and encephalomyelitis due to Borrelia burgdorferi: a follow-up study of 72 patients over 27 years.
Krüger H, Reuss K, Pulz M, Rohrbach E, Pflughaupt KW, Martin R, Mertens HG.


Abstract
In 1987, follow-up studies were conducted on 72 patients who had had meningoradiculitis and encephalomyelitis (8 patients) due to Borrelia burgdorferi 5-27 years previously. These patients had not been treated with antibiotics, either during the acute disease or during the interval prior to follow-up studies. The patients had exhibited the typical symptoms of Bannwarth's syndrome during the acute phase. At the follow-up studies, 33 patients showed no, and 23 only mild, clinical residual symptoms including normal CSF findings and low-positive serum IgG borrelia antibody titres (IFT; ELISA). Three patients without sequelae exhibited persistent intrathecal secretion of oligoclonal B. burgdorferi-specific CSF IgG antibodies (Immunoblot; positive borrelia CSF IgG antibody titres). Thirteen patients exhibited mild-to-medium sequelae with persistent intrathecal formation of oligoclonal B. burgdorferi-specific CSF IgG antibodies, up to 21 years after the acute illness. This persistence can be interpreted as an "immunological scar syndrome". Our follow-up studies appear to indicate that neurological manifestations of B. burgdorferi infections are generally (with few exceptions) of a benign nature. Most patients can be classified as having been cured without antibiotic therapy. No late manifestations of chronic progressive CNS borreliosis comparable to that of neurosyphilis have been seen following acute untreated neuroborreliosis.

PubMed: http://www.ncbi.nlm.nih.gov/pubmed/2795099

These guys never got treated in spite of a close to guaranteed Lyme infection. It is a bit fun to read the paper, since some of them obviously have titers high enough to warrant the investigating med's to recommend an antibiotic treatment....after 27 yrs. But these guys are like; Huh, why me I feel just ok? While yet another guy who doesn't qualify for treatment on the grounds of IgG still has to treat himself with corticostereoids for a chronic licen ruber planus, which I personally willing bet >1€ is caused by persistent Lyme.

A less attracctive aspect about this particular reference is that it has been most frequrently used by notorious anti-borrelia activist MD's as a means of proving that borrelia is self-limiting without any treatment. It has even cited in national Lyme treatment recommendations in at least one country, to this effect.
Best regards,
DrG
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