ILADS Conference--Speakers' fees?

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Sun 21 Oct 2012 0:46

"RitaA":
Aside from known cross-reactivity seen with other infections (that were apparently ruled out in your case), it seems that any autoimmune disorder can theoretically cause a false-positive ELISA. The list of possible autoimmune disorders with signs and symptoms that overlap with Lyme disease is probably longer than you and I could even imagine, but I also think that's somewhat irrelevant.

Why?

Well, because if you did have some autoimmune disease (other than a post-infectious process) going on, there's a good chance (although not a certainty) that your body would have provided even more clues as time went on. In other words, most autoimmune diseases have a tendency to get worse or at least provide doctors with more clues in the way of signs and symptoms as time goes on. There are exceptions to every rule, but that's generally how it works.

Your health has actually improved -- not declined -- from what I've read in your posts these past two years. It's possible that the tick that bit you was carrying an unusual strain of Lyme disease or another Lyme-like pathogen. My uneducated guess is that you probably had Lyme disease or something so similar that it's almost academic.
Very good! Yes, exactly! A thought that has occurred to me, as well. Pretty sure that it was an infection...because the tremors subsided when hit with antibiotics. And, there was the swollen testicle with no STDs. (You don't want to know. Hurt so bad I couldn't sleep). Was in the hospital with fever once.

So you have an infection...and an infection that causes heart, neurological and arthritic symptoms. All began shortly after the colonoscopy/tick removal.

But thank you for mentioning the fact that I am now fully recovered, also. I agree with your thinking...forgot to mention that. That would seem to discard the autoimmune conditions as a possible explanation. And even the recovery period is more or less consistent. And there were documented instances of what they call the known sequelae of Lyme disease, such as tachycardia, which lasted for years afterward.

I don't even remember, now, how all of this got started...but my point certainly wasn't whether I had Lyme or not...but was intended to illustrate the issue of inter-lab results not being consistent...and why I perceive placing too much reliance on blot results is perhaps problematic.

But a side issue...possible explanation for the negative blots...kind of intriguing...is what IgeneX claims about why their testing is producing better results. That their reagent includes more diverse strains than the B31 used in most labs...the issue of geographic diversification. That regional strains might not react properly with B31. (And the results from IgeneX were NOT classified as being positive by them in my case).

Now, this issue of strain diversification was also discussed by Henry at one point and I recall that he said that he had been concerned about it, that some patients might fall through the cracks, but that he had been reassured by the CDC that such was not the case, that B31 is sufficiently similar to all strains currently to be able to provide accurate results.

My own view of how to look at my case...

...the famous quote from Sherlock Holmes:
S. Holmes: How often have I said to you that when you have eliminated the impossible, whatever remains, however improbable, must be the truth?
The bottom line is that you're feeling better and enjoying life again. That's what really matters.
You damn betcha. :D (Although there may be NO hockey this year).

Kind of windy, here lately...but tomorrow looks promising and I am hoping to hit the bike trails...beautiful color now and weather couldn't be better...could stand it a bit little less windy, though...I sit kinda tall in the saddle...and that's like Marcel Marceau bicycling against the wind. :D
Last edited by Spanky on Sun 21 Oct 2012 1:02, edited 1 time in total.

RitaA
Posts: 2768
Joined: Thu 1 Jul 2010 8:33

Re: ILADS Conference--Speakers' fees?

Post by RitaA » Sun 21 Oct 2012 1:01

Spanky,

On that very positive note, I hope you have a great day biking tomorrow.

Rita A

Claudia
Posts: 1448
Joined: Wed 14 Nov 2007 1:19
Location: Connecticut, USA

Re: ILADS Conference--Speakers' fees?

Post by Claudia » Sun 21 Oct 2012 1:06

Well that last post is very interesting and amusing coming from Spanky, because here he recently wrote:
Spanky wrote:

This may come as a shock to some...but I am fairly certain that not everyone has (or had) Lyme disease.

And granted, diagnosis is sometimes a difficult issue.

But if you cannot explain why there is NO IgG reponse AT ALL...not just once, but apparently across a number of tests...if you cannot explain that...

...then, personally, I wouldn't feel very comfortable with a diagnosis of Lyme disease, based on what I think that I have learned and personal experience.

I would be looking for other answers, as well. At least considering them. At some point, the Lyme diagnosis appears more likely than not.

With no IgG at all... and only late satge IgM...is anyone willing to admit that this may be a case where it is more unlikely than not? Sorry, but based on what is here...

At times, reading online accounts like this...it appears as though the poster is straining to find a way to rationalize or justify the diagnosis in the face of facts that seem contradictory...

...and reacts, sometimes, with anger and hostility to any suggestion that Lyme may not be the culprit. You would think that the important thing would be to get it right.


And yet, some seem to think that the appropriate thing to do is "support" this type of behavior. What kind of "support" is that, exactly?

As I have said, before...how one thinks about the issues may be more important to recovery in the long run than the contents of any abstract that someone has managed to find online.

And there are some 'interesting' psychologies on display at times...

http://www.lymeneteurope.org/forum/view ... how#p31665

Claudia
Posts: 1448
Joined: Wed 14 Nov 2007 1:19
Location: Connecticut, USA

Re: ILADS Conference--Speakers' fees?

Post by Claudia » Sun 21 Oct 2012 1:11

Spanky wrote:

And there are some 'interesting' psychologies on display at times...
Yes, indeed.

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Sun 21 Oct 2012 1:24

"Claudia":
Well that last post is very interesting and amusing coming from Spanky, because here he recently wrote:
Huh? Because of what?
And granted, diagnosis is sometimes a difficult issue.

But if you cannot explain why there is NO IgG reponse AT ALL...not just once, but apparently across a number of tests...if you cannot explain that...

...then, personally, I wouldn't feel very comfortable with a diagnosis of Lyme disease, based on what I think that I have learned and personal experience.

In other words, I'm not at all sure that I would feel comfortable accepting a diagnosis of Lyme disease where there was NO indication of IgG response.
And in my case, there was IgG response. Just not "confirmed" by the blots.

And again...do the math. Three successive screens results in 99%.

That not good enough for you?

You haven't answered my question about the positive screen plus 4 of 5 bands...are you insisting on CDC positive serology in all cases?
Spanky: And there are some 'interesting' psychologies on display at times...
Yes. Some people post their case stories in great detail and then react with hostility when you comment on them, for instance.

If you didn't want comment...and weren't prepared to accept differing opinions, then why post it at all?
Last edited by Spanky on Sun 21 Oct 2012 2:05, edited 2 times in total.

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Sun 21 Oct 2012 1:28

"Claudia":

Spanky: "And there are some 'interesting' psychologies on display at times..."
Yes, indeed.
(Sigh).

Claudia... I'm sorry. You can attack my diagnosis all that you like.

I don't care.

Doesn't bother me.

My doctors were the ones who made the diagnosis. Not me.

Why on earth would you think that it would bother me? Is it because it does bother you?

And please try to remember that the issue of the conflicting blots wasn't raised to address whether Spanky had Lyme or not (who gives a damn? Not even Spanky.)...but was directed toward the issue of different labs coming up with different results...and whether you can, then, have confidence in those results?

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Sun 21 Oct 2012 2:51

"RitaA":
On that very positive note, I hope you have a great day biking tomorrow.


Thanks! I tell you...it is soooo great. The last ten years were so bad...and this is like being let out of school early. Never imagined during that time that I would ever feel this good again. Sometimes it is just...incredible to me. Da Bears don't play until Monday night...so I will have all day...

Everyone else please enjoy the peace and serenity that my absence will surely bring... :D

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Mon 22 Oct 2012 14:34

What I am looking for, here, is something that can cross-react on a Lyme screen...an infection...that causes cardio...neuro...and arthritic symptoms.

Anyone? Anyone have any good suspects, candidates?

And, as a reminder...there are questions pending that haven't been answered...I would like to hear a response, please:

From Bagge to Martian:
ALDF: "A positive ELISA followed by a negative Western blot indicates that Lyme disease is not an appropriate diagnosis".

Bagge: Martian, do you share this opinion?
And:

Spanky to Claudia:
And what would you tell someone who had a positive ELISA and 4 of 5 bands showing?
Regardless of whether it is appropriate to diagnose someone with Lyme by the book in that situation...do YOU think that person has Lyme? If all the symptoms are consistent with that? Would you treat that as if it were a case of Lyme disease?

radicale
Posts: 134
Joined: Fri 4 May 2012 16:51

Re: ILADS Conference--Speakers' fees?

Post by radicale » Mon 22 Oct 2012 20:55

Pick any one of these. The most interesting for you may be chlamydia pneumoniae which showed ELISA cross-reactivity but not Western Blot.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1287758/

User avatar
Spanky
Posts: 2762
Joined: Sun 20 Jul 2008 19:40

Re: ILADS Conference--Speakers' fees?

Post by Spanky » Mon 22 Oct 2012 21:03

"radicale":
Pick any one of these. The most interesting for you may be chlamydia pneumoniae which showed ELISA cross-reactivity but not Western Blot.
Again, not likely.

I am familar with the symptoms of chlamydia pneumoniae. Knew someone who almost died from it.

Not even close. No respiratory difficulties at all.

But what about the Western Blot that showed 4 of the 5 CDC bands?

How do account for that? You think that is just a mistake? With a positive ELISA...and consistent symptoms...what do you think of that?

Anyway...one of the symptoms that I think is an imporatnt clue in my case...often over looked in men...was the swollen and (incredibly) painful testicle.

And remember STDs were ruled out as a cause. The second listed cause at WebMD:
Enlarged or swollen glands and Testicular pain

WebMD Symptom Checker helps you find the most common medical conditions indicated by the symptoms enlarged or swollen glands and testicular pain including Chlamydia (male), Lyme disease, and Abscess.

There are 9 conditions associated with enlarged or swollen glands and testicular pain.

Lyme disease is a bacterial infection spread through tick bites; symptoms include rash, fever chills, and more.
http://symptomchecker.webmd.com/multipl ... ns=34%7C35
Last edited by Spanky on Mon 22 Oct 2012 22:18, edited 4 times in total.

Post Reply