ILADS Conference--Speakers' fees?

[radicale]

C. Pneumonia is initially a respiratory infection; however, it enter's a latent stage where it hides in your white blood cells and along your blood vessels. While it may not have been the starting point, it could have contributed greatly to your symptoms and your positive ELISA.

It really depends on what the bands were and your immune system status. If you were sick it would not be too far fetched to assume that viruses could become activated on and off.

[Spanky]

"radicale":

C. Pneumonia is initially a respiratory infection; however, it enter's a latent stage where it hides in your white blood cells and along your blood vessels. While it may not have been the starting point, it could have contributed greatly to your symptoms and your positive ELISA.

It really depends on what the bands were and your immune system status. If you were sick it would not be too far fetched to assume that viruses could become activated on and off.

As I said, I'm quite familiar with c. pneumoniae.

I would say, "no". Not even a possibility. No indication of that at all.

Since this last...I edited the last post to note the swollen and painful testicle.

That is a clue, I think.

But what about the positive ELISA with 4 of 5 bands? Yes, that is not CDC positive.

But do you really think that someone in that situation, with symptoms consistent with Lyme...isn't likely to have Lyme?

What do you think of that?

[radicale]

In that case I think you either had Lyme Disease or some yet to be discovered infection.

[Spanky]

"radicale":

In that case I think you either had Lyme Disease or some yet to be discovered infection.

Yep.

That's kinda where my head has been with this whole thing for the past ten years. To my mind, and my doctors, also...the question isn't about the correctness of the diagnosis...but what happened with those two blots? (The screens were done in-house. The first two blots were sent out. To the same lab).

And band 41 was present on all three blots...and it wasn't syphilis. So, probably, also, safe to think that it was most likely some sort of spirochetal infection...that was not syphilis.

But what was also very impressive to me, and my GP...was how we initially focused on Lyme as a possible culprit.

I had been through two years of diagnostic hell...every expensive test that they could think of. A neuro had discounted Parkinson's, MS, ALS...and diagnosed me with benign essential tremor. Talking about the myoclonus stuff, now.

Prescribed atenolol...which did nothing for me. While hospitalized, I noticed that the tremors stopped while under brief antibiotic therapy.

So, we get a second opinion...go to see another neuro...within the first five minutes, he says that only a few things could cause the type of tremor that was observed...and he mentions Lyme.

I say, "LYME"?

He says, "yes, why"? And I tell him about having the tick removed and that was about the time that I started to feel ill.

And then, there was dead silence...for like a minute...at least... we just sat there with our mouths open...

That was kinda like "House".

Quite dramatic.

But what is kind of interesting to me, at least, reading the reactions here...is that if you focus on the negative blots...you can rule it out...IF you ignore all the consistent case history...and the three positive screens.

Unless I am not understanding something properly, those screens have predictive value, as well. They are meant to measure Bb. And three in a row...mathematically, should yield a near 99% value.

But the third blot...if you ignore the first two...pretty well seals it. Doesn't confirm it...but almost.

So...what do you do? Which one?

See, that's the problem...that was my point in bringing this story up...

[radicale]

Looking back through your posts I noticed that the ELISA reactivity increased over time. At one point wasn't this considered enough evidence?

[Spanky]

"radicale":

Looking back through your posts I noticed that the ELISA reactivity increased over time. At one point wasn't this considered enough evidence?

Not sure what you mean there. All three screens were deemed to be positive. Not as far as I know. No.

Before Dearborn the criteria were:

The original clinical case definition (8) from the CDC for Public Health Surveillance and reporting of Lyme disease was:

Clinical Criteria:

Erythema Migrans; or
At least one late manifestation of musculoskeletal, nervous or cardiovascular system disorder; and laboratory confirmation.

Laboratory Criteria:

Isolation of Borrelia burgdorferi from clinical specimens; or
Demonstration of diagnostic levels of IgM and IgG antibodies to the spirochete in serum or CSF (Western blot, ELISA, IFA), or
Significant changes in IgM or IgG antibody response to Borrelia burgdorferi in paired acute- and convalescent-phase serum samples.

Not sure, but sounds like I would have Lyme using the pre-Dearborn criteria. Had the neuro symptoms (why I was tested) plus the cardio and positive ELISA.

But again...the lesson of the story...two different labs...two widely different results.

[Spanky]

Spanky:

Not sure, but sounds like I would have Lyme using the pre-Dearborn criteria. Had the neuro symptoms (why I was tested) plus the cardio and positive ELISA.

And just, in addition to that...if I could, a few personal thoughts, reflections, I can't escape, that have occurred to me about all of that since...

Yeah, it would seem that if I had been seen pre-Dearborn, I probably would have been diagnosed with Lyme disease and given appropriate treatment and care.

Post-Dearborn, I was referred to a psychiatrist and denied treatment, and even was almost released as a patient.

Not exactly a glowing tribute to medical progress. I KNEW how sick I was. Shaking, heart about to jump out of my chest, having trouble walking, testicle hurt so bad that I couldn't sleep at times...and I am referred to a psychiatrist.

Something badly wrong there. Dearborn seems to have created a system that allows patients to be dismissed.

Also...

...the tick that was probably the offender was removed in a hospital by a physician, who apparently knew enough to be concerned about the possible appearance of an EM and asked about it later, without saying what it was that he was asking me to look for. (Why didn't he want to tell me? Was he fearful that I would develop 'Lyme anxiety'?)

I can't help thinking, at times, that all he had to do was to prescribe a few weeks of doxycycline and I wouldn't have had to deal with what happened over the next ten years.

And If the costs to me, personally, weren't enough...what about the costs to the healthcare system?

With all the tests, and a hospitalization included, I would guess that the total bill probably easily exceeded $100,000.

And weigh that against the cost of a few weeks of doxycycline...

There are value judgments, decisions being made...

[inmacdonald]

And In the Beginning:

Was the question for this post "Ilads Conference--Speakers Fees?"
ever
answered?

As an invited Speaker at the ILADS Conference Boston Mass Nov 2,3,4
NO FEES were paid to ANY Speaker. Each speaker was responsible for:
1. Cost of round trip travel to Boston
2. Cost of Hotel Accommodations
3. Cost of Registration Fees required to attend the Conference.
4. Cost of preparation of Audiovisuals to supplement each Lecture.

By mutual agreement, with ILADS, all copyright for each of the lectures was
signed over Free of charge to ILADS, which now owns the Exclusive Copyright
to each of the Lectures.

All of the Costs required to attend the ILADS MEETING were borne by the
individual participants. This Policy is the SAME POLICY that has EXISTED FOR ALL
ILADS MEETINGS.

Any questions?
Best,
a

[Camp Other]

And In the Beginning:

Was the question for this post "Ilads Conference--Speakers Fees?"
ever
answered?

As an invited Speaker at the ILADS Conference Boston Mass Nov 2,3,4
NO FEES were paid to ANY Speaker. Each speaker was responsible for:
1. Cost of round trip travel to Boston
2. Cost of Hotel Accommodations
3. Cost of Registration Fees required to attend the Conference.
4. Cost of preparation of Audiovisuals to supplement each Lecture.

By mutual agreement, with ILADS, all copyright for each of the lectures was
signed over Free of charge to ILADS, which now owns the Exclusive Copyright
to each of the Lectures.

All of the Costs required to attend the ILADS MEETING were borne by the
individual participants. This Policy is the SAME POLICY that has EXISTED FOR ALL
ILADS MEETINGS.

Any questions?
Best,
a

I didn't think that there were any fees paid to speakers, either. I thought all that has been clearly spelled out on the ILADS web site for years, where anyone could look it up.

About the only complaint I have heard about fees regarding IlADS conferences is that once the conference is completed and has been telecast using streaming video, it costs a fair amount to buy DVDs or CDs of the presentations given - especially for patients who are having to bear the cost of treatment that is not covered by insurance.

The one thing I have heard patients say over the past couple years is that they wished the live streaming were available online for a longer period as an archived video - and if not that, wished that the DVDs and CDs were less costly for patients and to have a lower cost set for them as compared to the price for other medical and alternative practitioners who may wish to buy them.

[duncan]

Yeah, I seriously doubt that ILADS realized any meaningful profits on the conference. These events can be costly to orchestrate. Lots of expenses transparent to delegates. If anything, ILADS personnel would likely have made concerted efforts to mitigate expenses wherever and whenever possible.

To really make money off of these sorts of gatherings, you'd have to generate multiples in any given year, or raise the level to Expo status where you'd be pulling revenue from not just attendees and walk-ons, but from Sponsors and exhibits.