Hopefully, there won't be too much overlap with Tincup's notes. (BTW, I had the opportunity to dine with Ms. Tincup at the conference, and I'm here to report that she's even more fun in person than online.)

ILADS Conference Report 10/23/04
Part I

Joseph Jemsek, MD, on EM Rashes http://www.jemsekclinic.com/lymedisease.php

His clinic conducted a study of 48 PCR-positive Lyme patients, and found that only 21% exhibited the classic EM rash. Out of all these Lyme patients, only 21% were IgM positive and 10% were IgG positive, according to the CDC criteria. Only 4% of the seropositive patients, exhibiting a required symptom, were CDC reportable cases. What's more, of the 1,000 or so Lyme patients that Dr. Jemsek have treated, only 3 or 4 have had all 5 Western Blot bands required by the CDC.

Conclusions: The CDC guidelines result in a gross underreporting of true Lyme cases, as well as the misdiagnosis of many Lyme sufferers. More reliable testing is needed, and the CDC needs to lower the number of Western Blot bands required, also adding the Bb-specific bands of 31 kDa, 34 kDa, and 18kDa.

David Owen, MD, Lyme Disease Awareness in the UK

In the entire UK, there are only 3 MDs who list Lyme as a specialty. In an informal poll of his patients, only a third know what a tick looks like. Most had never heard of the classic EM bullseye rash. He theorized that there might be a link between Gulf War Syndrome and Lyme (from biting sand fleas).
Conclusions: Don't get bitten by a Lyme-infected tick in the UK.

Steven Phillips, MD, on Persistent Lyme Infections

In this breakneck presentation, Phillips presented an overview of 23 research studies that support the theory that Lyme bacteria are complex, resilient organisms that can survive multiple onslaughts of antibiotics. His citations dispute the widely held belief (supported by Klempner, et al) that Chronic Lyme doesn't exist and that lingering symptoms are a result of an autoimmune response.

He discussed the ability of Bb bacteria to alter its surface proteins to hide from the immune system and to change to cell wall deficient forms (i.e., cysts, spheroblasts, and L-forms), which aren't affected by traditional antibiotics. Bb can hide inside cells such as the macrophages (the white blood cells that are supposed to mop up dead bacteria), and they can congregate in little balls, called blebs, where the outer spirochetes protect the inner spirochetes from antibiotics.

He mentioned that blood thinners appear to disrupt the formation of spheroblasts in the bloodstream, and that could explain the improvement that some patients experience using Heparin.

He posed one thought-provoking question on Lyme transmission; if 88% of ticks that fed on the blood of Lyme-infected mice picked up the infection, then why is it so hard for us to pick up evidence of infection in human blood? Are we testing for the wrong thing?

Dr. Phillips also thinks there is compelling evidence that Bb could be the root cause of many MS symptoms. Both diseases result in the demyelination of nerves and the Bb flagella are made up of the same protein as the myelin sheath around our nerves.

Conclusion: Why couldn't we all get a disease that's EASIER to cure?

Dr. Meer-Scherrer on her Lyme Patient Database

Dr. Meer-Scherrer analyzed Lyme patient data from the "Cameron Surveillance Database." http://www.lymeproject.com/Cameron/Research/Surveillance_Database.htm

Her analysis of clinically diagnosed Lyme patients found that:
42% were seronegative
30% had a positive ELISA
17% exhibited an EM rash
7% tested positive on the IgM Western Blot
4% tested positive on the IgG Western Blot

This covers the morning. I'll post the afternoon sessions later.

Did you get the impression that the ducks present were there to learn something or just disrupt and confuse?

I love research (when I can understand it; this I understood!)!

Amazing that only 21% of PCR positives were also IGm positive. I cant figure out why that would be if both are from blood.

Your summary of Dr. Phillips' presentation of the bb form complexities also concisely brought together alot of my scattered readings.

Thank you for your work! Must have been a great weekend!

"His citations dispute the widely held belief (supported by Klempner, et al) that Chronic Lyme doesn't exist and that lingering symptoms are a result of an autoimmune response."

This lingering sentiment is baseless. Until the other camp of autoimmune based ducks come up with an efficacious immune system regulating panacea for chronic Lyme, their theories don't hold water.

Thanks so much for posting this information. You are saving me from a nightmare of notes.. and I DO so appreciate it.

I am still reeling and rocking from the trip.. so I can't decipher much still and could never write it so nice and proper like you have... even on a good day.

I, too, enjoyed our dinner together. My pleasure.

Funny though.. I was so tired the whole time.

I can actually remember what YOU had to eat because I sat across from you and could see it... but I can't for the life of me remember what I was eating. Pretty sad, eh?

HA! I am laughing because I actually have NO clue. I DO remember stumbling terribly with my words all night. How you made it through supper conversation with me.. is beyond me. But I am glad you did.

I wish we could have chatted more. It was soooooo nice to see a friendly face in the crowd.

If I remember right.. you only could stay one day? Yes.. looks like Saturday...

I will now.. with your kind help.. focus more on the other two days notes and see if that can help me get it together.

Thank you dear Kris Kraft. You are amazing.. and a life saver too!

Will be looking for what's next.

Thank you both for taking the time to let us read your impressions of the conference!

Ann

In plain english, this means the lab tries to capture minute amounts of Bb DNA from either a blood or urine specimen, then make lots of copies of it, so that it's easier to detect.

If you get a positive PCR test, it usually means you REALLY have Lyme DNA floating around in your body, unlike testing for antibodies, which only measures your body's response to a hypothetical Lyme invasion. Sometimes your body creates one-size-fits-all antibody proteins, such as the 41kDA band of the Western Blot, so you can't be 100% sure that that antibody was created specifically to kill Bb. (41kDA can also be created to attack a common bacteria found in your mouth.)

Hey, Tincup, I thought you were very glib and entertaining at dinner. It just goes to show you how well we can hide our disabilities, with a little practice. (BTW, you had a hamburger without a bun.) Oh, and can you email me the Aberdeen report? I need some good bedtime reading :-)

So glad to see this post as well as TC's.

Up for anyone who hasn't seen it.