Topic: Any News Yet from LDA/Columbia Conf. This Weekend?
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Phyllis Mervine posted in our TxLyme Yahoo group that she is tweeting from the LDA/Columbia Conf. this weekend in St. Paul, MN. However, I don't tweet and don't want to bother learning to tweet.
I'm impatient and eager for any updates from that meeting, no matter how inconsequential. That's why I came here to Lymenet. I'm bummed 'cause I haven't found any news about it yet. Are there any topics about it that I might have missed seeing here at Lymenet, perchance?
Is anyone following Phyllis'es tweets? If so, please repost here at Lymenet for the convenience of us non-tweeters. TIA.
Posts: 4563 | From TX | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
From experience-- when you get home from the conference you are generally beyond exhausted. Often too, folks in better health also go other places when traveling, either before or right after the conference- like on vacation or visiting relatives.
I've heard back from BettyG, but not with any Lyme related news. She is resting now and should put something out later.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Hi Tinny, I was hoping to go, so I reserved a room because I knew that it would be refundable, but I cancelled it as the date got closer when I knew that it wasn't going to work out for me this year afterall. Too much else going on in my life right now, not to mention the expense, so I had to give up on the idea. I'm disappointed not to have been able to attend. That's why I'm eager to hear what folks learned there.
Does anyone know if it was recorded? And if so, then how can we order the CD or whatever format it was recorded in?
Posts: 4563 | From TX | Registered: Sep 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
So sorry you couldn't make it. Me either. I haven't seen any science yet, but if I do I will be sure to share it.
OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
posted
It was not recorded.
Excellent speakers.
Zhang was outstanding, his work may possibly be the most important research in terms of what will effectively treat and possibly cure LD.
He presented what can be found in his journal publications on effectiveness of different, already approved Rx.
Google his name, Ying Zhang, and the terms Lyme disease persister and you will find his papers.
He is from Johns Hopkins U. One of his suggested combinations was Daptomycin, Cefperazone, and Doxycycline.
He has expanded "persister theory," common to other infections, to Lyme disease. This rests on the premise that there is a different type of persisting Lyme disease organism termed "persisters" that the routine treatment does not knock down. It needs a different type of antibiotic combination.
I caution his studies were "in vitro," or in the lab/test tube and were not performed "in vivo" or in patient studies.
But he was fabulous and his several recent papers can be found online and thru keyword searches, as well as in PUBMED, the gov't searchable archive. The website address is too long to type from cell, but Google PubMed and it will pop up.
That was PUBMED, BTW, not CLUBMed!!
One of his papers reviewed a host of currently approved Rx, including those outside the antibiotics class, and found many drugs for future investigation that had notable activity.'
Apologies for errors, can't see what is typed.
It was an excellent conference, possibly the best yet, and thanks to many volunteers, expenses were kept down.
St. Paul was fabulous, the hotel extremely affordable, and the van drivers accommodating to drive one down by the MISSISSIPPI, to see that wonderful, powerful, mystical River and paddleboats!!
The Cathedral of St. Paul was Gothic and Majestic, with hotel happy to send a van to transport attendees to church as needed.
St. Paul has cool walkways above ground from building to building, miles of them! And a lovely riverside walk that extends for miles.
Exhibitors were unusually plentiful and the best I've seen in terms of materials presented. Also there were Abstracts on display via posters, with researchers there to answer questions. I thought they were Fabulous and kept encouraging them to stay the course; they are doing important work.
I am not sure if my other notes are decipherable. The room was dark for presentations, and notes still in suitcase, I hope!
BTW LDA still has the pre-conference video on their site, as well as a really cool, new, downloadable poster on Cardiac Manifestations of Tickbourne Diseases, which could be downloaded onto nice paper and given/sent to just about every physician you know.
Think it's in the Resources section. This is your heart on Lyme, who knew!! (many did but this is a GOOD and precise summary/visual).
Other news, The Lyme Times is going to an expanded Digital format. Not just a downloadable PDF for subscribers, but links and embedded materials that are incorporated by the powers of Digitization. Well worth the subscription price, which can be tax deductible.
Many excellent speakers, will try to post a few notes when recovery time is achieved.
MidWest folks were quite excited to have the conference there and are fabulously active in their areas, educating the world around them.
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
Thanks, OptiMisTick. That's just the kind of news I was looking for.
I'm also curious if there was any opportunity for networking with other state leaders concerning political activism in their separate states and parts of the country. That's the main reason that I had wanted to attend in person.
For me, one of the highlights of the ILADS Conf. last year was getting to attend the smaller break-out session on Legal Issues for LLMDs because of the opportunity to meet with Atty. Monte Skall and his wife who master-minded the bill that passed and was signed into law in their state of Maryland.
In case you've forgotten what it was or hadn't heard about it, their new law requires anyone who administers a Lyme diagnostic test, whether doctor or PA or NP or even the lab drawing the blood sample, to inform the patient both orally and in writing that a negative Lyme test result does not mean that the person does not have Lyme disease.
I'm hopeful that we can muster the forces needed to get a law on the books like that here in Texas, but we've lost two of our key leaders who passed away this last year.
Again, thanks for your very thorough report. I'm bummed that the conference wasn't recorded though. Hopefully, others will add to this topic later after they have recovered from their exhaustion.
In the meantime, if anyone else sees any other news reports coming out of this recent LDA/Columbia conference, please post a link to those articles here for our mutual convenience. TIA.
Posts: 4563 | From TX | Registered: Sep 2002
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OptiMisTick
Frequent Contributor (1K+ posts)
Member # 399
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Just a note that audio-visual costs for recording as in past conferences has skyrocketed enormously, and I also know this from our town, like by a factor of 10. To do this would have destroyed affordability of the conference, I am sure.
It's a tradeoff.
Other entities do recordings but their conference gate fee is roughly double or more. And most patients are on Lyme patient salaries.
But if you went to the ILADS conference last year, you are more than aware of the significant difference in registration fee, and hotel fees as well.
This conference is a science-centered conference, presenting the latest research for physicians, researchers, officials, gov't, medical professionals and students primarily, and patients, too.
There are no sessions in the conference for anything but science-oriented topics. The research has been so good in the past few years, and the receptiveness more positive in general since CDC announced, "My Bad, it's 300,000 new cases a year and not 30,000," that they probably could have had another entire day of the most recent and cutting edge research.
Anyway it was the 17th Annual Scientific Conference, and has a different focus from ILADS.
BOTH are terrific. We are lucky for all who present at both conferences and the broad range of folks who present at no stipend to themselves, at both conferences, to advance the science and the art of treatment.
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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Thank you OptiMisTick for your report! I agree, Zhang's work is very promising.
Posts: 109 | From The Netherlands | Registered: May 2014
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