Keebler
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posted
- Just realized I'm way behind schedule (but then I remember that I can't access this, anyway this year).
This is medical because many here may not realize to stop whatever they are doing tonight and plan their foods, their duties, even shower time, etc. for the next two day to see the
Video stream SAT and SUN only - from ILADS recent conference. Free streaming ONLY this weekend. After that, the DVDs will be available for purchase.
It's a non-stop weekend so be sure to get ready tonight for the marathon. Details here:
posted
La la brain here so is it 9am California time ?? Thanks Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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seekhelp
Frequent Contributor (5K+ posts)
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posted
I read through 7-8 slide presentations from the major speakers. It doesn't look like there's much new stuff here. Same treatment protocols, same theories, same testing ideas. I keep hoping for some real breakthroughs.
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beaches
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posted
Thx Keebler for the info!
But I won't put my life on hold to see/listen to the live stream.
I have plans for tomorrow afternoon, Saturday, to shop a bit (for myself for a change, woo hoo!). I might very well be too tired to do so, but it's a plan, at least!
And I hope to have some other plans in place for Sunday as well--I'm hoping we can watch a good holiday movie or participate in some other fun activity. That too might be elusive, but for now, tonight, it's worth hoping for.
I am sure this video of the live stream will be available at some other point, in due time.
We have tried very hard for years to enjoy this very blessed season, despite the sicknesses and the setbacks endured by my family.
I just can't let this kind of stuff dictate the schedule of my family.
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Keebler
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posted
- The video stream will NOT be available free again. The whole DVD set is a lot of money but some will be available individually.
Actually, I probably won't be able to see it as my computer won't play sound anymore. It's voice is gone.
As lyme has put my life on hold, the only chance I have for any improvement is to learn more. I would put my life on hold to see and hear every minute if I could. This kind of information is very valuable. I'm thankful ILADS offers this chance.
Many of the questions asked right here at LymeNet everyday have been addressed at past conferences and, likely, this weekend's will also be educational.
It would probably save a lot of time and heartache in the long run to be able to see and hear the speakers, straight from the researchers' mouths. I urge anyone who can, to see and hear as much as possible. It is a rare opportunity.
These presentations have taken a great effort by those at the conference and usually, there are many details that can make a huge difference in our lives, even if just in a better understanding.
To get this information from the speakers is worlds more effective than the kinds of Q & A we can do here. So much more detailed, straight from the source.
There is likely to be a lot of repeat but that is still valuable for those new to all this. Even for "old" information, just hearing it explained by various doctors can shed new light.
There are some brand new presentations, too.
It's nice of them to share it with us, for us. I'm sure it comes at price for ILADS and it's free to us this weekend only. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lpkayak
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posted
im est i still cant figure out when it starts or how to start it. im sad im so computer illiterate. i will not be able to afford the 300 for the set
and i saw changes in the previews seek...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Ellen101
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posted
lpkayak there is a schedule if you click on it there will be a list of who is speaking when.
Go to Sammy's link, the blue "schedule", then click North/South America and the schedule will display.
Beaches I feel the same way. I will try to tune in if I am home, but I cannot devote my whole weekend to it either. I have plans with my kids that take precedence.
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lpkayak
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posted
thank you ellen but that is not working for me-im sure its my eyes and brain...i just need to know when they start to talk on the east coast and i will keep it going all day but notheing is happening yet
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
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posted
ok-so it doesnt even start til noon...i will try again then...i hope i can do it.. thank you again
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
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posted
Hoping someone is taking notes. I was just able to listen to a small part of Dr. H I think althought Dr. B first came to mind.
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lpkayak
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posted
KAM...TOO MUCH TO TAKE NOTES. THEY TALK FAST HUH? BUT I AM oops...i am hearing much new stuff i didnt know
i have a new respect for a doc that just spoke
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Catgirl
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posted
Kam, you can buy the specific doc's presentations too. I bought Dr. H's last year $15 (download). Doc H talks really fast, so this is a good one to get.
I wish that Dr. K would do a presentation sometime.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lpkayak
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posted
wow-i guess i am still positive...thankyou N
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I can't get out but, today, my little computer is going away for a trip (hopefully to get fixed so I can hear audio again).
Not sure when I'll have it back. If this thread is still around on Monday and takes up space, moderators can feel free to just delete it.
I hope to find out later from listeners' notes - of key points addressed and which DVDs to try to get. Hope someone will take notes on the ALTERNATIVE sessions, especially, since such detail is key to survival for those with no access to LL doctors.
While nothing can take the place of actually seeing the face and hearing the voice of the presenters,
Scott the Better Health Guy often posts conference notes. So, be sure to check over there now - and later (for when / if he covers this).
posted
Just wanted to chime in and let you know that today and tomorrow are not the only streaming dates for the conference.
It will be streamed again on Dec. 8/9 (for Europe, following a Central European Time schedule) and again on Dec. 15/16 for Australians.
Because of the time differences, these streaming events may not be convenient for many of you; but I just wanted to let you know that there WILL be other opportunities to watch this.
I'm based in Germany, and I am currently watching the live stream for the US audience.
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Nula,
Thanks. Closing down now and sending this off now -- but good to know that there may still be a way to see these later if I get my sound back.
I assume those would be transmitted in English and accessible through any computer with a US web server. Don't know much about computers.
Cheers! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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It will be the same conference - in English. I'm presuming that US residents will be able to access the "European" and "Australian" broadcasts just fine through a US web server.
Since I'm based in Germany and I am able to access the current "US stream", I'm guessing you guys will also be able to access the "European"/"Australian" streams :-)
-------------------- I appreciate all your replies. If it takes me a while to respond, it is either because I'm too sick or because I am unable to log in. From European servers, Lymenet is very frequently inaccessible for days at a time ... Posts: 235 | From Europe | Registered: Jul 2012
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lpkayak
Honored Contributor (10K+ posts)
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posted
wow...ive been on sinc e 1pm.. lots of new stuff. mmuch i can use without doc...but i sure wish i was rich and could travel...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
this was so much better than actually going to a conference...except the little bit of socializing and seeing otheres on here or special docs...but better way to get info and for me a lot of new info
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Watching today confirmed by thoughts that Dr. H is simply brilliant.
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seekhelp
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posted
Did Dr. H come up with some new treatment protocols? I wish I could've viewed his speech. Anything truly groundbreaking said?
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dbpei
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posted
It was difficult for me to sit through the whole thing due to the poor sound quality. Was it just me???
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TerryK
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posted
You can continue watching on DVR according to the website. I was able to restart the player on the link that was sent earlier.
The only new thing I've seen so far is that zithromax is thought to liquify biofilms. 250-500 mg per day 1 to 2 days per week.
Terry
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Carol in PA
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posted
quote:Originally posted by dbpei: It was difficult for me to sit through the whole thing due to the poor sound quality. Was it just me???
I listened for about an hour, before I needed to go back to bed.
I thought the sound was difficult to listen to...as if he put the microphone too close to his mouth.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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seekhelp
Frequent Contributor (5K+ posts)
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posted
It doesn't sound real encouraging. From the slides I read, it seemed like everything Dr H went over was the same as 2011 (or quite close). Considering he is the LLMD leader and basically the guru of all LLMDs, I found it kind of frustrating. I guess we're a long, long way away from breakthroughs.
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beaches
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posted
To put my own two cents in, FWIW, I do not consider Dr. H. in NYS to be any kind of "LLMD leader or 'guru' of all LLMDs" to say the least.
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beaches
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posted
So Ellen,
Were you able to tune in? I don't know whether or not I could have or not. I think I'm just plain burned-out from it all, so I didn't even try.
I am very happy to report that hubby and I shopped for ME for ONCE in over 20 years.
I am thrilled to pieces and very satisfied that for ONCE I put myself FIRST and received a piece of good jewelry that I was very deserving of after devoting more than 20+ years of my life to my family and 6+ years of devoting my life to researching this DD on behalf of my kids.
Sometimes as mothers and wives, we have to stand up and wave a flag and say to our spouses, "hey, remember me??"
I'm the one in the trenches fighting all day, every day. I'm the one going to bat every single day in every single way for our kids.
I'm the one dealing with the docs, good, bad, ugly as they are. I'm the one dealing with the family, friends, neighbors, again, good, bad ugly as they are.
I'm the one dealing with the school system, again, the good, the bad, the ugly.
And guess what? After dealing with all that crap, I SO DESERVE any bling we can afford. I
Posts: 1885 | From here | Registered: Jul 2012
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Tincup
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posted
HA! Beaches said...
"FWIW, I do not consider Dr. H. in NYS to be any kind of "LLMD leader or 'guru' of all LLMDs"...
He is one of many Lyme-treating doctors, but he is certainly not the Yoda of the Lyme World.
Treating Lyme is kinda like baking a cake. It takes more than one ingredient and one person's input to get results you can actually swallow.
And this ILADS cake is quite costly ($300.00), so do watch if you are so inclined and/or are short on funds to donate to a group of doctors.
beaches
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posted
To continue,
I am not at all materialistic. But at this point in my life, I do feel like I deserve a "gold watch" so to speak.
And yes, I do feel a bit entitled to some bling if we can afford it. For so many years I was last on my list in every single way. I am very deserving of any bling I get at this point in my life. And you wouldn't guess it by that statement, but I am a very humble person.
I've just been in a position for so many years where I've given up so much of myself and everything I have and every single bit of who I am.
I just can't do that anymore. This disease itself sucks the life out of you. When you have sick kids, well you can imagine the toll that takes on a parent.
I know I have veered way off topic and sorry for that.
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beaches
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posted
tincup,
Thx for that. Yep, H. is certainly no Yoda in Lymeworld IMO.
I wish I could add something relevant to your "Treating Lyme is kinda like baking a cake." I can't, due to the late hour and being tired and uninspired. But seems to me like you could turn that particular phrase into a really good rhyme!
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beaches
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posted
and in my little one's lingo: you've "terrupted" me on two different threads! lololol
Sometimes we just have to laugh a bit.
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lpkayak
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posted
so this is where the party is...im missing out!
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
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posted
i agree about H. but this time did hear new stuff relevant to me. i wish somehow some llmds who present brilliantly could transfer that to office...i know with all the variables it must be very hard...dr J seems to do it...without any fanfare.
also i found the sound changed and at times was awful. i began shutting down and going on again and each time it was better-at least for awhile
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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surprise
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posted
Hey Beaches- congrats and merry Christmas on the bling :-)
I watched on and off yesterday- it really is a 'Rich man's disease', isn't it?
I was cringing a bit about the mold, give up your house, burn your clothes, live in a tent.
From my own experience, telling this to a new patient costs thousands and can be way too much.
Grateful more Dr.s may be trained to help.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I think all of the speakers had something to contribute. The fella who spoke on behalf of Dr. S. said that low dose Zithro 250 to 500 every 3 days breaks up biofilm. I think that is a pretty good breakthrough.
I also want to say that most people here are very proactive with their treatment, and that is something that money can't buy. I don't think that seeing who is considered the guru is necessary, especially when he is willing to share his knowledge. That guru has also stated in the past that 90% relapse.
He is now saying that he will continue with herbs after abx, which is something that a lot of LLMDs have been successful with, and wasn't "his" way of going about it.
In a nutshell I think there are a lot of great minds that were speaking there, there is something that can be taken from all of the ones that I watched.
Posts: 845 | From Northeast | Registered: May 2011
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TerryK
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posted
Interesting info about disability. Just over the past few years there have been changes in the courts that allow for insurance companies to require objective proof. Didn't use to be that way. There is other very useful info about lyme based disability in the presentation.
The lady lawyer who just spoke gave some really good pointers. You can see it by moving the pointer back - or at least thats how I got to it.
For sure this is a rich man's disease. The the doc visits, treatments, supps, meds alone can do you in. I know about mold (didn't see what any of the docs had to say about it) and I too cringe when I hear you should leave your home and your belongings. Ugh. I think if a new patient heard this, it would be way too overwhelming. Heck, it's overwhelming for anyone! Was Ritchie S. the one who said that?
Lymetoo, we got on the bling thing because of my rant about putting myself first for a change! And I did go a bit overboard if I do say so myself. Sorry for wandering away from the very important topic at hand!
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lightfoot
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posted
This was a fabulous opportunity! I don't know if I could sit through the whole conference in person without getting very wiped out before the end of each day.
Yes, the sound was terrible on Saturday. It was worth hanging in there both days for the gems that may apply.
I was very interested that Dr William Rea and the woman EI (Environmental Illness) doctors were invited for the second year. I was not aware the conference had that kind of input last year. It's been found to be a very important piece.
Lifestyle impacts this disease complex big, big time. I came to the Lyme scene from the EI scene....without it, Miss lightfoot and myself would not have the progress we enjoy.
If you didn't make it....reading through the slides might help you decide what to watch when it is available for the Europeans and Australians or to purchase one of the presenter's talks.
In my experience, one has to hang in there for much you may already know to be all ears when the gems present themselves....it takes patience and the time to sit it out.
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
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Catgirl
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posted
Well said Lightfoot. :)
I thought it was great (learned something new).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Same treatment protocols, same theories, same testing ideas. I keep hoping for some real breakthroughs.
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It was difficult for me to sit through the whole thing due to the poor sound quality. Was it just me???
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