Topic: Reports from LDA and ILADS Conferences 2009
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I was there, too, but I haven't had time to review any of my conference notes because I'm home for only two days -- just enough time to do laundry and repack -- before attending the AAEM (environmental allergy) conference this coming weekend in Phoenix. So, stay tuned, because I'll add my "stuff" to this topic next week when I get back home again.
There were six different "Break Out" groups to choose from, and all six groups had different speakers and new topics during each hour -- for a grand total of 36 "elective topics." Can you imagine that? No wonder it's taking those of us who attended so long to wade through all of our conference notes.
The conference CD is only $20, and it is a bargain. I cannot imagine how thick and heavy the conference syllabus would have been if they had printed it instead of putting it all on CD. The speakers whom I heard all had fantastic slides, so you might want to consider ordering the CD of this conference from ILADS. (There might be an extra charge for S&H. I haven't taken time to check the ILADS website yet to see about how to order it.)
Also, the CALDA newsletter covers the IDSA hearings and is fantastic, with behind-the-scenes insights. It's well worth the price ($10) to obtain this issue from the CALDA website. It is beyond informative. It is downright inspirational. Thanks Lorraine and Phyllis and ALL CALDA volunteers for your hard work.
Posts: 4563 | From TX | Registered: Sep 2002
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
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TX Lyme Mom,
Thanks for the info.
By the CALDA newsletter, do you mean Lyme Times? So it would be one of the special editions of Lyme Times? I will continue to check CALDA's site for that.
I didn't see anything on ILADS' site either yet.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hoosie said.. "No word on what Eva Sappi was saying about the Tindamax?"
One of the scientists in her group told me the doses they used in the studies were the same "typical" doses prescribed to patients.
Pine said.. "Do you think it may help prevent biofilms formed from calcium, if it keeps stones from forming. Anything said about it there?"
Somethings I know a little about...
But...
I wouldn't know a kidney stone if it bit me on the nose. Sorry!
May I suggest?
Start another post and ask others this interesting question.
My bet is some one who HAS had a kidney stone bite them on the nose will respond.
Pine said about the ducks presenting at the conference.. "Do you think they may have had any effect to a new doc who just came to learn all about borrelia?"
Actually, no.
The docs who are there.. the new ones... are already saying to themselves...
"Something about this Lyme ain't right! My patients aren't getting better listening to the IDSA poo-poo!"
In NY City years ago, we protested outside the International Lyme Conference when they (Wormser, et al) refused to allow OUR info in there."
It was a BEAUTIFUL site to see so many Lyme patients... all dressed in lime green... walking back and forth in front of the building. Anyhow...
Some docs we didn't know left the conference and came to join us on the picket line.
Now picture this... a Japanese doctor marching along with us saying in his cute foreign language accent....
"Etts hawg wass- all hawg wass."
That was such a cool moment at the protest... I'll never forget it.
Many "regular" doctors KNOW the IDSA is all hog wash... and they come to learn the truth.
In fact, some of them walked out during the duck presentations at THIS conference complaining that the info they were presenting was "nuts" and other choice words... and how it made them so "mad."
It's funny what you overhear when standing around in a crowd of doctors.
quote: They found tini and doxy was the best combo for knocking down the keets in all forms.
They had a graph showing the results.. and if I can find it online later.. will share a link.
Tinidazole? Is it better than flagyl anti BB wise? I had impression its just easier to tolerate version of flagyl, could be wrong though.
Posts: 856 | From MA | Registered: Jul 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Anyone have any info on Morgellons or research done by Luc Montagnier yet?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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I just wanted to offer a caution about the doxy and tini combo (I poseted this in the other thread as well).
Not to be a spoiler here but ...
I took tini and doxy for about two years straight, cycling in other meds as LLMD suggested.
It did NOT get me well.
I cannot say it did me much good at all.
In fact, it was while on this combo that my GI problems, which had reared earlier during a run of zith and flagyl, became disabling. I can't describe how bad it was. The GI tract stopped working. Gradually, I became sensitive to most all foods, and after a while could not tolerate any probiotics, supps, meds, or much of anything. I had to stop the meds immediately, and was unable to take any abx for many years.
What caused this?? Who knows. I have theories, as do all the different LLMDs, GI and Alt-docs I've seen, but none were able to fix things. And most of them made things get much worse.
This was seven or eight years ago. I am beginning to pull out of it now.
I offer this as a cautionary tale, as I'm sure many people will rush to the doxy and tini thinking that it is THE answer.
It may be for some, but it wasn't for me.
Be careful.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
I am thinking that combo was being tried in vitro on biofilms. Yes? No? In vitro results do not always match in vivo. And what works in acute may not work in chronic disease.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Oh my gosh!!! That was this weekend??? I missed it! I live about 40 minutes from the Gaylord Hotel AND on top of that I was there on Sunday!!! We dropped my cousin off there on Sunday. She was in town for an accountants conference that was being held at the Gaylord. We toured around it and had dinner there and everything. I had NO idea that the Lyme conference was there :-(
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
The Dr. H I was referring to was the NY dr.
The biofilms were photos - I imagine they are microscopic and I don't think you'd be able to feel them.
Mega thanks to all of the comments about the conference - I am still brain dead - keep looking at the CD - I need a few more days.
You all did a super job and I was able to pick up on some things that I missed.
I only made it to three breakouts because we couldn't stay for Sunday and we did #1 twice - once with Dr. B and once with Dr H. There presentations complimented each other very well.
I will try to post the examples of the ABX rotations - NY folks speak very fast and I don't want to rely on my notes - I will find it on the CD to make sure it is correct!
Posts: 1761 | From USA | Registered: May 2006
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Hi all,
Thank you so much for your summaries...I hope to purchase the DVD but didn't see it on the ILADS website.
Just wondering if any of you learned anything new about babesia treatment? Anything on cryptolepsis or cryptoPlus? Any other herbs mentioned to compliment the abx therapies?
Also - mojo - I will be very interested to hear what meds Dr. H felt it was important to rotate to treat bart.
Best,
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yup, I would be interested in hearing those things too. I might buy the DVD or CD, depending on the price, but I haven't found it anywhere yet.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thank you, Tincup and others, who have spent alot of time attending and relating important info from the conferences.
I really appreciate your time, dedication and hard work.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
lou said.. "Is Ms Namrata of the filaria study associated with a university?"
Colt said.. "Tinidazole? Is it better than flagyl anti BB wise? I had impression its just easier to tolerate version of flagyl, could be wrong though."
In the study they found it to be more effective than Flagyl... I do believe. I am 99% sure on that... but when I reread everything.. if it ain't so..... will let you know.
What I DO remember for sure is the combo doxy and tini was the most effective.
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Nomo... You said... "In fact, it was while on this combo that my GI problems, which had reared earlier during a run of zith and flagyl, became disabling."
Could it be that any combo (like the tini/doxy combo) or single antibiotic by that point could have done the same?
posted
LOL Tincup! I know...I can't believe I was there and didn't even know about it
I am glad that you and some others were able to attend though!
It is a really nice place...pretty impressive.
Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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bettyg
Unregistered
posted
up to read during daylight hours since i've been off board 2 days...
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posted
just to say thanks to Tincup and Lymemom for posting all this amazing info.
Especially the descriptions of how it was organised and the atmosphere etc, help us to feel part of the big picture though thousands of miles away
BTW, tinidazole had some good effects on me whenever I gave it a try, seemed to get rid of tendonitis which was so bad I couldn't lift my arm properly for nearly a year before.
Please don't forget to tell us about the DVDs when they are ready.
best wishes, Andromeda
Posts: 180 | From UK | Registered: Nov 2005
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posted
I am wondering if Lumbrokinase was mentioned at the conference at all. Today my LLMD told me she wants me to take it and she told me about a guy's testimony.
I tried to wiggle out of it, because of the expense, but she insisted. She is thoroughly convinced it will make me better by making the treatment more effective.
I take a lot of sups (prescribed by LLMD) and believe me the costs add up! Plus, talk about pill fatigue! I have to take multiples of most of them and I am also, on several prescriptions.
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