Tracy9
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Member # 7521
posted
The conference yesterday was incredible.
Dr. Horowitz, Dr. Burrascano, Dr. Phillips, Leo Shea, Dr. Cowden, and Pat Smith were all excellent presenters.
Attorney General Richard Blumenthal walked in and got a standing ovation, gave an excellent talk, and then received another standing ovation.
Dr. Jones was eloquent, funny, looked great and was in excellent spirits! He said the new panel he is before with the newer allegations see him "not as Satan, but as a Maverick." He looks much more hopeful and far less defeated. He got standing ovations and lots of hoots and hollers as well!
When I spoke with him one on one he said the ongoing charges and appeal case is expected to take up to five years to resolve. He seemed much more hopeful overall then when I saw him at the December 18 hearing, and in really great spirits.
I spent a lot of time talking with Pamela Weintraub, who is very nice and extremely modest. There will be a book signing in the Boston area on June 7th for her new book, Cure Unknown. Her son, who has been very sick with Lyme, is graduating from Brown University, a monumental accomplishment.
Dr. Phillips just totally rocked. He presented his slides, which are posted on ILADs. It was phenomenal. Once you have watched his presentation, it just boggles the mind even more how IDSA can possibly be getting away with all their propaganda.
I had lots of fun meeting Vermont Lymie, Got Lyme? , hanging out with LuvDogs and Allie, Roadrunner, and Peninah from Lyme Chat.
I also finally got to meet and spend lots of time with Kim Pappa from the Eastern CT Chapter of LDA, and met the great people from the Ridgefield Task Force, Time For Lyme, and the Newtown Task Force.
I spent a lot of time with Jacqueline Spar from the Turn the Corner Foundation, who was featured on the Discovery Channel's Mystery Diagnosis show on Lyme Disease, and in "Under Our Skin."
Jacqueline is one of the most vibrant, beautiful, eloqently spoken and modest young women I have ever met. At 22, she has struggled with Lyme for many years. I hung out with her in the Quiet Room for quite some time while we were both resting, and had lunch together with her mother.
This young woman has so much to offer, especially in outreach, education and support to teens.
My husband Blake spent time one on one talking with Atty General Blumenthal, CT State Represetative Jason Bartlett, Leo Shea, neuropsychologist, and Sheila Statlender, PhD.
We also signed up at one table to have someone come on to our 26 wooded acres in September and hunt our deer with bow and arrow, then donate the meat to a food bank. There is an organization that does just that!
There was an immense amount of wonderful printed information, the speakers were amazing, and the networking surpassed anything I could have imagined.
What a wonderful day! I will post more details and some of the information presented when I fish my notes out of the car.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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tailz
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posted
I wish I could have been there. I would have dropped to my knees in appreciation.
I wonder how long it will take for this 'review' of Lyme guidelines to take place?
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posted
OHHH GOSH I really wanted to go AARRGGHHHH !!!!
Posts: 983 | From The sky | Registered: Feb 2005
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tdtid
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posted
Tracy,
Thank you so much for the review of how the event went. I wanted to go so badly, but was in L.A. for the week. Went straight from "Under our Skin" to California for the week and just got home today.
This sounds like it was a huge success and that you got a lot of one on one interaction, which is always a good thing. Thanks for sharing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Vermont_Lymie
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posted
Hi Tracey,
It was wonderful meeting you yesterday!!
Thanks so much for writing up such a great summary of yesterday's conference. It was amazing, all the speakers were fantastic, and great to meet so many of them and other attendees. A very inspiring group, hopeful and dedicated.
I had a long drive home, and was pretty wiped out today; took a full dose of biaxin (1000mg) last night, and am feeling it today. But some quick points to share:
* Dr. Eva Sapi and her amazing students are doing ground-breaking research; investigating what diseases ticks are carrying, biofilms, etc.
They are so impressive, and will eventually be recognized for their pioneering work, if they are not already. Thank you Dr. Sapi and your amazing students for putting together a great conference!
* They are finding mycoplasma in the ticks, sometimes multiple strains of it. And the clinicians are finding it in patients with tx-resistant disease. It seems to be more of a player in TBD's than I realized.
* The speakers were fantastically informative and accessible. Their presentations can be purchased on a CD for $10, and for folks who could not make it, I highly recommend it! It is worth it just for Dr. Phillips presentation, and they were ALL great!
* Like Tracey said, Pamela's book sounds like it is something everyone is going to want to read.
* Everyone should ask their doctors to participate in Dr. Burrescano's new database project.
My best wishes for you and your husband and entire family Tracey!! I just want to add, to follow-up on our discussion, I hope that you can stick with the bicillin for a while. It has worked better and better for me, but that has taken over 6 months of 2 injections/week.
I seem to have herxed for the first 6-7 months on bicillin, and then found some symptoms (like muscle pain) that I have had for years seemingly disappear. It takes a while.
All of this treatment takes longer than we would wish. I was really glad yesterday to meet folks (lyme veterans) who went through treatment, recovered from extreme illness, and were off antibiotics for years.
It took 3-4 years of antibiotics and treatment for them to get better, but they made it and are living full lives.
There is a light at the end of this tunnel (and it's not an oncoming train!)
[ 18. May 2008, 09:45 PM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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posted
It was so great and I am glad that I went. The day was an emotional roller-coaster though! But in a good way.
It was great laying on the stairs towards the end next to Tracy, when sitting was no longer an option for the aching bones!
And meeting Peninah and being with Allie and my sis, and meeting Pat Smith.
Allie is the best for making me go
It was one of the best Lyme events I have ever been to.
Posts: 588 | From Rhode Island | Registered: Jun 2006
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shazdancer
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posted
Thanks, Tracy, I was there also, but after zooming around the prior weekend, having things to accomplish while there, and having to get right home afterward, I didn't socialize much.
From my notes:
1.) From Dr. H, "The reason antibiotics don't work [in some] is that all the differentials have not been addressed" -- 15 differentials that included co-infections, immune disfunction, inflammation, toxicities, psychological stress, sleep problems, and physical deconditioning. Many side effects due to tick-borne disease produce symptoms that look like tick-borne disease
2.) From Dr. P, "Just because people have non-specific symptoms doesn't mean they aren't seriously ill."
He would show how the IDSA docs contradicted their guidelines in their own research, in effect how they lied, then would deadpan, "People are funny."
He mentioned that in all 3 of the NIH-funded long-term treatment studies, the patients recruited for the study had already failed the treatment used in the study, probably not a good group to try to re-treat.
3.) From Pat S.: The CDC will NOT be reporting to the public suspected or probable cases of Lyme under the new surveillance case definitions. Expect the numbers to go way down.
4.) CT Attorney General RB explained that his investigation was about violations of anti-trust laws, whether there was a "restraint of competition" on the part of the IDSA docs, monopolizing the Lyme treatment industry.
He hopes his actions will wake up the healthcare industry across the board to monitor for ethics violations.
5.) Drs. L and S: neuro-psych evaluation should take place early in the diagnosis of children with Lyme, so they can understand that they are not "stupid," but sick.
Severe fatigue in children results in missed social interaction and achieving developmental milestones; in adults, it results in missing lifetime events.
6.) Dr. ES: a high percentage of Bell's palsy patients tested positive for mycoplasma.
7.) Representative JB: challenged us to enlist the help of all those have been misdiagnosed over the years, as there are many out there and they would be a powerful voice.
8.) Dr. W: wondered if Lyme might just be the gateway disease, and that co-infections might play the larger role in chronic Lyme
He called Lyme, "AIDS lite."
9.) Dr. L: presented a case study of a young teenaged patient who went through intensely rigorous physical therapy (I would say bordering on abusive) for a diagnosis of reflex sympathetic dystrophy prior to getting a Lyme diagnosis.
There was a short time to pose questions to Dr. L, his patient, and the patient's mother. Several mentioned that the symptoms sounded like Bartonella. Another woman and her daughter came forward to say they had been through a similar harsh experience with that RSD doctor before getting a Lyme diagnosis. I hope they compared notes later.
10.) Dr. B talked about his new patient database management system. They are getting ready to input the data from the first batch of patient forms.
By combining Lyme patients from different doctors, and standardizing their reports, we should be able to obtain strong statistical data about symptom clusters and treatment efficacy. We become one big research study. Yay, Dr. B!
Reporting in, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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Tracy9
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posted
Wow, you guys are all so awesome!
Great reports, Vermont Lymie and Shazdancer. None of the great stuff you wrote is what's in my notes!!
I will say, this was indeed one of the best events I have ever attended,and that there was SO much information presented, having all of us report what we got out of it is great, because we probably all picked up on different things!
As I regain some energy I will post from my notes. The conference book is a thing to behold, jam packed with information....
And Lymeblue, I got you one!!! Blake and I were both there, so I am going to mail you his!!! Only because I love you so much!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Wow, I wish I could have gone. Sounds like some very interesting and important information....keep it coming!!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Tracy9
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posted
It is kind of sad to think about how we all have to recover from yesterday, and how much it took out of us just to be able to be there.
It was worth it, but I just wish it didn't have to be that way for so many of us.
Vermont, thanks for your kind words, I so enjoyed talking with you....I hope we can keep in touch and meet again! I agree with you, it is a long road, and I am very much looking forward to the light at the end of the tunnel NOT being that damned Lyme train!!!
Luvdogs, those stairs were damned comfy. That was a great idea you had. So much better than the seats!!! (They were carpeted aisle stairs.) Hope you are bouncing back.
Shaz, how I wish we'd met, maybe another time!
Glad we all made it home okay. What an awesome experience!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
Unregistered
posted
quote:Originally posted by Tracy9:
Dr. Jones was eloquent, funny, looked great and was in excellent spirits!
He said the new panel he is before with the newer allegations see him "not as Satan, but as a Maverick." He looks much more hopeful and far less defeated. He got standing ovations and lots of hoots and hollers as well!
When I spoke with him one on one he said the ongoing charges and appeal case is expected to take up to five years to resolve. ********************************
He seemed much more hopeful overall then when I saw him at the December 18 hearing, and in really great spirits.
thank you all for your excellent notes you brought here!!!
dr. j...5 more years of this crap of his health dept. hearings! oh no!!! I feel so bad for him/all lyme kids.
quoting shaz
3.) From Pat S.:
The CDC will NOT be reporting to the public suspected or probable cases of Lyme under the new surveillance case definitions. Expect the numbers to go way down. BOO !! hog wash.
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posted
I was also at the conference on Saturday and met many great people! The speakers were all excellent! Tracy, is was great to meet you in person! I have to agree, most of us had to recover on Sunday. I felt very unsteady in the theater. I have joined Kim Pappa who has started a Lyme Disease Association Chapter for Eastern CT and we are planning a lyme seminar for June 17th! We could use more help even if you can only do phone calls or emails. We need to get the word out very quickly. Please contact me if you can lend a hand. This is a first for the eastern side of Ct and we are expecting a huge crowd. There will be two events that day: One at Eastern in Willimantic in the am and the second one at Conn College in New London in the evening. We are also seeking vendors for both events.
-------------------- Margaret Posts: 103 | From CT | Registered: Feb 2007
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posted
Thanks for providing the info on it. I really wanted to go but I am not feeling well enough to travel.
I am anxiously awaiting a call from one of our local doctors. I provided him the info on it and he attended.
He was hoping to speak one on one with an LLMD and get info on treatment. This is wonderful news for my community since there is no one around who will treat Lyme.
posted
Thank you to those who went and are sharing with the rest of us. I too wanted to go but having just gone to the UNDER OUR SKIN launch....
What was the attendance like? How many people? Mostly Lyme sufferers or were there a lot of MDs as well?
Thanks again! Kristin
Posts: 561 | From mass | Registered: Jul 2007
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Vermont_Lymie
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posted
There was SO much information.
They had pre-registered a little over 200 people, and then over 50 people registered on-site; there was a total of about 300 people there!!!
Clearly, lots of lyme patients. Best yet -- at least one doctor that introduced himself as a NEW llmd (currently a doctor, in training to become lyme literate!).
I am pretty sure that he was not the only new doctor there, but he was the only one that I heard introduce himself to the entire audience as an llmd-in-training!
Tracey, thanks so much for your kind words! It was fantastic to meet you, and really great to have the opportunity to speak with you and Pamela at the reception. I will look forward to the next opportunity!
They clearly intend to organize this conference every year, and they said that this years attendance was about twice of last years! The word is getting out.
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Tracy9
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posted
I was just going to say what Vermont Lymie said!
The doctor who asked a question and introduced himself as "hoping to become an LLMD" or something like that received a huge round of applause, it was fantastic.
Atty General Blumenthal commented on how there were at least three times as many people at the conference as there were last year, and how fantastic that was.
This is the third year they have held this conference; it is definitely an annual event.
I still have so many tidbits to share; but haven't been out of bed since I got home Saturday night. Hopefully soon!
I think the information presented was amazing, but I can't say enough about the people. As Kim Pappa quotes, "The best thing about Lyme Disease is the people."
That is so true, and straight from the heart. I felt like the day was about a week long. It is hard to believe I was lucky enough to speak with SO many awesome people....all I can say is,
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
"Dr. Phillips just totally rocked. He presented his slides, which are posted on ILADs."
Maybe I'm just out of it today (what else is new), but I don't see a link to Dr. Phillips slides on the ILADS web site. Are they posted yet? The most recent presentation posted is from Sept. 07.
thanks
asus
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Tracy9
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posted
They are on the right hand side, under "What's New."
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Shazdancer- what an incredible summary! I need to copy this so I can remember! You really captured the essence of everything.
The problem is that I get so tired that it all becomes a blur, and when I try to explain what I learned to people, only tiny fractions of tidbits of info come out.
There is that short-term vs long term thing!
Thank you so much for the synopsis... and for helping me to remember.
I am still exhausted but will make it through this week. It was well worth it though!
Posts: 588 | From Rhode Island | Registered: Jun 2006
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For anyone else who is looking...
Posts: 116 | From Ann Arbor, MI | Registered: Nov 2007
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shazdancer
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posted
Thanks, luvdogs. Chalk it up to taking written notes, because I know that my home state will want to know what was said.
Asus, you got it. I have to say, though, that all that text on his Powerpoint is hard to weed through. It was helpful having him go through it live, to make better sense as I mine it for references later.
-- Shaz
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Tracy9
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posted
My husband has been threatening to clean up that Powerpoint for Dr Phillips for months; maybe he will actually do it.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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* The speakers were fantastically informative and accessible. Their presentations can be purchased on a CD for $10, and for folks who could not make it, I highly recommend it! It is worth it just for Dr. Phillips presentation, and they were ALL great! -------------------------------------------------
Vermont_Lymie - where can we get this CD?
Posts: 261 | From Herx-ville!! | Registered: Aug 2006
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Vermont_Lymie
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posted
Here is Dr. Sapi's webpage and contact information at:
Her students told me at the conference that the CD of May 17th's presentations cost $10, but I see on their website that they sold last year's CD for $12. Either way, it is well worth it!
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Bugg
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posted
Any other "treatment tidbits" which you guys could post here that you may have learned from the conference??? Something else chronic lyme patients should be examining and/or taking???
Thanks!
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Tracy9
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posted
Yes, I have lots more....I'm still not out of bed!!! But I will try to post some later today.
Dr. Horowitz had so much information, really it would be so worth it to purchase the CD to see all his slides.
The CD does not have the actual presenters talking, but it has all their slides/powerpoint presentations.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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How do I order a copy of the Confrence? I was invited by my LLMD but way too ill to go....I wish I could have been there.
Be well...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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tickled1
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How do I go about getting that CD?
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
I emailed Eva Sapi yesterday about this and she said:
"We just checked the videos, they look fine,, the next step is to edit and after that we decide what to do, webcast or DVD, but will let people know when ready".
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Vermont_Lymie
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One thing the field researchers emphasized --
When it comes to preventing tick bites it is all about spraying pyrethrins on clothing.
From the people out there in CT collecting scores of ticks for testing, their tests and observations led them to say pyrethrins are significantly more effective than deet, and ticks die upon contact with treated clothing.
Sounds like the best thing about spraying pyrethrins on your clothing is that it is not a daily thing, it lasts.
Spray the pyrethrins on your clothing, socks, and shoes -- and let them dry. This can remain effective through many wearings and washings even. Do not spray the pyrethrins on your skin.
Most folks may already know this, but it was news to me. I had been using deet for years if necessary, but the description of ticks crawling all over wet deet-soaks clothing vs. dying on contact with dry pyrethrin treated clothing convinced me to switch!
I have no brand recommendations, just found one called Sawyers Permethrin Clothing Spray at amazon.
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posted
Just wanted to say that the conference was very well done. The only real negative was that Dr M. couldn't make it to present (I think he was ill). He had given a very good presentation last year.
Thanks to all of you that posted your notes!
I ate lunch with a doctor from CT who is becoming more knowledgable about the disease. It is so great to see that there are doctors out there who understand that chronic lyme is a major issue.
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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Tracy9
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posted
Elaine, It sounds like the answer you got was about the DVD of the conference, not the CD.
They were selling a CD there for ten bucks, it was done ahead of time. It did not have the speakers presenting, but was a compilation of all their powerpoints.
I think it would very valuable to have, and they should have that readily available.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
thank you SO MUCH for sharing with us!! I loved to hear about. Sounds like the whole thing felt very momentous and joyful!!
The term hero never meant much to me before I got Lyme. I did feel however, that climbing Mt. Everest is NOT courageous or heroic!
It feels great at this point in my life to gather strength and inspiration from the many heroes I have witnessed in the Lyme community. There are soooo many!! The courage of all of our doctors who dare to treat us, the courage it took for the Atty. Gen. to launch his investigation, the courage all of us as patients and family of patients display on a daily basis.
Then there are the others I have seen - Marisa, Phyllis, Lorraine, Pat Smith and a gazilion others who dedicate much of their time and energy to the community. We are all so lucky!!
At a local level, those of us in the Bay area Peninsula are blessed to have Karen, who has run the Mt. View Lyme support group for many years. Faithful, coming month after month, even thru her own treatment and fatigue. Thanks Karen!
Lots of love and gratitude to our leaders!
Theresa
Posts: 364 | From California | Registered: Sep 2005
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posted
Very informative thread--thanks for everyone's reports. What were your impressions of Dr. Cowden and what did he present?
Nancy
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valymemom
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posted
I attended the conference last year with two friends. I commend Dr. Sapi for all of her work. It was an excellent conference.
I would be interested, like Blackmon, in hearing about Dr. Cowden's presentation. He was not there last year.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Tracy9
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I actually missed Dr.Cowden's presentation, was resting in the quiet room at that time.
His entire presentation is however on the CD you can purchase for ten dollars, it contains the slides of all the presenters.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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for testing, their tests and observations led them to say pyrethrins are significantly more effective than deet, and ticks die upon contact with treated clothing.
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