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» LymeNet Flash » Questions and Discussion » General Support » Lyme Rally

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Author Topic: Lyme Rally
DJP
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Just got back from the rally. I thought it went well... My estimate was around 70 for attendance.

I hoped there was going to be a bigger turnout.

Anyhow, I only have a few notes that I'm sure others can add to as I got distracted with my children.

These are from my notes and I hope I don't incorrectly communicate what was said there---

Dr. B talked about the ELIZA and how it isn't sensitive and yet is being used to rule out Lyme.
The sicker you are the less likely you are to be positive.
CDC guidelines omit bands 31 and 34 which are the most common bands for Lyme.
For test kits to be licensed they have to follow the CDC guidelines.
Guidelines need to be changed.
Clinical tests are not accurate enough to prove or disprove Lyme.
CDC guidelines were developed for surveillance not for diagnosing Lyme.
Yet, universities, gov agencies and doctors look to the CDC for guidance.
IDSA stands behind the guidelines.
PCR - DNA test. I believe he said it only can detect a past infection not an active??
CDC does not recognize it for Lyme Disease.
CDC is worried about over-diagnosing instead of under-diagnosing which causes so may problems.
We should look at the lessons learned from the AID epidemic.
We need huge public outcries
We need to contact public officals and offer constructive guidance, educate them and stick around until it gets enforced.
Support ILADS.
Support Lyme Doctors.

Dr. Jones did mentioned his next hearing and encouraged us to attend in his support.

There was much more than this and I hope someone else will add to it.

We got there just in time for the speakers, but apparently there were news crews interviewing people on the way into the rally.

Thanks to those who organized this and hope to see more of them.

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lpkayak
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thank you -thought of you all day---notheing on news except something on aids...

--------------------
Lyme? Its complicated. Educate yourself.

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valymemom
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So great that you posted to give us some news. Thanks.
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valymemom
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I remember when I attended the 2005 Hope to Heal conference. All of the doctors commented that the 350 + crowd was the largest that had ever gathered. I know the numbers can grow and will grow.
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Andie333
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Unfortunately, I wasn't able to get to the rally so really appreciate the report, DJ.

I agree with Valymom and hope this rally is the first of many.

Kudos to all who are there!

Andie

[ 02. June 2006, 10:29 PM: Message edited by: Andie333 ]

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AZURE WISH
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thank you for the report [Smile]

Did you take notes or is your memory that good?

Great reporting! [Smile]

--------------------
multiple chemical sensitvity group:
http://www.lymefriends.com/group/multiplechemicalsensitivities

Group for artists. All media welcome:
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http://groups.yahoo.com/group/Lyme_Artist

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break the chains
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quote:
Originally posted by DJP:

Clinical tests are not accurate enough to prove or disprove Lyme.
CDC guidelines were developed for surveillance not for diagnosing Lyme.
Yet, universities, gov agencies and doctors look to the CDC for guidance.
IDSA stands behind the guidelines.
PCR - DNA test. I believe he said it only can detect a past infection not an active??
CDC does not recognize it for Lyme Disease.

I was there and i think maybe you got pcr and antibody tests mixed up? i think its the antibodies that show if you have been infected. and the pcr which actually looks for the dna and an active infection.

[ 02. June 2006, 10:37 PM: Message edited by: break the chains ]

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MagicAcorn
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DJP - There were way more than 70! [Frown]

My guesstimate is 200. Here is a link to my take of the rally on another thread.

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=015201

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DJP
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I was able to take notes at the beginning, but then got distract with my children.

There was so much more that I wasn't able to write down and my memory is horrible.

Break the Chains - You are right, I mixed them up. PCR does detect DNA which would indicate an active infection.

Magic - I truly hope there were 200 and thanks for your review.

I also forgot to mention that the rally ended with children of Dr. J sharing their stories and thanking him.

Overall, I was inspired to do more. I'm going to contact the organizer to talk to her about organizing a rally in Boston.

Anyone else interested in organizing one here?

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WildCondor
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I would say from trying to count people from up on the steps I'd guess 150-200 in attendance. A Lymie thats bad at math is telling you this keep in mind! Its a guess only! he hee [Smile]

[ 03. June 2006, 01:02 AM: Message edited by: WildCondor ]

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DJP
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Well so much for my estimation abilities! I'll leave that for someone else next time. I'm glad to hear there were that many!
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MagicAcorn
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DJP - You were there to show support not make estimates at attendance. I'm just happy you were there. Were you the one in the green?

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bettyg
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Northstar,

It's 130 am Sat., still NOTHING IN LATEST NEWS about the lyme rally fyi....

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break the chains
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Heres what I want to know, and would be very greatful if someone could fill me in. I think Dr. B was talking about his wife and a new illness she picked up from a lone star tick this year? He said its rare, hard to find, and fatal? Did he say it was some form of babesia? Im really sketchy on the details, and if there was one thing I wish I had written down, this is it. We are being over run here all of a sudden with these lonestar super ticks from texas and the south. Its all a bit strange if you ask me. It was in the news last year that they were breeding and working with ticks at yale.
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lou
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One thing you can be sure of in lyme events is that the estimates of attendance will vary wildly. Guess lymies are math challenged.

No one seems to be saying much about the impact on the legislature and media. Hope there was some.

Thanks to all who made the effort to attend. And thanks for the reports.

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OptiMisTick
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I neglected to mention the states. To the best of my memory there were representatives from:

New York, New Jersey, Pennsylvania, Maryland, Virginia, District of Columbia, Connecticut, Massachusentts, Maine, ??New Hampshire (I thought), Rhode Island, Florida, California, Oregon, and one or more central USA states which I can not remember. Ohio might have been one of them.

There were also doctors there in support.

People came by trains, planes, automobiles and busses. The busses seemed to be a good way and were on time.

One of the attendees said their train had been delayed by branches on the track the previous evening, and there were several Lyme people on it who were real troupers given the amount of time they were on board.

Others on different trains said theirs were on time and were prompt.

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hatsnscarfs
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DJP,
Count me in for helping to organize a rally in Boston.
hatsnscarfs

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lymemomtooo
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It was a great event and very timely...I send the organizers and speakers a big hug for all that they accomplished.. They even helped us with the big sign and my costume adjustments. They were great.

I would also agree that 200-250 was a pretty accurate count. I ended up going around a few times but did not count..

I was too busy being the weirdo in the tick suit..

I just pray someone listens to our plea.

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OptiMisTick
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I loved your tick suit!!

My kids loved it too.

It was very imaginative!

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WildCondor
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Here are some of my rally notes. Here is the part about the babesia and co-infections.

The babesia strain found in the lone star tick is called Theileria Cervi. It is a form of babesia found in cattle in Texas, Oklahoma, and sometimes parts of the Carolinas. No testing for humans is available. No commercially available testing available. How is it we can do a test on a convicted criminal, but not on a Lyme patient?

Testing is extremely poor, especially for co-infections. We know that there are atleast 9 Ehrlichia-like organisms that live in ticks, and we can only test for 2 of them. Even the testing for the 2 of them is not that great. The NIH has found 13 distinct viruses that live in ticks, not any single one of them is being researched. Tuluremia (rabbit fever)is tick-borne, now weaponized because it is such a terribly horrible infection. No testing for this except for old fashioned serology. Bio-level 3 because it is so toxic. This is in the ticks, is it being researched? No! Mycoplasma etc. and so on are all tick-borne. Nematodes in ticks...

Some links

http://www.jwildlifedis.org/cgi/content/abstract/28/3/457

http://www.vet.uga.edu/ivcvm/1999/Quick/Quick.htm

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=3193564&dopt=Abstract

http://www.cvm.okstate.edu/instruction/kocan/ticks/tickok.htm

http://apt.allenpress.com/aptonline/?request=get-keyword-index&issn=0090-3558&volume=041&issue=04

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hatsnscarfs
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I just started a Topic in General "Lyme Rally Media Wake up Call & Email, to consolidate info about media coverage or lack thereof. Please add tyo it and send emails to the media demanding more coverage of the Rally & Lyme disease.
hats

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kelmo
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I can't find it now, but someone posted the FOX link of the lyme rally...How many people did I see that I would recognize? Who is Zoe's mother on the board?

I saw the lady in the Tick suit...that was great.
Good job everyone. I think Zoe's story was a great one to show.

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lymemomtooo
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K-glad you liked the suit..It has some fine tuning to go yet..

I am just glad I could go to the rally and be a fool to try to help the cause..

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Mo
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LMomToo --

Tiy were vcaught on camera doing a walk by in that famous suit in the background of the Fox news clip [spinning smile]

Mo

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