This is topic June 2nd NJ Congressman Chris Smith,Burrascano,Dr. Harris & LDA in forum General Support at LymeNet Flash.


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Posted by mtree (Member # 14305) on :
 
Lyme & Tick-Borne Diseases Forum

Wednesday, June 2, 2010, 7-10PM

Over the last decade, New Jersey has ranked 3rd in the U.S. in the number of reported Lyme disease cases and has shown an increase in other tick-borne pathogens.

To help the public, officials, physicians and constituents learn more about tick-borne diseases, Congressman Christopher H. Smith is hosting this Lyme and Tick-Borne Diseases Forum.

http://chrissmith.house.gov/

Featured speakers will include national experts on treatments and testing for Lyme and other tick-borne diseases, on ticks and pathogens, and on the impact on patients.

Forum Location: In the Wall Township NJ Municipal Building (Monmouth County)

2700 Allaire Rd Wall, NJ 07719 (behind the Wall police station and Wall library)

Easily accessible from: Garden State Parkway, New Jersey Turnpike, Pennsylvania Turnpike, I-195

Click for directions www.wallnj.com/docs/directions.htm

An audience Question & Answer session will follow presentations from the following speakers:

Dr. Joseph Burrascano, MD, an Internist, is recognized internationally as a skilled Lyme disease clinician and founding member of the International Lyme and Associated Diseases Society.

He has authored a number of papers and three textbook chapters on Lyme disease and has provided expert testimony before state legislatures and before Congress. He will focus on the clinical diagnosis and treatment of tick-borne diseases.

Nick Harris, PhD, is the founder and CEO of IGeneX, Inc., a specialty laboratory devoted exclusively to patient testing and research related to Lyme disease and its associated co-infections.

He has spent over 25 years researching and developing tests in this underserved area. He will focus on the role of the laboratory in the diagnosis of Lyme and its co-infections.

Ellen Stromdahl, PhD, (invited) is an Entomologist with the Tick-Borne Disease Laboratory for Entomological Sciences with the US Army Public Health Command.

She will focus on tick species found in the US and the pathogens they carry, focusing on New Jersey and the Northeast.

Pat Smith, President, national Lyme Disease Association (LDA), is a Member of the Columbia University Lyme and Tick-Borne Diseases Research Center Advisory Committee and former chair of the Governor's Lyme Disease Advisory Council (NJ).

She will focus on the spread of Lyme disease, its impact on patients, and what is being done.

For information on Lyme disease

www.LymeDiseaseAssociation.org

[ 06-01-2010, 06:33 PM: Message edited by: mtree ]
 
Posted by lpkayak (Member # 5230) on :
 
wow!!! i can go. i will be living in the next town. (i don't know if that is good or bad)
 
Posted by lymephobic (Member # 17556) on :
 
Thanks for this mtree! Hoping to get there and to bring friends!
 
Posted by lpkayak (Member # 5230) on :
 
anyone else going? i want to meet you and find a support group
 
Posted by jennyflyer (Member # 12792) on :
 
I will definitely be going, it's only @ 30-45 minutes away from me.
 
Posted by lpkayak (Member # 5230) on :
 
jenifer---are there supportgroups in ocean or monmouth cty? i'm looking in tuckerton too for houses
 
Posted by lpkayak (Member # 5230) on :
 
anyone want to get together for supper before this?
 
Posted by grandmother (Member # 19908) on :
 
If you go, please tell us about it.
Thank you.
 
Posted by rks (Member # 24316) on :
 
Think I might send a thank you to this congressman for having this and inviting certain doctor's to the event.
 
Posted by mtree (Member # 14305) on :
 
just a bump for Cockapoo [Big Grin]
 
Posted by mtree (Member # 14305) on :
 
[spinning smile]
 
Posted by Cockapoo1996 (Member # 14238) on :
 
Thank You! [Big Grin]
 
Posted by lpkayak (Member # 5230) on :
 
well-i'll be there. maybe i should put a sign on me. i would really like to meet some of you. i'm feeling a little lost here and wondering if i made a mistake by moving.

even tho my dog and i have tick stuff on we have picked up 4 ticks in less than a month. ours were not engorged but another dog in the house had a very engorged tick. the ppl here seem to think deer ticks are only nymphs---poppy seed size. i told ppl i knew a lot and would answer their questions...but they just seem to think they know everything.

thats ok---i have my hands full taking care of me and the dog. but i would like to meet some lyme literate ppl esp if they are near spring lake.

i'd like to know how you deal with the ticks here---there seem to be so many. and they don't seem to be bothered by permethrin which is very scarey.

so:

jenny
lymephobic
mtree
rks
and cockapoo PLEASE SAY HI!

i'm fat and 60 and i'll wear a yellow top.

i'm really looking forward to this.
 
Posted by lymephobic (Member # 17556) on :
 
I am soooo hoping to get there tonight! If my husband doesnt make it home in time I can't come.

I have printed out this info and gave it to some people at work and some others who I know have lyme. Seems like everyone in Monmouth and Ocean counties these days.

If I make it lpkayak...I will definately seek you out!
 
Posted by lpkayak (Member # 5230) on :
 
thanks. i can't believe i live 10 min from there. i should put my yellow kayak on the car and you would all find me!

i'm gonna go a little early so if you can pleae come and help me figure out how to survive here with so many ticks.
 
Posted by lymephobic (Member # 17556) on :
 
lpkayak...I did make it, however I arrived kind of late, and left when the questions began. Sorry I missed you [Frown]
 
Posted by mtree (Member # 14305) on :
 
looooooooong night.... [dizzy]

but well worth it.... [Big Grin]

I huge shout out thank you to congressman Chris Smith for having the forum
Dr. B, Ellen Stromdahl and Dr. Harris for coming..

and thank you Pat Smith for all you do to help our Lyme Community....we are lucky to have you!

[Smile] mtree
 
Posted by lymeinhell (Member # 4622) on :
 
Sorry I missed it. Got stuck at the office late yesterday. It was great that it got coverage in the Asbury Park Press on Weds, but unfortunately nothing in today's paper.
 
Posted by lpkayak (Member # 5230) on :
 
well-i'm starting to recover from last night. its a little hard for me to come up with something positive right now cuz all i can think of is WHY THE HECK DID I COME HERE?????

when i moved last week i had no idea i was coming into one of the worst places a person could go if they wanted to stay away from lyme.


i was able to talk to dr b-who i hadn't seen in a few years - but i did become a little confused at the end during his talk. it sounded like he is seeing patients again. is he?


i tried to find out about support groups in the area-but no one knew anything until the very end i spoke with the family of the little boy who read his essay in the beginning about his struggle with lyme(great kid-great family-but another very sad story) his mom told me there were groups but the only way to find them was on the lda site so again...i will try to use the new one and hope i have better luck.

if any of you local ppl on here know about support groups maybe you could pm me. thanks.

this is what i remembr from the meeting:

1. one of the worst places a person could go if they want to stay away from ticks is south/central nj
2. ilads and lda best resources-lda has new site coming out soon.
3. in dr b's talk it sounded like he is seeing patients again...anyone know if he is?
4. best way to stay away from ticks is in hot, dry environment
5. don't count on ticks being killed by cold-they are in sweden-as far north as arctic circle
6. permetrhin still best tick repellent
7. here(south central nj) the lone star tick is more of a problem than the deer tick.
8. the deer tick hangs out on tall grass and grabs on to ppl and animals that walk close. the lone star tick actually goes out looking for something to bite-she called it stalking.
9. groups of nymphs attach to animals and ppl and are called clusters
10. ivig is a treatment that reduces inflammation without the bad side affects of steroids.

ok-please remember i'm a lymie. if this is so badly written etc---please don't attack me-just let me know and i'll delete it

[ 06-04-2010, 04:35 PM: Message edited by: lpkayak ]
 
Posted by tickitout (Member # 6982) on :
 
lpkayak
I appreciate the time you took to post the info about the meeting last night and think you did a very good job.

I could imagine it was much to comprehend and then put it together mentally as well as you did.

I am so disappointed I couldn't make it. I didn't know about it until someone taped the article to my door. I would have loved to have been there.

does anyone know if it was taped and will be offered to the public? Please if you know can you please post it or pm me?

Thank you once again lpkayak for posting..oh, Just wanted to add about those clusters of nymphs, my daughter lives near a wooded area in south Jersey and her dog has discovered them quite a few times coming in loaded with ticks. Needless to say she totally freaked out.

With that being said, not to change the subject but does anyone know of a really effective treatment to rid the area by her home of the "clusters"?

Good work lpkayak.. [Smile]
 
Posted by lpkayak (Member # 5230) on :
 
tickitout,

thanks. i doubt it was taped. they had major problems with the sound system. but maybe someone did it that i didn't notice

the tick specialist did say permethrin based products are the best tick repellents. i think that includes clusters.

(i suggest you carefully read instructions cuz i think it can be dangerous if not used correctly)

also i know from nh there are companies that spray your yard...that might help if she keeps the dog in her own yard.

i still would really like someone to pm me a way to find the support group ppl here. a neighbor just pulled off a tick and her doc tested her and said it was neg and she didn't need tx even tho she has a bullseye. i'm new...i don't know the best advice to give someone here. she needs to talk to a local lyme literate person.

thanks.
 
Posted by just don (Member # 1129) on :
 
lpkayak,

did I spell that right?

your neighbor HAS lyme. Positive test not required when you sport the bullseye.

Help her find best LLMD she can afford and get to.

Heaven knows what else she got at same time.

Dont let time slip away before she gets 4-5-- mg of doxy a day if she has to cheat to get it. early only lasts a short time

thanks for the GOOD feedback on meeting,,,my commute times would have been brutal.(from half way across the country)
 
Posted by lymeinhell (Member # 4622) on :
 
I'd be happy to speak with your neighbor. Heck, I might even know them. PM me if you're serious about helping your neighbor.
 
Posted by lymephobic (Member # 17556) on :
 
lpkayak,

I retained most of the same info you did. I do believ that it was taped, but it may have been for someone's personal use. I saw a video camera...

I was a bit disappointed that Ellen Stromdahl did not mention anything about the ticks in NJ testing positive for bartonella more often than lyme. I do think Dr B. mentioned it when he spoke.

I don't think Dr. B said he was seeing patients again.

Miles (the boy who told his story) had me in tears. So sad that this happens to soooo many people. My friend was just bit by a tick and I told her to go to the doc and tell him that she felt like she had the flu, has a headache and neck pain. The doc told her...well I don't want to give you the abx without the bulls-eye.

She then asked "but isn't it true that most people don't even get a bulls-eye?" Doc said about 20% don't get it. My friend kept pushing for the abx (I taught her well!) but to no avail.

She did have a western blot done, but its way too early. She was also one of the lyme vaccine recipients. I am kind of interested to see how the test results turn out.

I told her to go to a walk-in clinic and go thru the symptoms again and hopefully give her the abx.

lpkayak, if you need some llmds near-by for your neighbor PM me.
 
Posted by Robin123 (Member # 9197) on :
 
Thx for the reportback -

Yes, folks, help this newest bull's eye rash person!

Re tick protection, I talked with the TKO Orange folks recently and they said it could be sprayed in the yard to keep animals out of the yard, it can kill ticks in the yard, it can keep ticks away from pets if applied to their fur, and of course, it is my chosen tick repellent for clothing.

It's sold as Orange Guard in stores and TKO Orange in concentrate form. I get the concentrate from www.organicorangetkocal.com but I imagine there are several businesses selling it. (I have no financial cxn with that site).

It's from oranges and is how oranges keep bugs away. It can kill and repel bugs. It's biodegradable and needs to be reapplied every 24 hours. Ok to use as long as not allergic to oranges.

Put a little in a spray bottle, fill with water, spray on clothing, immediate ground area, lightly rub/mist on dog and cat fur.
 


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