daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
The Greater Hartford Lyme Disease Support and Action Group, along with the town of Farmington, CT ,is sponsoring an all day Lyme Disease conference on May 7, 2005. The main thrust of this conference will be on misdiagnosis and how the lyme and coinfection epidemic is being broken down into many different disease labels which leaves thousands of patients untreated.
The speakers will be Dr. Lesley Ann Fein, Dr. Bernard Raxlen, Dr. Richard Horowitz, Prof. Garth Nicolson, Dr. JoAnne Whitaker and Dr. Lida Mattman. There will also be authors there signing their books. The authors include Sue Vogan..."Lyme Disease With No Compassion Observed, Polly Murray, "The Widening Circle", Karen Forschner, "Everything You Need To Know About Lyme Disease" and Denise Lang, "Coping With Lyme Disease.
If anyone would like me to e-mail them a flyer just let me know. Please pass on this information to any doctors, nurses, chiropractors, etc, who may be interested and also to those with chronic illness who are searching for answers. The cost is 25 dollars which includes doughnuts, coffee and lunch.
For more information you may also contact Randy Sykes at 860-658-9938 or Chris M. at 860-673-8759
posted
up
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
No...we haven't mentioned really anything concerning AIDS so it must be the other conference. Anyone know of any multiple sclerosis or ALS , etc message boards or sites that would let me post the conference info? Some of these message boards which are run my the M.S. society for example , really police their message boards for things such as this. They don't seem to like anyone to know that M.S could be borreliosis. They just might lose their source of income
Posts: 1176 | Registered: Oct 2002
| IP: Logged |
posted
Did you post it on the yahoo lyme forum? Also, maybe Cheryl's Lyme info website-- has an events section: http://www.lymeinfo.net
Wish I could attend -- too far away.
[This message has been edited by lou (edited 31 March 2005).]
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
thanks Lou....how do I find the yahoo lyme forum...probably just go to yahoogroups.com? Also we do want lyme patients to attend, of course but even more important is reaching those with FM, CFS, ALS, Alzheimer's, M.S etc. It is my feeling that if we can get volumes of people realizing that much of this is borreliosis then we will have more clout...and also people will get treatment. So...if anyone has any good ideas on how to reach these different groups...let me know. Thanks! :=)
Posts: 1176 | Registered: Oct 2002
| IP: Logged |
Please let me know if you get the answer to that question - how to educate/inform those who are probably misdiagnosed...I think that is another essential key with regards to advocacy.
I think it also will help with the supply/demand problems we have...the more patients DEMANDING LLMD - I think the more we'll eventually get some.
Thanks,
------------------ DR. Wiseass - not a real doc - just a real wise ass. www.twistoflyme.blogspot.com
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
I agree with you wholeheartedly Dr. Wiseass. I think besides trying to get all the different chronic illness people to this conference and all other lyme conferences that we need to think of novel ways to educate. I didn't get around to it yet but last year there were M.S walkathons which would begin and end at a certain point...and I wanted to go there and hand out lyme/MS info. I think that this is where some of us need to focus. If there are FM, CFS, ALS...etc support groups in our areas...we need to go to them and gently share our thoughts and printed information
Posts: 1176 | Registered: Oct 2002
| IP: Logged |
posted
Assuming you are using local media outlets to reach the people most likely to attend. In your messages, maybe you could mention that lyme is frequently misdiagnosed as......etc.
Not suggesting that everyone with these other diseases actually has Lyme. Don't think this is true.
Some people have found that these other disease groups are not open to alternate diagnoses, so you might want to soft-pedal this part. I understand that you are frustrated about people who aren't getting the care they deserve.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
Lou....You are right....many do like to cling to their diagnosis, even if it may be wrong and means no cure. And yes it is frustrating to know that many have...not just lyme...but other borrelia, mycoplasma, etc, and are not being treated. Sometimes I do feel silly running around telling people this but maybe sooner or later if we keep plugging it will all sink in? Too many people are getting sick.
Raskilnokov.....glad you found your answer...That may be a good angle to use when introducing the subject of lyme to others.
posted
up
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
| IP: Logged |
posted
will this be made availibe on the net? i probably cant make this meeting, too sick. it would be really good to have it online for those who can not make it because they are sick, or because of distance.
"many do like to cling to their diagnosis, even if it may be wrong and means no cure. And yes it is frustrating to know that many have...not just lyme...but other borrelia, mycoplasma, etc, and are not being treated. Sometimes I do feel silly running around telling people this but maybe sooner or later if we keep plugging it will all sink in? Too many people are getting sick."
keep telling people! everyone needs to know and understand what is happening to us here. otherwise we are blind to the truth of what is going on.
"not just lyme...but other borrelia, mycoplasma, etc"
mycoplasma is a big one. its very good to see garth nickelson speaking on lyme. everything that he has done that i know of is mostly on mycoplasma and gulf war syndrome, as well as some of the other chronic diseases, but not lyme.
what other borrelias are there? i know there are many strains of the spirokeet which have different effects on people, and that these strains sometimes are found grouped together in an area. like people from ridgefield ct have certain similar symptoms. is this what you mean?
thanks brett
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
| IP: Logged |
posted
just keeping this at the top to see if anyone else is going to go.
i have never attended a conference.
i would love to hear from people who have and what it is like.
amyb
------------------ Good friends are like stars... You don't always see them, but you know they are always there!!!
Posts: 362 | From west chester, pa | Registered: Apr 2004
| IP: Logged |
daystar1952
Frequent Contributor (1K+ posts)
Member # 3255
posted
We are having the conference professionally taped so we may be selling tapes to whoever would want them.
I have been to several conferences and find it to be a wonderful experience. You learn alot but you also get to meet people you may have talked with or written to for years.
For some reason I am most excited about this particular conference. Speakers are coming together who never have met before..but should. Everyone is trying to help. Personally I will be meeting some good friends for the first time.
I just have an uplifting good feeling about it. More and more people are beginning to come together for the purpose of Good...despite all the fear mongering and scary stuff going on out there...people are miraculously finding each other and working together with no thought for personal gain..but only to help our ailing world.
posted
Daystar, thanks for letting us all know about this. How I wish I could attend! Silly old geography, always in my way. I would like to purchase a tape, so please let us know if they become available.
I really like the spirit at work in this thread and in many I've seen lately on Lymenet. As a young gay man in the 80s, I was profoundly affected by the response to the AIDS epidemic.
Lymies may never 'ACT UP' in the same way, but we surely need to become more creative and proactive in making the weight of this horrible epidemic real to those who have not personally experienced it.
Posts: 199 | From Santa Cruz, CA | Registered: Oct 2004
| IP: Logged |
MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257
posted
I would love to attend this and hope we can. Dr. Trevot Marshall is also going to be there. I want to meet Dr. Whittacker of Bowen Labs. That would be such a treat.
Posts: 2173 | From Maryland | Registered: Jun 2001
| IP: Logged |
MammaLyme
Frequent Contributor (1K+ posts)
Member # 1257
posted
This past summer at a craft fair, a young woman was collecting for MS. I asked her if she had ever had a lyme test and she said yes but it was negative. What does this tell you. It was lyme. I told her it is lyme. I had the same diagnosis.
Posts: 2173 | From Maryland | Registered: Jun 2001
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic