We're desperate for guidance here in South Carolina. Some states are working hard to protect their LLMDs. First step is to have LLMDs to protect.
Our state seems to be at "square 1". The governmental agencies & medical community continue to say that we do not have a problem with Lyme in SC.
A few examples: One dr told me "We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime."
Another- My father was misdiagnosed with Alzheimer's. A LLMD in NJ diagnosed late stage Lyme. When I went back & told the local dr my father had NeuroBorreliosis, he asked: "Where did he come in contact with barillium gas? (sp?)
"You don't have Lyme disease, you need a psychiatrist."
A friend told me last week - "Yeah, ticks are terrible in our area. Half the town is sick. We just have to live with it."
Meanwhile, those lucky enough to know about Lyme have had to go out of state for a diagnosis & adequate treatment.
Just can't imagine why.... but our state ranks at the top in heart disease, strokes, diabetes. It seems that numbers are rising for Alzheimer's, MS, ALS, Parkinson's, ADD, chronic fatigue, fibromyalgia, etc, but not for Lyme. Seems like a no-brainer to me!!
We need suggestions on what we can do to wake up the "powers that be". They seem to think that- LD is not a health problem, a test can easily diagnose Lyme, short term of low dose antibiotics is all that's needed.
With the state Health Department & 2 Medical Universities in our state, who's going to listen to a couple people on their soapboxes who say we have a health crisis on our hands?
The Lyme Disease Network of South Carolina is willing but with our small numbers, we need suggestions & help from those with experience in turning things around. We don't need to re-invent the wheel.
We've talked with the State Epidemiologist - Director of Disease Control on two occasions. He finally said "We know Lyme is in the environment, but we don't have proof it's in the people."
After that experience, we've put our efforts into trying to get accurate info to as many people as possible, but WE NEED LLMDs for proper treatment!
It's obvious, my frustration level is sky high & I'm at my wit's end. So, so tired of struggling with the problem, but refuse to give up.
Would appreciate some leads on who could help us move on to the next level - Lyme awareness in the medical community.
Well, I guess the "pity party" is over. I'll have some chocolate & finish getting my stuff together for the Lyme Booth at the Fair Grounds this weekend. www.psclassic.com
The show is Fri thru Sun; a total of 26 hours. We talk with a couple hundred people. Last year, Thomas Parkman & I worked together. We even had 2 people show us their bull's eye rashes. Haven't experienced Lyme Rage, but I think it's coming.
[ 21. March 2006, 10:16 PM: Message edited by: cbb ]
Posts: 4638 | From South Carolina | Registered: Mar 2001
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
It is frustrating, especially because those of us who see the overwhelming need for awareness are sick or helping a family member with lyme!
I seriously applaud you for your concern for others.
This lyme booth sounds like such a fabulous idea. You ARE doing something. Who knows what suffering you helped prevent for those 2 people that showed you thier bullseye!
posted
Cbb, There was a nurse on my town's board of health dept and she mentioned that nurses are required to get continuing ed credits.
She also told me where they go to get them and I don't believe it was a university, I'll have to go back and check my notes. It didn't sound too difficult to get a course set up (haven't tried yet).
She also offered to use her creditials to publish something that I write in one of the medical journals.
Are there any nurses in your LD network who you might be able to work with?
I don't know if you remember what state I'm in, but we have major medical centers and universities, but many of us have to go out of state for care.
These are on my list to do along with many other things, but I'm struggling to keep up with day to day at this point. Both my little ones and I have Lyme.
If I can find one nurse here in this land, maybe you can find someone there to help champion the cause.
Also, my town is having a health fair and I have a booth reserved for LD. I would be interested in hearing what you do at your booth.
Good luck!
Posts: 441 | From USA | Registered: Jul 2004
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posted
Too tired for a long response tonight, but wanted to thank both of you for your comments.
The Sportmen's Show was from 12 noon to 8 pm today. Gave Lyme brochures to about 175 people who were interested. Had conversations with some (maybe 50 or so).
Last year, we gave brochures to about 350-375 people in three days. This year, I'm half way there in one day.
Tomorrow the hours are from 9 am to 7 pm. Sunday from 11 am to 6 pm.
Absolutely delighted about one conversation. The lady is "Bowhunting Editor" of "Bow Hunter Magazine". She wants info to use in writing an article about Lyme disease for the magazine.
The booth next to mine is the Lexington Medical Center with a group of 5 nurses. They're giving free PSA screening tests for the men. They have been extremely interested in Lyme disease!! You can be assured - I've taken advantage of the opportunity to talk about Lyme!!
Wonder what opportunities there'll be tomorrow!!Need to get my things together & then get a good night's sleep.
Char & DJP - Thanks for the suggestions & the moral support!! Will be glad to share info about our booth.
Will check in tomorrow night....if I'm not too exhausted to type.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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bettyg
Unregistered
posted
cbb/Carol,
WOW, the outdoor show with all types of outdoor equipment; wonderful you & Thomas Parkman got a lyme disease booth & next to those 5 nurses!
I love it when a "plan" comes together. They can help get you in the door by telling/writing down the instructions it takes to train the medical community.
You're doing the write thing...exposure of advertising about lyme. Loved also about the bowhunting magazine editor wanted to do an article too.
Last yr. our Lt. Gov. of Iowa was in Ames for a health topic at a local federal facility. I saw it and went. I addressed the subject that I have late-stage, chronic lyme disease.
IOWA does NOT have one full-time lyme literate, chronic lyme MD, and we need 3 FT adult LLMD, and 1 FT KID'S LLMD. I corresponded with her asst. who assigned me to one of the governor's staff, who referred me to Iowa's Dept. of Health Director.
I advised her of ONE lyme conference last year, and NO one would be attending it. "We have to divide our time up with other existing illnesses". Yeh, right; no one acknowledges LYME.
Also, the newspaper articles about personal stories.
Also, have a training session in SCHOOLS. If possible, brochures for each child to take home to their MEDICAL PARENTS! They can't ignore it as well when their child presents it to them.
RADIO interviews as well as tv exposure you can get.
We all want LIVE TV SHOWS, but that's just not happening yet with: Montel, Larry King Live, Oprah, Barbara Walters, etc.
For those of you who have brochures that you can forward to all family/friends ONLINE, please do...THAT'S GETTING OUT THE WORD TOO promptly and affordable!
My hat is off to you for doing EVERYTHING in your power to educate the medical/public community folks.
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posted
BettyG, thanks for the suggestions & encouragement.
Will leave in about an hour for another long "day of opportunity." Just hoping I can muster the energy & stamina to make the most of the weekend.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
The idea of getting the nurses interested is very good.
As it turns out, I will be co-hosting a 4 hour CE course on Lyme Disease for the local hospital nurses this Tuesday.
You can approach the nurses in the booth next to you to see how you can set up a course for nurses in your area.
You can also approach your hospital with the idea of setting up a CME course for the doctors on lyme disease. I was able to get one approved for the doctors too.
Keep up the awesome work. You ARE educating people now!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Thought I was tired last night! ...after 8 hours at the Lyme booth! But today, I was there for 9 hours!
I have given brochures to about 400 people (or families) in 2 days. Will finish up with 7 more hours tomorrow.
One sweet lady came by to thank me for our discussion last year. She said that after years of illness, her friend was able to get a diagnosis of Lyme disease and is improving on treatment.
Makes it all worth while!! Again, thanks for all the comments & encouragement!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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