forgive my typing; pretty sick right now. I have been wanted to ask you all what you think about this for a while.j
There has beennn many posts about Oprah and Dr. Ox. I have sent my story to every sight posted. there was something about her wanting exact numbers. my thought was how????? over half of the cases are not reported and if all of the personal stories that have been sent and the movei hasn't been enough to do a show, what will>>?????
Then the IDSA guidlines---oh my word!!!!!!!!!!
So, I was thinking about putting an ad in our paper, (ti covers many towns) asking people to send an e-mail, or a note toa PO Box, somthing. Send in your story if you have lyme or co. and where you where infected with details.
Also, including symptoms and asking to respond if you have a certain # of these, please respond also.
I need help how to wrod the number of symptoms, or have you been dx with fibrog myalgis, etc... Do i set up a special e-mail, PO box, etc...
Please help me and tell what your thoughts are about this??!!!! I know personally of 2 woman that have been dx with lyme only a few 'dirt roads' away!! A place that we are conitinually told, THERE IS NO LYME HERE!!!!
they were blessed to be seen by the same dr., one of two that acknowledge and try to treat lyme but know little about treatment.
any hlep or opinions, (honest!) wpould be so helpful.
thank you
Posts: 351 | From Georgia | Registered: Feb 2008
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Hi Scared,
I am going to contact our local paper to ask if they will do a story on LD. There are SO many people around here with MS and FM it's crazy! I think that's why there is not much Lyme in OH, b/c everyone is being diagnosed with the 'other' diseases! I saw a dr in 1997 who was treating people for Chronic Fatigue Syndrome (me included).
It's noble of you to try and get the word out. I must say it's funny because I truely believe I got my Lyme in Kiawah, SC just a stone's throw from Georgia (got flu like S/S the day I got back from a 10 day vacation there).
Yeah, we all know there is NO lyme in the southern states, ha!
posted
I think an AD or Story - just to get the word out is a great idea! Rather than directing them to a PO box - why not list helpful websites like ILADS and this one for "seeking doctor"?
Posts: 641 | From So. CA | Registered: May 2008
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I'm sorry that you were infected at all, but I'm not suprised at all where you where!!!
I am going to place an AD and also see if they will do a story on the contorvery. I had to chuckle when I read that you're going to contact you local paper, which I think is great, but I live in Georigia, but was infected in Calif.!!!!!
Peedie, Thank you and thank you for your suggestion! This more the brain fog was so thick there was 0 visibility!!!!!! It has lifted a little for now! LOL
It is a wonderful idea to to add the websites and this one! I would like to somehow gather all of the responces to see just how many there are in the area. The Dr.'s here do not believe in Lyme at all!!
Thanks y'all !!
Any other suggestions or help would be very appreciated!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
What would you do with the responses to your PO box??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96220 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I'm afraid your P.O. Box would split. You could run the risk of loosing your privacy. People would find your phone number, etc.
I'm thinking you might want to visit the local support groups for fibromyalgia and CFS and share your experiences and LINKS. That could do some good. Word can get around that way.
To go beyond that can be very stressful and get in the way of your recovery. Be sure to take care of yourself first, then others will see your progress.
---
You could ask for a feature article but that has some caveats as well. And, if you place an ad, somehow, an article might come from it - without even any of your input. People will wonder what is going on and that often can spin out of control.
Realize that any story a reporter would do, they would contact the local ID doctor for quotes. They usually end with these quotes.
It might be best to go through the LDA who has experience with how to present information.
And, even if an article or feature gets buy without an ID doctor being part of it, they will respond and "correct it'
You can be on it.
Notice how much advertising your area hospitals and clinics do with your local media outlets. Media cannot afford to anger the people who pay their salaries.
And, a good reporter SHOULD get a variety of sources. That is good reporting. However, the reporters do not know enough to make the best choices.
That is where the LDA comes in. They may have media education packets. It can take a while for a reporter to learn all this. They would not be able to write an article for some time.
They often don't have the time - and, again - it's natural for them to go to their "official" doctors - some of whom are even on a retainer for routine consults or appearances on the news.
Much harm can be done with a news article. We have no control in the editing, etc. and I've seen some turn on their head with a snap from a local ID doctor.
I hope you can contact the LDA for their advice on this. That way you don't have to reinvent the wheel.
Keebler---Thank you!!!! These situations never even occured to me! Thank you so muhc.
I am very sick right now, but today is better than yesterday. I think being bde-ridden gives you a lot of time to think----of course there are thpese days that my mind is just blamk too!! Anyway, I just want to do something----I feel like I hvae to do something!
But, going through the herxing, and even whenn noot herxing--it's still hard to put a plan all toogether. Very furserating as I used to be the one to start thmings like thins!!!!
Thanks again!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
Maybe also consider a local support group and if you don't have one - start one? Can mention it in the AD. If you have "X" many people responding for the support group - you have a number representing a "local" amount of people affected by Lyme. Remember to protect the identity of your new acquaintances also. Good Luck and Best Wishes!! -p
Posts: 641 | From So. CA | Registered: May 2008
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posted
just wanted to thank you all for your replies. Also thank you to those who sent me a PM!! I do appreiciatte it so much but I've just been on a down hill sprial.
I so sorry for not replieing buy I will as somn as i can
thanks again
Posts: 351 | From Georgia | Registered: Feb 2008
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bettyg
Unregistered
posted
scared, i agree about a feature story vs. PO BOX letters where you lose your privacy.
if they won't do it, WRITE A LETTER TO EDITOR and have links in it to direct folks here and there since they limit WORDS USED!
also, MAY 09 is LYME AWARENESS MONTH; MAY 13...lyme/cfs/fibro international day!
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