LymeNet Flash: Good News - Board of Health Meeting

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Posted by DJP (Member # 5893) on :

As many of you know my daughter got Lyme over the summer and is still being treated. I'll be getting my blood drawn next week to send to Igenex.

This whole situation has been a scary, complicated and frustrating process and I had been looking for ways to share what I've learned when I got a call from the Board of Health in our town.

My daughter's positive Lyme test was reported and the woman was extremely nice and I shared our experience with her and told her I wanted to do something to share what I've learned with others.

I was invited to the next Board of Health meeting which was this month and I again shared my story and got an incredible response for support in getting some of the information out to others in the town.

The board came up with other suggestions and support for helping to get the word out there. So, I'm planning on a multi-medium approach to help spread the word in our town.

I'm going to put a letter together for parents that will be sent out through the school, put bullets on the local cable stations, participate in the school and town healthfair...

Thanks again to all of you for sharing your stories and information because I can now provide the board with the information I've learned.

Now I just need to get the "right" information for the right media pulled together to make the greatest impact. One step forward...

Posted by zipzip (Member # 6226) on :

great job! way to be a productive community member, very outstanding.

you can contact LDF or LDA about leaflet info.

hope your girl makes a clean recovery soon.

Posted by tabbytamer (Member # 3159) on :

Have you seen the brochure titled something like "The ABCs of Lyme Disease"?

I think either CALDA or the LDA puts it out. It targets what to look for regarding Lyme in children.

Editing now to say that yes, that pamphelt is put out by Lyme Disisase Association,, 1-888-366-6611, www.lymediseaseassociation.org.

Is that the type of stuff you're looking for? Maybe you already have that. It is a very nice brochure. Also very professional looking.

[This message has been edited by tabbytamer (edited 30 December 2004).]

Posted by heartsickmommy (Member # 6417) on :

YEAH for you, D!!!!

You've got a lot of guts to get out there and spread the word. Good for you!

I'm still undercover, as you already know. But even so, I've met quite a few people recently that have become aware of what's going on here at home who've asked a million questions of me re: Lyme. Incredulous, isn't it?

HAPPY NEW YEAR, D....!!!! Hope things are well with you and yours.

Posted by Rita on :

I hope you get the word out that, except for a few individual labs, the Lyme Disease tests are worthless.

Posted by DJP (Member # 5893) on :

Thanks for the recommendations, I will check them out.

Rita,
Yes I intend to include information about the specific labs to use as I know the lab at the hospital here isn't one of them!

I also need to get the word out about using a LLMD not your "regular" doctor. I'll have think about how to communicate some of this "touchy" information. I'm thinking maybe giving the 800 number that is on this site as well as the URL to this site.

My whole goal is to not just get the information out there, but to help others avoid being un-diagnosed, mis-diagnosed, under-treated.... because of all of the complex issues surrounding Lyme (testing, doctors, treatment....).

Any and all suggestions appreciated.

Posted by Carol in PA (Member # 5338) on :

DJP,
I think Tincup wrote an article with 50 questions and answers about Lyme Disease....good for educating the public.

Maybe someone can remember where to find it....

Carol

Posted by tabbytamer (Member # 3159) on :

DJP,

Here is another site (maybe you've already seen it) where you can get educational materials including posters:
http://www.lyme.org/education/edu_mat.html

They also used to have a pamphlet titled "Guide to Lyme Disease". Hopefully they still have it. It has photos of ticks, various lyme disease rashes, photo of a child with Lyme eye and facial paralysis, explanation on the problem with trying to diagnose with lab tests, etc.

Another pamphlet they print is "Tick Spread Diseases, Which is a Lyme Disease Rash." Excellent photos of various rashes, four different types of ticks, facial paralysis, eyes, Rocky Mtn Spotted Fever rash . . . detailed info on Western Blot tests, other TBD, etc.

Lots more educational info at their web site!

[This message has been edited by tabbytamer (edited 02 January 2005).]

Posted by bg (Member # 46416) on :

DP,
Did I read correctly? your daughter's lyme dx was given to your STATE'S HEALTH DEPT. and will now be shown as added to their lyme statistics?

I called my dr. on this; he assumed the blood lab or my LLMD would report it. Told him NO, it was his responsiblity to do this.

Way to go on everything else you have accomplished in your above note! We're so proud of you.

Also the new book published 8-04, LYME UPDATE: Science, Politics, and Law is wonderfully written in layman's terms for #12 including postage from LDA...

Have you had a local newspaper feature article written? If not, please give the most important web sites of info too.

When giving the blood lab info, may I suggest you show that IGENEX does NOT accept insurance payments but that MDL & BOWEN do accept most insurances!
Best wishes on this successful campaign of yours. Betty G., Iowa

Posted by DJP (Member # 5893) on :

Betty,
Yes, I believe Igenex reported the positive result to the State Board of Health and they called my town Board of Health.
I think the woman from my local Board of Health said that the labs are required to report a positive. So, I'm glad it got recorded!
I haven't written an article for the local paper, but it was one of the ideas. I'll have to see if anyone here has one that I may be able to re-use.
Thanks for the input!