VERY reluctantly, I've agreed to be interviewed. This shows how committed I really am to the cause.

One question will be what I feel it's important to know about LD. I'd like to touch on the misconceptions.

These are the first things that come to mind:
1)stress that studies definitely have shown Lyme IS here.
2) problems with testing (including no test should be used to rule-out Lyme)
3) strain of spirochete in the South causes Lyme-like illness but is not detected by the
ususal tests.
4) importance of co-infections which are seldom considered.

I'll add to the list, but wondered if anyone would like to offer a few suggestions.

Not sure how much time I'll have or how many questions she'll ask, but I certainly want to use my time wisely.

Interview is tomorrow at 2:00.
 

The positive side is that this lady has had Lyme a long time & will try to air as much info as possible.

I'm representing the Lyme Disease Network of South Carolina.

She's also interviewing a dentist who has struggled with a very difficult case of Lyme.

Say a prayer that it goes well....the Lyme situation in South Carolina is desperate for accurate info.
 

I know this may sound totally corny but does anyone know if OPRAH has had this topic? I would certainly be willing to write a letter. She has lots of followers.
 

In the past, members of LymeNet have e-mailed & made every effort to get Ophrah interested in a program on Lyme disease.
Unfortunately, it hasn't happened yet.

I think she would be absolutely amazed at the response she would get if she did an indepth show on Tick-Borne diseases.

[This message has been edited by cbb (edited 18 October 2004).]
 

Think I will also submit to our public radio here KERA. Listen to their science program often.

Also, I did do my contributing not much but as some of the other members said if everyone pitches in $25 just think what we would have. Hoping to also contribute next month as well.
 

What came to mind was how ignorant I was towards lyme although I had heard about it and not only was I ignorant but so were most of the medical personnel that I saw.

Also how the symptoms can come and go over time so it does make it more difficult to dx.

I thought if you had lyme it was like having the flu. You had it for a little bit, rested and then it went away. WRONG!

Perhaps give the lymenet web site and CALDA as resources for further information or the hearing in SAC on FEb. 25th.

I also didn't know nor did most docs that standard tests were invalid and it is a clinic dx by a lyme specialist.

I saw over 35 docs before I met one who considered lyme and knew enough to test with Igenex Lab. I would most likely would still be considering CFS/fibro if I hadn't gone to his office that one time.

Then I had 7 primary docs and an ID docs refuse to treat me because they accepted the false test serology with Unilab. This medical center is where they train the docs for UCSF.

Let us know how it goes.

[This message has been edited by kam (edited 18 October 2004).]
 

Forgot to mention, they had a scheduling conflict, so my interview was moved to Thursday. That suits me better.
Gives me more time to straighten up the house, decide what to wear, & plan what to say.

Team Mom - I sent a lengthy e-mail to Oprah regarding Lyme a couple of months ago and asked for everyone to join me. I think a few others sent her e-mails also. A copy of my letter to her can be found if you search "Oprah a Venue for Lyme Publicity?" I think it was worded something like that. I still think that if enough people contact Oprah or other talk show hosts, we may get somewhere. Please give it a try and good luck!
 

Couldn't find my lime green tee shirt that says "Ticked off...ask me why?", so I just wore a very conservative outfit instead.

The interviewer & 2 camera people were extremely nice - WACH-FOX TV News at 10.
On cable in Columbia, it's channel 6.

I was asked:
What is Lyme disease?
What about testing?
How is it treated?

What is the Lyme Disease Network of SC?
How did you get involved?
Is LD in SC?

What do you feel people need to know about Lyme disease?
Anything else you'd like to add?

Now the big question is how much will be used.
The young lady who interviewed me has had Lyme for a long time, was diagnosed & treated when she lived in NJ, but relapsed after moving here.

She worked with Lyme Education Programs in NJ for a while, so I consider myself extremely fortunate to have met her.
She saw our billboard & called the HotLine.

Next interview is with a young dentist who has had a rough time with LD.

She hopes to make 2 segments for the evening news, but I know they will have to be short.
She said it would air in about 10 days or so.

------------------
oops!
Lymetutu

 

Thanks for being bold and trying to help others.
 

Thanks for being bold and trying to help others.
 

I think this is the type thing we all need to try to do.
If we could just flood the media with info!!!

Are free Public Service Announcements on LD still available for radio & TV?
I know they were about 5 yrs ago, but that was when I got early stage breast cancer.
With surgery & radiation, I never did contact any of the stations.

Need to check into that now.
 

Something that might help for not only those in your neck of the woods but for those all over, is that to say Lyme's is found in areas that are not endemic such as Corpus Christi Texas. So your talking from coast to coast and north to south from Canada-US-Mexico. Maybe Associated Press will see it and that would be great as there would be more people getting the news that it is everywhere.

Good luck with your interview, I know they can be a pain, but you have an advocate in that the interviewer has Lymes also. Feel free to say that when you say something that isnt clear, to ask the interviewer to repeat the question or ask that you can do that over again.

Loretta in Texas
 

I have contacts at 2 more TV stations, but would like to have more Lyme people involved, if possible.

Would love to do a segment giving basic info but focus on pediatric Lyme.
My 12 yr old grandson may be in that one.
My daughter is going to ask him.

We've had several unpleasant incidents with pediatricians here in Columbia.

Thanks again for the suggestions.