Didn't know they were going to do the show this morning on Lyme disease.
I called in and was the first caller on the show.
I briefly got to speak about Lyme and about not seeing the tick that got me.
Spoke briefly about rash vs. no rash.....and that me, my husband, children and neighbors
Never had a bulls-eye rash.
Then the lady from the State Department of Health and Hospitals took the stage.
CDC crap!!!Yada, yada, yada.
I did get to add in that Lyme was a clinical diagnosis, before my time ran out.
Then my neighbor, who is currently on his way with his infected wife,
Son and mother-n-law to see our LLMD,
Called in to speak about the flaws in testing and CDC guidelines for reporting.
He mentioned the inaccuracy of the Elisa.
That was his five minutes.
Then another person called in who had a friend who was bit in the area I live
Back in 1988. Developed a bulls-eye rash. This lady had a PhD. in Biology.
She spoke of years her friend going to Infectious Disease ducks, Specialists, Calling Local Hospitals.
This lady's friend was finally dx. when a doctor from Connecticut
Was in our area and readily recognized her symptoms.
She was hospitalized, had a positive Lyme test, but never, ever was reported.
She added some info about babs and how her friend is on disability for life,
Because this disease wasn't caught/recognized and treated when her friend developed a bulls-eye rash.
She said her friend can hardly walk, can't breathe well, and lives in constant pain.
One other caller on the subject was a very elderly lady who also lives in our area.
She said her son was so ill with Lyme disease...
Then he started taking garlic and is cured!!!
Great. Why didn't I think of that????
I bet hundreds of people are running out to the store to buy garlic capsules now.
I feel a great sense of accomplishment.
I managed to get the ball rolling and at least get the word out there.
I could do two hours of radio show (not just five minutes) to share everything I know (so far)
About Lyme disease, Miss-diagnosis, and co-infections.
Thank you all for helping me to educate myself and for the encouragement to go and do.
Now.......off to find another project to educate the public about Lyme disease.
Yeah!!!Score one for us!
My mom called and said the lady from the state dept. of health sounded like an idiot.
Hugs,
Geneal
Posted by Ann-OH (Member # 2020) on :
Yippee and good for you! Thanks for all of us who need a good spokesperson.
You didn't say what station or network did the show on Lyme. Was that local or national??
Ann - OH
Posted by Geneal (Member # 10375) on :
I'm sorry. It is a local show, but it reaches parts of the Louisiana, Mississippi, and Alabama Gulf Coasts.
It reportedly has @500,000 plus listeners.
They said their phones were lit up with people wanting to know what area I lived in.
They just told them the Parish (which is same as county).
Hugs,
Geneal
Posted by bejoy (Member # 11129) on :
You go girl!!!
Posted by bettyg (Member # 6147) on :
geneal, CONGRATS on a job well done today! talk about a surprise, and glad your neighbor got in too plus many others .... good for you.
ask to do this again and expand more on what you couldn't cover today. YOU ROCK GENEAL. Posted by Vermont_Lymie (Member # 9780) on :
Great work!
Posted by kam (Member # 3410) on :
Good work!
Posted by Cobweb (Member # 10053) on :
I tripple that ! Posted by NP40 (Member # 6711) on :
My mom called and said the lady from the state dept. of health sounded like an idiot.
Hugs,
Geneal
Correction, she is an idiot. Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: My mom called and said the lady from the state dept. of health sounded like an idiot.
I bet she did!!!!
GREAT JOB!!!!
Posted by iceskater (Member # 8655) on :
good job in getting the word out on the radio there, geneal!
Posted by just don (Member # 1129) on :
My bet is since you are NOW a 'famous radio personality',,, you cant talk to --just don-- any more!!!
Posted by jasonsmith (Member # 10914) on :
Why was that lady's friend on disability for life because of Babesia? Is she not able to get rid of it? Or has it caused irreversable damage?
Posted by Robin123 (Member # 9197) on :
Yes! Keep it up! And go check and see if you can get on your local TV stations!
Posted by Geneal (Member # 10375) on :
They didn't exactly mention why she was on disability, but I believe
She has permanant neuro damage and ongoing issues with babs.
That co-infection was definitely mentioned.
My LLMD sees this lady too, I later found out from my neighbors.
This opportunity to at least get the word out was great.
I told my husband that my neighbor and I were on the "Spud" show.
I told him I was "Jill" to prevent anyone from recognizing our family.
Geneal is kind of a name that people would remember.
My husband actually was excited about it.
Go figure.
He used to do a radio show on Saturdays on same station.
He personally knows the producer of the show.
He said he was going to e-mail the producer and try to get another show going at a later date.
Maybe we can get a full hour.
Here's the kicker. The talk show host, "Spud" says his daughter plays in the woods
All the time and has been having flu-like symptoms and such.
I guess this is what promped this swift and immediate concern re: Lyme disease.
I did e-mail him back after the show and provided some pretty firm statistics about the Elisa vs. Western Blot.
I told him that I had my children tested via Igenex (one of the few labs in the country
That specialize in Tick Borne Diseases) and if he was needing any additional information
That I would gladly try to provide it or send him to another source who could.
Obviously I thanked him so much for broaching the topic and his interest In Lyme disease,
And giving me the opportunity to give people the "heads up" that Lyme IS here in Louisiana.
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: He said he was going to e-mail the producer and try to get another show going at a later date.
Maybe we can get a full hour.
You and hubby are so awesome!!! Posted by bettyg (Member # 6147) on :
YES, YES, 1 full hour of geneal; you rock geneal! Posted by Rhonda (Member # 11593) on :
Hey guys. Got my five minutes to. I called all the radio Stations, TV Stations and newspapers in my area first of May to tell them about Lyme Awareness Month. Most blew me off but I got a surprise one evening. Radio FM 101.9 called and wanted to do a phone interview. They gave me about 5 or 6 minutes with Bea Thompson (Charlotte NC). It was at 5:25 am so I had to push to get myself ready but i got through it. She asked a few questions and I tried my best to tell about the diease, symptoms, lack of support, docttors ect. Don't know how many heard the broadcast but at least I got the chance. I also created a DVD and info packet that I sent out to 30 churches to play in May. Don't know how many played the DVD but at least they had the chance to inform theiir people.
Posted by Geneal (Member # 10375) on :
Thanks ya'll!!
I am very passionate about educating people about this disease and that it is Here.
"Soon to be coming to an area close to you".
Dear Rhonda,
I hope you weren't as excited as I was. Talk about an adrenaline rush.
How cool to have them actually call you.....
You go girl!!!
Hugs,
Geneal
Posted by bettyg (Member # 6147) on :
i gave out 2 blue igenex western blot igm/igg brochures/price list today.
at nursing home and another woman followed me outside, and i mentioned my lyme. she showed me the remainder mark from her TICK BITE, so i gave her info galore and brochure.
later had pizza, and picked it up. 3 guys/i were talking about my hip surgery and my lyme came up. i mentioned some things of symptoms and mgr. said he should have the blood test done, so i went to my car and got the brochure. not bad 100%, 2 out of 2 !! Posted by Geneal (Member # 10375) on :
Dear Bettyg,
Not bad at all!!! It is strange that the more I talk openly about this disease and it's symptoms,
The more people get that "Oh my God" look in their eyes.....
I believe So many people are not diagnosed or being Miss-diagnosed.
I am grateful that I have this opportunity.
I would have loved if someone around me had given me this advice when I was desperately
Searching for answers to what was wrong with me.
If I can save just one person from going through what I went through....
Hugs,
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: If I can save just one person from going through what I went through....
You got it!!
Congrats to Rhonda and Betty too!!!
Posted by LisaS (Member # 10581) on :
You didn't know the show was going to be about Lyme? You just called in and luck of the draw it was about Lyme?
God is in our corner on this one I believe. That was great karma! Job well done Geneal!
Posted by leah (Member # 11977) on :
Where do you find the brochure you carry around? Is it information on Lyme and testing, etc? I would like to keep some of those on hand as people seem overwhelmed when you start "spouting off" information at them. If they had something to read later when they had a moment to absorb things better that would be nice. Thanks BLESSINGS TO ALL
Posted by Lymetoo (Member # 743) on :
Leah, you can get some from the Lyme Disease Association. I also have some from Pfizer...but I'm not sure they're still making them.
Posted by Rhonda (Member # 11593) on :
Thanks you guys. It was a rush, I was shocked. I hated the 5:25 am but if one person got the message I wouldn't have minded 3:00 am.
I made my own info one pager that I sent out with my video. I put together info I got off various web sites. I also found a poster on the web that listed prevention methods. It was one of those that gave permission to copy. It was pretty cute and printed in Lyme Green.
Has anyone ever tried to get a petition started in NC to allow Dr. J to treat? I've thought about starting one but not sre how to start.
Posted by Rhonda (Member # 11593) on :
By the way, I think Beth Jordan of the NCLDF has had some fliers printed up. I had asked her for some but at that time she was out. She emailed later and said she was having some printed.
Posted by bettyg (Member # 6147) on :
Originally posted by leah:
Where do you find the brochure you carry around? Is it information on Lyme and testing, etc? I would like to keep some of those on hand as people seem overwhelmed when you start "spouting off" information at them. If they had something to read later when they had a moment to absorb things better that would be nice. Thanks BLESSINGS TO ALL
leah, i called IGENEX' 1-800-832.3200 no. and ordered 200 for my entire JUNE lyme window display plus having there for ONE per family to pick up, and also for my JULY 4th education table as i did last year.
as tutu said, go to LDA website, you can find that on left hand side, lower corner, go in there and bring up brochures and they show you what they have.
i ordered 1 box, 500, for my june handouts mentioned above of:
ABCs of lyme,
tick cards
DON'T ORDER co-infections brochure....it's ILLEGIBLE in times new roman and extremely small print that folks can't read.
you should have received my 56 pages of newbie's advise/links.
look for my post on LDA/BETTY'S LYME BROCHURE... print that off as i retyped the ILLEGIBLE LDA co-infection brochure, and that is in there in full plus many other things.
look for yourself; it's quite complete including lyme books, etc.
i carry these in my car trunk and can give out as needed on the spot!
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