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 Post subject: How To Reach Others
PostPosted: Mon Mar 02, 2009 9:04 am 
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Joined: Sat Dec 20, 2008 1:38 pm
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Hey Guy's, Just wondering some of your experiences with trying to reach others with health problems. I put a blog on a Narcolepsy site and was met with a lot of resistance that i would even mention that they could have Lyme.

I realize that when you tell somebody that's wrongly diagnosed, it's very difficult to try and take away there security blanket. Much like us they have been through the ringer so when they finally get a diagnosis they don't want to give up there position. (Not open minded) even it's the wrong position.

Any tips that you might have i am grateful i feel bad for these Patients when they say they have tingling in there lips and twitching and numbness, all bells go off in Head and I can't believe they have not been tested for Lyme.

Thanks Johnny


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 Post subject: Re: How To Reach Others
PostPosted: Mon Mar 02, 2009 9:41 am 
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Joined: Tue Feb 19, 2008 3:18 am
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I don't go all "you have LD" on them. I take my time to get to know the person. Then as we get to know each other I gently suggest about LD. When I get the "Oh I've been tested for that," I gently guide them to websites that talk about how the tests can be inaccurate. If they've not run away at this point, I point out some of my symptoms that I've had that are similiar to theirs .. and then if they still aren't away ... I share with them a symptoms website. At this point, they generally are going "OMG I might have it."

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The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31
http://www.jmgarnet76.blogspot.com


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 Post subject: Re: How To Reach Others
PostPosted: Mon Mar 02, 2009 9:54 am 
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Wow! that's so cool to hear you actually reached some, i am waiting for my first one. after all i am not asking them for there eye teeth, Just a blood test by a qualified Lyme doc that's all.


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 Post subject: Re: How To Reach Others
PostPosted: Mon Mar 02, 2009 10:08 am 
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Well that's why I made my blog too. That way people can see the struggles I've had and also the success I've had too.

_________________
The LORD is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. He gives power to the weak and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the LORD will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint. Isaiah 40:28-31
http://www.jmgarnet76.blogspot.com


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 Post subject: Re: How To Reach Others
PostPosted: Mon Mar 02, 2009 7:31 pm 
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Joined: Sun Feb 17, 2008 9:42 pm
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The only way I knew how Johnny was if they were searching and found their way here, that is why I started this site, hoping and praying that people would become educated, read other's stories and think.."hey, that sounds like me".

People diagnosed with any disease that could be lyme (and there are SO many, have you seen this list at Canlyme? Check this out: http://www.canlyme.com/phys.html#other ) are VERY resistant and downright hostile at times. I have tried myself at MS forums and Fibro forums, only to be met with a slap if only they could reach through the computer!

You cannot convince people their Md is probably wrong....the problem is too many people think their doctor's are well educated in every aspect of disease....enough to make me scream!

Best advice I can offer...pray!

God has put a few in my path...one girl at the pain management doctor's office who was diagnosed w/MS wanted to hear EVERYTHING about Lyme and when we parted ways she said she was going to get tested at Igenex.

The most amazing yet, my pain mangement Md himself. He is an Infectious Disease Md and when he saw my Igenex tests, he believed them and said, "We doctor's must admit, we do not know everything". About a week later, he called me and said he believed one of his patients had LD and asked me where to get her help. He has over 1000 patients and if the truth be known, probably 90% have LD and are diangosed with something else. But at least he is "aware" now.

Another, a lady, was reading my LD bumper stickers as I came out of the grocery store I said to her, "Do you know someone with Lyme?" She said, "No, but your bumper sticker's make me wonder if that is what my friend may have, they have diagnosed her with Fibro". That started a whole conversation for the next 30 minutes.

So far, I have found that people that are looking online - read other people's stories and "connect". That is how I figured out I had lyme, I read a woman's story and I thought, "that is ME!" I have had so many people say they connected w/my story. I had a pharmacist email me once and he said after reading my story (here) he had his wife and daughter tested and they both were now seeing LLMD's and in treatment, he thanked me profusely.

You should put your story together and I will post it here...someone will connect w/it and you can help people that way for sure. Just start at the beginning and how you started feeling and how many Md's you saw and if you had different diagnoses, etc. Look at our stories section, there are so many "views" (actually the "views" are inaccurate really, there are at least three times as many views on the stories that don't show, when we upgraded the forum a year ago the views returned to zero) - I know the stories are helping many.

I also visit other LD forums and will look for newbies to advise once in awhile when I have time.

Love,
Dana

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