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what do you do to help bring awareness and CHANGE how poorely LD is viewed and misdiagnosed

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Posted 8/14/2010 4:51 AM (GMT 0)
I was thinking, here I am chatting with all of you...  I feel that we should do something about this.  WHY IS NOT LYME DISEASE TAKEN SERIOUSLY?   What can I/WE do to help?  TOO MANY sad stories and people not getting treatement because they are turned down by their insurance.  TOO MANY clueless docs.  WE have a voice and together we can accomplish something great?  What can we do?  Where do I start?  Is it possible to start an aweareness program locally?  If we all do that, we can cover quite a bit of teritory.  Any ideas?
Posted 8/14/2010 5:51 AM (GMT 0)
Things I have done:

1. I bought Lyme awareness bracelets for my family members, who wear them and spread the word that we have lyme here.
2. My chiropractor gives patients my phone number and email when he suspects they may have lyme. We talk about symptoms, LLMDs, etc.
3. I wrote to our local legislators, encouraging those who didn't already support it to do so, and commending those who already did support it.
4. I work with other local lyme people to reach out and educate people in our circle of influence. One way we've done this is to invite people to lunch with us. Sometimes it helps for them to hear from more than one person. We also organized a local screening of "under our skin."
5. Keeping myself up-to-date and informed by researching, reading, and networking so that I am optimally equipped to spread the word.

There is still a lot to do. We are talking about how to approach local physicians and veterinarians regarding the prevelance of lyme in our area, and what signs to look for in patients with long-term lyme. We're also talking to a local radio celebrity about participating on a talk-radio broadcast about lyme.

I look forward to reading about what others are doing and to getting ideas of how to broaden my influence.

Rose
Posted 8/14/2010 2:07 PM (GMT 0)
Willowrose, what great ideas you have. If I ever get "back on hoof" so to speak, I would like to be a mover and shaker too. For the time being, I'm just surviving, mostly in bed whining about the treatment.

My personal opinion is that CDC does know the extent and severity of the disease, but they're covering it up to avoid mass hysteria. It's easier to tell people to be sure and watch tick bites than it is to tell them all the ways it can be spread. This is also good population control and as long as people are dying of other (misdiagnosed) diseases (cancer, MS, auto-immune disorders, etc. etc.), nobody will question it. Why else would the doctors who are treating lyme be harassed so badly???? Oh dear, I don't want to come across as a radical because I'm not....but.....isn't a nation of sick people pretty obvious?????
Posted 8/14/2010 3:16 PM (GMT 0)
I hope you are feeling good enough soon to do the things you want to.  Thanks for your kind words; I never feel like I am doing enough because the need is so great. 

I agree that there is at least a suspicion in the CDC about the extent and severity of the disease. I've thought the reason they are not more forthcoming is that they are opposed to long-term antibiotic usage (for good reasons) to the extent that until they know and approve of another way to treat us, they do not want to publicize it. They do not want masses of people on antibiotics; in recent years the government camaign imparted to physicians is to limit antibiotic usage to avoid superbugs.

Rose

Posted 8/14/2010 4:33 PM (GMT 0)
Thank you, Willowrose, Hope is the only thing that keeps me going...and probably most of us.

The need for information is also great in the area of amalgam fillings and mercury toxicity, too, but all I do these days is ponder about what could be said and done. If the day comes that I can think and function, look out...it's hard to tell what cause(s) I'll take on!! I may end up on a hit list somewhere!!!

The amalgam issue has been/still is a big cover up. Cancer is another fiasco (Lorraine Day, MD, is a good resource for this). AIDS finally came to light after a lot of denial. With those examples, I have to stand by my opinion that if what CDC really knew about the lyme epidemic came out, it would cause chaos. Again, personal opinion.

Your take on the antibiotic issue is a good one and a valid point.... Short summary for all this is: Boy, what a mess we're in!!!!!

I am on Day 1 of a 5 day vacation from abx. How I look forward to having a little strength by Day 3. Is it possible????
Posted 8/16/2010 2:11 AM (GMT 0)
The way I'm fighting back is by writing about my experience & posting on Hubpages. I'm also doing a video diary on Youtube. I talk about it to everyone, including Medical Doctors I come in contact with in my job. My own GYN doc looked me straight & said " You don't have Lyme...your test says negative. You have to have more than 3 bands"

         Please!!!  I'm turning into quite the activist, myself.  I just posted a poll on here titled "Lyme Exposure Poll".....please participate.

Posted 8/16/2010 3:08 AM (GMT 0)
I actually just sent a little letter to Sanjay Gupta of CNN asking whether they've done a story of the Lyme epidemic....specifically I said they just had posted a story that the swine flu epidemic is over...what about the ongoing Lyme epidemic? and sent a link to a good youtube summary....
Posted 8/16/2010 3:47 AM (GMT 0)
You all have great ideas! How about we all do it together? Contact other forums and we ask all the networks for a Lyme story? What do we have to do to draw enough attention so they will do a story?
Posted 8/16/2010 4:14 PM (GMT 0)
I just want to say THANK YOU for all of you who are DOING something, no matter how big or small... I dream of doing things, I think of doing things, and I desire to do things...but I'm just too tired, too angry, and too mentally overwhelmed (I think it's the "fog" people refer to!)... I hope that some day I will be in the position of being able to do my part and have my turn in Lyme awareness and advocating for others...until then, I will just say thanks...from the bottom of my heart. :)

Rachel
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