Mayday 2013, Lyme Disease Rally in Washington DC
CNN PRODUCER NOTE lisahilton has had Lyme Disease for more than 20 years. She now describes herself as an activist who wants to raise awareness: 'We, Lyme patients, want to get the word out to the public and the medical community that Lyme Disease and other tick-borne infections are very serious and they are spreading quickly. The mainstream medical community is not educated in how to diagnose and treat them and this is leading to people becoming chornically ill and many have even died.' She shot this series of videos of the third Mayday Lyme Awareness Rally on May 25. There was both a rally and a flash mob 'die in' that included a march around the White House.
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nsaidi, CNN iReport producer
On May 25, 2013 hundreds of Lyme patients gathered to rally for Lyme Disease Awareness at the Freedom Plaza park. Even though each person was sick themselves, the Lyme community is on a mission to spread awareness this year and bring attention to their plight.
Over 250 people showed up. The beginning of the rally were speakers, doctors, authors, and Lyme patients told their stories of how Lyme Disease has affected them.
After the speakers, there was a "Die In." We have lost so many of our friends in this community and the public needs to know this disease is very serious. So we wanted to portray that by doing this "Die In," where patients all laid down on the ground for three minutes with their Lyme signs next to them as the public walked by.
Next was the march around the White House. You couldn't miss hundreds of people dressed in lime green, Lyme Disease's Awareness color, marching around downtown handing out Lyme materials and talking to anyone who was interested in learning about Lyme. Everyone marched around the White House perimeter chanting, "When will the world see, there is Chronic Lyme Disease," and " Lyme Disease is taking lives."
Lyme Disease is the fastest growing vector borne disease. It has now been found in every state and on every continent other then Antartica. There has been a lack of education surrounding Lyme Disease and other tick borne infections in the medical community and these patients and several non profits that have forming are trying to advocate for educating doctors on how to recognize the symptoms or Lyme and how to treat it.
If treated early, someone who has been infected with Lyme Disease has a chance of full recovery. Once left to go onto Stage 2 and Stage 3 it become much harder to treat and long term treatment is necessary.
There doesn't seem to be a "one treatment fits all" with Chronic Lyme Disease however. Research is desperately needed. Just last month in April, Lyme patients rallied to raise funds for Lyme Research, Dr Eva Sapi. She needed a particular microscope and there doesn't seem to be any money set aside for Lyme Disease. Soon there will be a fundraiser going on for researcher Thomas Grier M.S. to get the equipment he needs. Lyme patients are in desperate need for research and are doing what they can to raise the money themselves due to lack of help from outside sources.
Lyme has definitly replaced Aids/HIV as the new controversial disease. There is two stances on how to treat this disease. With the IDSA stating that it is easily treated and ILADS saying that long term treatment is needed, it's obvious which side is right. Lyme patients are staying sick and many succumbing to this crippling condition. Little is known about the other co infections that ticks pass long also. All research that has been done points to these infections are just as hard to treat and will turn out to be persistant if not treated appropriately also. There are now also reported cases of Babesia and Erlichiosis, two other tick borne infections that have been passed in the blood supply.
To pass the word on the seriousness of this disease and to try to gain attention from the public and health community, these Lyme patients have started to put rallies together to get the word out. On May 10 and 11th, there were 30 countries and over 20 states that protested for the Worldwide Lyme Disease Awareness Protest, and on May 25th, 2013 over 200 patients came to Washington DC to protest and marched around the White House handing out educational brochures and talking to people who were interested in learning tick prevention, or what to do once you have a tick attachment or start showing Lyme symptoms.
What to do if you do get a tick attached:
1. Use tweezers or a tick kits to remove the tick. Do not handle the tick with your bare hands.
2. Grab the tick as close to his mouth and to your skin as you can.
3. Do not grab the tick by his body. You could push infected fluid from the tick into your body if you squeeze it. Also don't put any chemicals on the tick or use a match.
4. Gently pull the tick straight out until his mouth lets go of your skin. Do not twist, squeeze, or unscrew the tick. This may seperate his head from his body and leave parts of him in you.
5. Save the tick. Put it in a plastic baggie with a moist piece of cottom and send it to Igenex Labs to get it tested. http://www.igenex.com/Website/
6. Wash the area gently with soap and peroxide.
Tick prevention:
1. Where light colored clothing so you can see ticks crawling up you.
2. Use Deet or Permethrin to treat your clothes. There are also many natural sprays such as Cedar oil, geranium oil at companies such as Dr Ben's at www.dgcedaroil.com.
3. Do tick checks when coming in from outdoors. Go through your hair, armpits groin. Ticks like warm moist areas to hide.
4. Check your pets when coming in from outdoors.
5. Keep your yard maintained. Ticks love tall grass and wood piles to hang out in. There are tick traps you can buy for you yard called Damminix Tubes. http://www.ticktubes.com/
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