posted
I was in the hospital all weekend due to my spinal taps. Nurses, docs, x-ray techs were all interested in Lyme. I talked with them, and I want to be able to inform people the truth about lyme.
I attend Brigham Young University Idaho. Also, I am getting married next month.
How can I become an advocate?
Thanks!
-------------------- Stephanie, University Student.
Ehrlichia [POSITIVE] IGG/IGM AB [H] 1.49 indexLyme AB interp. EIA [A] POSITIVE IGG P93 AB [PRESENT] IGG P41 AB [PRESENT] IGM P41 AB [PRESENT] IGM P23 AB [PRESENT] Lyme IGM WB interp. [A] [PRESENT] Posts: 145 | From Idaho | Registered: Feb 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
The best thing you can do is educate yourself really well first so that you are sure you know what you are saying is true.
There are many links to info on this site at the top of each board.
Then you can get involved in contacting your state's representatives,etc to tell them your concerns.
You could always start a support group.
You can create awareness through wearing a lime green ribbon on your clothing (people ask questions about it), showing the movie "Under Our Skin" to your family and friends, and maybe you could incorporate lyme into a paper or school project.
There's alot to learn....good luck!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
You can order FREE brochures from the Lyme Disease Association website and take part in "Ribbons Across America" which asks the homes, business put lime green ribbons out for all to see. The month of May is a great time to ask town/city official if you can put "Ribbons" on Town Common/Park trees to help raise awareness. Good for you! Blessings, Trish McCleary wwww.S-L-A-M.org "Ribbons Across America" founder
Posts: 142 | From Sturbridge, MA | Registered: Jul 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First, find a good LLMD or LL ND and get started on your own treatment path.
Get the books, read the links . . . read, read, read. Take care of yourself so that you can get better. You will learn as you go. Then you can best help others.
As your ID doctor is not on board with treatment, you might be careful how many people you talk with you have access to your medical file. Often, our enthusiasm will be recorded in a chart and can interfere with our treatment later. Most doctors think lyme is no big deal at all.
By your talking to the others where your ID doctor works, it makes either you or the doctor look bad because what you say does not match with what the ID doctor says. It can make for a rough road.
Your enthusiasm is good to see but you will first need all your energy to learn what to do for our own treatment path. Along the way, you can help educate others about prevention with brochures, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree with others who have said you must first concentrate on getting well. Read the books and websites, participate in on-line support groups and in-person support groups if you happen to have one in your area. Then, share the information with family and friends. Have you seen the DVD "under our skin"? Perhaps you could have a showing at your house and invite some folks over to watch it with you. There are a lot of educational resources on CALDA's website at www.lymedisease.org. Good luck on your Lyme journey.
Posts: 991 | From California | Registered: Feb 2006
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
You might consider putting up a poster in Halls,
Dorms, Etc. letting the students know if they
venture into tick territory they should use
protection and why.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Contact the LDA for educational materials, flyers, pamplets, etc.
It is very important that anything posted comes through the LDA or ILADS for "one voice; same message" -- to be sure all the details match up.
Someone posted this above, but, it's good to have it again. Work with them:
posted
See my post what one can do but basically, don't remain silent. I like what others said about making sure you know what you're talking about... but then say something, shout something!
Talk to your local paper and get a reporter to share your story! They almost always say yes, and it helps others see the gravity of this disease!
Good luck! Anything helps, silence kills! Good job Stephanie in asking! That's the first step!
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Many of sick students need to take years off, till they feel better and can continue studies.
They need to keep their scholarship and their right to get teir education later.
Also it would help if they could study part time and keep the scholarship. Or get the right to cancel a course without negative impact if they are not able to learn so much and just take the same course again next time.
How do you manage to study with the diseae?
Posts: 1834 | From US | Registered: Oct 2008
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posted
Hey Stephanie - May Lyme Disease Awareness month coming up - I hope you do some communicating with folks about this!
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
There's a graduating HS Senior in my area who works with a local support group to arrange viewings of "under our skin," and has local LLMD's do a presentation and answer questions prior to the movie. She also tells her story.
Posts: 252 | From New York | Registered: Apr 2010
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