This is topic MAY- LYME DISEASE AWARENESS MONTH in forum Activism at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/8/3104

Posted by Tincup (Member # 5829) on :
 
LymeNet members have always been a force to reckon with when it comes to educating others about Lyme disease during the month of May. They have have doing a wonderful job indeed!

I am starting this post as a place to come for ideas and also a place where you can share what you've done to promote awareness.

There is even a section for those who- "Only Have a Few Minutes to Spare Or Can't Get Out Much" located on the Ideas Page.

Ideas
https://sites.google.com/site/marylandlyme/may-ld-awareness

Handout Literature- free or low cost
https://sites.google.com/site/marylandlyme/handout-literature

Please feel free to add your ideas too!

[Big Grin]

[ 05-01-2014, 02:46 PM: Message edited by: Tincup ]
 
Posted by Robin123 (Member # 9197) on :
 
Yes! Just simply tell everyone you meet! I'm doing a pretty good job of that myself and people are asking me a lot of questions because they're hearing about it more now, thanks to more news publicity.

[ 04-30-2014, 06:25 PM: Message edited by: Robin123 ]
 
Posted by beaches (Member # 38251) on :
 
Thx for the reminder. I am planning on posting info May 1 on my FB page.

But I talk about it all the time anyway to anyone with ears.

And now with the woohoo news from the CDC that LD is under-reported, LD is on the map and in the news. But as I've been telling ppl, this is prep for mass marketing of the brand spanking new LD vaccine which I've told my friends and family to avoid like the plague.

Guess we have to take the good with the bad.
 
Posted by Tincup (Member # 5829) on :
 
I do believe Robin5937593 is the "go-to" person in her area for Lyme info, a never-ending wealth of information! Amazing she is, simply amazing! I hear of her hard work clear out here on the moon!

Beaches- love that you are one of the techy people who uses facebook and other media that some of the older volunteers don't use. (Not me, of course, I mean the other old advocates- HA!)

And you hit the nail on the head with the CDC promo for the vaccine. This is what happened before the release of the LymeRix vaccine to try to scare people into getting the vaccine. Sad our government can be so slimy and self-serving.

Many thanks for all you do, beaches! Keep on chatting it up. Like I could stop you, I can't!

[Big Grin]
 
Posted by Robin123 (Member # 9197) on :
 
Thx, Ms TC - I do work hard at it! Hope there's no ticks yet on the moon...
 
Posted by beaches (Member # 38251) on :
 
TC your first link does not work!
 
Posted by Tincup (Member # 5829) on :
 
Know what today is? May 1, 2008- an anniversary!

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

[Big Grin]

Changing it now- thanks beaches!
 
Posted by Dekrator48 (Member # 18239) on :
 
I find that regularly sharing accurate info/websites on facebook helps a lot.

I get frequent private messages asking me questions about tick bites, Lyme, etc.

I think it helps to approach posting some information from the standpoint of "chronic symptoms" or "chronic illness" or naming specific symptoms such as fatigue, sleep problems, pain, neurological problems, etc.

That can get people's attention who would not otherwise look at the info because they think Lyme disease does not apply to them.

I also keep copies of a handout I made (on lime green paper). It lists a lot of websites like lymedisease.org, ilads.org, Dr B's "Advanced Topics in Lyme Disease", lymepa.org, "Under Our Skin" free on hulu, and others, with a very basic description of what is in each link.

When I run into someone talking about tick bites, Lyme, etc at the soccer field, baseball field, grocery store, etc, I can give them a copy of my lime green handout.
 
Posted by Dekrator48 (Member # 18239) on :
 
I posted this on a Fibromyalgia/Chronic Fatigue Syndrome site that I am on. If anyone wants to copy and paste it to use for Lyme Awareness, feel free:


May is Lyme Disease Awareness Month! Chronic Fatigue, Pain, Etc Could Be Tick-Borne Infections!


For Lyme Disease Awareness Month I am posting links to very good and helpful information about tick-borne diseases/infections. This includes info about Lyme, Bartonella, Babesia, and other infections.

If we find and treat the root causes of our symptoms, we have a much better chance of recovery.

Basic info: www.lymepa.org/Basics2007v1.2Rev.pdf

www.ilads.org/lyme_disease/about_lyme.html

www.lymedisease.org


"Advanced Topics in Lyme Disease" by Joseph Burrascano, MD (Testing, Diagnosis, Symptom List, Treatment, Common Co-infections):

www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


"Dr Holtorf on Lyme Disease Diagnosis and Treatment":

http://www.prohealth.com/library/showArticle.cfm?libid=16301&B1=EG060111


"The Surprising Connection Between Lyme Disease and Fibromyalgia":

http://www.prohealth.com/library/showarticle.cfm?libid=18052


"Lyme Disease and Bartonella: More Common Than You Think":

http://www.dearpharmacist.com/2013/06/11/lyme-disease-and-bartonella-more-common-than-you-think/


"Lyme Disease Presenting As Chronic Fatigue Syndrome":

http://www.prohealth.com/library/showarticle.cfm?libid=13217


Video: Conversations About Lyme Disease With Dr C (a LLMD):

https://www.youtube.com/watch?v=3FP-73TCFKU


Free online documentary film about the unrecognized Lyme disease epidemic, "Under Our Skin":

www.hulu.com/watch/268761


Tick-Borne Disease Alliance:
www.tbdalliance.org


Lyme Disease Association:
www.lymediseaseassociation.org


Labs: www.igenex.com (Lyme western blot IgG and IgM, PCR, Co-infection panels)

www.advanced-lab.com/faq.php (Lyme culture test)


"Lyme Disease: Two Standards of Care":

www.ilads.org/lyme_research/lyme_articles4.html


Lyme Disease Message Boards (for Medical Questions, Seeking a Doctor, etc) Click on Flash Discussion and sign up for free:
www.lymenet.org


Chronicle full episode, "Ticked" (20 min):
www.youtube.com/watch?v=s3_JwDPqGAg


"Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub, book about the Lyme disease controversy:

www.cureunknown.com/

[ 05-02-2014, 11:05 PM: Message edited by: Dekrator48 ]
 
Posted by Robin123 (Member # 9197) on :
 
Very nice, Dekrator - thank you too for all your advocacy!
 
Posted by Tincup (Member # 5829) on :
 
Dekrator...

WOW! That is GREAT! Info and delivery method too! And a nice touch with the lime green paper. A real eye catcher!

I will check out some of the links I am not familiar with, as well as share your good info. (After, of course, I have my ice cream.)

In fact, several groups locally are having Lyme programs in May. Would you mind if I share this post with them?

Let me know please! And as Robin5032859374 said, thanks for all you do!!!

[Big Grin]
 
Posted by Dekrator48 (Member # 18239) on :
 
You're welcome, Robin and Tincup.

Please do share the post/info any way you can!

(I just noticed that I had forgotten one of the links, so I just edited to add it.)
 
Posted by Tincup (Member # 5829) on :
 
Thanks again. I needed the Advanced Lab info to add to websites, so appreciate the easy find.

Now trying to get the computer to play the videos. Not much luck with that, but will try!

[Big Grin]
 
Posted by BobG (Member # 39642) on :
 
GO TO CDC'S FACEBOOK AND LET THEM KNOW IT IS LYME AWARENESS MONTH.

THEY OBVIOUSLY AREN'T AWARE OF IT!!!!!!!!!!!!!!!!!
 
Posted by Winesnob81 (Member # 42355) on :
 
Good one Bob [Smile]
 
Posted by Dekrator48 (Member # 18239) on :
 
I would not want the CDC to post anything about Lyme awareness because it would not be accurate, but the general public would believe it.

I think it's better for them to be silent until they can teach the truth.
 
Posted by Tincup (Member # 5829) on :
 
And those of you playing with the CDC by reporting your own case, please read this.

https://sites.google.com/site/marylandlyme/idsa-panel-review/beard-e

https://sites.google.com/site/marylandlyme/afterthebite-articles/zemel-letter-1993

The case reports are used, illegally, to go after doctors. I would not send your info to the CDC. They won't do anything but laugh at you or cause you and/or your doc problems.

This action is not a good idea, in my opinion.

Make the public aware. The CDC already knows it all, and will not change.

Hope this helps!

[Big Grin]
 
Posted by GretaM (Member # 40917) on :
 
I've been telling everyone I meet in my neighbourhood (with a dog), that the ticks are a plenty already.

Having this little dog is great. When at the dog park, I bring up the ticks I've found already this year. He is such an easy going guy, I demo tick checks on him! He thinks it's a game! Haha!

It's a great conversation opener and more times than not leads into tick check conversations on people AND dogs, and also tick repellent for people and dogs.

People often care more about their dogs than themselves-this is a good way for me to get tick checks into the forefront of their brain.

Dogs in a big city are ways for people to strike up conversation. Any dog owner is an instant friend!

So for any folks shy about bringing up lyme, use your dog or outdoor cat to get the word out [Smile]

Especially if you're a regular in your dog park, parks or walking your dog, people will remember you (or your dog) if they have any questions.

Plus it helps my dogs gear is all lyme green [Wink]
 


Powered by UBB.classic™ 6.7.3