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» LymeNet Flash » Questions and Discussion » General Support » How are YOU making people lyme aware?

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Author Topic: How are YOU making people lyme aware?
lymegal23
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I'm trying my best to make people aware of lyme

Anyone that I know that is having strange symptoms, i immediatly tell them to get tested. I have been really trying to spread the word. I know a few people who kno others with CFS and Fibromyalgia diagnosises. im telling them to get checked as well

How have you all tried to make people more lyme aware? god knows this world needs it. everyone is so ignorant about it.

Posts: 995 | From somewhere out there | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Keebler
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Just take care of yourself and simply give them a brochure with ways to find out more detail.

Until we get well, they are not likely to take our word for it. The very best thing we can do is lead by example.

Also, it can be very intimidating for others to be approached by overly zealous bearers of any kind of information. So, a few select materials from a professional organization are best. If they want to know more they will know how to find that.
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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www.ilads.org

ILADS

===========================

http://www.lymediseaseassociation.org/

Lyme Disease Association

They have educational materials (pamphlets, etc.)

============================

http://www.lymedisease.org/

California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.

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www.turnthecorner.org

Turn the Corner Foundation

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http://www.lymenet.org/SupportGroups/

Your STATE and AREA LYME SUPPORT GROUPS
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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It's important to know that you could be putting your LLMD at risk if you give his or her name out to a lot of people who then ask their own PCP about lyme and that PCP does an inquiry on the LLMD.

It's very important to keep private the name of your LLMD unless there is someone who is ready to explore this. First, just hand them a LDA brochure because, really, "this is information that everyone needs to know - even if just for prevention."
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Dawn in VA
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I never keep my mouth shut. I think leading by way of personal experience is good route b/c then folks don't feel bamboozled by stats and medical info they might not be able to understand. For ex, "I had ___ symptom, just like you, and..."

On the other hand, others are really receptive and want as much info as they can get.

I also always leave them with some type of way to get in touch with me. I know some people are not comfortable with this idea for understandable reasons, but I am an open book. A fellow Lyme patient helped me quite a bit on a personal level when I first got started on this nutty journey.

LDA has some very good brochures and you can get a certain quantity of them free of charge. I also always carry Dr B's stuff around with me and have created a few documents with stuff like "What to look for in your Lyme doctor", testing info, symptom lists, support groups, Bb life cycle and morphs, etc., for easy emailing.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Tracy9
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There was a great thread recently about what we can all do in our communities or something like that, if someone can find it and post it here, it has lots of great replies and suggestions.

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NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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By *****ing and complaining about how sick it makes me feel. Haha

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I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
Lauralyme
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Nobody seems to appreciate what I tell them...they think it will never happen to them.

To close friends I suggested that they do heavy metal chelation to prevent themselves from getting lyme.

They reply.... but why when I am healthy now?

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Fall down seven times, get up eight
~Japanese proverb

Posts: 1146 | From west coast | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
Robin123
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I give people a CALDA brochure and one of my 1/4 size typed up slips with a little general/local info and contacts.

I find that it's very helpful to have both a brochure and selected typed info for our particular area.

LDA has free Lyme and co-infection brochures available, called Lyme R Primer.

Lauralyme - that's the point - it's the statistical odds that any of us get this.

When people say that to me, I first identify with what they're saying. For example, I ran around the entire bay area for 25 years like anyone and never got bitten, even tho I could have. So I think it helps to agree with someone who says it won't happen.

THEN I follow up by saying "And I was bitten by only ONE tick in Big Sur in 1981 and that ONE tick turned my life upside down. So I think it's urgent to protect from just ONE tick getting you." Then stop and see what they say.

I think it's a matter of finding commonality with someone so they feel that you hear them and can see where they're coming from.

Then move the conversation forward to the statistical truth - that it's random, but it happens. And then how to protect.

Just have to watch what they're saying and respond accordingly. Some people are reachable and some aren't, I've found.

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onbam
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LEaving brochures at places of business is good. You can get free ones from the LDA.

In general, I find that the vast majority of people are far more receptive when you talk to them about things that are "out there" or "conspiracy theories" than you're led to believe they are.

I think the world is ready to wake up to things like this.

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lightparfait
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Dr.K is giving a talk in NYC on chronic lyme, and inexpensive natural protocols for those who are not improving on the long term abx. He is opening this up to the general NYarea lyme community of patients as well. LLMD's are going, but he wants to offer options to patients who cannot afford treatment. thanks Dr. K!
Posts: 1009 | From NJ | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
Tricky Tickey
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I downloaded some brochures from ILADS website. I've given out a few. I've found the best activism is to talk, talk, talk. Share your story. I've written a narration of my illness on Hubpages.com. I've had hundreds of hits, some people telling me thank you, that they've had symptoms and will get checked.

Others have seen my video diaries, posted on Youtube, of my journey. I put links to resources on my videos and articles, too. Best of all, the video I made about overcoming the illness has had over 250 hits. It's all about activism.

I special ordered Lyme activism stickers for my car.  - It's all I know to do. And I won't stop. I may be well, but I'm not through yet! Go girl!

--------------------
Early Disseminated LD- 2010.
Currently doing acupuncture and yoga.
Negative Igenex (IND & Pos Bands)
ISSUES AFTER: Tendonitis, letter reversal, Low immune system.
PREVENTION:SaltC,Iodine,Humaworm,
Chiropractic.

Posts: 1013 | From In a van down by the river. | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
seekhelp
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I will not make anyone aware unless I cure myself/go into remission. Until then, I cannot believe with certainty Lyme is what makes me and so many here ill. I know it 'not just Lyme.' Me promoting an illness and treating for 2.5 years with little improvement is not morally correct.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
RESOLVED.
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This is going to sound really stupid (I warned you), but it works for me.(I do like the bit**ing and complaining suggestion from METALLIC [Smile] )

I posted about this a long time ago. I painted my pinkie nail lime green. First, I was wearing a green plastic bracelet from Under Our Skin, but no one even asked about it. EVERYONE wants to know what's up with my green pinkie nail.

I start on my Lyme-talk and they actually listen, at least they pretend to. I'm leaving a green nail on until I get well. My LLMD even asked about it. Then he said maybe they should sell some green polish in the office. It really does work for me. I wouldn't do the whole hand though, it loses a little credibility. I'm not a freak afterall! [Smile]

If you want to try it, I use Nicole by OPI polish in, seriously, "make mine lime".

Posts: 246 | From south florida | Registered: Mar 2010  |  IP: Logged | Report this post to a Moderator
randibear
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ya'll know i just gave up on even metnioning it to anybody.

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do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
momlyme
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RESOLVED. - I like that! "make mine lime" [lol]

I am going to look for that!

--------------------
May health be with you!

Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began.

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Robin123
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I met someone once who wears a lovely lime-green shawl. When people comment on it, she tells them why she wears it.
Posts: 13084 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
   

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