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» LymeNet Flash » Questions and Discussion » Activism » An Activism Suggestion!

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Author Topic: An Activism Suggestion!
Robin123
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Hi all -- since I had fibromyalgia for 25 years before I was diagnosed with Lyme, I decided to check out a large online fibromyalgia support group.

And what I have found there boggles the mind. Everyone has the same conversation we do here, but minus any clue as to what's causing their symptoms! Just, "fibro has no known cause."

Well, I am answering everyone of these folks' desperate statements asking for help, and yes, I am sending them to lymenet to read up on Lyme and co's. And saying that all you kind people will help answer their questions and find them doctors, etc.

So here is my suggestion: that any of us that want to do this go to the labelled condition that we had, like CFDs or MS or whatever it was you got labelled with before you found out you actually have Lyme.

That is, go to a big label site and let them know what they might actually have and invite them to check it out here or whatever web site seems relevant, like I told the Canadians to go see canlyme, the Europeans to check for the European support groups listed here, etc., to see if they think they match what they're reading about.

We can relate best to the folks that have the same symptoms we have had. This is a huge rescue operation!!!

Posts: 13069 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
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Good for YOU!!!

VERY important! I've always wanted for Lyme patients who were misdiagnosed with MS to help them too and even sign up to do their walk a thons. Good way to reach them!

But a warning for you... from experience.

The boards you visit.. especially MS and the like.. often don't want you there. Especially the doctors/nurses moderating.. especially if they are the doctors treating patients.

I can't believe it but I have actually been booted off a board.. as have others here.. by simply mentioning Lyme on an MS board.

MS patients are often the hardest to convince they may have Lyme and at least should be checked. They cling to that diagnosis like white on rice.

To admit they may be wrong and their precious ducks might have not diagnosed them properly is too hard to comprehend and accept. We loose a lot of folks because they are not strong enough to look at any alternatives and admit they've been living a lie all these years.

My point in telling you this is to be sure you don't get insulted or your feelings hurt by working so hard to help... and then getting the boot or nasty comments tossed your way.

But I think what you are doing is WONDERFUL!!!!

Go for it!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20353 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
bettyg
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robin, you rock girl; i'm so proud of what you are trying to accomplish.

you know i'll send them my big newbie package keeping them busy for a long time! lol [lol]

as tincup says from her personal experience of being kicked off boards, don't let your feelings get hurt; you are a REA GO-GETTER! keep it up.


anything new on your tv show to be aired that's been on hold now for many months!!?

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Robin123
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Thanks, tincup and Betty -- I am continuing to work on the fibromyalgia board every evening -- answering questions, making statements, basically steering people here -- I hope some are coming over here -- it's painful to read their statements and see Lyme being so blatantly described, and they don't even realize it yet.

Re the show -- I'll resume my inquiries next week about it.

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Neil M Martin
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I used to post on a cancercure. chat page, until I wrote that my NHL went into remission when I was treated for Lyme. Only one person expressed interest. But it was worth the effort.

--------------------
Neil

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Tincup
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Hey hey Neil...

"Each one reach one."

You are doing well!

````````````````````````````````````````````


Go for it Robin 12345678.

I admire your willingness and efforts.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Robin123
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So far, so good -- I'm the only one there who can tell them what each and every crazy symptom means! Like a wizard who happened to drop in...lol! I try to be respectful in answering people.

What drives me to do it is I went 25 years with fibro etc without anyone clueing me in. So I'm happy to do it at this point and I'm very serious and sincere about it!

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Pocono Lyme
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Robin,

I'm sending you a PM with a link to a site I go to when I feel up to it.

More of us but without a diagnosis. Many very young people too. So Sad.

Lyme is being mentioned more and more.
You're doing a good thing.
You won't get booted off of this. You don't have to register, but every post or reply is reviewed by the moderator before it is posted.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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Robin123
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Sigh, Cave -- Now I'm contacting everyone of those 300 ignorant places and telling them.

Pocono, thx for the link. Will check it out.

Upping the ante at my fibro site. Am asking does anyone have any other explanation for fibro at this point?

I was published in a book on fibromyalgia in the 90s. I found this book recently, I contacted as many of the authors as I could find. It's coming in Lyme.

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Meg
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Robin, It's wonderful what you're doing!

Could you put that groups link up here to send some of us others over to that particular group?

Sounds like you're making headway with them and another voice or two may help reinforce what you're saying.

--------------------
Success Stories---Treatment Guidelines

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Robin123
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Meg, the site is www.fibromyalgia-symptoms.org

Tonite, in the Discussion category, in the post We Have Fibromyalgia(in which I was told We Have Fibromyagia, not Lyme), I gave them the url to Melissa Kaplan's comprehensive list of Lyme disease symptoms, asked them to look at it and discuss. I have made the point that I see no difference between fibromyalgia symptoms and Lyme disease symptoms.

I'd like the conversation to stay courteous and informational/as an exchange of ideas and thinking about what's going on.

I think this discussion is a huge surprise to them, as they are not used to the idea that there is any explanation for what they're going through, but my experience is so clear: tick bite, FM symptoms starting three months later, 25 years of it, positive Western blot test, huge response to clindamycin as in fibro pain goes to zero in one week!

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alliebridge
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I posted on different boards last year, fibro, MS, CFS, etc. and got attacked for it!

Some people aren't open minded so just be aware that it may happen to you.

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Robin123
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Allie -- I hear you -- I'm just trying as much as I can to let people know that their many symptoms sound exactly like Lyme disease, and then I give them the sites where they can go look at the symptom list and see for themselves.

There's been quiet so far, a couple people who are acknowledging the possibility, one person who confirmed a Lyme diagnosis for a family member, and a couple who have told me it's fibro, not Lyme.

Also a couple have tested negative for Lyme, so that must mean they don't have it, right? I gently try to tell them the kind of test matters, the lab matters, and then even then people don't always test positive and a clinical antibiotic trial can be attempted.

What keeps me going here is that they are suffering with the same symptoms we have. We'll see how long I last...

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