RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
I am new to facebook because I was just too exhausted to care. I signed up a few days ago but don't know how to find other lymies there.
Can anyone help?
Thanks!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
There is a member here aka lymetwister (member # 19590) who is in touch with a lot of people on Facebook with Lyme. You can send him a private message and ask him.
Good Luck,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Jennie, There is a HUGE lyme community on Facebook. Send me friend request, Tracy Hamer Will, and I'll hook you up. There is a whole other world out there of Lymies who live in Facebook land. A large, large support community, pages, groups, etc!
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
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Thank you, Tracy.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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posted
I'm there too with about 100 lyme friends, "friend" me and we can share them. "Penny Kirk". Seeya there!
Posts: 219 | From pacific nw | Registered: Jun 2009
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posted
You can put the word Lyme in the search engine and many organizations will come up and any persons who have put Lyme in their facebook name. Send me a PM Jennie so we can FB.
Posts: 31 | From Southwestern Ohio | Registered: Feb 2010
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Jennie, I too would be interested in FB lyme friends. Tracy I am sending you a friend request. Jennie would be happy to PM or FB you as I need to know sooooooooo much more about this disease.
penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
Tracy - I found you on FB and sent you a request too!
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OK update; I was being stalked by former members here on lymenet that were banned, so I had to make a new FB profile just for Lyme Friends and keep my Tracy will profile private, just for friends and family that I know really well. They were copying my pictures, contacting my family, etc. NIGHTMARE!!!
So please send friend requests to Lyme Wreckage, then you will see a gazillion other Lymies you can send friend requests to on my friends list, Lyme pages to "like", etc. That is my lyme page.
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
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posted
To be perfectly honest I have found very little support/information/advice/discussions on the dozen Lyme related FB pages I belong to.
I am able to gather far more information from this website which I consider to be the best for forums.
Posts: 412 | From Virginia | Registered: Sep 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Remember that it's important to set security measures. If a current (or prospective employer) can see your Facebook page, that could have very real consequences.
Many "friends" are really strangers whose faces we never even see - that's important to remember. People are not always who they say they are. Don't "friend" someone right away - see how they behave on the sites you frequent first - just as you would in real life. But the web can be such a masking opportunity for stalkers, etc.
Same for your insurance company and for Social Security or for any other private disability insurers.
There was one woman with a disability (not lyme) who went on vacation and posted a photo of her smiling with a glass of beer. Her disability was revoked.
. . . her insurance agent described several pictures [she] posted on Facebook, including ones showing her having a good time . . . .
. . . "The issue for me is that they stopped her disability benefits without the proper medical recommendations. Her doctor recommended she go on vacation," he said. . . .
. . . the issue raises concerns for anyone who expects their private life to remain so if they post personal information to social networking sites such as Facebook.
"It's good warning for people who use Facebook. It's not like being at home and writing in your diary. It's out there for the whole world to see," he said. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Life insurance has been revoked for some who have lyme (it was for me). This is also a huge concern if a life insurance company can see your social network pages. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Life insurance companies can see your pharmacy records. That's enough for them. I am uninsurable because of that.
I have all my settings very private on my personal page. On my Lymewreckage page, not as private, and I do accept people I don't know because I dont' have identifying information.
One of the things many of us have been doing on FB in the Lyme Community is making two separate profiles so we can befriend all the other Lymies, without disclosing our personal information, yet still have a personal page to connect with family, friends, old high school and college buddies, etc.
It has worked out pretty well for those of us who have done it. Also saves the family and friends from having to hear about our illnesses non stop.
So on my Lyme Wreckage page, you'll hear all about my medical stuff, but you won't see pictures of my family (there may be a couple now, one from Christmas maybe, but for a long while none), you won't see names of any of my relatives, or any info about me, or even my real name (though I don't hide it, but it's not listed.)
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
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