Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see so many new posters who seem to be using their real names. Some post a first initial with what seems to be a real last name. Even a first name and last initial can be traced, too.
To do so is extremely dangerous regarding privacy issues. Even if you don't mind the world knowing you have (or may have lyme), insurance companies do search patients' names. Most insurance companies do not want to pay for lyme treatment - at all.
Also, some life insurance companies will not cover someone who has had lyme.
I don't know if one can re-register with another web name. But, if you see this BEFORE you sign up, please use a screen name that no one can figure out. Privacy concerns run deep.
Anyone can search a name and if it's here at LymeNet, it can show up with a web search for years to come. Same with most web sites.
Never post your real name, address, phone, names of family members or even the exact ages of your children on any public site. It's best to not post any particulars about your children as some who read all public sites can be searching for those who are vulnerable. Not everyone who reads this site is someone who wants to help. It is a public site.
All that said, most here are very helpful and here to make the world a better place, keeping your personal safety in mind along the way. -
** moderator's note - to change your name, you need to contact Jenifer, the other moderators are not able to change it for you **
[ 07-10-2010, 12:32 PM: Message edited by: sixgoofykids ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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julielynne4
Unregistered
posted
I would love to change mine. Haven't quite been able to do this so far, so maybe I should re-register? Not sure what to do about this.
posted
If you want to change your screen name, contact the webmaster at the bottom of the page. The moderators do not have the ability to change it. Unfortunately, the webmaster has been taking some time off lately, so please be patient in waiting for it to be changed.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I just did a search for "bugbarb" and came up with 3 pages of hits. Posts from an applesnail website from 2004! This makes me rethink how to answer the question on my disabil;ity insurance re-evaluation form of "Do you have email?" They also ask if I have a website.... I don't think I am obligated to give them any of that info. I now know why my therapist suggested I answer NO, to the questions about email
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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posted
Yea, I've been trying to change mine for a while, but the webmaster has been away. I wonder if I should just re-register.
-------------------- Bart and Babesia seropositive Current tx: Rifampin, Biaxin, Bactrim DS, Artemisinin, Resveratrol (japanese knotweed), Red Root, Boneset Posts: 168 | From PA | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ian,
I would not be as concerned since there is no last name or initial but you can change your location anytime by editing your profile.
You might try to re-register and see if the system will let you but it may let only one registration per computer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Moderators, I'm so glad to see this post as a sticky.
Lymenet has been such a valuable resource for me and for so many. The posters here are so generous with their information and experiences, all to help others by making their road easier to travel -or at least to let people know they are not travelling alone.
Incidentally, Carly is not my real name. In case anyone thought it was.
I consider myself a very honest person -honest to a fault (in real life). Not here on lymenet.
I have said many things that may or may not be true. I make up or change details when they have no impact on the point I'm trying to make.
I have no idea if anyone's ever noticed, but no offense was meant. It's not that I don't trust the good people here.
It's a privacy thing.
Posts: 797 | From New York | Registered: Feb 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also keep in mind that when one posts a personal web site in their profile, that can compromise privacy issues. Facebook, My Space pages, too.
It's best to never post photos, ages, schools of children.
Privacy is not just to shut down spammers and bad guys - but also insurance denials. You don't want your insurance company to know too much about you. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I definitely don't want people knowing my real name. Gumshoes Mcbuckles. Kids were harsh when I was young. Teeeeeheeeee
lolololol, yup.
-------------------- 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.
posted
Man, that's a rough name, Metallic!! I can just imagine all the teasing!!
Did they call you Metallic or Blue for short??
or maybe Gummy Bear??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For more about how to protect privacy and strengthen identity theft protection regarding web use, TerryK posted these links at another thread.
posted
I've done a google search on my real name before and my husband's. Up popped our names, addresses and phone numbers! If I remember right, it also showed prior addresses we had lived at.
The Internet may be a good thing, but it can also be a bad thing. I believe there is a way to get your name removed but it's been so long now that I can't remember how you'd do it.
I don't doubt that insurance companies and big brother watch over our shoulders and try to know as much about us as is possible.
-------------------- Dx with Lyme & homozygous for MTHFR. Antibiotics & nutritional IV's didn't help. Posts: 57 | From Kansas | Registered: Jun 2010
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posted
Thanks for the warning, Keebler, don't worry, "Burgess" is not part of my real name. Posts: 8 | From Tucson, AZ | Registered: Jun 2010
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RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
quote:Originally posted by sixgoofykids: If you want to change your screen name, contact the webmaster at the bottom of the page. The moderators do not have the ability to change it. Unfortunately, the webmaster has been taking some time off lately, so please be patient in waiting for it to be changed.
I have been trying to change my screen name since March. Any suggestions? Should I just register again and forget it?
I did contact webmaster in March...no response.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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I want to be "up front" in my stand for humane medical practices. If you don't want to use your name, I respect that. Health care personnel and most Lymenetters need to keep a low profile.
But people like Dr. J and PM want a credible voice. Their trumpet offers no uncertain sound.
I am not in their class but want to do what I can to help them and to help people avoid tick borne diseases or find help to treat TBDs.
I found what looked like someone else posting in my name. Maybe it was an accident. But if not they could post in my pseudoname if I had one.
My prior HMO used techniques that I considered unethical to deny Lyme as a diagnosis, to deny Lyme treatment and to reject my reimbursement claims. I fought back for 5 years with three claims, of which 2 were paid.
At present I'm trying to rally a fourth case in which expert testimony was quashed and physician credentials were misrepresented. Lots worse than online statements misrepresented.
-------------------- Neil Posts: 697 | From Tucson, AZ USA | Registered: Apr 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jennie,
I'm sorry the webmaster has not replied. I'm also sorry that I'm just exhausted and can't really try to find out more about how to change your name.
There are many jennie's in tennessee. If you want more privacy, you can change your location. You can do that just by editing your profile. I don't see how anyone could trace you with just your first name.
Neil,
I understand and agree with being honest, etc. For some, matters of insurance coverage means life an livelihood. So, it's just good to be aware.
For others who post when they are going away, or specifics about their children, privacy is also vital.
It's just good to know all the considerations. Knowing that with a name and city, anyone can hop over the Dex and find out exactly where one lives . . . and if they are comfortable with that, life goes on. It's just that many people are not aware that insurance companies do searches, prospective bosses or current bosses . . . or stalkers, etc..
For anyone with young kids, this is especially important as often, there are posts here about children who are homebound or when a family will be out of town.
Robberies have occurred from vacation postings on FaceBook. Remember, not everyone who views this site is a person looking for lyme information. All public sites are open to the world.
-------------- Neil, here's the link that can connect the dots for unwanted searches:
posted
I googled my name and what do you know? up popped stuff I had posted in open groups and instructor pages on facebook!!!!! So beware if you are posting in a lyme support group that isn't private.
Posts: 287 | From somewhere | Registered: Oct 2011
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Keebler"...need to talk...pm me or direct e-mail.
Posts: 9424 | From Sunshine State | Registered: Mar 2001
| IP: Logged |
posted
Sadly, nothing on the net is private. The biggest black mark against the current presidential cabinet is their difference in allowing private enterprise to monitor you and your computer activities as a demographic. Your taxes goes towards 70-billion dollar national security apparatus that supports 16 different agencies dedicated... to spy on you. Did you ever 'register' your phone number to facilitate an e-mail 'I.D.'? Did you donate blood, and give them your e-mail (which they must verify and store for 50 years)? You're on the grid; get use to it, or complain to your representatives... -and REALLY get on the grid!
Posts: 7 | From Berkeley CA | Registered: Dec 2013
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
nobody can pronounce or e ven spell my name right. it's french and the american spelling jus slaughters it.
I hate to give out my name and address to say nothing of ssn.
hey if you want my life you can have it!!!!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- randibear,
Google your phone number. Chances are your name and address will pop up with that. Sure does for most of us. Google name and address separately and all other detail comes up, too.
I've found the SSN of my deceased parents on line just by accident doing a basic search.
While the physical location of posters is best left undisclosed (and that requires hiding all personal detail from view), when personal email addresses are shared, in the wrong hands, anything in your computer and access codes, etc. can also be up for grabs, though.
As for addresses: often posters on medical forums will post certain Rx they are taking.
There have been some home break-ins [various web forums] where thieves learned when someone was off on vacation or some other details that led them to an easier time of it. Some just read, they do not have to post.
Most here are "real" and have good hearts but anyone can come round and pretend to be friends, too. Why PMs work so nicely to give time to "get to know" anyone before sharing email addresses, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
I just made a post about where people live.
When I was ready to exit a site came up to give my e-mail.
It ended up on my post some how & do not want on what happened there? How do I get off.
I thought they were just asking to verify my e-mail not post it???
Thanks, Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Kerry, just click on the paper and pencil icon above your post. That will allow you to edit your post any way you like. So, that is how you can eliminate your email address.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
quote:Originally posted by Keebler: - I see so many new posters who seem to be using their real names. Some post a first initial with what seems to be a real last name. Even a first name and last initial can be traced, too.
To do so is extremely dangerous regarding privacy issues. Even if you don't mind the world knowing you have (or may have lyme), insurance companies do search patients' names. Most insurance companies do not want to pay for lyme treatment - at all.
Also, some life insurance companies will not cover someone who has had lyme.
I don't know if one can re-register with another web name. But, if you see this BEFORE you sign up, please use a screen name that no one can figure out. Privacy concerns run deep.
Anyone can search a name and if it's here at LymeNet, it can show up with a web search for years to come. Same with most web sites.
Never post your real name, address, phone, names of family members or even the exact ages of your children on any public site. It's best to not post any particulars about your children as some who read all public sites can be searching for those who are vulnerable. Not everyone who reads this site is someone who wants to help. It is a public site.
All that said, most here are very helpful and here to make the world a better place, keeping your personal safety in mind along the way. -
** moderator's note - to change your name, you need to contact Jenifer, the other moderators are not able to change it for you **
-------------------- MM Posts: 15 | From Bethesda, MD | Registered: May 2017
| IP: Logged |
I want to get treated and the only way that is going to happen is to do a "go fund me". I have been really struggling with this since I don't like to ask for help and I am not on face book and don't want to be etc. the only way go fund me works is by telling all and posting your face and social net working.
since I have other diagnosis that will easily work as well ME and fibro do you think it would be just as messy with those? ME is just as political as lyme so probably yes. erggh.
Posts: 3 | From california | Registered: Jan 2019
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- dev999,
Sorry for the delay in reply. As this is more of an information thread, it rarely occurs to me to check it as has a permanent place and does't move up or down as other threads.
Glad I came to post a new article and saw your question.
Go Fund Me pages can severely risk privacy - and they are open to all kinds of eyes, not all of whom might be there for the right reasons. So I understand your wise concern.
Still, there may be organizations who can offer ways to keep your privacy and still seek funding options.
You might talk with the leaders a all the area lymc support groups near you, and the leader of the state group, too.
And - for other good suggestionsas to how to go about this, you might check out the links for connecting at
There is an excellent ME organization in Canada, too. The Nightingale Foundation. Contact them for ideas as well.
I do not know if any federal or state tax laws might also apply to donations, so be sure to add organizations - or an accountant - about that so if you have to pay any "income" taxes later on, that is set aside. Tax law can vary by state, too. And some laws change year by year.
Still, it may be non-taxable, yet still careful banking - a separate account and careful reporting records of how each dollar is spent, really matters. \ Do not let this discourage you from finding ways, though.
Also you might consider treatment options that include a RIFE machine and that might be handled with various groups.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not just the details we post, but also the things we might say in public, can come back to bite us if the "wrong" people happen to overhear.
Googling Strangers: One Professor's Lesson On Privacy In Public Spaces
By Francesca Paris - NPR - March 10, 2019 Excerpts:
. . . could hear the man reading his credit card number out loud from across the Starbucks. . . .
. . . She's realized that a few words about something as innocuous as her dogs, which she likes to feature on Instagram, could be enough for a stranger to identify either one of them.
And that, she says, is at least a little unsettling. . . . . . . "It's really quite easy," Klonick says. "Which is part of ... the scary, kind of, learning tool about this exercise." . . .
. . . Lehman, a third year law student, wasn't Googling the stranger for fun. She was on a homework assignment from her professor — to "de-anonymize" someone in a public place. . . . [Full article - & audio segment at link above] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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