posted
for some reason i get kind of annoyed that people dont put where they live. instead they put "out there somewhere" or "here" or "mars" or something.
i understand its everyones own choice i just dont understand why people make it. if you put NY or Kentucky or Denver i dont see how that can prompt some nut on here to track you down. hard to find someone with no name, and kentucky has millions of people in it.
even if your worried about people knowing what state you live in why not put Northeast if you live in maine or southwest us if you live in phoenix.
the only reason i wish people put areas is so others here could recommend drs in their area that could help that person. instead people just see a post and never think twice about the fact that this person could be very close to a health professional who has significantly helped.
another reason i would like to see ares is because its interesting to see where people with lyme live in regards to the spread of the disease. someone who lives in kentucky may see several others from the area an not feel so alone, i never see anyone from kansas on here like me. maybe you see people in new mexico and think 'man lyme has even spread there'.
idk, am i way off base?
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I no longer put my city and state because of a nasty ID doctor who is harassing my LLMD... looking to stop her from treating my son because "he has been treated adequately and any symptoms he has after 21 days of abx are in his head."
Perhaps others feel the same fear?
-------------------- 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. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Many don't put theirs because people have tried to come after them, or followed them -- like LTD carriers, insurance companies, lawyers and even doctors.
They follow what you say here, and if they figure out who you are, they can take words you say out of context, and threaten you financially or to pull your SSI or Short term or long term disability.
Lyme patients are some of the most harassed chronically ill that I know.
-------------------- 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.
I love your posts! I would love to answer your question.
I don't include my location because I am from another country.
People from my small city use this forum, and have harrassed me about giving them all sorts of information.
In the past, one person from my city was really sick with Lyme disease. He asked me for all sorts of information. So I gave him some information, not all.
Then this same guy went and submitted all my emails to the newspaper, and our biggest country wide t.v. station.
He included my name and lots of personal information that I gave him in the emails.
I was really upset. I had told him not to say anything. Then another member of his family started to email me for more information.
Our city is small, and our country is kinda small. If my story and name was in the news media, it would mean that I would lose my job.
If I lose my job, then I would not have money for meds, Dr. appt's, mortgage, food, etc. etc.
I am barely hanging on to this job because of the severe pain that I have to endure daily. I even have to try to hide many other symptoms. It has been torture! but I don't have a choice.
Then my family started to blab everything to everyone, and even started to call gov. agencies, and told me they were doing it on my behalf.
I have been betrayed by everyone, and so stressed out about my bosses finding out.
If there is a millionaire that is willing to donate money to me to cover all my expenses, meds, appointments, etc. etc. , then, I would take the money in a heartbeat. I would then be willing to become a fulltime activist for Lyme Disease patients.
I actually am thinking of sending the Under Our Skin video to lots of rich and famous CEO's and ask them for money or a job.
If anyone has a job for me that I can do at home, I would take it! I don't do MLM though, so please don't send me information about that.
Thanks!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
Leaving off info like this is necessary. The more anonymous you are the better in the current climate.
And not everyone who says they are lyme patients really are. We should be very careful. Not so trusting. If people ask you for too much info, you should be referring them to support groups who can spend some time verifying legitimacy.
Remember that some of the people who sue lyme doctors and report them are patients who may have come here in the beginning. The green santa program has had scammers. Some people are sick in more ways than one and may decide to cash in on the controversy. Just look at that Tribune article and others.
I always worry that these people who say they aren't sure they have lyme and they are worried about starting treatment.....that they will then decide they never had it. So, the unsure should not be pushed into anything by us. They should wait until they are sure. This may cause them problems, but this disease requires conviction and strength, not wavering and doubt.
And to remind people, one of our former posters was reported to child protective services with a pack of lies about her child. Her child was pulled out of class and questioned. She was questioned. She no longer posts here. This was caused by someone in govt who got away with it. He got her identity and location from this website.
Posts: 8430 | From Not available | Registered: Oct 2000
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Missing, I totally get your point. I can see not putting your town... or in your case, maybe even not putting your country if it is really small and that might be an identifier.
I do see the other side of this too and that is why when I removed my town and state, I still left the general vicinity. So that when people in this area see the same symptoms, they can see that it might be the same strain of Lyme...
-------------------- 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. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
People have priorities. Protect themselves, or risk their livelihood to please members here.
I don't give a **** what they do to me. They came after me before but I can hold my own. I have a lawyer who knows all about this. I don't have a family or a sick child to worry about who might get caught in the middle. I don't have anything to lose.
So I keep opening my mouth in opposition to these people, and I keep telling the truth.
I dropped my insurance company "Unum Provident" when they had someone outside my window taking pictures and then they called me telling me I was in violation of the contract. I was walking to my car to go to a doctors appointment for christ sakes and I wasn't even driving!
Then they took things I said on a site like this and filed it as a lawsuit to get their money back. The post in question was when I was feeling better one day, so I told people "I'm feeling a lot better for once, I hope it lasts. This supplement Trasfer Factor must be working."
That's what I said. Within a few days I was sick again.
Get the point? I'm far from the only one this has happened to.
They can't touch me now though. I have no insurance that will come after me because my disability is based on a chronic illness with no known cure. People feel better but then get ill again, so the disability and insurance can't be pulled until my doctor officially agrees to do so.
-------------------- 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
It really can be a problem to give out too much information.
That's why it's a REALLY bad idea to post your NAME or email here!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I try not to give too much info online...too many weirdos out there.
Posts: 1104 | From N.California | Registered: Jan 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
After many different doctors told my family and my neighbors that lyme is not here, I wanted the world to know that it IS here! So I put my location on my post.
Maybe I should change it. These are scary stories.
I wonder sometimes when newbies pm me for LLMD info if they are really sick or just looking to make trouble. How do we know?
I wonder, but at the same time I choose not to worry, not to live a paranoid life. That would just be the death of me.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
If you're not a vocal advocate and don't rock the boat/stir the pot -- the leaving your city/state is fine. Unless you use the same username at multiple sites, then it can be slightly risky if you have insurance. If you pay out of pocket, don't worry.
-------------------- 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 i cant believe some of these stories. esp about peoples children being messed with.
missing-thanks for the complement. sorry you have to worry about your job like that. im sure you have enough to worry about without adding to that. i guess if i was in your situation and i lived in luxemburg or aruba i would just put europe or caribbean island. maybe that would be too much too.
i dont blame people for being over cautious when some bad things like those have happened. better safe than sorry. however i still dont believe if you dont have your name on here and you just put your state or region of the country that people can track you down. ive been wrong before tho.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Someone here is from Mars? Wow! I must have missed it!
Maybe we could get together on the next full moon?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As Kansas City could be KCMO or KCKS, Search at Google:
JunkYardWily, Kansas
JunkYardWily, Missouri
================
While not much comes up, there appear to be links that you posted elsewhere (as well as some other folks using that name with the same and different spelling).
Remember that everyone here is not just a lyme patient. Also, remember that just about anything you post anywhere can be on the web for, like, forever.
My state runs out doctors who treat lyme. So, on the off chance that I say too much, I don't want anyone harassed.
Also, if I happen to say I'm going out for the weekend or that I have this medicine or that machine, I don't want that to be seen by thieves that sour the web looking for opportunities.
There are many reasons. Our personal safety, our career changes, insurance policies, etc.
Yes, I agree, when I post a reply to someone it really does help sometimes if I can see where they live as I may have some specifics for that area. But, if location is a concern for any reason, I understand.
For every sincere person at every site, there are many more nefarious onlookers.
Often all they need is an email and a password. My guess is that many here post their private email addresses right on their profile page. And, I'd also bet that some use the same word as a password as can be found somewhere in their profile.
That's all it takes to get into bank accounts, etc. We are light years behind knowing how to protect our privacy on the web.
For those who are parents, there is much more at stake. MUCH more. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
quote:Originally posted by Tincup: Someone here is from Mars? Wow! I must have missed it!
Maybe we could get together on the next full moon?
Thanks for the laugh!
-------------------- 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. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Actually Keebler, a lot comes up if you're crafty. Use your head for a minute. In his profile it says he's a small business owner. He likes poker, sports, work, road trips, watching tv, and drinking. He likes Road trips, so we can presume he also likes cars. So we can profile him. and make a presumption that we're dealing with a "Good ole' boy." A higher than average masculine male who is likely in his late 30's to early 40's. His username is "Yunk Yard Willie." who we know for a fact lives in Kansas City. That means that if he lives there, then he likely works in Kansas City too. What type of "job" is an extremely masculine male fit for who likes cars and connects to the info we already have? Are you getting this yet? Junk Yard. So, we presume the Junk Yard is also in Kansas City.
The yard may or may not be named after the owner, so we simply go to the business listings and find out the name of each owner of all the junk Yards in KC MO. Fortunately, we find one single Junk Yard Title that actually has a variation of the owners name as part of it, Will.
Upon seeing if my theory is correct, I realized that William and Will are quite common names, but being a "Good o'l boy, a blue blood American male, the name Willie is usually spelled Willy. Upon investigation, I find no one matching Willy. Therefore, I investigate Willie instead. Maybe a yard will matche the name Willie. So I find there is one yard with the name "Little Will's Auto Salvage. I figure, what the hell, none of the other certificates have William, Will, or Willy on them. He's likely using a variation, and there it was. Only one could match. The owners real name on the certification is Willie, Big surprise, right?
In the end, I found an entire array of information matching the profile perfectly. I found a specific person, business location of the Junk Yard as well as the owners Home Address. All of this, just from your "minimal" profile information. Now, if I wanted, I could take this information (that I haven't posted) and get your SSI number, your credit card numbers, run credit checks, and even find out who all your family members are, how much gross income you make. I could find out every single thing about your life. There is no privacy, assuming I found the right person.
Do you see how disturbing this is? Maybe it's a coincidence that this info matches, but being paranoid is wise, because the insurance companies and IDSA have people trained to do exactly what I just did, and they don't presume much, they usually have a lot more information to go on then I did.
Obviously I won't post more private info. I could be wrong, but trust me, if these bastards want to find you, they will. If you're wondering how long it takes to do this: I did this in under 2 minutes.
P.S. I'll delete this immediately after the discussion ends, or if Junk Yard confirms it's correct via PM or here.
-------------------- 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
im sorry but i laughed so hard during your post mettalic blue but your point is well taken and i understand where you were going with it. also im sure some of that info would apply to others people profiles and posts.
for the record i dont own a junkyard. lol. i stole the name from a prank phone call cd. its rude and raunchy but i laughed a lot. im younger than your guess and i hate cars! they are such a pain in the butt. im not sure if im that masculine or fit, my llmd has me on testosterone so that cant be a very good sign.
as for those that want to get financial info on me that could be done so easy as i use my cc on the internet weekly. luckily for me my bank returns any money fraudulently taken out of my account, though its a pain in the butt. for those who want to otherwise do me harm i say fock you and bring it on. im not too sick to come back at you. if i had a wife and kids and someone did something like the things ive read about to them i may just kill them. wait a minute disregard that last part .
i understand people cant do things that way and have to protect themselves. your points are slowly changing my mind, and thats hard to do.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Good, I'm so glad I'm wrong! I was debating whether it was right to even post the limited info, just in-case it was right!
Well anyway, just becareful, these people don't joke around. The more vocal you are against the IDSA or in protecting LLMD's -- the more likely they are to monitor you or come after you.
-------------------- 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.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I got a good scare a long time back,,,,on another site like this,,a chat site.
Never gave my name, phone number or even town I lived. Did give state but its a big state.(and NOT the state of confussion either)
my phone rings from some guy that tracked me down,,,at that time and prob still,,,a phone number got you a map to my front door.
I have NO idea who this knothead really was,,but he was sure he could be here in 2 days to start work for me???I wasnt looking for hired help.
He was very insistant and demanding and rattled my confidence.
Another time a guy from Texas or New Mexico basicly did same thing with NO info to go on. Knew more about me than I did.
Its scary,,,they have ways,,,dont ask me how or why.
I freely share where I am from etc. from those I know here,,,
used to get tremendous amount of PMs from strange people I didnt know. I stopped responding and they quit coming
some were questionable at best,,,but how do you sort legitimate lurker who just read and dont post,,,,,and trolls????????
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Also remember that while a few here who share their personal email addresses are very fine people and totally above board - if a stranger asks you to email them, once you do, they can have access to all kinds of your private information just from your email address.
I've even very careful which friends get my emails as some send out bunches of what I call "volley" emails to all their friends and everyone can see everyone else's email address - and they often just take over the long list when they want to promote or share and then who knows where that goes. Often, our names are right there in our email address. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
quote:Originally posted by 17hens: I wonder sometimes when newbies pm me for LLMD info if they are really sick or just looking to make trouble. How do we know?
Can anyone answer my question? I've had a number of people pm me for llmd info - looking for llmd, husband very ill, etc.
I check out their posts and see they've posted on "doctor" but that's it.
I answer them, trying to help of course, but should I? Aren't we supposed to?
Or should we just direct them to support group info link?
The last thing I want to do is bring any trouble to my LLMD.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
sorry to say but its easy to find out drs who are practicing llmds. i knew of three in my area before i ever came on here.
as far as that stalker is concerned don if they were able to find you with you only putting the state on your bio then they obviously did it through other channels.
i promise i will give anyone who PM's me my address $50. i swear i will. he1l my parents done even know where i live. (boy i hope no wins it or im going to be a little freaked out)
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I wouldn't make that bet. A moderator has access to your IP and with an IP I can find almost anyone.
-------------------- 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.
quote:Originally posted by Tincup: Someone here is from Mars? Wow! I must have missed it!
Maybe we could get together on the next full moon?
Someone here is from Mars? Gosh, didn't know Lyme had been found on other planets - don't think there's too many LLMDs or support groups there - best if they find their way to Planet Earth...
Btw, I've posted where I am, and have done alright - And I can see the moon from here, and Mars once in awhile.
[ 12-15-2010, 07:22 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
when I sign up for anything I am not SURE of I use a slightly different name.EVERY site says we dont share or sell info.
PHOOEY!!! they ALL do no matter what they are doing cause spam rolls in with the wrong name.
I want to keep track of those sites sometime and which name I used and give them an earful.
dont know if its illegal on there part if they SAY in writting they dont and they do it anyway,,,
anyone else know if they have broken any laws by doing that???
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- A site may not be sharing personal details but they can be hacked.
I've had my debit card used to buy plane tickets in Africa. And I am housebound. Even my bank could not trace HOW the thieves got my card number. Often, they just guess and run a bunch of numbers. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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