Liz28,
Would you email me?
I am very interested in your treatment program. I started Zhang's protocol last week.

I'm pretty innocent when it comes to the wiles of people collecting email addresses, so it's hard to say whether someone would prey on Lymenet that way. My gut feeling is that people who troll the net have more sophisticated ways of getting information than bothering people individually, but again, I'm pretty naive about this stuff.

I, unfortunately, do have a computer background and still did not believe things could happen by posting email addresses on public sites, mine was up here for atleast a year - until virus emails started coming in. And yes people do prey on lymenet and any other public support board to get email addresses for all kinds of reasons as sad as it might be.

I have always tried to help people find llmd's and things like that until 'older' and 'wiser' members here explained why there are people 'out there' that are up to no good.

And now when someone emails myself and another member (the posts were not ours - that is a big point and question, why pick us?) it is a bit unsettling and makes me wonder who this lymenet lurker is.

If nobody else is alarmed by this or has gotten any emails from this person then it might answer some questions.

please dont get the impression that I dont want to help others or understand their need to reach out - that wasnt the part of this that 'put alarm bells' in our heads. Crimeoflyme has been moderator here she knows when something is not right - and because of this she asked the question. I wanted to make sure everyone was aware of it.

Once again, i hope this is clearer.

I get lots of virus-ladden emails as a result of being on this and other newsgroups.

I also receive numerous suspicious emails from individuals requesting help as a result of being here. Some are obviously valid and they receive complete answers. Others appear "off" or "wrong" and don't receive much information from me.

Thanks for expressing the words of wisdom. I agree. I too have noticed how my perspective on things is not reliable and need to give myself some time out before responding.

It reminds me of when I was over tired when I was healthy. I didn't like anyone.

I then would get my sleep and low and behold, people started being OK again and less annoying.

We are in a constant state of being over tired.

I don't think my perception is off, at least not on the part of A.) wondering who sent me weird emails and B.) asking them publicly to post on lymenet.

I don't think Im herxing or that Im having a bad day. I simply got a strange email and did email that person back to ask them who they are, and never received a response.

Well, until today- got another weird email from someone else I dont know LOL

I hardly doubt my intention was to say "oh look, I post on a public forum and there is my email address, so DONT email me".

I was simply pointing out that strange emails with not a whim of whom that person is, or even what the emails MEANS was strange.

My email also had nothing to do with lyme but was a reply to a post that I posted under Kams post called "one word". Sorry if I found that strange to have my post answered ( and not told so) via email.

And again, gladly- I think this person should post here.

I would also find one of those emails weird.
And you two are probably wondering if anyone else has gotten strange emails like that or if anyone knows anything about this person, etc.

You must have posted something interesting that made the person(s) email you individually. That is the only thing I can think of.

I would find it very strange if someone emailed me and they were not a member of Lymenet.

The letter the person wrote was quite interesting, however was so very simplistic. I think most of us here would agree that it is not that easy to qualify for any type of assistance. Kam responded to that quite well.

I have swallowed all of my pride when it comes to asking for help and applying for govt benefits only to be told I don't qualify for whatever reason. So, if this person can point me in the right direction in obtaining help I wish they would post here with specifics.

As far as the reference to teaching those to fish...well I was a really good fisher and would be still if lyme had not reared it's ugly head. I participated in these programs for over twenty years as a donor in a moderately high tax bracket, so I think I have given my share, as I am sure the vast majority on this forum have. To insinuate anything different is an insult. But that may be just what this person wants is to ruffle feathers and cause a stir.

I don't think I am herxing, haven't cried at any commercials today anyway. I would question these emails if I were the recipient.

Cheryl

Often, when I reply asking who they are, I don't receive a reply, which confirms that something suspicious was going on.

Thanks to those who understand.

As far as virus' - the only reason my computer is still up and running and I know about the virus' is due to updates and software but I happen to have an ISP that still is having a slight problem.

As for me or COL having answered something interesting to those posts - looking at the posts I don't see why we would be chosen.

Anyway, by the way, I also haven't gotten a return email from this person.

Thanks again.

Cheryl,
I totally agree with you, I found it a degrading type email which - oddly even came to me since I know nothing about these programs (yet). So it couldnt have been in response to my post.

Well my email is off of lymenet permenantly - if someone needs help post to me and leave your email.

thanks to all that understand - and please 'anonymous lurker' join our board'.

The point that Liz made, about how the way things sound to the reader changes with various Lyme states - well, things can be a bit on or off for the writer too.

More than one Lymenet member has had a series of posts - especially when a newcomer - that just sounded waaay out there. There are many possible reasons for that, but intent is not usually one of them.

Why send you an email rather than post? Well, one reason might be because they're not a Lymenet member and therefore can't post. Now, you and I know how easy that is to remedy... but not everyone is at the top of their IQ curve all the time - right?
No, I'm not saying this is the reason you got the mail - that's just an example of an innocent possibility.

My point is: not everything unknown or unexplained is malevolent. And I think this case is really short on evidence of "bad".

I hope you know I'm not saying that to criticize your feeling about it - rather I'm trying to explain that there's another way to look at it - at this point.

Thank you all for your kind replies here, i can't speak for jodie but since nobody has said they also got the emails or has written us back we know whats going on.

I think I would find it a bit odd to be picked at random to receive an email from someone I don't know. Particularly the email sent to Jodie. I saw that post, and several people replied. So my question would have to be why send an email to Jodie alone? If I were in her shoes (or AK's), I would be a bit confused and wanting answers as well.

Hope you guys get the mystery solved! Good luck!

Thanks for your replies - glad you understood jodie and my question.

Geden - scary - I hope i'm never on the other end of your verbal abuse!!

thanks again for letting me know.

If someone wants to get hold of me, I will temporarily post my e-mail address in my profile and remove it.

(1) Message to Jodie: There was a post which asked people to describe Lyme in one word. That is what this message is. A list of possible one word descriptions of Lyme. My guess is that the sender clicked on the button which sends a message to the poster rather than to the board. If the person was new, they may not have realized that this was not what they were supposed to do.

(2) Message to Betsy: This message was a well-written, clearly thought out message about financial services available to the chronically ill. This person might not have wanted to join Lymenet for a number of reasons - perhaps they don't have Lyme but were just checking out the board for a friend. They may also be nervous about joining large boards for the very reason that some of you are made nervous by these messages. Whatever the reason, this person made an effort to help. They didn't ask anything of anyone, just offered valid information, suggesting that you might want to post it to Lymenet for the benefit of others. The message was likely sent to Betsy because at the time the poster wanted to write, it was the first message that had an email address to which he/she could respond. And/or it is very easy to spot that Betsy is an active and caring member of the board and would be willing to help in this way.

I understand the concern but don't think it is warranted here. If you sent messages to these people and did not receive replies, it is possible that they sent the messages from accounts that they rarely use (perhaps because they only use them for message boards and are not active) or because they are away from their computers for an extended period, perhaps on vacation or just living.

MOO, (my opinion only)
Suzanne

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When I'm old, I don't want them to say of me, "She's so charming." I want them to say, "Be careful, I think she's armed." -G. Stoddart

Tickedntx - thats a good point - and since I know you so well, I definitely will consider that without a doubt. I appreciate your perspective.

I really don't want to sound harsh to this 'emailer' but unfortunately I've had to learn to be weary of everything, totally out of character for me.

Lymenet is a special group of people and we welcome more all of the time, so please come join us.

I reminds me that nothing is private - all of what we say is public, and we can be 'accessed' at the click of a mouse. Just for the heck of it, I typed in my name at google, and old posts that I had put up on another board came up! Have you ever typed in your phone number at google? Your name, address, even a map to your house comes up - unless you remove your ph # from the list (I did)

I'm not saying this to start paranoia, but I think sometimes we forget in our quest to be helpful and supportive, that this is still a public place and can be accessed. People can learn more about us that we really want them to know. We can be solicited, hassled and spammed. Few of you know my first name. I'm not trying to be elusive, but I think it's a little bit of protection....if we use our real names, what's the point of screen names? I was hesitant to add an email but it is an addy that I only use for lymenet.

I have received emails from some of the members here. If I have suspicions as to their intentions, then I don't respond. For the most part, with the exception of maybe one or two, I have had very positive exchanges. I try to think that the person writing has only good intentions. Like the others, unfortunately, I do have perceptual problems and don't always read thing the right way. I can also misinterprete things.

Just a few thoughts on the subject...
cootiegirl

Some people simply forget their manners; others seem to be utterly clueless regarding contacting a stranger.

The creepiest unsolicited lyme mail I've received had a subject line that read "sulfur", the sender's name was just 2 letters, and the body of the e-mail read, "Where do you get your sulfur?" No intro, no sig.

Sulfur for what? Who are you and why do you ask? Are you part of a sting operation phishing for people who buy sulfur to make explosives?

The only reason I opened it at all is because I am on a metals list where we sometimes discuss sulfur metabolism, and I'd visited a homeopathic website recently and one of the remedies that came up for me was sulfur.

Turned out to be someone who had posted here a few times and posted more on another lyme site. I'll share here what I told her about what you need to do when contacting a stranger for the first time.

1) In the subject line say something like Hi Donna, it's Sue vG from lymenet with a ? re: sulfur

2) In the body, if you didn't introduce yourself in the subject line, do so immediately. Tell the person where you "know" them from and what prompted you to contact them.

3) If you're asking a question, make it as specific as possible. Don't just ask a question like "Can you tell me about Dr. X" because some of us could write term papers on our docs and don't have time. Ask the specific things you want to know, like does he take insurance, do you like the tx you're getting, is the office well run, etc. This will take the burden off the recipient to either try to read your mind or type their fingers off telling you everything they know.

Even though these lists and e-mail are fairly anonymous, that's no excuse to forget our manners....especially when we're asking someone for something.

Cheers,