I Understand That "tailz" Has Been Banned From This Site.

[jerseyangel]

Jeanna--

That's the thing--from the perspective of a newly diagnosed person, who has just been told by their doctor to "begin the gluten-free diet and see me in 6 months"--being told that their "real" problem is Lyme (or anything else, for that matter) is confusing at best.

I think this board has many, many people who are well-spoken, articulate, and well educated on gluten intolerance and Celiac. The in-depth discussions are very interesting to me, and I appreciate them.

I just think it's as important to be sensitive to those who are new to all of this.

[CarlaB]

Well, I'm a very intolerant, non-compassionate person and I find a lot of people on this board annoying.

Jeanna

Here's my laugh for the day!!!!

I love your honesty!

[Rachel--24]

I'm pretty sure Tailz created another account because she believed she had already been banned due to not being able to log on. She pm'd me under the new name, told me she was tailz and then proceeded to explain to me why she believes I have Lymes Disease.

I'm all for learning about stuff but she was very pushy. I've actually been discussing Lyme on another thread because just this past Monday my doctor was suspecting it and he ordered the test....I'm now awaiting results. Tailz wasnt aware of this...she basically said (in her lengthy pm) that she could tell from my avatar and how thin I am...that I reminded her of herself when she was real sick and that I need to get tested before I get worse.

First off....I'm at normal weight in my avatar. Second, I'm a little scared right now as I await my test results and her pm did nothing but intensify that fear. I wondered how many people was she pm'ing with this kind of message?? I've been on the board awhile now but someone new could be really put off by something like that.

I dont agree that Lyme causes Celiac or that all Celiacs have Lyme....thats seems a little extreme to me. I do believe it can be a "trigger" just as any kind of infection or stress on the body can be a trigger for Celiac. So IMO yes, there may be some people here with undiagnosed Lyme....I could even be one of them.

She is obviously very passionate about this but I'm not sure that she was expressing herself appropriately on this board. She *was* being deceitful when she created a new account and continued on with her "agenda" and although I did not report her... I do support Scott in his decision.

Alot of us discuss different "theories" and other conditions which may or may not be linked to Celiac but to shove it down peoples throats in every post and on various threads....that seems a bit extreme.

[AndreaB]

Rachel,

Well said.

I even bookmarked a page of questions thay Breezy posted on a newbies thread. I don't believe I have lyme, although the thread she posted on, the person is an animal massage therapist or something like that. Sounded very interesting. She also has a horse and I commented on how I loved horses etc. Breezy jumped in with "we all have so much in common......lyme disease". That's a paraphrase btw.

[tiredofdoctors]

It did just dawn on me . . . . she had me scared out of my wits, as well! I looked at my husband the other night, and said "Have I been tested for Lyme disease?" He said, "Multiple times. Why?" I told him because this girl had written this post that scared me to death. . . . Had completely forgotten about that. And I've been diagnosed with Gluten Intolerance for a year and a half! I KNOW what's wrong with me.

[gfp]

Now look, Steve, how would you like it if we'd discuss what you do and don't do, and what we don't like about you on the board?

Erm well presumably you do that in the mod forum?

but that is not whay I am saying.... what I'm saying is this board has a set of 3 rules that are non negotiable and if you ask for clarification of these rules then Scott refuses to discuss them other than pm ...

Secondly most or many of the mods are breaking the rules... it is one rule for some people and one rule for others.

This is more of a democracy than you're aware of.

There can be no democracy without open discussion and open discussion is not allowed.

Do you seriously think that we should be doing all that out in the open, with ALL the members here being able to add their five cents worth? We'd have a madhouse, and people would get hurt left and right, and soon everybody would be leaving, and there would be no board left!

You are mixing two seperate issues. An issue with an individual member is different to discussing a policy or rule which is seletively applied.

So, having said that, this is the last post I am making in this thread. Because, honestly, we have been discussing poor Carol (tailz) enough, likely embarassing her to death if she is reading this.

Well it might have helped to have a public rule about banning.... most boards have a rule which is public that if a mod pm's you after discussion wirth other mods and you refuse to accept doing anything wrong then a process occurs. That process is usually documented and open and can be referred to....

Taliz was obviously breaking rule #3 but since most of the mods are specifically breaking rule #2 how should this be interpreted?

In a democracy the policy and rules are open they are hidden or at least the application of them. That is fine but you have to accept that the policy is hidden.

As I said in my post Scott provides the forum as an extra to his commerical web site, if he wants to set the rules it's up to him, its not like you have to pay to be a member so people are either happy or not with the policy but pretending policy is open is not correct.

[Fiddle-Faddle]

Well, I thought tailZ was definitely a litttle too pushy about the Lyme thing--but then again, she did NOT tell me she thinks that I have it. As someone else said, if she'd only started a thread under the "Celiac and Related Disorders" heading, that would have avoided nearly all of the problems.

But should she have been banned because she either didn't know better or just got carried away?

Ursula, you have commented how much better you are at writing than at speaking. Should tailZ be punished because she lacks your writing abilities or your ability to keep things pretty much in perspective when writing about something you feel passionately about?

Aren't many of us just as convinced and passionate about the gluten-free diet as tailZ is about Lyme? Should we act like the typical American MD towards tailZ when it's very likely she's on to something, even though not all of us actually have Lyme?

I still think Scott was seriously mistaken in banning her. Instead of warning her in the first place, he should have suggested that she post her Lyme info separately under the "Celiac and Related Disorders" heading. Heck, I think he should have THANKED her for bringing it to our attention, even if most of us aren't suffering from Lyme. What if her post gets ONE person correctly diagnosed? Wouldn't it be worth it? Or what if many of us choose to at least try to rule out Lyme? Isn't it always good to have more info rather than less?

Yes, Scott has the right to run his board the way he wants. But I'm really disappointed in him for this.

Oh--she pm-ed me too, and explained that she had trouble posting under tailZ. I don't believe she had been banned at that point--I tried to pm her right back using tailZ, and as far as I could tell, she had not yet been cancelled--from my end, it seemed to go through successfully.

While she didn't announce to everyone, "Hey I'm tailZ jsut posting as breeZy"--heck, wasn't it obvious, not by the contet, but by the spelling of the name (capital Z at the end)? If she'd been trying to be sneaky, seems to me she would have chosen a totally different name and tried a totally different writing style.

And as far as the proselytizing thing--for Heaven's sake, if I didn't feel like she was shoving religion down my throat, isn't that an indication that at least, that part is debatable? I mean, come on, folks, I tend to be more sensitive than most of you to that sort of thing, don't I?

[Guest Robbin]

Amen, Fiddle -Faddle-I agree wholeheartedly with what you have said. I felt sorry for her and really thought she was just searching for answers the way many of us are. I felt she was trying to connect and reach out, but came across as a little pushy. I took that as just her style and not as an offense. I am afraid now that many people will be afraid to share more of their experiences and that is a pity. The shared experiences have helped me tremendously and I learn from others' trial and error what MIGHT work for me too. As has been said before, discovering this forum and eliminating gluten wasn't something that would normally have occured to many of us. It is through sharing that we sometimes get the answers we need. Hey, even sharing that your faith helps you can be beneficial for someone else who is hurting.

[Guest Mtndog]

Secondly most or many of the mods are breaking the rules... it is one rule for some people and one rule for others.

There can be no democracy without open discussion and open discussion is not allowed.

Hey gfp- I'm confused as to what you mean about the mods breaking #2. I'm a mod and people do take to tend moderation pretty seriously. We are not exempt from being banned either.

Basically- the way you get banned is a three strikes and you're out. So, let's say I have been reported by another member for being rude. Scott or another moderator would decide to warn me with an explanation as to why I'm being warned. Then two more times and I'm banned. I think that's pretty fair.

You'd be surprised by how little mods "talk" about other people in PM's. More or less we just ru7n questions by each other or Scott. And it is a democracy in that ANYONE on the board can volunteer to moderate.

I'm not saying ALL the decisions made on this board are perfectly fair (are they anywhere?) just that I think there's less secrecy and mods and scott really do take it to heart as we know this board is a great resource. The other thing is that if you are banned, you can still READ all you want. You just can't post.

Hope this makes sense. I have a lot of respect for what you've written in this and other posts.

Lynne- I SEE you!

[tiredofdoctors]

Gotta go with GFP on this one . . . this forum is an advertisement arena for Scott. That is fine -- it's his site. However, it is NOT a democracy. The idea of "open discussion" is not supported, and yes, if the moderators are specifically bad-mouthing one individual behind their backs . . .. well, that IS breaking one of the rules --just not publicly.

Then again, I've had a couple of bad experiences, but missed you guys enough to say what the He** and come back . . . .

[Jestgar]

The shared experiences have helped me tremendously and I learn from others' trial and error what MIGHT work for me too.

Sharing experiences is different from stating that all illness is man made, that genetics is not a true science, that all illness stems from an infection, that Lyme disease is probably the infection that makes everyone think they have Celiac disease.

[rinne]

Thank you Fiddle-Faddle and Robbin you have each so eloquently expressed what I am feeling that I have nothing to add to it except Tailz please come visit Daily Strength if you are reading this.

[elye]

I didn't read enough of Tailz's posts to make a judment on her conduct (I clearly remember her thread on colloidial silver, and there she just seemed like an unwell soul searching for some answers). Her obsession with Lyme disease is fascinating, and as I've made my way through this thread I have had a moment of pause...I am going to be a lot more careful now of how often I jump into conversations with, "hey! That sounds like celiac you've got!" I just realized that I am probably doing this and monopolizing discussions much more often than I should be!

[Rusla]

I guess I have been missing all the good stuff on here again...thank goodness. Had my share of stick poking in the past.

Let's face it human nature is that, not everyone one will agree with everyone else on any given subject all the time.

Rusla

[Rachel--24]

I have to say..."sharing experiences" is one thing and thats alot of what this board is about. We can all learn from the experiences of others here and I for one, love to learn. I'm very intereseted in Lyme and its connection to Celiac....if there is one. I was interested in what Tailz had to say but I feel she was going way overboard. Its one thing to put the info out there where others can possibly be helped by it. Its entirely different to start pm'ing people...telling them that they *have* Lyme Disease or to jump into threads and suggest we all have this ....scaring people.

Providing some useful information may have been more helpful to myself and others. I probably would have had a greater appreciation for a pm that had some specific info about Lyme Disease rather than one which basically made me feel that if I dont do something about Lyme Disease right now I'll be very sorry. I dont feel she can make that kind of diagnosis just by looking at my avatar. I'm working very hard to get answers for my lingering symptoms. I've been tested for Lyme and right now all I can do is wait. I welcome any advice I can get but her approach was all wrong.

She *did* create her new account thinking she had been banned. She said that Scott was banning her because she was going to put him out of business by curing all of us of Celiac...which is really Lyme Disease. I dont think its the best idea for someone to pm a moderator and badmouth the admin or the site itself. I happen to have respect for what Scott does here and without this site we wouldnt have the support that we have here.

I do not think that Tailz is a bad person....not even close. I can relate to what shes going through and I have sympathy for her. However, I think if someone wants to take part in a message board they should try to conduct themselves in a less disruptive way. I'm sure she could have helped some people if she went about things diferently.

I dont think people will be afraid to share ideas because of this incident. My understanding is that she was banned for reasons that went beyond simply "sharing ideas". If we were to get banned for that I would have been gone a long time ago.

[elye]

Man, she's starting to sound a little scary...Believing she has a "mission" to cure us all, accusing Scott of feeling threatened by her "words of truth"...

[DingoGirl]

Good points from all you wise ones!

This whole thing reminds me of a Celiac acquaintance at my church, whom I met just once. He sends the HUGEST and longest group emails to everyone, including me, about Celiac. There is SO much science, conjecture, opinion, and fact in these emails, and in his conversations, that I absolutely KNOW he is doing the opposite of what he hopes to do...inform and alert people to Celiac, but is instead turning people off. It was an eye-opening experience for ME, because I think I was tending to do a bit of the same thing myself. sometimes I wonder if I should gently tell him.....but it's hard! People tend not to listen when you vehemently get on your soapbox about something obscure that doesn't involve them.....even if it does.

Wonder if *I* have Lyme? Once hosted a tick for 48 hours and pulled it out of my back myself.....left a pincer in, the dermatologist had to carve it out.....gross......

(just being silly here, I have no achiness in my joints, never have)

[Guest nini]

wow...

hmmm she did try to tell me that both I and my daughter need to be tested for Lyme...um, I've already been tested and my daughter was sick from BIRTH... doubt seriously it was ever Lyme!

It's Scott's board and he can ban anyone he sees fit to for his own reasons, but I'm sure he didn't do it lightly. Thanks Scott for all your hard work.

[Lymetoo]

Thank you Fiddle-Faddle and Robbin you have each so eloquently expressed what I am feeling that I have nothing to add to it.........

Me too.

I don't think tailz was given three strikes, that's for sure.

I do understand what some of you said about talking too much about celiac to others. I now have TWO main health issues I want to tell others about! So it's doubly hard to keep my mouth shut!!

Some Lyme patients are obsessive complulsive and impulsive as well. Sound familiar??

Dingo Girl...not all lyme patients have pain in their joints. Many have "neuro Lyme"....some have both.

[tiredofdoctors]

I think that I'm kind of "overly cautious" about Lyme disease because of an experience I had with one of my patients. I had seen her a week prior, and she was going on vacation -- camping with her husband and kids. She came in for her next appointment and I asked her how she was doing. She said that she had been doing the stretches, the self-mobilizations, but that her joints -- throughout her body -- were kind of "sore". She also said she thought she had been running a fever -- she thought she had the flu, maybe. I went to put electrodes on her low back (closer to her butt cheeks, really), and I saw what I KNEW was a tick -- with a bullseye around it, and the blistery rash, as well.

I tried to act really cool, I went back to my secretary had her pull up deer ticks and Lyme . . . . walked back into the room, asked her if she had a mole on her very low back. She said no, of course. So, I said, "Well, I think we may have a problem." Went on to tell her that she had a tick -- it was a deer tick, but it was HUGE -- so she must have gotten it the first day or so of her trip -- but she also had a bullseye and a blistering rash. She FREAKED OUT. She told me to get the tick off immediately!! Since I'm licensed to do scalpel debridement, and fundamentally, a bite with an inflammatory response around it is a wound, I was O.K. to remove it. I then had to find a primary care doctor for her -- and get her in that day. She DID have Lyme disease.

I'm not one to say that everything that happens to people is a result of Lyme -- in fact, our veterinarian wanted me tested for three different other types of tick-borne diseases because of our area. I am, though, pretty "aware" of Lyme disease. Clearly, however, it DOES NOT cause Celiac. Through all my research, I have yet to see a connection or causational relationship that Lyme disease causes the development of Celiac.

I'm sorry for what happened to that woman . . . it appears that she was on a "mission" to cure the world through the diagnosis and treatment of Lyme disease. It's unfortunate that she went about it, though, in the manner that she did.

[gfp]

wow...

hmmm she did try to tell me that both I and my daughter need to be tested for Lyme...um, I've already been tested and my daughter was sick from BIRTH... doubt seriously it was ever Lyme!

I think the sad part is you could have gone and had tests including the recommended one and I don't get the impression she would have let it go.

Personally I'm not ready to exclude Lymes disease as a possible trigger for some celiacs...we don't know enough IMHO... but I am ready to say that it can't possibly cause ALL cases because of what you say and also many celiacs live in Lyme free areas they have never left!

It's Scott's board and he can ban anyone he sees fit to for his own reasons, but I'm sure he didn't do it lightly. Thanks Scott for all your hard work.

I agree completely... as I said Scott hosts the forum as an addition to celaic.com, he doesn't NEED to and he doesn't CHARGE for it. If people are not happy with the way he runs it they are free to leave and get a 100% money back guarantee.

That being said I don't think its healthy having 'hidden rules' and guidelines ....and that confusion will be a part of this.

I don't think tailz was given three strikes, that's for sure.

Regardless of anything else she repeatedly broke rule #3. (way more than 3 times)

What I don't agree with is that this should have been posted and the rule quoted publically by a mod.

If that had happened then I doubt we would have decended into this situation.

I dunno perhaps that's like charging Al Capone with mail fraud? but I really think that the best way to apply rules is to state the rule in a gentle way and do so publically and that way others are not left in the dark....

It stops them pm'ing others with selective quotes etc. and I really doubt that anyone would have had a problem with talking about Lyme's in a related diseases thread so long as people don't keep saying "All celaic is caused by Lymes".

[debmidge]

Lyme disease is scary ...knew someone who had it unknowingly at first; after diagnosis she had to go on disability for a year; on heavy anti biotics and it pretty much kept her in bed most of day.

Perhaps in Tailz's case she should have a shunning for let's say 6 mos and allowed to return on a "trial" basis.

What disturbed me most about the Tailz case is that according to other posters she re-quoted others but changed their words around or cut out sentences and/or amended their words in the re-quote to be comprehended some way differently than the original intent. This bothers me more than "religion" discussion and more than "silver as a medicine" discussion and more than her opening up a second screen name.

[gfp]

Lyme disease is scary ...knew someone who had it unknowingly at first; after diagnosis she had to go on disability for a year; on heavy anti biotics and it pretty much kept her in bed most of day.

Perhaps in Tailz's case she should have a shunning for let's say 6 mos and allowed to return on a "trial" basis.

What disturbed me most about the Tailz case is that according to other posters she re-quoted others but changed their words around or cut out sentences and/or amended their words in the re-quote to be comprehended some way differently than the original intent. This bothers me more than "religion" discussion and more than "silver as a medicine" discussion and more than her opening up a second screen name.

I agree completely ... indeed if she is diagnosed again as not having lymes i really worry....

I equally agree that her deliberate quoting out of context was #1.... and this is the point the mods seem to have completely missed! They were blaming Gina for trying to say "that's not what I said"....

The problem is they read what she said Gina said...... and Yes she did say those words but Taliz took them and cut out parts to make them say something completely different. Lets take a non religious quote

I submit that an individual who breaks a law that conscience tells him is unjust, and who willingly accepts the penalty of imprisonment in order to arouse the conscience of the community over its injustice, is in reality expressing the highest respect for the law.

is not the same as

I submit that an individual who breaks a law is in reality expressing the highest respect for the law.

or

Returning violence for violence multiplies violence, adding deeper darkness to a night already devoid of stars... Hate cannot drive out hate: only love can do that.

Is not "I believe in"+"Returning violence for violence" + "We hold these truths to be self-evident, that all men are created equal."

Yes MLK Jnr said all these things but in different places and different times and this is NOT what he said!

[Fiddle-Faddle]

What disturbed me most about the Tailz case is that according to other posters she re-quoted others but changed their words around or cut out sentences and/or amended their words in the re-quote to be comprehended some way differently than the original intent.

Gina was the one accusing her of that--but I noticed she did not then post the accurate post of what had been misquoted. So I don't know if there was deliberate misqutoing or honest misunderstanding of intent.

I think it's far more disturbing that Scott deleted MY posts defending tailZ and asking Gina if she was okay. Don't you think there is something wrong with that? I didn't write anything incorrect, illegal, irrational, or nasty. I was also not notified in any way that my posts were deleted.

[eKatherine]

Gina was the one accusing her of that--but I noticed she did not then post the accurate post of what had been misquoted. So I don't know if there was deliberate misqutoing or honest misunderstanding of intent.

I think it's far more disturbing that Scott deleted MY posts defending tailZ and asking Gina if she was okay. Don't you think there is something wrong with that? I didn't write anything incorrect, illegal, irrational, or nasty. I was also not notified in any way that my posts were deleted.

Why would Gina need to repost? Her original post was still there, was it not?

I read that post of yours, and my recollection was that by the way you wrote it you were asking her if she was mentally disturbed.