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


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#1 Lymetoo

 
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Posted 13 September 2006 - 03:19 PM

I can't believe that "tailz" has been banned. I'm not really sure WHY...??
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Negative biopsy for celiac 1980
Fibromyalgia 1980
IBS 1980
Interstitial Cystitis 1992
Systemic yeast
Diagnosed w/ Chronic Lyme Disease 2000
Diagnosed w/ Chronic babesia 2000
Tachycardia 2001
Asthma 2005
Have had Lyme and babesia for
about 48 yrs.

Began gluten-free July 19 '06
Native TEXAN living in Missouri

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#2 debmidge

 
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Posted 13 September 2006 - 04:22 PM

really!!? for what? I hope not for asking questions about eating meat in another thread.
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Husband has Celiac Disease and
Husband misdiagnosed for 27 yrs -
The misdiagnosis was: IBS or colitis
Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,
most prestigious medical groups in northern NJ which constantly advertises themselves as
being the "best." This GI told him it was "all in his head."
Serious Depressive state ensued
Finally Diagnosed with celiac disease in 2003
Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.
Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle
Developed neuropathy in 2005
Now has lymphadema 2006
It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

#3 Fiddle-Faddle

 
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Posted 13 September 2006 - 06:16 PM

I just tried to pm her, and her mailbox is either full or disabled.

She and Gina got into a disagreement about traditional vs. non-traditional medicine. They both had valid points of view, but expressed themselves quite differently. IMHO, Gina was getting quite abusive, but I thought tailZ was just defending herself.

Very strange.
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#4 Guest_~jules~_*

 
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Posted 13 September 2006 - 07:50 PM

I just tried to pm her, and her mailbox is either full or disabled.

She and Gina got into a disagreement about traditional vs. non-traditional medicine. They both had valid points of view, but expressed themselves quite differently. IMHO, Gina was getting quite abusive, but I thought tailZ was just defending herself.

Very strange.

I'm just curious as to who's call it is to "ban" a person from this site. Isn't this supposed to be a support group, seems to me banning someone over a debate isn't very supportive at all. Just going by what has been said in this thread of course, I really have no idea what happened, but if thats the reason why, that just tells me we aren't allowed to voice our opinion here. Not cool.....
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#5 tiredofdoctors!!!

 
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Posted 13 September 2006 - 08:15 PM

Just need to know . . . . this forum is quite political, in a sense. Some get by with a whole host of indiscretions, while others are immediately called to the carpet for minor indiscretions. Don't understand it myself, didn't see the thread that caused all the trouble, but have had my share of "beratement" from admin for reporting incorrectly. Certainly let me know that I was a nobody . . . . . .
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Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

#6 Ursa Major

 
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Posted 13 September 2006 - 08:19 PM

Tailz wasn't banned for anything she posted exactly. After she was asked to stop jumping into every thread were people were asking for advice on symptoms, telling them to find a doctor to diagnose Lyme disease, and kept doing that, Scott warned her (not banned her, by any means).

Nobody said that she couldn't put out that information, just that she needed to stop trying to shove it down people's throats, as well as bringing God into every post (since this isn't a Christian site, that was reasonable as well).

Instead of replying to my very nice, long PM (that Scott had asked me to send to her), she opened another account under the username 'BreeZy', and kept doing the same thing. Somebody complained that BreeZy was jumping into all the threads (the trigger thread was one of them), shoving Lyme disease down people's throats today.

Scott checked the IP addresses for tailz and BreeZy, and they matched, meaning, it was the same person.

As a result 'both' got banned, and BreeZy's posts were deleted. End of story.

And I made Scott aware of Gina's abusive posts.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#7 Lymetoo

 
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Posted 13 September 2006 - 08:26 PM

And I made Scott aware of Gina's abusive posts.

Good! I'm glad.

I told tailz that she shouldn't get so carried away with the Lyme stuff. People don't usually want to hear it. I'm "old" and seasoned and know not to do that. I figure if anyone wants to know more about Lyme, they'll ask....though I won't hesitate to say something if the need arises.

I have her email if anyone wants to contact her.

Gayle
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Negative biopsy for celiac 1980
Fibromyalgia 1980
IBS 1980
Interstitial Cystitis 1992
Systemic yeast
Diagnosed w/ Chronic Lyme Disease 2000
Diagnosed w/ Chronic babesia 2000
Tachycardia 2001
Asthma 2005
Have had Lyme and babesia for
about 48 yrs.

Began gluten-free July 19 '06
Native TEXAN living in Missouri

#8 Guest_~jules~_*

 
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Posted 13 September 2006 - 08:31 PM

Tailz wasn't banned for anything she posted exactly. After she was asked to stop jumping into every thread were people were asking for advice on symptoms, telling them to find a doctor to diagnose Lyme disease, and kept doing that, Scott warned her (not banned her, by any means).

Nobody said that she couldn't put out that information, just that she needed to stop trying to shove it down people's throats, as well as bringing God into every post (since this isn't a Christian site, that was reasonable as well).

Instead of replying to my very nice, long PM (that Scott had asked me to send to her), she opened another account under the username 'BreeZy', and kept doing the same thing. Somebody complained that BreeZy was jumping into all the threads (the trigger thread was one of them), shoving Lyme disease down people's throats today.

Scott checked the IP addresses for tailz and BreeZy, and they matched, meaning, it was the same person.

As a result 'both' got banned, and BreeZy's posts were deleted. End of story.

And I made Scott aware of Gina's abusive posts.

Well thats good to know really I was not impressed about the rumors surrounding it, kinda makes you wonder if you should open your mouth, keep it shut, or just find another group. I didn't catch any of her posts, but I do know I don't think this is a place to harrass people with your beliefs, or theories.
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#9 Ursa Major

 
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Posted 13 September 2006 - 08:34 PM

Good! I'm glad.

I told tailz that she shouldn't get so carried away with the Lyme stuff. People don't usually want to hear it. I'm "old" and seasoned and know not to do that. I figure if anyone wants to know more about Lyme, they'll ask....though I won't hesitate to say something if the need arises.

I have her email if anyone wants to contact her.

Gayle


Thanks, Gayle, for understanding. I bring up the lectins and salicylates, too, if I think that people might have those intolerances. But I don't go searching for posts where I think people 'need' to hear it, and post exclusively about it.

If only she would have started a post on Lyme Disease in the 'Related disorders' forum, put out all the info and the appropriate links, and linked to that when appropriate, it wouldn't have been a problem at all. I hate seeing people banned, too. Especially somebody desperate like her.

But opening a second account to push her agenda was clearly against the rules, and couldn't be tolerated.

Before you give out her e-mail, I think you should ask her in each case if it is okay. I wouldn't mind having it (of course, she has mine, I gave it to her when I PMd her, so she can get me if she wants to).
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#10 rinne

 
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Posted 13 September 2006 - 08:39 PM

This does not feel like a good situation, I am sorry to hear that she was banned, is it temporary or permanent or how does that work around here?

I really appreciate this board and that the focus of this board is Celiac disease yet because there are some us of who continue to be ill even though we go gluten free naturally we are going to continue to question what is wrong with us. I know that whether or not I have Lyme I am gluten free for life, even if someone told me I could eat it again I don't think I would.

I saw that Tailz/ Breezy was posting about Lyme on the board on a number of threads but as someone who is also looking at Lyme in the cases I saw her posting I thought the same thing. I really feel that it is out of her compassion that she is trying to reach as many people as possible with this information and I would hope that this is a board that supports people supporting eachother. If people feel she is being too enthusiastic wouldn't they just say. I suppose I was also assuming that to a large extent the board was self-moderating because I have only encountered respectful discourse. I missed the thread in question.

I hope she won't mind my saying this but I know that Breezy came because she had problems logging in under Tailz so she created a new identity. I also had problems for a period of time being able to post on the board and so I thought it was just some glitch in the system.

As Lymetoo's name suggests it is possible to have both, and thanks for starting this thread.
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A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#11 Ursa Major

 
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Posted 13 September 2006 - 08:57 PM

Rinne, if tailz had problems logging in under her original name, why didn't she let us know who she was, when she started posting under her new identity? Why didn't she approach Scott, asking him to fix the problem, or at least post under the "Board/Technical help" forum? The fact that in one post she called somebody older 'child', creating the image of somebody who was a lot older than herself, shows that she was trying to create another image and that she was also trying to make people believe that BreeZy and tailz were too different persons. That was obviously deceitful.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#12 2kids4me

 
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Posted 13 September 2006 - 09:04 PM

I didnt see many of the posts that became an issue. I have participated on other public forums and my understanding is that difficulties arise when a poster or the info in a post becomes offensive to some readers and they complain to the forum administrator. Up until the complaints come in. ....many threads continue on about many topics - often unrelated to the original post...but as far as the administrator can tell - it is not objectionable to the readers and the the thread has taken an interesting turn which is attracting many posts.
BUT if the administartor gets many complaints (ie more than one or two), he/she has to act. That may mean sending a cautionary email, banning someone if they get offensive or continue with a behavior after being told to "tone it down" ...or whatever term is used.

am I on the right track?

I have learned a lot from the forum - the best thing is finding commonality with this group...many have more than one condition and can relate to the frustrations of living with immune mediated conditions, finding doctors, baking bread so it doesnt collapse, figuring out what on earth to put in the kids' lunch box etc.

I think when one is consumed by a specific illness - it does a diservice to the newly diagnosed, or someone with more than one condition.... dealing with the information overload when going gluten-free is hard enough.
The symptoms of many conditions overlap with others - example - excessive thirst and peeing lots can mean diabetes or kidney failure or diabetes insipidus or hyperthyroidism. So when a poster begins to "push one diagnosis"... that can not only be alarming but send readers in the wrong direction.

It is wonderful to post links to various disorders and/or relate symptoms /relate how you were affected by a certain illness/allergies/intolerances - it can help many people.... but it can definitely be a turn off if ....well ....someone gets overzealous about their mission (to inform any and everyone who will listen about a particular condition)

I think the administrator has a difficult task and what we dont know - is how many readers sent in a complaint ... IMHO that is why some posts gets deleted, posters are banned or cautionary emails are sent from the administrator... his/her position demands he respond to "unrest" among the readers
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Sandy

Type 1 diabetes - 1986
hypothyroid -1993
pernicious anemia
premature atrial beats
neuropathy
retinopathy
daughter is: age 15
central hypotonia and developmental delay
balance issues (rides an adult 3 wheel bike)
hypothyroid 1996
dermatographia - a form of angioedema 2002
celiac 2004 - by endoscopy
diagnosed Aspergers at age 7 - responded very well (HUGE difference) to gluten-free diet
recovered from Kawasaki (2003)
lactose intolerant - figured out in Oct/06
Gilberts syndrome (April/07)
allergy to stinging insects
scoliosis Jan 2008
nightshade intolerance - figured out April 2008
allergy to Sulfa antibiotics

son is 13
type 1 diabetic - 2003 diagnosed on his 9th birthday
celiac - 2004 by endoscopy
lactose intolerant - figured out Nov/06

#13 rinne

 
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Posted 13 September 2006 - 09:11 PM

As I said, I too had had problems logging on for a while and because she had emailed me with this I was not under the impression that she was deceitful. Also it was immediately apparent from her posting style that she was Tailz I thought but again I was unaware that others had not been informed. As to emailing Scott, I couldn't possibly speak for Tailz/Breezy but I didn't email Scott because I didn't want to bother him. I think this may be a problem for some of us who are very ill, we are afraid to ask for help, again I am not speaking for her.

For me the point is that when someone is in distress and obviously she has good reason to be in distress then an effort should be made to support that person. I was under the impression that she had been posting about Lyme for a week or so and that seems like a short time for people's patience to wear out.

And yes Ursula I have noticed that you do bring up your other intolerances and you do it in a very tactful way, I appreciate that. And I also feel for someone who has been so misdiagnosed as to cause them incredible damage and distress and that having undergone what could be described as torture they might not be so tactful. I appreciate that too.
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A family with Celiac disease, two brothers and two sisters.

Lyme Disease, Diagnosis October 19, 2006

May 2006 - December 2008 Gluten and Dairy Free

December 2008, while seeing improvement on the gluten free diet, I did not recover and so in December of 2008 began the SCD and now have hope for recovery.

#14 Ursa Major

 
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Posted 13 September 2006 - 09:24 PM

Rinne, I tried to help, really. I sent her a very long, very compassionate PM. I gave her good reasons why it would be good if she would stop pushing her agenda so aggressively. I even gave her my e-mail address, in case she wanted some personal support.

But she didn't answer me, but rather went ahead with her new name and got more aggressive than before about pushing Lyme disease! And this time somebody complained who was NOT being mean or anti-Christian at all.

Believe me, nobody here ever gets banned lightly, or without prior warning (unless they obviously are just trying to advertise a business, or are here only to harass people). But if somebody gets warned, and gets asked nicely to please stop whatever it is they're doing that bothers people and ignore that advice, eventually that person gets banned. That's just the way it works. And Scott is truly a kind man, and prefers not having to ban people. And the moderators have all been chosen, because they're reasonable people and have shown kindness and compassion, as well as wanting to educate and help people.

Now, Tailz still has the opportunity to e-mail Scott and apologize and explain why she came on under another name, and that she didn't mean to deceive anybody (I am not sure she didn't, but I am willing to give her the benefit of the doubt). It is then up to him to decide what to do.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

#15 gfp

 
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Posted 14 September 2006 - 12:44 AM

Well, I certainly didn't complain even though she was "annoying" for the simple reason she obviously "believes" Lyme is a cause or the cause of celiac.
However my opinion is perhaps it is? I mean for all the threads with MD's and research we still don't know why some DQ1 people get celiac and other's don't and we don't know enough to say.


For me the point is that when someone is in distress and obviously she has good reason to be in distress then an effort should be made to support that person. I was under the impression that she had been posting about Lyme for a week or so and that seems like a short time for people's patience to wear out.

This is pretty much my opinion. For instance we as a group often say things like take the enterolab tests which is still unproven research.

Rinne, if tailz had problems logging in under her original name, why didn't she let us know who she was, when she started posting under her new identity? Why didn't she approach Scott, asking him to fix the problem, or at least post under the "Board/Technical help" forum? The fact that in one post she called somebody older 'child', creating the image of somebody who was a lot older than herself, shows that she was trying to create another image and that she was also trying to make people believe that BreeZy and tailz were too different persons. That was obviously deceitful.


I think she probably thought she had been "unofficially banned", that is she thought she had been banned in order to force her to eMail Scott and then she could be told to shut-up. I'm not saying this is what happened but perhaps it is what she thought had happened. Obviously the board has had some technical problems and I would guess when she couldn't log in she thought it was deliberate.

Now, Tailz still has the opportunity to e-mail Scott and apologize and explain why she came on under another name, and that she didn't mean to deceive anybody (I am not sure she didn't, but I am willing to give her the benefit of the doubt). It is then up to him to decide what to do.


If she believes that she was being singled out then that is rather unlikely to happen.

I saw a post a few days ago by Scott saying there was no proof of a connection between Lyme disease and celiac in response to one of her posts.... and then I saw her post some links (I didn't follow) which I guess were some "proof" of sorts...

I guess the bottom line is its Scott's board and he chooses to run it the way he wants. Its plain that the mod's are not consulted over banning people and the final decision rests with Scott. Its also plain he doesn't want to write down the unwritten rules so this sort of thing will keep happening so the mods have to operate in some gray space second guessing the unwritten rules.

Its also clear that a team of Brits or Aussies will defeat any US cricket team that gets put together from big baseball hitters so long as they don't understand the rules of cricket anhd these rules are kept from them, (come to think of it who does ?)....

On a personal level I hope her tests come back positive, who knows how lost she will be if her tests are negative!
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)




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