posted
Sorry, it fills up so fast these days! I'll take care of it now.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Not a problem. I'll rewrite the message when I get more time. I know you are busy.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
One thing we all need to remember is that most of us are ill and have incredible ups and downs.
It is amazing to me that people here manage to express themselves well and acurately and that others of us manage to respond in a helpful way.
People post here around the clock, often in the middle of a painful night, or in a foggy-minded afternoon. And, if you are like me, often forget that we posted anything at all!
We are all amazing. Many have taken offense when none was intended, or completely mis-read what the poster said was trying to get answered, and yet most of us remain and try to help.
The moderators have impossibly difficult work to do and most of them while they are ill as well! We should be grateful for them.
I hope Betty gets some rest and some more sleep - she was one who posted all night.She needs and deserves it.
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
there seems to be a great issue of respect on this forum. many if not all oldies have left due to nasty responses from new members. there have been at least 20 members with much info and help that have left due to the attitude of others. i myself is one. i try to give a moderate response to a question and get blasted for my views. i still answer some questions ,but the ones i know i will get abused i pass on by, which is not good ,since the other side of the answer should and must be told.
this has been going on from at least a year and it is very difficult to stay here and help ,when people blast you for the facts the you give.
as far as i know all of us are semi healthy and still helping from afar. my research and treatment have helped many. my collection and distribution of money for the needy is still going on. and yes i DON'T NEED TO BE HERE. I AM LYME FREE AND IN REMISSION FOR NOW 4 YEARS. so these gestures and abuses i tolerate so that i may help others that WANT MY HELP. I WILL ALWAYS ANSWER, BUT I MAY NOT POST ANY LONGER. I HAVE NOT BEEN BANNED FROM ANY SITE BUT HAVE LEFT VOLUNTARILY.
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
DocDave -- Losing you is a huge loss to Lymenet. You have been missed.
Losing Betty is a huge loss also. I am hoping that the circumstances can be right, at some point, that she will feel comfortable returning. Only time and attitudes will tell.
Thanks for all the beautiful advice, care and concern that you have given to people.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
If you are blasted, please report the post. I am also in remission so no longer read all the posts that are made every day. If you see something and wonder why it's "allowed", it's probably that we haven't seen it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SGK,
I know you are doing the best you can, but this issue involves other moderators - my note is not written in reply to yours but I've just finished my work here. I was not going to say anything but since StymieLymie said what he did, it may be of interest to know that he's right. People who supply good information have left and are still leaving.
-----
The point is that several of those who have bashed repeatedly, remain. They will find new targets. No one is safe. The attitude will go on. It was the person being verbally abused that was banned, not the abusers.
I can't be a part of such an organization that allows such unfairness and veiled abuse.
It has taken me many days but I have just finished deleting all threads that I started. However, two of my main sources of interest can still be found by searching for porphyria and for many of the inner ear issues such as tinnitus and other terms. I leave links there as a gift to those yet to come along.
As for why I deleted past threads which often contained extensive links and abstracts - in good conscience, I could not leave the body of my work with a group that I would not want to be associated with due to the way people are treated by its own members.
I have not been banned but leave voluntarily. I've received a bit of bashing for the way I post or the extent of my research - wanting people to have what they need to proceed. I could deal with that but it was the way Betty was treated (repeatedly, over time) that led me to this decision.
I am not well - far from it - yet, from my own search I've much research to share in 3 or 4 particular areas, it takes everything I have to write. It's just too stressful of an ordeal to remain in this opinionated clique that has blossomed. It makes me sicker.
I used to be a professor of journalism. I used to love to research, teach and share the wonder of learning. I hate that I have had to research to save my own life since there are no LLMDs in my state. Still, for a split second here, I enjoyed sharing with others some of what I've found to be of value - to make their search for health - for life - easier. I do hope it helped. -
[ 11-29-2009, 02:45 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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I just wanted you to know that you helped me prepare for my tooth extraction earlier this month. I took your suggested abx Clindamyacin to my LLMD and he wholeheartedly agreed.
Thanks, I really appreciated the help.
Posts: 374 | From United States | Registered: Nov 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Keebler -- We have lost Betty, and now it seems that we have lost you too. Such sadness.
I am beginning to feel that soon I will be the only old timer left. It will be me against the abusers. But I can't in good conscience walk away yet.
God only knows who the next target will be. It could be me. I've chosen to turn my back on the abusers rather than be sucked in by their nastiness. But who knows how long I can keep doing that.
It may be just a matter of time before I too feel the need to throw in the towel. Time will tell.
Hugs to you and Betty both. We miss you.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
Keebler, I'm sorry to see you go. Truly, we want no abuse on here. Like I asked, please report it.
There is more to the story about Betty being temporarily banned. I am not going to divulge the whole story. You all are missing parts of it though (even the ones who have many of the emails).
You are welcome back anytime Keebler. I hope after a break you decide to return.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm going to add a comment here from the perspective of someone who is "outside of the loop."
While I don't deny that abuse occurs between members, I don't see it. Either the moderators are removing it before I see it, or it is happening behind the scenes such as through PM and/or email.
I'm not even sure what is meant by "abuse" as the term is being used here.
I've seen posts with conflicting opinions, but I accept that there is no resolution when people disagree at a fundamental level. That's when it's time to live and let live.
I know first hand how being sick and not feeling like myself makes me overly sensitive to criticism. And again I know the issues causing people to leave could be behind the scenes. Regardless, it's possible that people could let things cool down before taking irreversible steps to distance themselves.
Support is crucial during recovery and I'm sure it's a passion for some who are healed. Support and ideas come in different shapes and forms and there is no one-size-fits-all answer to most questions. I treat this site like a buffet: I take what I like and skip what doesn't appeal to me.
Wishing everyone good health.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Something that I was taught and continue to pass on to others:
"No matter how much you think that you know about someone, or about a situation, and no matter how justified you are in supposing that you know all there is to know, there is always and inevitably more to the story."
We need to feel compassion for everyone involved. And I try. I am just sad that this has happened.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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posted
So Betty WAS banned. I thought you said she just left for a break of her own free will?
quote:Originally posted by sixgoofykids: Keebler, I'm sorry to see you go. Truly, we want no abuse on here. Like I asked, please report it.
There is more to the story about Betty being temporarily banned. I am not going to divulge the whole story. You all are missing parts of it though (even the ones who have many of the emails).
You are welcome back anytime Keebler. I hope after a break you decide to return.
Posts: 365 | From Sylvania | Registered: Aug 2008
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quote:Originally posted by sixgoofykids: It is our understanding that Bettyg is taking a break from the board. We all appreciate all that she did, and if she needs a break, she certainly deserves one. I think all of us who have been here any length of time have taken a break at one point or another.
Thank you for your concern, Tracy.
Posts: 365 | From Sylvania | Registered: Aug 2008
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quote:I am beginning to feel that soon I will be the only old timer left. It will be me against the abusers. But I can't in good conscience walk away yet.
Lou,
There are a lot of "old timers left". I've been here since 2001. I don't get involved in the drama.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I can't believe you deleted all the threads Keebler. Not good IMO. For every bad person, there are 20 good ones. You doing that may have hurt others who desperately needed it. I'm sorry you felt you needed to do something that drastic. That action just seems wrong.
Maybe I should just leave too. Really, don't take it all so personal. It's the Internet. it blows my mind because I've read nothing but peopel praising your efforts since I've been here. Doesn't that mean anything to you?
What should concern everyone so much more is these members of Lymenet Europe posting real people's names, keeping blogs about members here, and other outright unbelievable actions. THIS makes me not want to post. While I don't agree with some stuff here, I am in shock members there actually review every action on here to turn into gossip there. BEWARE WHAT YOU ALL WRITE because you're being watched like hawks. That is serious IMO. Every post you make, every comment, thought all is recorded there. When a thread vanishes here, it's saved forever there.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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quote:Originally posted by JR: So Betty WAS banned. I thought you said she just left for a break of her own free will?
That is how it started. It is true that she left of her own free will. She cannot post at this time, as has been discussed on this thread, but that was after she left ... after she wrote her post that had to be removed. We were still in dialogue with her when she decided to leave and we do want her to come back after a cooling off period.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by lou4656: "No matter how much you think that you know about someone, or about a situation, and no matter how justified you are in supposing that you know all there is to know, there is always and inevitably more to the story."
Very, very good! And very true in this case! Thank you!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Seek, I agree, this is a PUBLIC message board. You should only write information here that you want PUBLIC.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I know Six, but others may not be aware how cruel it gets. I was quite shocked at stuff I read lately and I'm not thin skinned.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I haven't seen anything shocking on here lately but then I'm not here all the time. But I wouldn't be surprised since most of us are very ill, irritable and an explosion waiting to happen.
From what I can tell, those that have been here a long time and have gotten better tend to move on eventually anyway. It makes sense. Some stay and offer their knowledge, while others have other callings and other directions to go in.
Everything happens for a reason, so maybe it was just time for some ppl to move on. I am sure some of us that have been here a year or two will also have our time to move on too in the future. Life goes on!
I hope that those that have left us find health and happiness. Maybe this is where a new journey begins for them.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I am really sorry to read of this latest exodus, that of Keebler, who has been so helpful to everyone here.
And Stymie, and Betty -
I think any bashing, meanness, cliques etc need to end! People come here for help. We shouldn't be losing our helpers, who also can use help too, from time to time.
I was actually surprised to read that Stymie thought his information had been attacked. It's my impression that he has been our Lyme dentist-in-residence and extremely medically knowledgeable!
Are we in need of another process to handle grievances here, so we don't have to lose longtime members every time there's something going on that bothers people?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I have been a member for several years now and post rarely. I feel that I have learned much, but can pick the information that I need and move on. I truly believe that spending too much time on this board is not healthy. Especially when you have to deal with the politics of this disease.
Since this subject is taking place, I would like to mention that many of the "old timers" are very well intended, but some, come off rather harsh. I also had the experience with Betty telling me to break up my sentences so a lymie can read them. While I will be the first to state, I do not believe I was as sick as some, I was in a terrible way when I first found Lymenet. That initial encounter just upset me more. As a newbie, I was seeking help, not a berating incident over something that would be considered nonsense elsewhere. We are not speaking face to face and this is a public forum, but there are ways to speak in a more polite and less accusatory manner. I was totally unaware that this was an issue when I first arrived and it didn't bode well for an initial impression. If the intention of this site is too provide others with information and get our word out, doing it in that way is definetly not successful.
As I mentioned above, I post rarely, but look often. I will search for whatever my question is and get out of here. That approach has served me well and allowed me to stay out of the drama that seems to hover around here. I know many of the people here have extensive experience and divulge their knowledge when they can and I greatly appreciate that. Unfortunately, while I do believe Betty has a great heart and was well intentioned, I do believe that she expected full recognition for what she did and expected to never be questioned. That included when she sent her responses regarding the spacing. She could say whatever she wanted and expected to get away with it, yet she would never stand to be spoken to that way. At least that is how I saw it. I saw many of her uffda's in response to some.
As an example, many old timers will remember when she was asked to redo the newbies forum. I believe initially, she was upset that she was asked to do something over. For someone who requested people to break up their spacing, it was almost inconceivable to think that someone with neuro lyme could read the newbies column. I for one, could not. After she did it, she spoke of how it took her days to do it.
I know what a great advocate she is for the Lyme community, but when the same story is posted on every comments section for every article written on the internet regarding Lyme, it loses its sting. If I was just a person with an interest in Lyme but who was not ill and read several articles and saw the same story of Lyme for 34.5 years from my Christmas tree, I am sorry, it loses its validity. No matter what article you read it was the same story over and over. Many of you know what I mean. I would look something up and see that people posted regarding some type of symptom. There would be a response from Betty stating she had it and it was caused by her XYZ affliction. Again, this does not help the Lyme validity factor when we have doctors who are looking at some of these posts. I know many others who have PM'd me over the years and have had the same feelings, but have never spoke on it. They had no reason too because they took what they wanted and left. We didn't stay and look for the drama.
I am not trying to be harsh and have never spoken of this before, but I believe it is the time to mention this now. With all of the attention Lyme is getting in the media the last year or so, we need to show some validity that people are suffering, not suffering to gain attention. All of this infighting just makes us look like the bunch of wackos that the IDSA says we are. We need to stand together and put a face on this horrible disease and show how many of us are suffering and that we are not going away.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its all disappointing.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by tonysgirl: I have been a member for several years now and post rarely. I feel that I have learned much, but can pick the information that I need and move on. I truly believe that spending too much time on this board is not healthy. Especially when you have to deal with the politics of this disease.
Since this subject is taking place, I would like to mention that many of the "old timers" are very well intended, but some, come off rather harsh. I also had the experience with Betty telling me to break up my sentences so a lymie can read them. While I will be the first to state, I do not believe I was as sick as some, I was in a terrible way when I first found Lymenet. That initial encounter just upset me more. As a newbie, I was seeking help, not a berating incident over something that would be considered nonsense elsewhere. We are not speaking face to face and this is a public forum, but there are ways to speak in a more polite and less accusatory manner. I was totally unaware that this was an issue when I first arrived and it didn't bode well for an initial impression. If the intention of this site is too provide others with information and get our word out, doing it in that way is definetly not successful.
As I mentioned above, I post rarely, but look often. I will search for whatever my question is and get out of here. That approach has served me well and allowed me to stay out of the drama that seems to hover around here. I know many of the people here have extensive experience and divulge their knowledge when they can and I greatly appreciate that. Unfortunately, while I do believe Betty has a great heart and was well intentioned, I do believe that she expected full recognition for what she did and expected to never be questioned. That included when she sent her responses regarding the spacing. She could say whatever she wanted and expected to get away with it, yet she would never stand to be spoken to that way. At least that is how I saw it. I saw many of her uffda's in response to some.
As an example, many old timers will remember when she was asked to redo the newbies forum. I believe initially, she was upset that she was asked to do something over. For someone who requested people to break up their spacing, it was almost inconceivable to think that someone with neuro lyme could read the newbies column. I for one, could not. After she did it, she spoke of how it took her days to do it. That doesn't play well with me.
I know what a great advocate she is for the Lyme community, but when the same story is posted on every comments section for every article written on the internet regarding Lyme, it loses its sting. If I was just a person with an interest in Lyme but who was not ill and read several articles and saw the same story of Lyme for 34.5 years from my Christmas tree, I am sorry, it loses its validity. No matter what article you read it was the same story over and over. Many of you know what I mean. I would look something up and see that people posted regarding some type of symptom. There would be a response from Betty stating she had it and it was caused by her XYZ affliction. Again, this does not help the Lyme validity factor when we have doctors who are looking at some of these posts. I know many others who have PM'd me over the years and have had the same feelings, but have never spoke on it. They had no reason too because they took what they wanted and left. We didn't stay and look for the drama.
I am not trying to be harsh and have never spoken of this before, but I believe it is the time to mention this now. With all of the attention Lyme is getting in the media the last year or so, we need to show some validity that people are suffering, not suffering to gain attention. All of this infighting just makes us look like the bunch of wackos that the IDSA says we are. We need to stand together and put a face on this horrible disease and show how many of us are suffering and that we are not going away.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I guess I missed another on my fellow Neuro-lyme sufferers, judging by the latest comments I see posted here.
Why can't people submit their complaints & personal attacks to the moderators, instead of posting them publicly on the board?
Lymenet would probably lose a lot fewer old-timers & it seems to me that SOME newbies might be able to glean SOME benefit from people who've been fighting this battle longer than they have.
SOME newbies might even have appreciated what the people who are being driven away would have had to offer and SOME people have just caused THOSE people to lose what THEY may have considered to be valuable resources.
Then again, I may be wrong.
Why can't people just take what they need & leave the rest? Why the need to criticize? Does it make us feel better about our own flaws to point out flaws in others?
It's hurtful & it really needs to stop, IMO.
It really makes me sad to see people who've cared so much, for a bunch of people that they've never met, driven away by cruel & hurtful words being directed either at them or at others they identify with.
While I'd really like to respond to some of the negative comments made here, I'm choosing to SOB and hope that the moderators will address it.
I was always happy to break up my posts so that those who were worse off than me might be able to offer me the benefit of their own research & experience and so that they might also benefit from any information I provided.
I've had to delete much of what I wanted to post here. I am simply posting this instead:
I've missed the old timers who were banned & those who stopped posting because of personal attacks. It will not be the same here without Betty & Keebler.
IMO, those are some pretty big shoes to fill. Good luck to those of you who will try. I hope you are able to.
Happy Holidays everyone.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Ali,
So well said. I wanted to say something similar, but I was afraid it would come across with anger and I didn't want to do that. I totally agree with what you are saying.
I too was very appreciative of Betty asking me to break up the posts and also happily agreed to do so. I understood that she was trying to make an assemblance of order for the board.
Betty and Keebler were great assets to this board and will be sorely missed. And as Doc Dave put it there is a lack of respect.
You don't always have to agree, but sometimes being a little humble and giving the old timers the benefit of the doubt would show some class. I for one feel the void already,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
I really feel that there are certain old timers who got very set in their ways and have a hard time bending or changing or taking new ideas as a way to improve what they have been doing.
Also the fact that it is taken so personally creates the tension. I think any of the response to the new ideas is coming from an Ego and not from the subjects at hand.
The subjects were very simple and easily worked out and through. Very simple.
But the person was not able to see that and only saw the suggestions as a personal attack on them.
I think real leaders and representatives of this sort of forum should be able to listen and converse and come up with compromise and new plans forward that make everyone heard and be included.
I think there is always need for improvement in some way and it should be collaborative.
In my opinion the "leaders" on this board should be much more than willing to listen but should be anxious to do so because it makes the board feel like a group effort and a unit.
As opposed to a group of leaders and the followers.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
PS
If you go to Lymenet Europe.
The only thing you might get out of it is appreciating that this site does not allow the rath that they type there.
And maybe that perspective will help you realize how minimal the things are here....
Go to that site at your own risk.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
The moderators have received numerous reports on this thread from both sides of the issue for the past week. The original question posed has been asked and answered and the topic is now closed.
Posts: 127 | From USA | Registered: Oct 2009
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I'm sorry you felt you needed to do something that drastic. That action just seems wrong.
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on my fellow Neuro-lyme sufferers, judging by the latest comments I see posted here.
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