just wanted to let those know that I maybe shut off from lymenet becasue of it. You can reach me at hte governor's lyme commission here in RI, or at [email protected] if I can't come back here...

this site is to help people, and I have done nothing wrong. We have permission and his suggestion to post...so If I'm shut off for this , then there is really something wrong with this site now...

Yes, Dr. Jones has allowed us and given permission to post his name and number here.

Yes, I believe when a board gets so dogmatic that it misses its purpose, a change is needed.

The purpose of lymenet has helped save many childrens lives, and Dr. Jones was an integral part of that. If we cant give his information out at his allowance, then we certianly have a problem in direct violation of the purpose and mission of this group.

It was my understanding that this one dr in CT had no objections.
He and his staff are so dedicated to helping children regain their health & resume a normal life!!

I've been a loooongg time member who has helped alot of people on here,and I' will continue to do so ,even though I no longer suffer the ill effects of lyme disease.

We have always given out Charles Ray jones MD's name at HIS REQUEST in order that other's may get his name and phone number to get as many children as possible help. I have never given out any other names of drs. nor would I , as I am quite intellegent and know the difference between having his permission and NOT having others permission..funny how that works..huh?

So get off your high horse adn stop treating people like they don't know what they're doing. No one has the right to treat others the way you just did..lyme or no lyme.

It's been a little rough here for the past few weeks ... so the rule about drs' names is now being strictly enforced.

I'm done.

Just yesterday I was reading some of your Bart stuff that was new to me.

quote:

---

Originally posted by janet thomas:
Please reconsider. This board needs it's most knowledgeable members.

---

We really do need you Lisa....and Tinny too. Keep the door ajar, OK?

Sheesh. This was all in response to my post.... Don't go and make me feel weird and terrible about all this OK? Please? I don't care if it's my fault or not- I feel bad.

I can understand both sides here, I think Lou said it best. It's really a small thing in the long run compared with all the other crap we have to deal with day in day out...

It's not about you or Dr J. at all, I'm sure it's about misunderstandings with other people.

Perhaps a comprimise would be if the thread was deleted and Dr J could leave his contact publically in the Dr's section if he wanted and if it's appropriate?

I think this all might be very confusing to newbies. It would confuse me for sure.

We need people who know Lyme inside and out. We need people willing to share info about Lyme. We need people with empathy and caring.

In short, we need YOU.

We can get around this rule in a heartbeat. No problem.

I personally know of 2.

Why not allow those to be posted IF that Physician has given written permission?

Trout

By the way...I am seeing that those who want to see this board's purpose DESTROYED
are actually winning. Too BAD>>>>>they should be removed...immediately.

Can we say "overmoderation"? I posted a new thread about an old post of mine that was "not appreciated" by the moderator, she sent me an email that said that, and more. I felt that she took offense to something I posted (yes, it was referring to her and her job) but I meant what I posted *tongue in cheek*. And since tone cannot be determined online in some instances, there are cases or threads that are taken "wrong" by some people, but are not meant to be offensive.

Now, that said, I noticed a day or two later, that the moderator removed my post/thread from the General support forum.

Without telling me, and not because I'd broken a Lymenet "rule". But because she took offense and I guess it made her mad?

What is the Lymenet board coming to if the moderator is going to pick and choose what she removes, whether it breaks a known Lymenet rule or not?

This is ludicrous. Looks like from this thread here, another person is going to leave lymenet for another "rule" that is either in effect, or will be taking effect. If this place is going to be so nickle and dimed to death, then it will not be of any value to those newbies everyone is so worried about scaring away, but also to those of us that have ridden the waves here with trolls and such in the past, and have stayed anyway.

If you can't post a F#$%^ thing because you don't know if Ms. Moderator is going to slap you down for some "rule" that is suddently instituted, or for some inappropriate comment (and that is purely a subjective point of view, I found out in my case) then lots of slammed doors I'm seein' here in the future.

quote:

---

Originally posted by Lymetoo:
We need parents of children with Lyme. We need parents who deal with dr j and know what to tell newbie parents.

We need people who know Lyme inside and out. We need people willing to share info about Lyme. We need people with empathy and caring.

---

You are extremely passionate and wanting to serve families; it is evident........your heart is pure/in the right place.

I don't quite understand all the button pushing of the past five weeks or so myself......but I think Paisley did a fine job of thinking through the many sides and perceptions of newbies and oldies and scouts or troublemakers.

lou's above remarks, too, make sense.

Is there a moderator or long time activist like Ellen who can explain politically why we need to be more careful and protective of our humble and loved pediatrician?????

I'd still be in bed with chronic Babs and metals toxicity on the "one abx fits all" plan had you not vehemently insisted I trek up to the boonies of NY for treatment.

Don't take it personally and don't sweat the small stuff. You've come too far and helped too many.

I urge the moderator to reconsider. Come now, how can we ban the founding member of the "Mepron Buddies?" While the rules are rules, why shut out or penalize those who are well intentioned and truly desire to better peoples lives?

We have so few Lymies in remmission who stick around to support newbies or others in a rut. Unless they are too disruptive, we need all we can get!

Hopefully this can be resolved amicably.

As far as posting Drs. names who have given permission, that's great, they have nothing to hide and are more then willing to have the world know who they are. But that IS NOT THE ISSUE.

When say Dr. Js name is given openly on the board then there are those who are new who may not realize that he has given "special permission" to give his name out over the internet. They may think that giving names is ok, and we have seen that happen and I think it was in fact a HUGE problem with a couple of newcomers who didn't see the need to remove the names they had posted.

Not giving any names is merely a SIMPLIFICATION. It's just an easy simple rule that everyone can look tp and no one can say that "they see Drs. names given all the time, why do they get to give out names and I can't.....Balh, blah, blah." Do you get the point?.

I see notihng but darker days ahead...what is happening on this board at this time is....beyond belief.

Moderation is no longer in favor of those that are REALLY here to help others, and not masking themselves as something else.

I see a pattern developing ....those that are enjoying this are even so bold as to post in the streams that voice open opinions against them. It is also amusing to see that these people from the dark side are 'kissing up' to the moderators...and those that seem to be against the unwelcome intruders are being 'crashed and burnt' by the moderator.

What I also find...amusing, is that those who have threatened to leave...don't. Unless they are shut out by the Moderator.

Why?

1) They truly are very caring people and don't want the 'dark' side to win, and therefore remain to fight the good fight.

2) They don't leave...because they ARE the dark side and know that they ARE accomplising their true goal by NOT leaving unless by Moderation.

This is a privately moderated site for a reason...to control the discord.

I ask that the moderators move quickly against the 3 to 5 currently active and obviously blatant trolls.

It is also SO easy to see who these people are...why? They copy posts from THIS site and move them to another and call us names...BOOM...in an instant this type of poster would be flushed...but NOT any more.

By the way...OK....let's NOT post the names of those that have given permission...but, don't threaten to throw someone off because they HAVE posted a name that is well known.
To do so would be counter-productive.

Trout

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc. www.ildf.info

Lymenet is not what it used to be. It is sad but true.

This got my attention though. Tincup is leaving?????????? Are you kidding?

And now Lisa might leave?

DocDave (although his last few posts suprised me cause they aren't like him and I can only guess he has gotten upset/tired/frustrated by what has been going on) was shut off from this site...

What the heck is going on?

I've been saying for a long time (since I had a falling out with the moderator many months ago due to some OT things that came up) that Lymenet is extremely biased when it comes to the moderator/some people on here but this is ridiculous!!!!!

quote:

---

Originally posted by Lishs mom:
Yes, we need tincup and lisa, but.....
This board is no longer functioning as it was set up. There will be something that does work soon, Im sure of it

---

When you know of another site whereby TBD information can be shared in a friendly, less hostile environment, please let us all know.

At this point in my treatment, I find the current affairs of Lymenet to be disappointing and unproductive. Prior to this time, I found Lymenet to be friendly, supportive and helpful during my quest for wellness and I hope in some way I have given back at least half of what I have received. However, at this time it seems evil is winning out over the good that has been and can still be provided by this board.

I hope those who are negatively infiltrating this board are prepared to make substantial donations next fall to keep this board financially afloat for another year. Otherwise, I fear this could be a financially bleak year for Lymenet since so many loyal/active/knowledgeable members are no longer with us.

Truly I do not know nor understand why things have gotten to the point they are at. It is difficult to remain quiet knowing that great losses have been incured in our membership. However, in case I now find myself booted out, you can reach me at: [email protected] should you know of another viable site or wish to contact me.

quote:

---

Originally posted by Deb:

I hope those who are negatively infiltrating this board are prepared to make substantial donations next fall to keep this board financially afloat for another year.

---

Why would those who seek to destroy this board want to contribute to it financially??

Jill....Tincup's post is in General Support. I seriously doubt she will start her own website...but then, who knows?

They wouldn't, thus that is exactly my point. We need the continued support of all those on Lymenet that truly work for the good of others. It is my hope that a more suitable way to bring daily operations on Lymenet back to where they once were could be employed instead of pushing good people out for whatever reasons.

It is late and I am trying my best to write cohesively. I am sorry if I was misunderstood.

quote:

---

Originally posted by Charles05:
Lisa, I may be new here but been posting on sci.med since back in the mid 90's and am now the elected Newsgroup leader

I know you been here a long time and so has a few others that seem to complain, that does not give you a right to question the moderator and her rules like this.

It seems the "long time" posters here want the board to run there way with anyone who they think is a spy gets the boot.

Also going against the rules on posting Doctors names is a violation, no matter IF YOU thing it is OK because a Doctor gave permission to do so.

It seems the LONG TIME posters are the problem, not the so called new "spys" on that list you want banned.

---

All I have to say is WOW

And Lymenet is gonna be the new sci.med #2 if it continues to go the way it is now heading

The reason this among other things has fallen apart is because of resident creatures with bright pink fuzzy hair and wide noses.

Symptom with a deeper cause..

Tho - in any event I suppose we could post:

Doctor C. R. J,
with his phone number, and about his experience..maybe link the Wildernet article, ect

There's no rule against phone numbers.

Mo

There have always been 'problem children' here, but they have not been allowed to create the chaos and damage that they have done over the last several months.

This board is coming apart and the problem children are just loving every minute of it. The inconsistency in the way things have been handled has severely hurt the board. The moderator has basically lost control and any credibility because the problems are being allowed to stay around at the expense of losing some very fine long term contributors.

Yes the rules have always said that docs' last names are not listed. However the exception has always been Dr. J. because he has allowed his name and phone number to be used. It's never hurt anything in the past, but unfortunately the moderator has lost so much control over the board, that she is now overcorrecting.....

Unless Jenifer is going to take the time to delete every Dr. J message here at lymenet, which is what I am sure some would love her to do because it would take her away even more from what moderating she is doing, one can easily do a search and find his number posted in past threads.

cootiegirl

quote:

---

Originally posted by Charles05:
.....and am now the elected Newsgroup leader and I know how a few bad apples can turn a group in disarray.

---

Yeah Chuck, sli.med is what you do at night. Tell everyone about your day job and how you make it through the heat in your costume. Don't the kids and their parents get upset when you hand out bad apples?

I have a couple of thoughts.

Couldn't the forum techies set up some kind of Primer for those who are signing up for the first time? Ideally, couldn't it include some of the issues that we are having trouble with?

For example, there should be a checkbox after statements that need to be read like the disclaimers made my online banking and such.

Newcomers might be introduced to some of the racy topics that keep coming up.

For example, Lymenet might include something like this before anyone is authorized to get on this forum: "You are obligated by Lymenet rules that you must treat others here with respect. This does not mean that you need to agree with everything everybody says, but we will not tolerate character assassination or name calling. You risk losing your membership priviledges if you don't accept these terms". Perhpas this already exists - I was in such a fog when I signed on that I don't recall what was involved in the process.

It's pretty obvious when the negative behavior occurs and it seems easy enough for the powers that be to remove this person's access to the forum. There is the chance that the person could sign on again under a different name, but the same rules apply and the person would get it after a while.

Additionally, make the newcomers aware of some of the nuances that exist here: Trolls. Include a definition and what their intended purpose is. Don't leave it open to interpretation. Hit this topic head on so it's not left open for interpretation. Let's acknowledge its existence and forewarn the newcomers.

State that trolls are a common occurrence here at Lymenet and warn newcomers to use caution when divulging information about themselves, due to the malicious intent of trolls.

Let newcomers know that all doctors names are not to be used (except Dr. J) in any conversations.
You might want to even include a bit of explanation for this.

It might be helpful to provide some kind of background to this unusual request to unsuspecting newcomers. Providing a bit of history also gives the newcomer a new perspective and perhaps some validation as to why they might need to come to an internet forum to get a medical diagnosis.

It's absurd to some (including myself when I first arrived here) to discover why they aren't being diagnosed. Eventually, I needed to ask this question and felt so naive. I had no idea that politics swirled around this issue.

Lastly, guide Newbies to the "Info for Newbies Sites" which was put together by Tree? And, other such helpful sites like Wild Condors' site and TinCup's extensive and exhaustive list of medical symptoms, and any other pertinent site info. that I am forgetting. Otherwise, these valuable lists risk being missed by newcomers.

And, if we really wanted to get hi-tech and more careful about who uses this site and how, the sign-up process could get a bit more rigorous. If it became necessary to include some kind of personal info. (and promised it would remain secure by Lymenet) might we not eliminate some of the trouble makers?

What about a probation period for anyone who abuses the priviledges?

Just thinking...

Years ago Lou posted a message about the inclusion of doctors' names and said there had NEVER been a rule about not using them.

The reason given as to why we shouldn't use them is kind of ridiculous......the intent was to protect them from persecution by others. Anyone involved with lyme can probably easily name all the LLMD's in this country..not using their names does not keep them in the realm of the "unknown".

It would be inappropriate to discuss the treatment offered by these docs, or to quote things said to their patients, etc.

I am positive that Dr. Jones would be upset to think that his name could no longer be used. I'll bet if you asked your LLMD if it was okay to give out his/her contact info
they would agree to it.

Reading all the posts here would take a lot of time, which the current moderator does not have. The only people who seem to do that are the trolls.

The current moderator is in the family that set this up years ago. Don't we have the obligation to appreciate this and understand if things are not perfect at times? Many of us go thru bad days from pain, a few have had serious psych issues which spill over into posts.

Yes, we used to use Dr. J's name, but now we are asked not to. So instead of posting it, we email it to those who seem to need it. This doesn't seem like a big deal in the scheme of things. Save the outrage for the truly terrible things, of which there are many in lyme disease.....like having hardly any doctors, insurance problems, govt foul up on the disease, financial problems, etc, etc. You want my list? A small change in lymenet rules is not on it.

I really should just scroll on by with posts like this instead of reading and responding. Sometimes it is clearly letting off steam, which people are going to do now and then, and best just to understand and move on.

However, it would be nice if the obvious troll were removed.

quote:

---

Originally posted by:
Mo
Frequent Contributor

Posts: 5747
From: Wonderland
Registered: Jul 2002 posted 25 July 2005 00:16 ��� ���� �� ��
------------------------------------------------------------------------
Doctor J should remain the exception to newbies with kids, IMO...that is in the children's best interests, which is the reason he gave the permission.

The reason this among other things has fallen apart is because of resident creatures with bright pink fuzzy hair and wide noses.

Symptom with a deeper cause..

Tho - in any event I suppose we could post:

Doctor C. R. J,
with his phone number, and about his experience..maybe link the Wildernet article, ect

There's no rule against phone numbers.
.

---

It has no appointed, elected or self-crowned leader. I know because I helped get it started many, many years ago. It is unmoderated and devoted to free speech which is why some real garbage, including Charles' diatribes, gets posted there. Otherwise there are some good people still trying to make sense there and posting some very important news and information.

So sorry we have to be subjected to such sad deluded self aggrandizement.

Jen's request about naming docs seems very fair to me. Levels the playing field all round and keeps vital info on individual doctors in private e-mails where such info belongs.

I have one suggestion for all of us. Read through what you have written before you post it. It does wonders for being sure you really want to say that - whatever it is.

quote:

---

Originally posted by JillF:
All I have to say is WOW

And Lymenet is gonna be the new sci.med #2 if it continues to go the way it is now heading

---

quote:

---

Originally posted by Charles05:
Lisa, I may be new here but been posting on sci.med since back in the mid 90's and am now the elected Newsgroup leader and I know how a few bad apples can turn a group in disarray.

---

Are you people reading this? Proof that this is now sci.med # 2. Anyone who has been to sci.med knows Charles. His intention is to disrupt, not help. Why is he still allowed on this site? Looks like a trouble-maker to me.

I can post a ton of stuff on here that I found last night from sci.med - basically him saying that there was no loss if Lymenet ('Lymenut') was shut down and that there are rumors that there are problems running this site.

He's not a very nice person - from what I saw at sci.med and have seen from him on Lymenet.

Also, I believe Martijn is 'Martian' on sci.med. Another person who probably should not be posting on Lymenet.

Actually going to sci.med last night really opened my eyes. It is a worthless site and so full of just crap and name calling and making fun of Lymenet and other individuals. They really dislike Lymenet and Tincup over there.

We cannot let this happen to Lymenet.

I believe Jennifer (or other mod's) have been trying to clear up this whole mess. We need to make sure that our mod's know they have our support - even if we don't totally agree with them. It has got to be a hard job. Let's hope that all the trolls are eventually banned.

And yes, I am well aware that this post will make it's way to sci.med so they can make fun of me.

Trout