I'll be back only IF and when LymeNet gets back to the job at hand... which is HELPING others.

Until that time I do not want to be associated with a site that I am ashamed of... which makes me sick to see fall apart like it has over the past few months... and which is hurting more and more folks every day.

I will be busy focusing on local Lyme projects and activities that I have promised I would do... at least until the time this site is cleaned up.

If you have a sincere medical problem and need help, my email address is below.

PLEASE do NOT contact me about the awful place Lyme Net has become... I already know it... and I can not fix it for you. I have tried to get you all help as requested of me.. but we have not seen satisfactory results to date.

If anyone else wants to complain about the condition of this site.. may I suggest contacting the moderators. It is TOTALLY up to them to handle the situation.

In the meantime...

Ya'll take care of you. I will miss you dearly.

TC

To report problems with Lyme Net and ask for assistance ... please contact the moderators/owners at...

[email protected], [email protected], [email protected]

If you have to contact me for medical help ONLY..

[email protected]

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If you get the choice to sit it out or dance...

thing is, if YOU leave, as some others have, and as I am also tempted.... well then what will be allowed to be 'normal' here.

and what will the people who finally find their way here to Lymenet for help, find? more of the same treatment that some here have had for many frightening years?

i am sure there are 'several' here who read your post with glee... understand Tincup?

Is Lymenet getting it's slap on the wrist with the tone and content of this "admonishment"? As one other poster said on one of my recent threads dealing with freedom of speech, are the sensibilities on this board so delicate, that it cannot withstand firmer, more vocal and discordant voices?

Do we all have to "get along", agree with each other in polite tones, never clash, ignore opinions that do not slide in along side our own?

I mean really.

I have read posts in the past, some to me, where I have been made fun of, in a chiding, "just making fun" type tone of voice (if you will, this is a message board and tone cannot be heard, but you know) directed at me. Then, a few lines down, kind of explained that the posters words were "all in fun".

I have chosen to ignore, and not respond to being made fun or, or being gently riduculed/chided, from this person. I think you know who I am talking about, because it has happened to a great many people who post here.

I feel like I am being reprimanded, again, and it is somewhat disturbing, because it is MY choice to feel this way. Yet, having been a part of this community for so long, I don't believe I can separate how I feel with what I feel I'm being told. Told to act, told to say, to feel.

Sorry, but this is the impression I get after reading this post.

you deserve better.in fact,there are alot of other good people here who should not stoop to the $*^t,that is going on here.

i am gonna stay.i rather enjoy the joust.there is one who i really want....gary

see you ,when i see you......you should try the crabbin'.those jerzy blue's are runnin'. no tic's on the ocean....

Most Boards have a few such characters.

I just tune 'em out.

But I always tune YOU in.

Durn.

This doesn't mean I'm asking you to 'splain yerself. Just sayin' durn.

Michelle M.

I understand completely.

Thanks for all your help.

Too many people on high horses high. Some are long standing members at that.

Shame on all of us that allow and perpetuate this...

Trout

PS...See ya in the future...time to go work on My State Legislators

I hope all these bad apples have deep pockets to support lymenet come donation time. This site very well could become history.

I read and reply where I feel I can help. I ignore the other stuff.

You are a leader here and you will never know how many lives you have changed for the good. Still, I know it has to be hard to do as much as you do, and get harrassed as you do.

Ok .... I am just trying to say ... you will be missed ....please check back ..... "they" are bound to get bored at some point and go away.

I can read the frustration in your words, and am so sorry that things have gotten to you here.

Taking a breather is always a good idea every now and again.

BTW, you missed out on a fun road trip

Thank you for so much.

You know best what you must do, but I personally will miss your posts and all the help you haven given me.

Hopefully, it will blow over and you will be back with us.

Enjoy you other Lyme efforts and a great big hug goes to you.

I certianly share your thoughts about this place. I dont even suggest it anymore, and I only recently came back on due to requests from private emailers that there were some needs that needed tendin to.

But...like you, I can only do what I can do, and it sure isnt enough to change things here...

I hope you'll keep in touch! You have always been a good friend and mentor to me and I'm so grateful for that.

--Annie

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Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

You probably won't be reading this, but what the heck.

If you're going to let a few self ritious jerks make it so you can't help others and others can't help you, then you're not the person I thought you were.
No matter where you go, there is always going to be "trolls" in one form of another. This posting board seems to be a way for a few to make themselves feel important, and that happens on most any board. The bottom line is, that this board is for helping people, BUT, there will always be petty politics.

It is very dissapointing.

--Annie

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Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

Click here to see my Lyme journal.

I suspect that many of the newer members look at Tincup's posting history and figure she is relatively new to Lymenet (2004).

Actually, Tinny has been here since the dawn of time and had about a gazillion more posts than what her record shows.

Last year there was some sort of glitch that erased her enrollment and posting status.

Tincup is extremely devotoed to helping others with Lyme and I have seen her stay up way late into the early morning hours here offering support: day after day after day.

When she is not going to be around, she let's us know (as do many other members) so that we don't worry about her absence.

We miss her when she is gone.

Hey, maybe this will lure her back:

I love that picture! It's really cute!

Hopefully Tinny will recharge for a little while and then come back ready to jump back into it all! In the mean time, I think the post that Cave reposted would be a very good thing to do. I tend to use those things but it would be really helpful if everyone (or close to everyone) would use them, too!

Peace and healing,
Annie

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

Lyme Out Retreat Website

Lyme Disease Awareness Products

Click here to join Lyme Pals.

*******************************************

by Paisley (new screenname is 1tick3victims)

Some will say that this doesn't belong in this forum? I'm not sure - I am truly trying to figure out what is going on here lately. Before anyone becomes too defensive, please hear me out.
I will get to what I am talking about, but first my credentials. I have been on this site for about a year. First as Paisley and then as current name because lost password. So don't let my numbers fool you...I haven't been here long and I haven't written as many posts as others, but I don't want some to discredit my legitimacy for these reasons.

I have 20 hard years in the trenches with Lyme, including infecting my own two children in utero. I have come close to death with Lyme 3 x and feel as though I have earned my duty to speak up for these reasons.

I hope newcomers will read this post, and that is why I feel it belongs in medical, because If I can help one Newbie from leaving this forum (filled with invaluable insight into our lives; experiences with therapies, doctors, societies perspectives, the political backlash and how it affects us; insurance and disability support; and, changes in our physiology and psychology)... well then it is worth it. And, newbies typically start off in medical.

I have read several Newbie posts indicating their concern regarding the weirdness that they perceive here. I agree. I was gone for a long time due to computer problems and when I came back there was an entirely new tone to this forum. My observation was that there were a LOT of newcomers, and a new aggressiveness in some discussions, more emotions, animosity, hostility and insults.

I do not want to suggest that the newcomers had anything to do with this. It is probably coincidence. What probably isn't coincidence is that there were some important bills on the table recently and history suggest that when this happens, things get a little funky around here.

I do not believe all of the newcomers are legit and think some are here to stir up the pot. In doing so, I believe they accomplished what they came here to do. The debates eventually led to mud slinging. The end result is that many have been turned off and have said good bye. This is a shame because one lost lyme person is one too many.

I think some old timers (for lack of a better word that I can think of at the moment) may have taken the newcomers approach as too foward and unsubstantiated because of their newness to the board (although they may not be new to the disease). The newbies perhaps getting the feeling that they may not be allowed to be as candid as they would like or as outspoken for fear of being reprimanded or criticized by some.

Perhaps the oldtimers are fearful of newbies becauase of the trolls. Troll alerts was the very first topic listed the day that I logged on. I was perplexed and naive because I had never belonged to this kind of forum. I didn't think it possible and thought it was a joke.

Then as I learned more about the politics of this disease and the reasons that I had not been diagnosed for 20 years - and not for trying - I realized that the troll/spy thing was a real possibility. Therefore, I respect the danger of its intention and try to move within the forum with caution. I am now aware that we have an enormous dark force with tentacles reaching out to all kinds of dangerous enemies that try to undermine Lyme advocacy.

It think it's impossible not to be cynical here. W e have taken the personal component out of electronic communication and are trying to read others where body language is hidden. Body language gives us 80% of our clues into dialogue with another person and whether that person is communicating in an "honest" way.

It is a leap of faith for us to try to assess others inentions and goodwill here in this arena. We are forced into this position by virture of our disabilties. Many of us are isolated; unable to get around; lacking decent social opportunities and interactions; and the chance to meet others who may validate our experience. So this one avenue we are left with and I consider it a blessing. Many days this is all I can do is just log on and try to gather a kernal or two of helpful of info. I feel lucky that I found my way here. With it's so-called imperfections, it is still amazing. I am grateful and believe that the info. that I am learning here is extending my life.

Oldtimers have a lot to give. Some have been around so long they are able to offer how the political scene has changed and how this effects us. They have longer experiences with LLMD's and their recommendations and probably most important they have their spirit, and are willing to share this so that others can discover how to survive the mental game involved with this disease.

Somedays, that maybe all a person here needs. For someone with experience and compassion to reach out to someone else in pain, who may even be getting ready to call it quits. I have seen and experienced the reaching out from others here who have or are going through something similar and actually pull us up and give us hope.

And beside the correct combination of drug cocktails and alternative therapies needed for this disease, the next best elixor is hope. We can not underestimate the power of hope during this process because we all hit dead ends and roadblocks more than any other medically ill group.

Without this resource, I know that I would be lost or dead. My treatment couldn't have come soon enough. How many others out there are in the same position looking for a beacon. We KNOW the numbers are high since it is undereported.

We have lost some good people lately with what I consider invaluable insights. We lose. We lose their knowledge and guidance. I don't blame them because the negativity is draining. I am asking them to reconsider because of the tremendous out-reach potential they have, based on their true commitment to helping others with this disease.

I am suggesting that lack of maturity that I (and others) have witnessed here lately is perhaps related to several factors coming to a head. I think that there are very REAL anti-lyme people on this board. I can only guess at some of their reasons for being here, but of course one would be to create discontent. Their thought is that If they create enough havoc, the system will fall apart.

This is their goal because we are a very real threat to their livlihoods, depending upon where their real affiliations are. Let's not fool ourselves...Goliath incorporates ins. cos., ducks, politicians, scientists, the medica and anyone else who is either making money off our suffering or who is keeping the status quo going out of fear.
But David found a way to bring Goliath down and we need to find that achilles heel as well.

As sucky as it is, this is the test that we have been blessed with. We need to find meaning in our disease, process it and do the best we can educating others a long the way. The reason I believe it is our obligation is because of the enormous impact this is going to have on our society.

Unless we get this under control in the near future, the ramifications to ourselves, our children and our families is going to be devastating. I think it is already at that point, but I think that few people want to acknowledge this.

If one looks at the incidence of autoimmune diseases, fibromyaliga, CFS, ALS, MS, autism, ADD, other psych issues like anxiety, depression, bipolar, scizophrenia, allergies, chemical sensitivities, cancer, etc., especially in the last 50 years, it is undeniable...something is happening in our environment. Than look at the incidence of lyme cases as well in this general time frame - there are so many overlapping symptoms and disabilitites - no coincidence in my opinion. I don't want to suggest that all of the above ailments are related to Lyme, but to avoid looking at any connections would be remiss.

The conflict that is happening on this board is unproductive. I am not saying that the sparring that occurs during some conversations is unproductive because different points of view are helpful. There isn't a magic bullet for our disease, so we need as many angles as possible to look at it. What I am talking about is the lack of maturity that I see happening when some don't like the direction or tone of some of the conversations and a conflict errupts on the board. Conflict can be productive, but I believe the arguments have to be handled delicately. No character assinations. Keep it fair and mature. Let newcomeers speak up - they may have a fresh angle. But, newcomers should give a certain respect to the veterans - they have stuck it out here for a long time. It doesn't mean that all of their ideas need to be embraced, just that they have a history that shows their commitment.

Keep up your guard. There are peeping Toms here. There are outside forces opposed to Lyme. We are being brow beaten by others who are not legitimate and are preying upon our sensitivies, vulnerabilites and heigtened emotions. We have to become more clever than they are. They will engage us in unproductive topics that lead to heated conversations and eventually personal attacks. We can not allow this to happen. If they beat us down, and we leave, they have won!!! We can not afford to let them win.

I hope not so sound like a preaching do-gooder. I am truyly saddened by the lack of cohesiveness I see now, and that I first witnessed when I joined .

and hope to inspire others to consider their true intentions when responding to others.

We all come with different levels of health impairments. These variable can be quite prnounced in some people one day and not the next. We can not ignore that our mental faculties have been injured to some degree or another. I didn't want to admit it, but I had to take responsibility for my immature and inappropriate actions towards my family members this year. It was productive conflict though. I was able to get some neuropsych testing and counseling and realized where I had deficits that were interfering in my day-to-day life, especially with regard to communication. All the brain impairment is too great to go into here, but I realized that I have beein working in the dark, because i thought I was functioning in healthy manners, but really sabatoging myself.

Just thinking...

------------------
best regards and blessings,
paisley

Paricualrly this...

Unless we get this under control in the near future, the ramifications to ourselves, our children and our families is going to be devastating. I think it is already at that point, but I think that few people want to acknowledge this.

..coupled with TC's thread topic post, I feel many of us should think on.

IMHO.

Yes, Tincup has been here for centuries. I know she has at least 3,000 more posts than me. And hers are more labor intensive than mine!

She would spend a LONG time with each newbie or member who needed some in-depth help. I always marveled at how much time it must take to be so clever and witty, while getting her point across!

[actually it would take me twice or triple the amount of time it would take her, since she's so naturally creative and clever!]

Yes, we all need to do what cave's post suggests....and do it everyday. Thanks again, Cave!

We'll get thru this....and if this place is more closely moderated, Tinny will be back.

You WILL, won't you Tinny??? Hope so!

And thanks for letting us know you'd be gone....'cause we DO worry!

Board moderation is a skill...One that my husband did for years for a living....not a hobby or a part time deal. Professional moderation is not what we have here...It's not what we have ever needed....No insult intended to the current moderators. Simply, this is an example of why the skills are needed.

I don't blame Tincup for her choice...I have always deeply respected Tinny and will continue to do so.

Yes, the board has gotten completely out of hand. I've just been here 1 year but seen many things.

Paisley, wow, very well written there.

We hope things can calm down NOW and things get back to the way they used to be ..... educating others with lyme info.

TC....going to miss you & your wittiness. Hope to see you in the near future.

To quote from my refrigerator magnet--

"Some people come into our lives and quickly go. Others stay for awhile and leave footprints on our hearts, and we are never the same."

You will be missed.

Tinny, I feel the same, only I got that feeling last summer and stayed until winter and then I'd just had enough critizism and left.

Trout, I love what you said above...

anyway, I'm doing much better and hope you will "too." Pardon the pun.

You have touched and saved so many lives on this board. It hurts to see you so upset. I will never forget my first post, and the respones from yourself and other long standing posters.

I hope and pray one day very soon we can get this board back to the way it was 2 years ago.

Until you feel comfortable coming to this board again, I wish you the very best to a very special lady.

I will think of you often especially when I hear "Beer for my men and Whiskey for my horses!!"

Please don't gooooooo.....I'll miss you so much. I just checked this post only because it was from you!!!

Seems like I've missed alot the past couple of weeks.

Did someone hurt your feelings?? You let me know and I'll apply one of my old hillbilly grandpa's favorite rememdies.

His answer to just about any adverse situation was, 'I got a shotgun and a shovel'.

Add to that an Alaskan/Alabamian redneck's dilapidated barn chock full of bags of lime (the good kind),and you've got one screwed up individual on your side.

I'll never forget you encouraging me through that horrible Minocycline scare I had with the chest and neck pains, facial swelling,etc.

I know it was late, late one night or early morning and you told me 'no one kicked the bucket on your watch', remember??

Whatever you decide my friend, I'm with you.

Very rarely in one's lifetime does an individual with your vividness, realness, tenacity and overwhelming kindness waltz into your life even via a discussion board.