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...

you have helped me a number of time's ,here on lymenet.so i know you have been here longer than me.

hope you are better. , gary

Thank you for taking the time to express them.

Mo

pain is still bad. i have to see a hemo doc and an ocon doc for the infection i have,somewhere.

i just hope to God,that it is the lyme.i can't take another hit from another disease or infection.

dealing with the lyme,fibro? and rsd are enough on my plate. i am extremely tired.(infection , more than likely).

the pain is away's there.just differant l;evel's and differabt symtom.....

i am glad you are back writing. hope you are coping well.this place seem's like and unflushed toilet at time's....maybe your commentary will help.

i will let you know what's going on. blood dox appt. on thursday.......be well , gary

You said it all - the reason why I actually no longer read everyday.

When I found lymenet in 12/04 I heard distinct voices but the tone was one of encouragement and sharing discovery. Not so now.

I like that you are not judging but attempting a rational analysis of the many factors that may be contributing to this negativity and shouting......

Thank you for the insight. Well said, and, I imagine an enormous effort.

Gary, You are often in my thoughts-I so hope better times are ahead for you. Don't let the ducks fail to adequately treat you!

I'm pretty new here, and when I first came on board the atmosphere was perhaps more supportive. Lately, some troll action and reaction.

I can't compare the board now to years ago.

I can say I find this board to be immeasurably helpful and supportive as it is, faults and all. Before I was alone. Now I have all of you.

Below is what I thought to be most important in Paisley's post-let's not lose sight of it.

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.

editing to add: The main reason I still hang out here is because I wanted to give back. The help I got when I first arrived in the fall of '00 was my saving grace.

Lymenet was my LIFELINE. Pure and simple. I want it to do the same for others....over and over and over again.

I have found many wonderful and truly awesome friends here....some will be lifelong friends. This site has given me far more than I've given it.

Plus, sometimes what's posted is not the sum of all the "members" or readers-- probably only a portion of all those who visit here post things. It's just that the inflammatory or unusual posts get the most attention.

Over the last few years, I've seen some members change, too. A few who were pretty level headed got aggressive, impulsive, whatever, and I wonder if it's just another lyme sx. It's almost like you can feel people deteriorate. And often, the ones who get healthy, move on. So the board is not a good cross section of ALL those infected with lyme, but more accurately represents those of us unlucky enough to have presistent lyme or were misdiagnosed. (aren't we lucky!?)

Anyway, you raise good points. Hope you're feeling better.

What a shame.

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

You concern and compassion came thru clearly.
I believe what you stated is the objective of the board.

"To give back what we have received".

This is so much more important that the war of being right.
Sometimes "being right" is not the best.

We are to impower Lyme victims, not confuse them with our own personal issues.

Sometimes the lens that we look at the thru can be distorted and we don't even know it.

Thanks

Carol, Mo, Pab, Valmemom, Janet, Lyme2, Jay, Cindy -- you had some nice things to say, thank you. I appreciate the kind words. And, that is something I miss...more kindness from others. Just in general - whether it is on the highway or on this forum. What is the harm in it? It's sad that this supportive environment is a place that some are turning away from.

Cindy,
you ARE the one who directed me here. I can't believe you recognized me from so far away AND anonimously. I hope that I haven't ever said anything to offend you in the past on this forum? I would be so embarrassed now. Have you known before now?

I regret that I never took the time to write a formal thank you note to you. I am so appreciative of your guidance. I'll never forget that afternoon that I sat on the couch and cried to you. You were so patient and understanding. I'm sure that in your heart you knew that I had lyme disease and knew exactly what I needed to do. Since then I have been able to do the same for others.

I am so grateful that I had the chance to speak with you; that you just happened to mention your disease to M one day; that M's mom mentioned it to M; and that my mom mentioned it to M's mom. Crazy the way it worked out. Again, it's just another example of my belief that there are no coincidences. Please give me an update as to how you are doing if you have a moment.

Gary,
what is going on with your blood? Doesn't sound good. Have you ever had a liver tox panel done?

Also, just wanted to run this by you - I don't know if it will make sense or if it is something you have been tested for either - my LLMD tested my blood by a special blood lab that specifiically deals with blood problems.

I don't know why he thought of testing me, unless it is a routine tests he runs on all his chronically ill patients. To my surprise, he found a blood disorder and I am cllotting too quickly. There is a specific name to this, and someone actually wrote about it recently on this board, except that I can't remember it right now.

The end result is that my organs and tissues are not getting enough oxygen because of this condition and this allows the spriochetes and whatever else is in my system (we've identifed mycoplasma so far) to thrive. I was sleeping 36 hours a day.

Apparently, many chronically ill (especially Lyme) patients have this condition. Don't want to get you fired up about something else - I just want to make sure no stone goes unturned. I'm reaching for anything to help you. I know that you need to go through insurance though. I hope you catch a break soon. You are in my prayers.

I've actually been here for 3 years or so (first as aaronkatie) but will be one of the ones taking a break from posting.

anyway,thank's for remembering me paisley.as for the blood infection,it's best for me to wait till i see those blood doc's.

this infection has increased over a period of 3 month's .i think it was there when i had the last knee surgery.was taking doxy at the time.

it has worsened since.i have been getting cbc test's every few week's to monitor my liver for all the percocet i take.and now because of the neuronyin i started taking.

neurontin is up to 2400mgs daily.that goes along with about 100 perc's a week,the durgesic patch 100mcg,every 48 hour's.nortriptyline ,lexapro and dilantin.

all this is for my documented lmye arthritis,documented fibro? and rsd.and let's not forget my right knee.that is bone on bone pain.hope none of you ever experience this.

next week i see a rheumotoligist.i am taking him the postop tissue biopsy result's from my last knee surgery.you would pay me,to have such proof of lyme disease.

the orthopedist sez it is highly positive fr lyme.i have been lied to by 2 infect. doctor's.and the same rheumy i am going to see on next monday.

that's over a period of almost 3 years,while i rot.now i have proof nobody can refute....my day is coming.

sorry paisley for so long a post.i just got carried away.....gary

You were probably one of only a few people who were actually nice to me when I first came on this board. Most of the time the "old timers" wouldn't anwser my questions, but you did. Thank you.

I realize that there is alot of paranoia about new comers. I do understand why, but I think if most people would just take a breath they can stand back and see the motives when people do post.

My sister is one of the "old timers" (over 5400 posts) who doesn't post much anymore. Not because of trolls, but because of meaness and imaturity of others. I don't really blame her, but it is a shame to lose her insights for newbies.

Gary, I hope you have better days soon.

my only way to get in touch with you.need to know still of rsd at time's.your the only one else with lyme and rsd.

so many thing's coming to me in the next few day's.i don't want to make a wrong move.please hope you don't mind........gary

Thank you for stating what you did. When I joined last year, there was squabbling going on but nothing like the last 3-4 months. I too hope this clears up soon....

You folks have EDUCATED me so much since my chronic lyme MISdiagnosis of 34 years received 1 yr. ago last week. Support was amazing and the guidance was very much appreciated.

Thank you for stating what you did. When I joined last year, there was squabbling going on but nothing like the last 3-4 months. I too hope this clears up soon....

You folks have EDUCATED me so much since my chronic lyme MISdiagnosis of 34 years received 1 yr. ago last week. Support was amazing and the guidance was very much appreciated.

Thank you for stating what you did. When I joined last year, there was squabbling going on but nothing like the last 3-4 months. I too hope this clears up soon....

You folks have EDUCATED me so much since my chronic lyme MISdiagnosis of 34 years received 1 yr. ago last week. Support was amazing and the guidance was very much appreciated.

I was off for about a month or less and haven't had time to read old threads--but my heart was broken when I got onboard and saw all the trouble. Like you I lost my password (you can email and ask for it from the moderator).

Feels very dark here. And I know when I discovered I had given my two children Lyme invitro--everyone here might have saved my sanity. My STUFF was leaking out all over. I was a MESS.

I want to offer that comfort to others now that I have a handle on the fight ahead.

I thank you for your words and wisdom.

...and email me and tell me what happened! :-D (kidding)

Sometimes in the past I think people got on each others nerves because we all have some form of ADD probably and our mechanism for filtering our thoughts may not always work. But like you I think there are evil forces at work. Greedy people.

Thank you again for your insight.

L