luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
People are again leaving lymenet to avoid persecution and I hate to see it happen.
Here is what I gain from Lymenet.
1-Information. Both allopathic and alternative.
My personality type is to study and research. I want to hear about everything, no matter how cutting edge or far fetched. I will never join a trial group to test new drugs nor will I rush off to Germany or anywhere else for the latest, greatest, cure or treatment. BUT I am very glad there are others who do. Without them, we would never discover anything. Nothing.
I am not jumping on any new drugs until they have been out awhile to see if any deadly side effects. I can't afford to rush to Mexico, Germany or even Washington for treatments.
However, I eagerly wait for all those brave, well-endowed people who are willing to take a risk in hopes of finding the cure, to bring us back their results.
I do not want any prima-donnas bashing them when they have a less-than-perfect experience. I need to hear the truth, not a distortion of truth.
It is my sincere hope that the new drug or new alternative will be successful. Their success will ultimately spell my success.
I feel the same way about allopathic drugs.
Everyone should be able to voice their opinion in an appropriate manner even when the opinion does not mirror mine and dares to question some very good doctors.
No one should get vulgar, threatening or insulting and we should be able to hear the concerns and constructive critisisms as that is how we will grow.
Many times I have had to wade through some childish, bullyish and crude behavior in an effort to hear both sides of the story. Sometimes it gets out of hand.
I was glad to see some of the posters of old who were determined to squash anyone and anything not allopathic leave this board. I don't miss them one bit.
But now I am sad to see some alternative supporters behaving in the same manner.
I don't want separate alternative/allopathic boards. I feel we both suffer if we take that single sided approach. We need to hit this disease with every available weapon and we need each other. Lymenet remains the best board. I have visited some others and find them terribly lacking.
LNE just looks like clones of each other. They don't bring a well-rounded source of information to the board.
I haven't visited some of the other boards. I would probably be very well received on any alternative treatment board, but then I would miss out on the allopathic progress being made.
I trust the ILADS doctors. They are trying to find answers for all of us. They could just treat the 85% that respond well to abx and kiss the rest of us off if they wanted to, but they are looking at every possible answer, even the far out sounding ones and I applaud them for that.
To function together we have to be respectful of both sides. I hope everyone can find a way to get along and perhaps a tougher skin when needed and moderators are there to jump in when posters just get out of hand. Thank you for moderators who are not paid for their efforts.
Thank you God for Lymenet as it gave me my first and greatest resources for healing. Today I enjoy better health than I did when I was "healthy".
Luvs (this board)
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Luvs, very well stated. I am the same type of learner. I need to study and digest what I've studied before making an informed decision.
This goes for shopping decisions as well as medical ones, and many others in between.
I also like this board for the breadth and depth of info available. If something is becoming toe noxious, I just SOB.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
well said luvs
The expereinces of others that share my disease is what makes this board so great for me.
I can research something till the cows come home... and might seem that logically it should help ...might be the best logical choice according to xyz...
but if people with some of my same diseases got worse or nothing from it ...
i might reconsider... and reinvestigate.
also it is always comforting to know that i can ask a question about a symptom and SOMEONE else has had it...
that is a powerful thing... and knowing we are not alone is powerful...
This board's strength is the sharing of our expereinces good or bad and i hope the climate of lymenet allows for all expereinces to be shared.
posted
Well said, Luvs.
Posts: 984 | From San Diego | Registered: Nov 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Well well stated Luvs2Ride. I don't think there's much else to say. Thanks for the great summary.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I hope no one leaves Lymenet. We benefit from hearing all the dissenting viewpoints.
I would just like for everyone to keep things classy. Let's dispute treatments, not attack each other. There is no reason for any of this to get personal.
If someone singles you out, just let them take the low road. Don't even dignify it with a response. They are only making themselves look bad.
It is one thing to dispute technicalities and medical jargon, but another thing to single out an individual.
If people want to spar about one threapy or another, that's fine, but let's treat each other with the utmost respect and not let the attacks get personal.....I would hate for someone to get kicked off, then not be able to share their valuable knowledge and experiences with all of us.
I appreciate everyone here!!!!!!! Hugs!
Posts: 4590 | From Midwest | Registered: Jun 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I agree...
Sometimes you just have to be a bit thick skinned.
I don't mind if someone wants to challenge me about research or my opinion. I'm open for debate. I don't mind if people question if I'm selling something (which I'm not).
I don't know why people feel they have to attack someone on a personal level just because they may have a different opinion. That doesn't make sense to me.
What can you do? This is an open forum & some people are a bit psychologically unbalanced. It's not my fault...
We have to take the good with the bad.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
Believe it (or not) I agree 100% with you Luvs. Very well said, you covered all the bases, imho, whilst not ****ing off one side or the other. !!!
You also acknowledged that the "other" side is indeed behaving as the first side did, and that is something I don't think many would have acknowledged in such a clear fashion, as you put it. I think how you worded this was well done.
For a bit of perspective from a long winded lyme brained person, can I add:
After the initial excitement of finding a group of like-minded people wears off and/or thin, you find that you don't actually have hours and hours per day to "research" all that the internet has to offer in lyme disease information. This means that you must limit yourself to reading/researching a few select boards/places on the web.
I believe that lymenet covers a lot of the bases, from information, to support. If you choose lymenet, and perhaps one or two other places to do your reading/research, and you go there everyday, or every other, or skip the weekends, etc, you find that a lot of your time is taken up JUST DOING THIS.
If you find yourself wanting to go beyond this, to many other places, you will miss some things. You can't keep up with all the places, juggling too many balls means that something will fall down. That is where the frustration comes in.
Frustration beyond description--family members get left out, or behind, friends, etc. As with all things that you give your time to, "somethings gonna give".
In this realization, you find that you MUST limit yourself. I tried to switch to other websites, but I always came back to lymenet. It is just where I feel comfortable, and where I found the most people at who were close to how I was/am.
That said, I would most appreciate it, very much appreciate, if there was a separation of the 2 therapies. Western, and alternative.
I have of course, read and read and read the alternative posts. I became enraged when I felt someone on one of these threads insulted and condemned another person who was posing a question to the discussed therapy. I could not rationally discuss how I felt, and I posted my anger. I was then attacked. It was nasty. I stopped posting, and just continued reading. I still read this thread, but feel it has not become something I'd continue to be interesed in.
That said, I would appreciate, really appreciate a solid, obvious separation of these 2 worlds.
Then, it would be so clear (to me, to others) that there is a difference, read what you like, easy enough to separate the 2 worlds, and do your own choosing. Not a mish-mash of ideas/idealogies (spell?) and I would find much comfort in this.
My opinion. No need to bash me for it please. Julie
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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DebAz
Unregistered
posted
All i can say is I hope something happens to resolve the obvious problem on this site and I think that if people put their heads together they can come up with some agreed upon solution that allows both sides.. ( it is funny it is worded that way because I can bet that the majority of the board is of both sided minds) it must be a few that are only one side or the other. So it sure would be hard to arrange that. But maybe if everyone agreed to not make the posts personal but just state your experience and knowledge and leave it at that. I too have to sift thorugh so much jargen that it is getting tiring to get to the meat of the issues. And I value the issues and that is how I have learned and made choices and I VALUE muiliple opinions of ALL Colors and Views to help me on my journey. THANK YOU ALL D
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bettyg
Unregistered
posted
luvs; outstanding post! gotta keep reading quickly; 18 min. left of my library time!
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i've joined other sites now-but it is hard to learn to use them for me.
i wish the bad stuff here would just stop. it's much easier for me to come here-but not when i have to wade thru so much stuff to get to what is helpful
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I am always open to whatever works.I am concerned though when someone requests for a viable protocol to be removed from lymenet never to be discussed again. Very telling.
If it weren't for me finding the Salt/c protocol on Lymenet, I really don't think I would be here.
Very scary, especially when it has helped a lot of people. Warnings are fine, but scare tactics are a whole different ball game.
Gael
As in any politics different views are very important. It allows for people to do their own research and make an informative decision.
-------------------- 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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