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Post by Mad on Jun 20, 2005 21:10:55 GMT -5
Please share what you feel about Lois and the NUSPA board.
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Post by Jus me on Jun 20, 2005 22:04:18 GMT -5
Love em.....nuff said
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Post by Mmeme on Jun 20, 2005 23:34:57 GMT -5
DITTO TO JUS ME'S LOVE EM,,,,,,,,AND BOY OH BOY YOU'D BETTER BELIEVE IT,,,WHICH CAME FIRST YOU mad-guest OR LOIS ? 'NOUGH SAID !! mememememememem=singing to Lois and all of us that suffer
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Post by ANTHILL on Jun 20, 2005 23:50:32 GMT -5
It is the polices of this board if you cant say something nice about someone don't say it in other words no deformation of Character I have a delet button and I will use it
what a power hungry monster Kerry and patti have created *evil laugh"
I will say this nice thing about lois and her board she and board was there when I needed her most when I had no where else to turn saving my life that's a pretty good complement dont you think?
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Post by jwf on Jun 21, 2005 0:18:06 GMT -5
Hi ant, mad guest, & meme, I'll try to measure up to your high standards here, ant. If you don't agree with the NUSPA credo, it can be a very unpleasant place to post. Credo: Bugs first; all else follows. In all fairness, I read between the lines on the NUSPA board to discover that my wife and I had Lyme. The connection with Morgellons was hidden at the time and the word Morgellons was censored. We are well now, so I don't complain loudly; just feel concerned about others who might not make the connection. Blue Skies..............John
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Post by ANTHILL on Jun 21, 2005 0:27:48 GMT -5
I do believe a severe scolding is in order for jwf *ant shakes finger scold! scold!*
true nuf said
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Post by Ed on Jun 21, 2005 0:28:31 GMT -5
ah........... Ed
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Post by debbie on Jun 21, 2005 6:44:06 GMT -5
Hi Everyone
I have not commented for a while. But really wanted to respond to this. (It came from the heart)
I don't want to see something bad posted about anyone. I totally agree with ant & loved the evil laugh ant....... a lot of us met at NUSPA and it is a wonderful board. and I think your compliment was sweet ant...
JWF said it .... We were once able to post freely at NUSPA, the words Morgellons & Lyme came up frequently. Then one day Lois decided that Morgellons & Lyme could not be talked about and things started to get deleted....
From that board a few of us ended up here. Still the board is a great place. I don't post, but I do read. So ONYA NUSPA and Thanks Kez & Patti, for Lymebusters. I feel i have freedom of speech and JWF I am still taking the cats claw...
One thing I will say, is I don't have lyme or hope I don't, ( I feel I would have a hard time trying to convince any doctor her in oz, as we don't have the same strain... so we can't get infected....
I had a itchy scalp, hair loss, lesions, skin changes & the problem of the night time itchies, where it feels like bugs crawling on you, cobwebs in the eyes, lots of eye itchies & problems, stinging biting, granules, fibers and more..... But..... So many of the people I was reading about on NUSPA board at the time were suffering like me (so many I related to & I also related to some images posted of fiber type balls I had seen under my microscope, and I live in australia).... I watched a lot of these people end up with a lyme diagnosis... Then around that time the censorship started to happen at NUSPA (Anything posted with reference to Lyme or Morgellons was being deleted & the emphasis put on springtail. I don't have the answers... But my thoughts & listening to others made me feel there is some connection with all these lyme positives...
Today, my mind is not made up on what the answer is. But the people who post there still have the same problems.... and some good answers, just like the people who post here...
Take care everyone........ wishing you well.......
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Post by Jane D on Jun 21, 2005 19:19:34 GMT -5
Ah..........Ed. Wondered if you'd show. That board helped me to get to my Lyme diagnosis..so that's a good thing, and once upon a time I felt I had friends there. I have Lyme and once I added artemesia to the abx,(recently) well, my my my all hell broke loose. Still got crawlies, esp in scalp. Clearing in other places and I hope, my mouth!!! Cat's claw has made a huge difference, now doing Hulda' Clark's parasite cleanse with wormwood, cloves and black walnut tincture (and of course the cat's claw). parasites love Lymies. parasites love Jane (sigh).NUSPA is okay and so are we!!! Jane D.
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Post by Administration on Jun 22, 2005 0:10:01 GMT -5
Well, I feel that both boards are desperately trying to help people and also looking for an answer. If they at Nuspa feel that they have found their answer, I give them all the credit in the world. There is no way either Patti or I can speak for everyone affected with the Morgellon symptoms, so really, who is to say they aren't infested with springtails.
I know many do have Lyme, including myself and Patti, so this board gives everyone else infected with Lyme that alternative to speak here and not take up Nuspa's space with our Lyme talk.
I do feel people who are still searching for what they have need to read both boards to gather as much info as they can in order to help themselves.
For now, I believe this still remains a mystery. Some are certain they have springtails, others have tested positive for Lyme, regardless, the "why and how" is still waiting for someone to stumble upon it. So I think everyone should research all they can wherever they can until we get an answer.
Kerry
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Post by special guest star on Jun 24, 2005 11:23:41 GMT -5
I find the perceived rift between boards a little disconcerting. I've read snide comments about each board on each board. I don't understand it: don't we all want the same thing? What is it that causes people to gravitate to one or the other and "pick sides?" I've asked this before and never got an answer. I'm not trying to cause trouble, just to understand it.
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Post by ANTHILL on Jun 24, 2005 12:48:46 GMT -5
Well' my wise grandfather said it this way: it takes all kinds to make a world and you are lucky if you find two people that see things the same
The censorship of two Marjorly important words that were being discussed morgellons and Lyme is a big why
Its kinda hard to have a discussion about morgellons or Lyme without the words morgellons and Lyme wouldn't you think? they are vary important factors in this
I my self think spirquetal disease's like aids lupus venereal diseases malarial Lyme herpes and a few others should be studied in unison more bang for the buck I would say
Yes" it would be great and Ideal if we could work together but This ain't the garden of eden And this ain't the summer of love Just think of it as two political party's in a democracy things don't aways get done as fast as we want or exactly the way that we want but they eventually they get done and hopfuly soon!
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meme
New Member
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Post by meme on Jun 24, 2005 23:15:25 GMT -5
All my FRIENDS(stressing that word) I met on the NU(unidentified)SPA,,can't we all just get along,,,but anyway,,,who is MAD to start this old sore to bleed ? I think maybe just maybe the deletion or censorship was to separate the identifying of the problem so an actual name or cause could be developed. If we all have/had Lyme,,who would listen to the complaint about crawling sensation. If we have the crawling identified and then added to Lyme,,,better for those with than those without. Hope I'm making some sense here. I read and post both places,,I feel welcomed both places,,,maybe I missed the harsh push of the delete key,,,or came on the scene with bugs in my eyes,,but what ever the case may be,,,I don't think we'd be where we are today without NUSPA,,,,and keeping the words down I've got to believe it wasn't personal. She's too nice of a lady,,,,she had/has her reasons for wanting not to jumble it all up together and it's not selfish I don't think,,,I think she's looking at those who maybe need to IDENTIFY with NUSPA when their test haven't been positive or they don't have the money to get the test(that would be mememme),, ok,,,,ok,,ok,,,BORAX box is down,,,,SALT box is closed,,,,,Cats Claw is purring,,,,MSM is contacting MSN to shout it to CNN,,,,love you all,,,,,especially Jwf,,,,without you I definitely would be a loon by now,,,,Ant,,,your humor has helped heal,,,Debbie your softness has quited me many a times,,,now where are the Kleenex,,,oops don't do Kleenex they stick to my fibers,,,,,,I'll be a posting and a reading over the blue yonder of Buster and Nuspa. M=memeememem,,,PS I'm trying to do the Swartz,,, friends ? comments please !!!!! ??
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Post by Patti on Jun 25, 2005 9:45:44 GMT -5
I wasn't even going to respond to this thread but I want to thank everyone for keeping it clean and sensible. I think most of us are way beyond this now, although a few still try and stir things up every couple of months. Maybe they will eventually give up and realize we are not about bashing anyone here.
If we see anything derogatory about anyone else, it does get deleted.....we are more focused on getting well than who is right or wrong. We all have our own theories and you can't change someone whose mind is already made up, so why even try? Only time will tell what the real answers are and I'm just thankful we have Mary and her group who work so hard trying to help us all.
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Post by special guest star on Jun 25, 2005 22:12:53 GMT -5
I guess being new "to the family," I don't see things so black and white. In both groups, I see:
A.) A mass of people coming together due to a common ailment born of mysterious circumstances.
B.) A list of symptoms and horror stories which concur overwhelmingly more than they even slightly differ.
C.) An "epidemic" of Delusions of Parasitosis mis-diagnoses and an overall resentment or mistrust toward the medical establishment.
D.) Desperation that would floor even the most callous souls. And the mental stress that almost always comes with that desperation.
Are we all so certain from whence we gained our plague that some of us have fwlt the need to choose sides?!?! Draw a line in the sand? And please understand, I'm not criticizing anyone in either group--we are stressed individuals--the absolute epitome of such a person if there is one. It's understandable that tempers flare from time to time. Why, I've have 3 posts deleted here and 5 at SP, so I'd say as far as I'm concerned I'm equally inflammatory in both groups (that Bush thread here would tie the score for me if it "goes away).
I guess, in such a rabidly pro-DoP era of medicine, my opinion is that we due our cause immeasurable harm by being divisive. We look like a bunch of nutbars fighting over a ball on the playground. Like there's credit or a rep at stake. The only thing at stake is the most important thing: our health.
I have a friend who used to post here. In fact, I act like I don't know him on the boards, but I post at his house because we're all sick and I don't have a computer. He read a bunch of stuff on a blog, then dug deep into some old posts here and on the other board and was disgusted and disheartened. Hooking up here was a banner day for us--OTHER PEOPLE HAVE THIS, WE'RE NOT INSANE! But with that Popular Mechanics article, his own experience with doctors, and then the realization that division in our cause means so much more with what's a stake, and he was like "screw this." So, he and his wife do their research on their toy microscope, taping bugs to the scanner and reading everything they can find, plugging away even after the moxidectin put us all out of comission for a few days.
If it drives people away, it's just not good. Why can't we have a dialog that has Lyme and Morgellons and flufferflip beetletwat? I mean, the ultimate goal, as I understand it (and admittedly, I'm not very bright), is to find a common pathogen or cause for what ails us, ALL of us. That's why I came here. That's what I need. I'm pretty sure I'm not alone in the way I feel (besides the itching and the crawlies, I mean).
Peace
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Post by Lisa on Jun 26, 2005 18:44:31 GMT -5
Well, if you are talking about spiderlegs, I for one will miss him. He had a good head on his shoulders.
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Post by Administration on Jun 26, 2005 21:05:06 GMT -5
I dont know what posts of yours have been deleted here. We are very liberal with the posting and have only ever deleted personal attacks on others, whether they be people from this board or Nuspa. We also ask that you dont post a Drs personal information unless you have been given permission by them. I feel if theyhave a website on the internet, well, then they are already advertising for themselves so I would think thats ok.
I see no line drawn in the sand between us and Nuspa.. again I will say. Nuspa was looking moreso into Springtails, and Morgellons and Lyme talk was taking up much of their board, so this board became the alternative. You can talk about bugs here, no one has said you couldnt.
Nuspa is where most of us became friends.. if others have problems with them for some reason, they need to take that up with Lois, or just choose not to go there. If they choose to bad mouth us there, its their business.
Our goal here is to provide support to sick people with what we have learned. Nothing more.. Give you all a place to talk and make friends so you know you are not alone. Many go to both boards which is fine. I would hope that they do to learn as much as they can.
So I have no idea what this is all about but personally, I feel, if you have something to ask at Nuspa.. ask it.. If you have something about Lyme or Morgellons to ask here.. then thats what we are here for.
Kerry
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Post by special guest star on Jun 27, 2005 20:38:23 GMT -5
No, it was a post that directly asked if there was a rift between both groups. I posted it in general and it went away. No problem. I don't know why I was so dramatic in my last post, other than being deprived of sleep...heh...
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guest
New Member
Posts: 0
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Post by guest on Jun 27, 2005 23:20:22 GMT -5
I think Lois does a really good job at NUSPA. From what I understand this latest "rift" if you want to call it that, obviously what sparked this thread is because Lois is refusing to pass email addresses because of the spammer and she has to keep the board on moderation. Somebody got mad because she doesn't want to pass an email address to someone who may be the spammer. It's not hard to understand why, what I don't understand is why someone got mad about it.
That board is pretty open there are thousands and thousands and thousands of messages there, apparently not all of them have been deleted. NUSPA is a great site and has helped lots of people, I hate this fighting all the time.
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Post by Administration on Jun 28, 2005 9:10:20 GMT -5
Well. Ive been contact with all the moderators and they say no one deleted your post from the general board. I cant imagine why anyone would? The message board itself has just had an upgrade, maybe at the time you made the post it was still working out it's"bugs'? I know I couldnt even get on here for a day and a half.. and I mean after the board was back up.. Sorry for any trouble you had. Im not too thrilled with the new board myself.
As far as any rift you speak of over at Nuspa.. it has nothing to do with us here. Someone was causing problems over there and they had to put it in moderation mode is all. No biggie... when the offending person leaves that board, it will be back to normal I'm sure. ................... Kerry
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