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» LymeNet Flash » Questions and Discussion » Medical Questions » Cannot believe what is going on with Lymenet

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Author Topic: Cannot believe what is going on with Lymenet
Health
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I have been here about 4 years, and cannot believe what is going on here at Lymenet.

I cannot believe that they have banned members and let others back on. I want to bring something up in public because it is very upsetting to me and I do not want to post anymore on lymenet.

Gigi, it is you and your attitude sometimes that I cannot believe they at lymenet have allowed you back on.

I will share something with you all and want you all to know because it is because of you ALL that Gigi was allowed back on.

I had a horrific experience with mercury removal, 8 years ago, and I share it on here occasionally to help others and to warn them to be careful and go slow with mercury removal.

I have had Gigi, after she was let back on, tell the board that I ALWAYS paint a very dark picture of my experiences, and that when you are under the care of Good Dr's Dentists this does not happen.

Doesnt happen? I am being told that what happened to me does NOT happen, and that I paint this very dark picture of my experiences.
I can say that my experiences have been MORE then dark, they have been suicidal almost, and

I was working with very good Dr's and Dentists.
I DONT NEED THIS from someone on here that has HAD lyme and is better, I dont need this, do you get this all of you?? I am sick, want to get well, come on here and have to deal with this BS.

Lymenet has saved my life along with my LLMD,
Lymenet is like a little gift from GOD to me,
at the right time, but now, I just dont need to deal with this from a fellow poster.
WHERE is the goodness in the persons heart, not speaking to me like this, buzz off.

For me to come on here, post to help others to be careful about Merucry and have GIGI call me down in her way,

I am tired of this, and all that support her, this is so terrible, it is not a place I want to be anymore.

Not only was the negative Nelly comment upsetting to me, we on here were given no apology, and now I have to listen again to anytime I post about my mercury removal experience.

I am not needing to listen to this, I am here to get well, share my experiences, good and bad, and then move on and live my life.

that is simply,

not right, and fair.

I am posting this to get it off my chest.

Trish

Posts: 1250 | From Canada | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
MaryOH
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Thanks for sharing that because everyone has different perspectives and it's important to know everyone's experiences when trying something new. Unfortunately, most of us don't have access to these doctors that GiGi luckily does. We all know great doctors, but it's more hit or miss. It's important to know the dangers of treatments in order to make informed decisions. We value your opinions and help and I hope that we continue to hear from you. Many hugs!
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charlie
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Trish...I'll PM you some alternate sites.

I've never had a quarrel with GiGi but I don't give a flying flip where the cat sleeps either....

Charlie

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CaliforniaLyme
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Trish, I relate, I really do. I felt like no one on this board cared about me because they let me be treated badly and didn't say anything- but a few did- YOU did, for one, because you had been harassed too. I think you are a wonderful person and I know that you tell the truth. I am glad you do. I think you are brave and I know you have had a hard time. I didn't think I would come back here but there are good people here- like Michelle M, who does care. I wish Cavey was still here and I am hoping she will come back. I would hate to see you go because you are one of the most honest and sincere and
hurting people on here. And your support has been invaluable to me.

I can't believe the way it has been either.
I think people don't notice, or if they do they don't notice the endless repetition of the same thing directed at the same people. And if you are one of those people, it hurts and it sucks.

I have lost a lot of faith in the Lyme community these past couple of months but I hvae mORE faith in certain people- and one of them is you. I would miss you so much if you left.

And your sharing your truth DOES matter, I am ALWAYS so glad to see it when you post your experience and I have always thought you very brave to do so when you have been treated the way you have been- belittled instead of supported. I am so sorry that is happening.

Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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Health
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thanks Sarah,

I love lymenet, I really do, I feel the hope of recovery because others have been where I have been, but it is getting to me lately.

Do you know or do you remember what it was like when you had NO idea what was wrong with you?
Did you go through that? I did, for years, about 15 years of not knowing what is wrong,

then I found out, and everything I have experienced in this illness has been found on

lymenet. What a relief to find a website that has everything you have ever experienced, it is like a rare find.

I just dont want to listen to this anymore though, it is not the lymenet I have grown to love, it is not.

Trish

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Michelle M
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Dear Trish,

I have found your posts to be always very kind and honest.

I do not think you deserve to be spoken to in the manner I noticed in this post.

It appears that post has subsequently been "sanitized."

I also happen to think Cave's comments in that thread were not only typical of her but appropriate. It appears from her banning that moderators disagree.

Fortunately, there are only just a few Lymenetters who are judgmental and imperious. They do not brook dissent kindly. Owing to their apparent omniscience, no apology could ever be genuinely felt, let alone issue.

You mustn't trouble yourself with them.

Remember, for an opinion to matter to you, it must come from someone about whom you care. Remember too that cruel words tell volumes about the speaker, and not the person at whom they are directed.

Hugs,

Michelle

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Health
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Thanks Michelle,

I am very bothered by it at this time, perhaps if I was feeling better I may not have it bother me as much, I am not sure.
Some may think it is silly, but it is annoying me to no end.

I cannot take it, so I feel it is best to avoid situations that bring out anger in myself.
I am not good with situations like this at this time, I cannot deal with them, and erupt in anger,

I am sure it has much to do with lyme, and just being worn out.

I look back at my life and never had to deal with things like this, I just did not have it in my life,

when we get sick, we learn things about ourselves, and what we can deal with and what we cannot.

I find I am not that good at situations like this at this time.

I am not really hurt, I am more angry.

It was very easy to let things go before, but as you get sicker, my nerves are shot in all areas of my life right now.

Trish

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Lymetoo
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quote:
Originally posted by minitails2:
Hang in there. I think you have much to share and please make sure you request the removal of such offensive material whenever it appears.

Definitely! You have to be your own advocate in the social aspects of life, as well as medical aspects, as we have all learned!

Stay, Trish, stay!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Anneke
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Trish,

I too, have really appreciated you here!

Please hang in there girl. We are in the same boat and need eachother.

Anneke

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tailz
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When I read your posts, I can really tell you're suffering, too, just like I am - and you're honest about how you feel, which is the most important thing.

If I see a hurtful post on here, regardless of who the poster is, I highly doubt in my impulsive state I would have ignored it. I'm not saying Gigi didn't hurt you - I'm saying I didn't read the thread.

(If you dare disagree with me on EMFs though, I make no promises I won't hurt you.)

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Lou B
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Hi Everyone,

I'm back ... well, sort of back but still overwhelmed with non-LymeNet things until the middle of next week (11/15/07), however I will do my best to handle issues and objectionable posts as time permits.

So, bottom line, if you feel there are objectionable posts on the LymeNet Flash please PM me and I'll do my best to review and take action, if appropriate. I'll need information as to the Topic / Post and the specifics of what you find to be objectionable or offensive. Generalities such as "Cannot believe what is going on with Lymenet" do not give me or my team very much to go after.

I'm doing the best I can to take care of me ... please take care of YOU,

--------------------
Lou B
 -

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CaliforniaLyme
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Lou!*)!!!!!!!!!! We have missed you. Regardless of moderation issues!!! I have anyway, to speak/ write for myself. I am glad you are here.
I am also glad Jenifer is here, she has been doing her best but has had so much to contend with. It has been strange lately, yes, there are many specific things but it is the overall-ness of it which is so weird as well. Jenifer has removed many posts lately as she has been requested to by many people- and unfortunately one poster I miss dearly, Cave76.

There was a thread where Gigi told me and Cavey to leave the board that was left up for a whole week and some other mean ones directed at me. Obviously Trish has felt some have been directed at her, too- and they have been- like the comment "Health has always drawn a very dark picture of her experiences. Do not let that scare you. This is not what happens when you do detox under the guidance of someone knowledgable." which completely dismisses her as a fellow Lyme sufferer sharing her experiences. I have found Health to be an honest and trustworthy person to listen to.

If it had been a once only it would be different but I think there is a pattern of comments like these being directed at Trish and at me. Last week I was feeling as hurt as Trish- because it is not so much the one person being so rude- it is the lack of people saying, "Hey, I know Trish and that's not nice!" and some people even joining in to be mean because they revere that other person. I personally felt very down for a few days and was deeply, deeply
hurt by a bunch of mean comments and by lack of response.

My feelings of isolation with this were exacerbated with this when I wrote Jenifer repeatedly for help during this period and received no reply. Jenifer and I finally connected recently and she explained her replies were being sent to an old account of mine that no longer exists (very weird), so it appeared to me as if she had just been ignoring me. She had not been ignoring me at all which fits what I have always known her to be- a really good person trying her best.

SO, you have missed a lot and none of it fun, Lou. Sorry- not the nicest thing to come home to- but we do need you, which is hopefully nice in it's way. You are missed when you are not here!!

Take care,
WELCOME BACK*)!!*!
Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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map1131
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Lou, I just wanted to drop a post here. Jenifer did a good job with the very childish behavior that was taking place on this site.

I tried to pull Jenifer's post where she once again stated what's and why's and asked everyone to act like adults and be able to share our ideas without the nastiness. I couldn't find the post, so....

Lou, we really need you to share with this group how we need to respect others, even if the "others" have alternative treatment methods or if someone is ABX supporter for life.

My fear, that this board won't exist if we don't find a happy medium.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Truthfinder
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Hi, Lou! Welcome back! Gosh, you have sure been through a lot.......

Health and CalifLyme, I'm sorry that both of you feel attacked or harassed. No one should feel that way here at LymeNet.

It sounds like Lou and Jenifer are willing to address problems like this, now and in the future.

Perhaps it would be best if we could all decide that this is ``A New Beginning'' for us? [lol]

Tempers really flared in recent weeks, and there were many members who made posts that were not appropriate (IMHO).

Perhaps the most `healing' thing to do at this point is leave the past alone, and go from here.

I trust that future complaints will be dealt with by the moderators. It is my hope that from here forward, members will be much more courteous and considerate of one another.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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randibear
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i am so sorry that you feel this way. many times i've read things here and gone "what?". the written word can be so misconstrued as to be almost impossible to interpret.

lots of times i just try not to get involved. i have such strong opinions that i find myself practically yelling at the computer "what an idiot!! you jerk, you missed the point." amazing...

i hope you find yourself coming back again. i try to read all the posts.

i don't know the post which you're talking about. i can't remember much these days.

i truly hope you decide to stay. everyone contributes in their own way and you've helped me a lot even tho i haven't said as much.

i don't understand this banning and all, sometimes it seems rather chaotic and without reason, but then i'm not a moderator. (lou has always answered my posts and been very friendly and helpful.)

please stay, i will miss you.

--------------------
do not look back when the only course is forward

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Lymetoo
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HI LOU!!! Very happy to see you back!! I hope you will be able to handle your complex life AND us! I know we're quite the handful!! [Wink]

I do hope you are doing well now!!

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

I'm with tailz and randi...I don't read all threads and probably missed a bunch of stuff. When conflict is going on, I'm usually not interested in being involved!

The people involved need to report any serious infractions directly to Jenifer or Lou.

Stay, Trish, stay! [Smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

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JulieF
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Have not been here long but can say with certainty that I don't want to see someone with so much to offer leave.

I do not have a lot of the issues that so many here have but I still read the posts talking about them. Why?

Education to pass on to non-Lymies...

Education for me to offer other options, support and sympathy...

Symptoms for me to look out for in case mine change...

There is so much for us to learn from one another and on a selfish note - so much for ME to learn!

Bottom line - you have helped me even though we don't share the same issues and I'd hate to see you go!

It may not help, but if you don't have the strenght to smile right now, I will carry one for you!

Julie

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WildCondor
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here's a new Lyme World Forum for all of you! It's brand new so let's get it started up!

http://lymesupport.proboards77.com/index.cgi?

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Health
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It is about time this was brought up, I have addressed this with a moderator before, I am not sure what happened, but nothing was done.

I know others feel like this, they just dont say it.

How can I just forget it, the woman is in my face everyday I am on here, it is NOT being addresesed and it is absolute Bull**** for this to continue on.

I mean, come on will you, Lyme disease is a devastating disease and if you get well from it, which some and more then some are, they you want to help others or let them know what worked for you,

ALL done of course in a gracious manner.

SO, enough of this, nothing is being done about it.

Bless you all that can tolerate it, I cannot anymore, be well and get well.


Trish

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Greatcod
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I very much appreciated the information you
offered on your difficult experience with mercury removal.
Maybe you could just take a break, amd see how things shake out around here.

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Geneal
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Dear Lou,

Welcome back. Hope you are doing well.

Please, please consider lifting the ban on Cave76.

Please? [Big Grin]

Hugs,

Geneal

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Andie333
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Hi, Lou!

It's good to have you back!

Just please continue to take good care of yourself.

Andie

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Boomerang
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Health, I hope you decide to stay. Hopefully things will change around here. It's been hard to read the board a lot of days.

I hope that cave can be reinstated. I still can't believe she was banned when others have been so insulting and cruel.

I certainly understand why Sarah was/is so upset.

Glad you're back Lou...

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Lymetoo
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quote:
Originally posted by Boomerang:
I hope that cave can be reinstated. I still can't believe she was banned when others have been so insulting and cruel.

ditto on that!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Michelle M
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quote:
Originally posted by Lymetoo:
quote:
Originally posted by Boomerang:
I hope that cave can be reinstated. I still can't believe she was banned when others have been so insulting and cruel.

ditto on that!
Double ditto, times infinity. (My daughter claims this cannot be topped, so don't anyone even try!!)

[Wink]

Michelle

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charlie
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I have to add 'haughty and condescending' to insulting and cruel.

Charlie

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heiwalove
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i feel like this entire thread is an attack on one particular member here and it makes me really uncomfortable, really sad.

i'm so sorry you feel this way, trish. i'm so sorry you've been hurt. i say that with all the genuineness, love, and honesty i hold in my heart.

but i really don't think a whole thread bashing another lymenet member should be allowed to stand.

--------------------
http://www.myspace.com/violinexplosion

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charlie
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VOT...there was a thread on just that....sabotage of sorts. It got deleted.
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bettyg
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condor, please start a post about the new lyme board you mentioned. tell us about it.


someone emailed me about ALL advertising on it; is it to sell, or is it a FREE BOARD so advertising comes along with the board?


was this created before; i seem to recoginize parts of it. was it created when lymenet went down OR it became a severe battle fighting ground like right now?


welcome lou b! i've missed you too but hope you got some prime time vacation and working on your other BIG projects you mentioned in pm to me!

YOU TAKE CARE OF YOU; ME, I'LL TAKE CARE OF ME! [lol] [Big Grin] [group hug] [kiss]

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TerryK
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Very well said heiwalove.

This thread is highly ironic. Far from the kind behavior that I would expect from fellow lyme sufferers.

Terry

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charlie
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well I for one am not aiming my posts at GiGi....I'm aiming them at the poor delusionals who talk to their pills....

and the pills talk back.


HELLOOOOOOO [loco] [loco]

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HaplyCarlessdave
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Now what happened to Cave? She seems very helpful and I thought I just read a post...?

To make the best use of "boards" like this, you have to realize that we are all people with many different problems. But we have one problem in common-Lyme. We must transcend and appreciate our differences, not wallow in them, and have compassion for each other. When any of us throws forth an inuendo or an opinion, we might, ... horrors... be wrong! We always have to assumne that there is sincerity somewhere in there, while at the same time saying what needs to be said when mullfit becomes apparent, but not letting ourselves get bent out of shape. Too often, we forget to give each other the benefit of the doubt- I mean, heck, we're lymies, for Pete's sake! If somebody goes off on a rant, let's NOT "go after them" and try to "get them banned"! Those of us with an inclination toward ranting are usually those who have something to say; let the stuff that irritates us roll off our countenances like water off a duck's back, and ferret out the stuff of value. The only people to "ban" are those who insist on being incessantly, blatantly nasty despite sincere efforts to help them. But really, folks we have lyme ***, or rather, uh, posterior, to kick; we can't blow our energy getting on each other's cases!!
DaveS

DaveS


quote:
I wish Cavey was still here and I am hoping she will come back. I would hate to see you go because you are one of the most honest and sincere and
hurting people on here. And your support has been invaluable to me.

I can't believe the way it has been either.
I think people don't notice, or if they do they don't notice the endless repetition of the same thing directed at the same people. And if you are one of those people, it hurts and it sucks.

I have lost a lot of faith in the Lyme community these past couple of months but I hvae mORE faith in certain people- and one of them is you.


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charlie
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Good point Dave!
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HaplyCarlessdave
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Now what happened to Cave? She seems very helpful and I thought I just read a post...?

To make the best use of "boards" like this, you have to realize that we are all people with many different problems. But we have one problem in common-Lyme. We must transcend and appreciate our differences, not wallow in them, and have compassion for each other. When any of us throws forth an inuendo or an opinion, we might, ... horrors... be wrong! We always have to assumne that there is sincerity somewhere in there, while at the same time saying what needs to be said when um, mullfit becomes apparent, but not letting ourselves get bent out of shape. Too often, we forget to give each other the benefit of the doubt- I mean, heck, we're lymies, for Pete's sake! If somebody goes off on a rant, let's NOT "go after them" and try to "get them banned"! Those of us with an inclination toward ranting are usually those who have something to say; let the stuff that irritates us roll off our countenances like water off a duck's back, and ferret out the stuff of value. The only people to "ban" are those who insist on being incessantly, blatantly nasty despite sincere efforts to help them. But really, folks we have lyme ***, or rather, uh, posterior, to kick; we can't blow our energy getting on each other's cases!!
DaveS

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HaplyCarlessdave
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oh, sorry, my computer did some digital hiccuping of sorts, leading me to send again, but I see it must have gone through (haven't gone back and checked it, though...)
DS

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charlie
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Hiccuping beats vomiting any day! [puke]
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charlie
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Cavey is on several other boards...she's fine but I miss her being here too. I'll PM you the sites if you want.

Charlie

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Looking
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Well, I'm truly sorry that anyone feels unappreciated on this board but it seems to be one group against the other group and why is that? I am new here, but I've quickly come to realize that there is a tit for tat thing going on.

-------
***Minitails, said:

"But instead, some are treated to taunts, name calling, insults, or baseless accusations simply because they choose to stay true to themselves and their experiences." ***
------

I find that a strange thing to say as I was Taunted, Heckled, Baselessly Accused of Being Scott in disguise and told "my keystrokes were being recorded" and I felt like I had stalkers on one of my first posts here.

I'm not the only one who thought a remark made to Luvs was threatening, maybe that should have been reported to the admins?

Then I was called "McNastypants" on the thread this crew started and then I read the post where JimBob was called JoeBob, BillBob, WhateverBob and on and on. How insulting -- not something I expected from adults.

Gigi is very passionate about what she believes will help people and maybe she should choose her words more carefully, but she is not the only one. Sarah also posts most passionately, perhaps many times on one thread and she reminds me of Gigi.

My experience as a newbie here is that there is a lack of tolerance for opposing opinions and viewpoints.

I'm sure the group that was having fun tag-teaming all the alternative posts and being extremely sarcastic, rude and disruptive thought it was all a lot of fun. They did not seem the least bit concerned if others were offended.

There seems to be a lot of "the pot calling the kettle black" going on here.

I would just like to explore the different options for treating lyme in peace, but apparently that doesn't happen here.

I, too, am seriously wondering if this board is a beneficial place to be. I'm looking for help for myself, my daughter and my 2 beautiful grandbabies all with lyme and all misdiagnosed, but perhaps this is not the place.

Looking

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luvs2ride
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I agree 100% with Looking.

I get a great laugh reading how GiGi is rude but Cave is witty. Certainly GiGi has been dogged to the point of rudeness in some of her previous posts for which she has apologized. But I never saw a post where GiGi intentionally sabotaged, ridiculed and hi-jacked the post with jeering insults which some of you call "witty". Cave was not alone in this. She always had a partner or two to help her in her sarcastic banter.

Obviously, anyone who agrees with you and your protocol is witty and those that don't are rude, ill-informed and predators of the sick and niave.

Why not move this post to "Off-Topic" as I can't see what relevance it has to "Medical Questions".

Luvs

--------------------
When the Power of Love overcomes the Love of Power, there will be Peace.

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TheCrimeOfLyme
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I have nothing to say except I lost my morning coffee over charlies comment about people talking to their pills and they talk back. I had a visual and spit coffee everywhere.

Laughing matter aside though, no one should feel attacked here, yet it happens.

--------------------
You want your life back? Take it.

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shazdancer
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Trish,

At the recent ILADS conference, one LLMD mentioned that he'd had his mercury fillings removed. He said it was a very prolonged and painful experience, and he did NOT recommend it for everyone, even though he does recommend many alternative therapies.

Hope that helps,

Shaz

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Vermont_Lymie
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quote:
Originally posted by Michelle M:
quote:
Originally posted by Lymetoo:
quote:
Originally posted by Boomerang:
I hope that cave can be reinstated. I still can't believe she was banned when others have been so insulting and cruel.

ditto on that!
Double ditto, times infinity. (My daughter claims this cannot be topped, so don't anyone even try!!)

[Wink]

Agreed.

Welcome back Lou, hope all goes well for you.

Trish, sorry to hear that you feel that way, and I hope you will continue here on lymenet.

I hope Cave can come back soon to Lymenet. It seems
diminished without her.

Yes, Cave has a sense of humor, which she has often used
to question the unsubstantiated claims of substances
or processes promoted as miracle cures for whatever ails you.
Hard to believe that some would take her questions and
intelligent skepticism about products or treatments personally.
Could these folks who complained about Cave be profiting from
these products? It does make one wonder.

Hopefully lymenet will continue to be a safe place for critical
thinkers like Cave who have been so generous in sharing their
knowledge and experience to help others with TBDs.

From what I have read recently, there are a couple
lymenetters that have been more noxious, and far less
caring, than Cave in their writing on this forum. Sounds like
these may be the same folks who complained about Cavey.
These are only a very small minority of lymenet posters, and
perhaps the best thing we can do is ignore them, or speak with
the moderators when they are disruptive.

The moderators have done the best job that they can, and
deserve all our support for their work.

Sarah's treatment has been regretful though, and she deserves
alot of thanks for tireless and generous work on behalf of lyme
patients.

Hopefully she will not be harassed further by anyone who
disagrees with her, and that harassment will be dealt with
swiftly by the moderators of this board.

[ 09. November 2007, 11:24 AM: Message edited by: Vermont_Lymie ]

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Michelle M
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quote:
Originally posted by luvs2ride:
Certainly GiGi has been dogged to the point of rudeness in some of her previous posts for which she has apologized.

Sorry - I must have missed this. [confused]

quote:

Why not move this post to "Off-Topic" as I can't see what relevance it has to "Medical Questions".

It seems to me it has everything to do with the health and continued longevity of LymeNet as a community. Tucking it out of sight (like the posts concerning the banning of Cave) won't fix it. However, I'm sure the moderators will do whatever is the right thing.

Michelle

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CaliforniaLyme
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Michelle M, my 10 year old agrees with your daughter re infinity- !!

What I talked about in my response to Trish
was the way I was feeling and the way she was feeling. I don't believe I bashed anyone.

I also hope Cavey gets to come back!!!

Vision, I agree with you. It's weird.
Sincerely,
Sarah

--------------------
There is no wealth but life.
-John Ruskin

All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer

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Truthfinder
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Gee, Charlie - can't you be funny without bashing someone's methods or beliefs?

Ironically, if you take the time to look around this board and notice the `alternative' people who are getting well, it becomes clear that 90% of these people got help from the very thing(s) you are making fun of.

I appreciate humor, but not when anyone is the ``butt of the joke''. And that's been the whole problem here for a very long time.

And like Cave always said:

``It depends on whose ox is being gored.''

I think you'll find that if you don't mess with anybody else's ox, they won't bother yours.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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painted turtle
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Trish,

You have been helpful to me, although you may not know it. At the same time, there are times I would rather have not found out I have these diseases. Because my relief was extremely short lived considering what stresses there are in getting treatment.

I had the mercury removed from a maxillary tooth on the same where the jaw bone area had been a longstanding pain problem. Previous to this, there was no maxillary pain. The dentist put an onlay on this tooth. Ever since then in 2006, the pain is worse than it ever was. It has traveled beyond my jaw and up into my maxillary and often also into my eye. The dental stuff is real confusing with all the differing opinions about root canal. If I had it to do again, considering this pain, which is likely now involving trigeminal neuralgia, I do not know that I would remove that mercury.

But I can't blame anyone for that.

Though it is important to hear all sides of experiences.

Concerning Cave, I was rather shocked that she was banned! I found her to be a mainstay, as if she was lymenet herself. I don't know what happened and at this point, really can't add it to my brain....only have a limited space, must use it wisely!

At the same time, I have read some of these threads and do find it disagreeable to have a statement like "Health always paints a dark picture of her experiences". What that sounds to me is, a bit of ignorance as to exactly where you are coming from with regard to how deeply the diseases have infiltrated your CNS. Well, unfortunately for me, I do relate to you and hear where you are coming from. It seems Pollyanna to hear how miraculous some of this stuff is made out to be when truly, we are all different.

We have different DNA and living arrangements, different duration and onset.

Anyway, just wanted to add my two cents because I don't really understand what is going on here!

And I wonder why the Christians and Muslems can't get along. Each one thinks the other is not right. For the sake of the earth at this point, no less!

Charlie, remind me to never invite you over when I am taking my pills! [Big Grin] Or when I am putting my amethyst crystals in water to bathe in the sunlight before I drink it!

This disease does bring desperation. We desperate will go to many measures to find relief.

And I think miracles do happen, especially with the right effort. Of course I'm not herxing so don't ask me to repeat this in two weeks!

Plus, I may have forgotten that I posted it at all! [bonk]

--------------------
www.lymefire.blogspot.com

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charlie
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quote:
Charlie, remind me to never invite you over when I am taking my pills! [Big Grin] Or when I am putting my amethyst crystals in water to bathe in the sunlight before I drink it!

....Actually I do something similar when I dip lime and salt in my Corona before I drink it. (and I bet it tastes better than your water) [lick]

Charlie

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Health
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this POST is a post that should have been posted a long time ago.

I finally did it, and have no regrets to it. If you and this board want to support Gigi, then you do so, but each time I want to post, I have to wonder IF I am going to have something said to me by Gigi, some remark that is

harsh, and not at all kind, or making me feel like I am some ignorant lady.
Dont ever tell me that this woman is kind hearted, give me a bloody break.

I am sick and tired of this BULL**** said to me with this lady and the remarks that are going to slip again from her mouth.

Am I bashing someone? I am telling it like it is.

I still WANT to post on here, I have several questions I wanted to ask, one actually about Primal Defence but I am not going to be a part of a board

that Gigi is. I mean this, call me what you like, do it, you already have, I am not looking for sympathy,
I just dont want to get so angry and upset when I have to listen to some person say this to me about the mercury, to get me so riled

up I hate this board.

Oh, and by the way, I sure the heck can let A comment go, but when it comes again, and then later again,

no, it is hogwash.

Stir up the board? am I really stirring up this board? Yes, I am, but it would not be stirred up if a certain person was a kind decent person.

So, shake a way, shake rattle and roll.


Trish

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RoadRunner
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some of you people need some cheese....
some of you people don't have a sense of humor either. lighten up


RR

--------------------
"Beep Beep"

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Lymetoo
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quote:
Originally posted by Vermont_Lymie:
From what I have read recently, there are a couple
lymenetters that have been more noxious, and far less
caring, than Cave in their writing on this forum. Sounds like
these may be the same folks who complained about Cavey.

I would bet lots of money that you hit the nail on the head!

--------------------
--Lymetutu--
Opinions, not medical advice!

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aiden424
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I think it's sad that we all can't get along. I feel bad for anyone coming here for help and having to deal with all the negative stuff here.

I worry what people must think of us. We're trying to get people to take Lyme seriously, but if you read some of the posts here it makes you wonder.

If you can't say something nice, just don't say anything at all.

Kathy

--------------------
You never know how strong you are until being strong is the only choice you have.

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Boomerang
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Definitely hit the "nail on the head", from what I've seen.
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Health
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Im sorry everyone,

I could not keep it in any longer, I was far too upset to not post this, it is something that has made me leave this board,

and that was directed at me personally, with no
heart whatsover, and I dont need that, I will not stand for that, it has happened and

it will continue to happen,

hope you all get well, [Smile]

It may seem silly to post this, but when you have hit rock bottom you are NOT the same, and cannot handle things like you could handle when you were well.

I have wanted to post this for awhile, I just let it go, until things got to upsetting for me,\


Trish

[ 09. November 2007, 11:41 PM: Message edited by: Health ]

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cootiegirl
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I think Trish's posts speak volumes. If even one person is upset by the dynamics of the board, then there is a serious problem. There are a lot of sick people here in varying stages of their disease and recovery, and no one should be made to feel any less significant than another. If this is a board that is supposed to be endorsed by the Lyme Disease Association, then the owners need to take a long hard look at how things are going and why so many sick people are unhappy. It's time to stop playing games with people's emotions and clean up this board and make it something to be proud of.

There will always be varying opinions on how to get well - there is no one way that is better than another, no matter how passionate the endorser is.

I realize it is easy to play armchair analyst and make comments about how a board is run, but this site has had problems for many years and it is not getting better.

You simply cannot run a board of this size with only one moderator....Lou talks about his 'staff'....well the only 'staff' that ever shows up is Jenifer. No wonder she is cranky in her replies to people - she's the only one doing anything around here to hold the board together from the administrative standpoint....And please tell me who the heck Toby is???? Does he/she really exist?

**Hopefully lymenet will continue to be a safe place for critical
thinkers like Cave who have been so generous in sharing their
knowledge and experience to help others with TBDs.**

While I think the above quote is a wonderful sentiment, I see it as unrealistic. I don't believe that the administrators of this board will ever encourage critical thinking. They will continue to attempt to keep board members in line and discourage creative thinking by banning or threatening, which in turn frightens those that have no outside support to help them get thru this.

Ultimately you have people afraid to speak out about anything. How is this behavior any different than what a lot of ducks have done to us when we were searching for answers? Weren't we stiffled or literally 'banned' for our opinions or questions? Why should we have to endure that same kind of behavior at a place that is supposed to help us?

There are other boards out there, folks, that offer a much calmer and more supportive environment. You may be told that they are not as good as lymenet, but do not be afraid to check them out and draw your own conclusions. There is nothing wrong with using multiple sources for support and information and you might be pleasantly surprised....
cootiegirl

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Health
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JimBoB
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quote:
Originally posted by heiwalove:
i feel like this entire thread is an attack on one particular member here and it makes me really uncomfortable, really sad.

i'm so sorry you feel this way, trish. i'm so sorry you've been hurt. i say that with all the genuineness, love, and honesty i hold in my heart.

but i really don't think a whole thread bashing another lymenet member should be allowed to stand.

I agree. I rarely come to LymeNet anymore. As I have way too much to do to spend all the time it takes to defend a "good" healing protocol. I rarely read posts IF they don't have to do with herbs, when I do.

Maybe if some would not continually be putting down 'other' ways of healing, they wouldn't be getting into, or feel like they are in hot water all the time.

Everyone on here has SOMETHING to say, or we wouldn't be on here. We ALL have some kind of experience, good or bad.

Don't keep attacking others, and maybe you won't be attacked back. Plain and simple.

Jim [Cool]

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charlie
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....actually it's no wonder the old timers are jumping ship and leaving this forum to the alternativistas.

Most of us have had enough of having what got us well called, sneeringly, 'allopathic medicine'.

Yet they can't take a joke about talking pills or drinking pee.

Or ingesting pool chemicals or moving furniture around to get it away from the cat.

I can't in good conscience refer people to this forum and I have a family member who desperately needs it but he's highly susceptible to hokey nonsense and I just convinced him to take bactrim...if he reads here he'll go off drinking weak insipid herbal teas and reading hulda clark BS and probably get all his teeth pulled.

You people ought to be ashamed of yourselves for ruining a good medical forum.

Charlie

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RoadRunner
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this board has gone down the tube or toilet over the years nothing like five or six years ago.

It is sad
I think elementary school is better then this?


RR

--------------------
"Beep Beep"

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improver
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Even with the goings on I still come and sift through the site and find new and useful info. I have tried abx on and off and have made improvement in some areas but believe that herbs, detox, and alternative methods are a must for me.

As far as Gigi goes, she has done nothing but help me. Same goes for jimbob and anyone else who has seen real results with alternative treatments. I am thankful to have the ability to ask questions from people who have success with treatments.

It gets very frustrating when you spend thousands of hours learning, researching and figuring things out and trying them yourself with success then trying to help others with what you learn only to be faught off. I am sure this has happened to some of us in other areas of life.

My point is without everyones input our HUGE online resource here will diminish.

I would also like to add that when I feel hopeful about trying a new approach and read how it is hocus pocus it gets discouraging.

Good luck to all

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Soleilpie
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Maybe under "Medical" there should be 2 subgroups..."Conventional Medicine" and "Alternative Medicine."

Everyone should be able to speak about their personal experiences without others minimizing it. It's just plain rude and insensitive. On the other hand, maybe some of us can lighten up a bit. If someone is rude to you, maybe just very briefly say you were offended and then move on. I wouldn't get into a bickering match with them. It's a waste of your time. Who cares what they think. Don't allow someone to have that kind of power over you.

Also, I think it's irresponsible for people to speak about their experiences as if it's gospel. We have to be careful not to imply that THIS IS THE WAY AND THE ONLY WAY. Your experiences really should only be stated as an experience you had. What worked for you may not work for others, especially if it hasn't been rigorously tested. And reportings of adverse effects should always be welcomed. People are, after all, trying to get better, and being informed is the best way to make that happen.

Health, thank you for sharing your experiences. I'm positive you have helped others and have probably kept some from making hasty decisions. [Smile]

--------------------
The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back.
-Abigail van Buren (Pauline Esther Friedman) (1918-2002)

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shazdancer
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Looking, I would agree that both "sides" have gotten their jibes in, and I do not read thoroughly enough (nor do I want) to evaluate who did it more, who went first, etc.

RoadRunner, there have always been people on Lymenet testifying about alternative therapies. Remember when colloidal silver was a biggie? Rife was pretty much a new thing for Lyme then. I don't think anyone was doing hyperbaric oxygen yet. And just a couple of years ago, everyone was evaluating Podi Patches.

Soleilpie, it was brought up before to have two separate forums. I agree with you. The argument against it seemed to be that treatment isn't "ours" or "theirs," but it's a continuum, a blend of treatments for most. If I'm wondering about taking vitamin C, is that conventional treatment or CAM (complementary and alternative medicine)? Should I salt my food or not? But isn't salt/C a CAM protocol?

When I came on the board in 2001, I saw different approaches, and was able to sift through different opinions and decide on my care. (Unfortunately, the $$$ ran out before I could do everything I wanted, and chronic Lyme is probably the result.)

The difference now is, there are many different approaches, and posts are flying faster now than they did even 5 years ago. (Thanks to the IDSA, there are more patients than ever.)

Are people able to evaluate it all? I think so, but I think separating the two basic outlooks will help people get to the kinds of posts they are looking for easier, and will help posts stay on the front page longer.

Just my $.02,
Shaz

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RoadRunner
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quote:
Originally posted by shazdancer:


RoadRunner, there have always been people on Lymenet testifying about alternative therapies. Remember when colloidal silver was a biggie? Rife was pretty much a new thing for Lyme then. I don't think anyone was doing hyperbaric oxygen yet. And just a couple of years ago, everyone was evaluating Podi Patches.


Shaz

this has nothing to do with alternative therapies for me anyway I would try anything to get better and did.
just all the cry babies and name calling is wrong. it is alright to debate.

RR

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"Beep Beep"

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NCLymie
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To all,

We should all remember that this is to be a discussion, with the dictionary definition ``Consideration of a subject by a group; an earnest conversation."

I believe we should all try to keep in mind that most people who write in this board in facing the same difficulties, such as being ill, anxious, frightened, angry, depressed, and hurting. Perhaps they are a lot sicker than you are, and perhaps there is a lot more going on with their bodies than any one of us "non-professionals" know. Many of us are in need of advice or sympathy. When replying to someone obviously in pain, seeking answers, we should all be sympathetic instead of stating a huge dictation of the facts they believe to be true. . This particular argument (not discussion) does not seem to be about Mercury, but being opinionated and almost "showing off" to the rest of the Lyme Community. "See! Look what I know!"

Obviously, we would not even have this site if there was not such a need. What are people looking for in this blog? I believe (my opinion only) that they are in need of an answer, or perhaps a suggestion to our problems, an outlet for out pain, and to expect a respectful, compassionate answer. It reminds me of the arguments we as Americans are have between each other whether it be on religion, politics, schools, and similar subjects. Many times it seems that those who rattle the cage the loudest wants to be "right" and in power.

We are all human beings on this planet, and regardless of our beliefs, opinions, knowledge or lack there of, we all should spend our time helping one another. There is no time on this blog when one should attack another. Would we do this to our children, our minister, and our grandmother? I believe the danger of the boards and email is that it is too easy for people to take out their frustrations on some innocent person that was only expecting help.

Before we write our response, we should try our best to offer suggestions and show respect to those who disagree. I do not think any one of us want to be chastised for our comments or questions.

Years ago I had a neighbor who hated me I never knew why, but I came to understand that I was not her only target. My mother gave me very good advice: "Kill them with kindness." This may make the other upset or angry, however, you will be better for it. Always take the high road.

Oh, by the way, when I first was on this blog, someone famous here, chastised me for calling Lyme disease "Lymes.'' Can you believe I called it Lymes? Oh, I should be shackled!

Peace and Love to all! [kiss]

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sizzled
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"Everything in moderation."

That's the problem. No moderation has been observed.

We need moderators!

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shazdancer
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I'm with you, RR and NC. Someday down the road, perhaps someone will figure out that boiled eye of newt absolutely cures Lyme. Boy, will we feel silly if we've been swearing by some other treatment all these years!

We are trying to get to the best answers we have right now. Maybe it's something one individual tried, maybe it's backed by research. State your case, honestly, and let people evaluate for themselves.

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hardynaka
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Soleilpie said:

Maybe under "Medical" there should be 2 subgroups..."Conventional Medicine" and "Alternative Medicine."

AGREE!

It could be a solution!

Selma

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cootiegirl
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This was suggested a few years ago when there were similar problems, and was veteoed by the staff. I believe the staff's position at that time was that these are all forms of treatment and if someone does not agree with an alternative form thread, then SOB...Having too many sub-sections might be confusing to lymebrains and some good information might potentially be lost.

I think that people are missing the big picture. This has little to do with how many subsections we have or how many ways there are to treat lyme. This has everything to do with how people are treated around here by both board members and the lymenet staff.

cootiegirl

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Soleilpie
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Cootiegirl I agree that this whole upset is mainly about being disrespected.

However, I have seen a couple of complaints about the 1st page of "Medical" having mostly alternative medicine and burying the conventional and vice versa. I think one solution might be 2 subsections off of medical.

Maybe it could be set up where, when you click on Medical, you get 2 choices. I think setting it up this way wouldn't make it too difficult for those with Lyme brain.

Oh and I think the other issue some people were having is when a treatment is stated as a matter of fact, when it's really just a personal experience.

It's extremely careless to be irresponsible with your words on this board. Some people are easily influenced by those they think are in the know.

This irks me just about as much as when people post their IGeneX results and others come in and tell them that they definitely have Lyme disease. That is irresponsible. I mean how many times do we complain that Lyme testing is inaccurate.

This applies even to tests by IGenex. IGenex just happens to be the best because they test for more bands and their technique seems to be better, resulting in more accurate results, but their test still isn't optimal.

So basically, be respectful to one another and be responsible with your words.

--------------------
The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back.
-Abigail van Buren (Pauline Esther Friedman) (1918-2002)

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Boomerang
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I agree, I think there must be a way to have conventional and alternative sections on the board.

Anyone who is searching for info could easily click on both sections.

Like someone said, there is just so much information coming in now, it really makes it hard to sort through all of the threads.

I also think charlie is a breath of fresh air. He always makes me laugh! I hope that is still allowed!

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bejoy
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I am with you all that regardless of treatment choices, the bottom line issue is the need for everyone to treat one another with respect, whether they deserve it or not. [Smile]

If we use subtopics of medical, I would prefer the term pharmaceutical over conventional. Long term antibiotics are not considered conventional yet, and some nutritional supplements are considered conventional.

Perhaps it could be helpful to have a section with pharmaceutical questions and another for complementary medicine and alternative therapy questions.

Such a split would still not stop people who care to be hecklers from visiting what they consider the "other side."

And if we did split this way, where should people post their questions about "do you think I have lyme?"

I am so sorry that any of you have been hurt by anybody, in this virtual place where you have come to heal.

My request is that we all treat one another with respect, even if you think the other person doesn't deserve it. We'll love you for it!

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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hardynaka
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Is it really a big deal to separate? In the German forum

http://www.borrelioseforum.de/cms/html/modules.php?name=Forums

There's one part called Medizinische Spekulation, meaning Medical Speculation, that's the title they decided to make for 'unconventional/ alternative'. Only there, people can post about things like

- salt/C,
- heavy metal chelation,
- traditional Chinese therapies
- Dr.K.
- bioressonance
-...

Discussions there are sometimes hot too, but at least one can take a closer look of the alternatives grouped in one part.

And the 'medical part' (which is divided in 3 though: lyme, coinfections, general medical questions) gets more 'clean' from 'speculative therapies'!!! [Smile]

I don't know, it sounds for me the best solution... This won't end discussions for sure, but possibly easen a bit and make things 'clearer' for the foggy lyme brain. If s/he is to choose a therapy without having his/ her full mental ability, s/he wouldn't go directly to the part called 'speculative therapies' or 'unconventional therapies', right?

Just my 2 cents too!

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tailz
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http://tinyurl.com/32sr4p

quote:
Sometimes I wonder if the intent of some on this board is to drive away others to keep a monopoly of sorts on new people coming in.

I have not seen some on this board apologize once or ever have a soft heart about any of this.
I just sense THRIVE, DRIVE, SCARE!

Yeah, I have to agree.
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treepatrol
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Cannot believe what is going on with Lymenet

I do people are in pain minds messed up from lyme tempers flare yeah i can believe it.
Geez normal socalled people are half nuts today.

--------------------
Do unto others as you would have them do unto you.
Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.

Newbie Links

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Tracy9
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I agree that Charlie is a breath of fresh air; he is absolutely hysterical and makes me literally laugh out loud!! I wait for his jokes...they are such gems!!!!

Charlie, you are great!!!! I have never seen anyone as funny and witty as you on here, or anywhere!!!!!

Keep 'em coming!!!!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
   

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