sometimes this board resembles the salem witch hunts...not good.
i rarely write critques on this board, but i was quite upset by the recent departure of gigi and now the harsh/cruel attacks on susan c.
i know that many, many,many of you believe that abx are the only way out of this illness.
but there are also many of us who have tried abx for years and are still very ill..what are we to do.....stop searching for answers??????
when people like gigi and susan are treated so poorly by people on this board, it closes possible doors for those of us who ARE interested in learning about different approaches.
as i have stated before, we are grown adults capable of researching alternative options ourselves and making the decision of whether or not to pursue.
i'm so tired of reading caves diatribes and sarcasm against anyone who comes to the board with something other than an abx approach.
fact: abx have not worked for me. fact: i want to learn about other options. fact: if new people come to the board and are driven off by cruel accusations, i may miss an opportunity for healing.
if you think something is suspicious...just say so...don't attack the presenter, it's really not kind or fair.
thanks, lisa
Posted by Parisa (Member # 10526) on :
I liked what Gigi said. If you don't like what I'm saying, just keep scrolling down.
I also enjoy learning about different treatments. Some seem strange or too different in the beginning but after some research many times have some merit.
"Traditional" medicine doesn't have all the answers and neither does "alternative." Until someone finds an absolute cure, I don't think they can pooh-pooh someone else's possible cure.
My husband better watch out, I think I see some raw lizard sushi coming his way!
Posted by Robin123 (Member # 9197) on :
I agree. We need to be able to discuss all treatment options here without slamming people for mentioning them.
It's kind of like a big smorgasborg here -- you can partake of what you want and know that other things may work for others.
Posted by Truthfinder (Member # 8512) on :
I agree, too.
In case no one has read the LymeNet ``Terms and Conditions of Use'' lately, here's part of what it says:
quote:4...... Any conduct by a user that in LymeNet's discretion restricts or inhibits any other user from using or enjoying the LymeNet System Interactive will not be permitted.
And as Lisa said: ``''fact: if new people come to the board and are driven off by cruel accusations, i may miss an opportunity for healing.''
Exactly right.
Not to mention the fact that those accusations prevented a new person from ``using'' or ``enjoying'' the LymeNet board. That's in direct violation of the rules.
A little healthy skepticism is healthy and natural. Unwarranted condemnation or accusation is NOT.
Tracy
Posted by luvs2ride (Member # 8090) on :
To the best of my knowledge, there has not been a poll taken, but from reading posts here now for 17 mths, I believe most posters believe in a combination approach to treatment and are interested in alternative as well as abx treatment.
It is just a small few who are very adamant and vocal in their disdain of alternative care. Unfortunately, they can be very aggressive in their effort to "protect and defend" the rest of us who they sincerely believe are so gullible and dumb as to believe anything.
It is insulting, offensive and annoying to deal with. It is also detrimental when it succeeds in running off one of the best sources of alternative care we have had.
In Cave's defense, she has tried to protect in a softer manner than others.
Luvs
Posted by northstar (Member # 7911) on :
The original post needs to be read, i.e. the very first "one's" that were posted on 4 boards, including Activism.
That is the posting that prompted the warnings.
This following debate about "alternative" did not arise until after the poster responded to the warnings. That is when the poster went into some detail. Then, all ensuing postings became a defensive debate of alternative vs. allopathic.
So, to say that this topic/the warnings, etc. were because the writer espoused alternative, is not valid.
There was no mention of this approach as a universal concept. The only references that were made to the writer's successful tx were liver flushes and pH.
Read the initial post again. Notice how it was written, what it said and did not say. That is the only posting that the warnings were based on. It was not a warning about alt/allopathic. It was a warning of possible scam.Who would post about their "cure" on a political activism website? Cognitively or socially impaired? Planned? No one knows. There is only the posting.
Does anyone remember the site where if you paid x amount of dollars, youcould rid yourself of lyme in 7 days? Or the one who said affirmations and brain entrainment would do the trick without abx? (with a fee of course). All highly suspicious.
My observations is that most here do some sort of complementary support. Some do them as alternatives.
Alternative does not equal complementary. One is an either/or, the other means "in addition to". So perhaps previous warnings are to those who are less skilled or less-informed about how CAM's have been used by posters.
There are also degrees of CAM's, so within that field, there are choices. Even the lowly multi-vitamin or fish oil can be considered CAM.
So, to take this whole issue and divert it into an alternative vs. allopathic debate is projection of historical events and personal issues, and not a reflection of this single posting by itself.
That first posting was the stimulus, not the following postings.
The poster did not display evidence of knowledge of this website, nor the histories and experiences of posters.
That is why cautions are given, as are cautions about abx. Side effects, effectiveness, individuality. If one has an issue with someone providing cautions, that is a personal issue. From my readings, it would appear that it may serve as a caution to new people to do some necessary reading. There is no single bullet for CAM or ABX. No one has ever promised that except for the scammers.
Some new patients have not had a chance to get to the research and readings of past postings (not judging here, just an observation based on some questions that pop up infrequently).
We have to be careful when we make universal generalizations. Something we accuse IDSA of.
The internet is also potentially dangerous. There was an AP article:
Male, age 47, married, 2 children. Pretends to be age 18 in online chatroom
Female, age 40+, pretends to be age 18, in online chatroom.
Male, age 22, knows both from online chatroom.
Relationship: online romances (should one choose that label)
Problem: both males from same town. Eventually learn of each other.
Results: Man #1 murders #2 in jealous rage.
Unreal Reality ! All from fictitious communications and pretend lives.
My perceptions only.
Northstar
Posted by Aniek (Member # 5374) on :
This is not always about abx vs. alternatives. There were other red flags that concerned people recently.
But I wish everybody would agree to just PM a moderator when they see a suspicious post. The moderators know how to respond and things are taken care of behind the scenes so newbies aren't scared away.
Posted by Jellybelly (Member # 7142) on :
I agree. If anyone feels someone is truly a danager, PLEASE pass your concerns on to the moderators. They have ways of tracking people and if they believe there is a REAL danger, they can remove the offender.
I think we have all heard SOB ENOUGH! Please Stop! Please stop targeting people as trolls. People have been errouneously targeted, and I personally find it by far more discouraging then helpful. None of us will be harmed eternally if they are here for a few hours, until the moderators can make an INFORMED decision.
If you feel newbies are in immediate danger, you can always PM them. I guarantee this board will not suffer by our ever vigilant hunters taking a break. The damage done in my opinion is far greater then the positive that is done. We have lost many good people on account of this kind of hunting.
Posted by aiden424 (Member # 7633) on :
Lisa,
I agree!!! I think antibiotics are great, but I want to know everything that's worked for the treatment of Lyme.
It's sad that people are treated so rudely for stating their opinions here. It's really hard to understand that with all we've been through how any one could be so disrespectful to any one that doesn't agree with them.
We've all had to fight to validate our illness. This should be a place to get away from all that and we should support each other instead of attacking one another. Or what's the point of this???
Kathy
Posted by CaliforniaLyme (Member # 7136) on :
As I have said, I tend to believe antibiotics are peoples best bet but I have high hopes for some of Buhners protocols- and am looking forward to seeing what happens with people!!! I hope there do develop very viable alternative therapies- like Artemisia for Babesiosis- which has been of GREAT benefit!!!!!!!!!!!!!!! I believe in *what works* and what I see work!!!
I think re the newbies/troll warnings- I think it is SO SO SO hard to tell and I do believe the people worried about them are coming from a good place- because those of us who haev been around a while know that sci.med used to be a GREAT Lymed resource- and now it is garbage!!!!!!!!!!!!!!
I would HATE to see that happen to Lyme Net!!!
I hope it doesn't!!!
Posted by northstar (Member # 7911) on :
``This is not always about abx vs. alternatives. There were other red flags that concerned people recently.''
I interpreted this thread as concerns about the ability to discuss alternative care. I based it on the following quotes taken from the previous posters:
"It is just a small few who are very adamant and vocal in their disdain of alternative care."
``''fact: if new people come to the board and are driven off by cruel accusations, i may miss an opportunity for healing.''
"I agree. We need to be able to discuss all treatment options here without slamming people for mentioning them."
"I liked what Gigi said. If you don't like what I'm saying, just keep scrolling down. " I" also enjoy learning about different treatments."
"i'm so tired of reading caves diatribes and sarcasm against anyone who comes to the board with something other than an abx approach."
"rarely write critques on this board, but i was quite upset by the recent departure of gigi and now the harsh/cruel attacks on susan c."
---------- My purpose was to refresh everyone's memory that the the caution issued was not about the content (seeing that it there was none), but about the presentation.
All discussions thereafter were about the right to discuss alternatives. Please remember Susan was not here to publicly discuss her tx...she wanted you to pm her to hear about it.
I may have missed some threads where there were attacks on the poster, or alt treatments in general, were issued, however. I did not see any attacks.
And may have missed threads about other red flags. But that is vague, and I do not understand the references. Because of the vagueness, I do not understand how to apply it here.
But since this witchhunt thread was focused on alts, as a result of the susan posting, I felt my response was in line with it.
I do not disagree with concerns above, and yes, sometimes how a poster responds to disagree may be inflammatory. Trying to voice an opposing opinion without emotion is a skill to be learned. Perhaps we need a thread about scientific discourse? Communication without hyper-reaction? How to develop?
So, what is this thread about?.................And what is the basis for the concern? i.e. what lead them to this conclusion? We can project our own thoughts into this initial posting of this thread, and respond, and not even be talking about the same thing. Rorschach situation.
I think the pm suggestion is always a good one.
Northstar
Posted by CaliforniaLyme (Member # 7136) on :
Yes Northstar but with ONE caution- if you do PMing or emailing off board then sometimes if you have an interaction with people onboard who have missed all of that they may make assumptions based on that absence!!! Not knowing the whole story!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Posted by northstar (Member # 7911) on :
If the threads are about things that occurred off the board, then there is nothing to discuss. on the board.....either pro or con.
In which case, discussions based on events in pm's should not be posted. That includes the recipients of derogatory email.
Complaints about pm's ? Taken to the public? How to handle? Might be a good new thread?
Aaaah miscommunication !...see, I meant to say pm moderator, as suggested by, I think it was, Aniek!
That is how rumors get started...mistakes, omissions, typos, blank brains!
Northstar
Posted by trueblue (Member # 7348) on :
I agree with what NorthStar has said so well above. The intital caution was just that. A caution based on posts going up in several forums at once that seemed vague and somewhat suspect. The issue wasn't traditional vs. alternative treatment as far as I could tell.
There is and was no witch hunt. There was a caution and afterwards an explanation. It's all good.
Just the view from here.
Posted by Jellybelly (Member # 7142) on :
So maybe you need to view it from a different perspective True.
How would you feel, if you post a comment or possibly start a new thread. Then a respected, long time member of the board comes along and issues a "caution" about what you have posted.
The caution comes in the form of SOB, Scroll On By. Basically this well known member is telling people that they should consider ignoring you. Just getting a SOB would be getting off easy, we have ALL seen far worse happen.
Wouldn't that make you feel great!!!??? That is EXACTLY what happens all the time.
Posted by Kendrick (Member # 10990) on :
I'm just glad that cows can't fly.
Posted by trueblue (Member # 7348) on :
quote:Originally posted by Jellybelly: So maybe you need to view it from a different perspective True.
How would you feel, if you post a comment or possibly start a new thread. Then a respected, long time member of the board comes along and issues a "caution" about what you have posted.
The caution comes in the form of SOB, Scroll On By. Basically this well known member is telling people that they should consider ignoring you. Just getting a SOB would be getting off easy, we have ALL seen far worse happen.
Wouldn't that make you feel great!!!??? That is EXACTLY what happens all the time.
Wow, that was uncalled for. Thanks very much.
Did you feel better being the one doing the attacking? It seems to me this thread was about exactly what you've just demonstrated.
Thanks for illustrating it so well.
Posted by Jellybelly (Member # 7142) on :
True, that was not meant as an attack, but for you to look at what is happening from a different perspective.
Making people feel crappy isn't my style. My point was that we all to often watch things happen to others without feeling anything. I only wanted you to slip into the shoes of others for a moment to maybe feel what they might feel.
I am sorry if I offended you. If this truly hurt you I can only imagine how crushed you might be if someone suggested that others scroll on by your posts for real.
Please accept my apology. I don't get riled about much, but watching people be attacked is one of the few things that can get me going. Posted by shazdancer (Member # 1436) on :
I would like to weigh in here, as I had made a comment on Susan's post.
As northstar said, it wasn't about alopathic v. alternative as far as I was concerned. It was about possibly luring folks away with a "pie in the sky" promise, only to bilk them of money and hope.
In cyberspace, a comment left standing with only supportive comments looks like everyone is supportive. And since no one requires footnotes on a message board, anyone who can type in English looks equally credible.
Susan's posts looked suspect. I said so. That is what I meant. Maybe it's the ex-New Yorker in me, but I am still not convinced that there isn't a sales pitch in her somewhere, sorry if I'm wrong. But to write such a long post inviting people off the board for the punchline is highly suspect.
As far as Gigi, I objected only when said, "You MUST do colonics if you want to get better." It isn't true, and I said so. I'm sure if I'd said, "You MUST take doxycycline," I would be disagreed with, as I should be.
I think there is room for the whole panoply of treatment options, but I think it is fair to say what is ILADS-recommended, what is Dr. B, Dr. Z, Buhner's, etc. Not all treatments have the same amount of evidence behind them. Doesn't make them wrong necessarily.
Hope that helps you understand where I'm coming from.
-- Shaz
Posted by bettyg (Member # 6147) on :
i'm pasting a copy of an email jenifer/moderator sent to me that i received today about this whole incident.
i replied asking her to POST ON ALL FORUMS so every member knows what is expected of them as an active member in reporting such incidents and what the lymenet rules are!
it also shows the moderators are doing things about this incident vs. none of them posting anything so the members DO KNOW ACTION is being taken and in what direction. *****************************
From: "Jenifer Stolow"
Subject: Inappropriate Posts on LymeNet
Date: Mon, 22 Jan 2007 21:52:47 -0500
I am writing to each of you because you recently posted in a topic that pointed fingers at a "troll". LymeNet does not tolerate this kind of behavior .
If you feel someone has ill intentions, you need to email me and provide me with the web address for that topic .
DO NOT post "Troll Alerts" on LymeNet. ***************************************
If you see someone has done so, please inform me and provide me with the web address for that topic.
This topic I am referring to has been deleted. **********************************************
If you have any questions, please feel free to email me anytime.
Thank you for your cooperation. ~~~~~~ Jenifer Stolow [email protected] LymeNet.Org Webmaster LymeDiseaseAssociation.Org Webmaster *************
to all, i bolded or underlined and made her paragraphs shorter so nothing would be lost when reading this. i do hope she will post this at he top of EVERY FORUM.
i have NO IDEA WHO SHE SENT THIS TOO! i posted a SUPPORTIVE note to susan; not a negative post.
also, susan is a newbie and told me privately she's never been on a message board before! boy, i remember those days.
she deleted her post since she was getting many private messages where she couldn't keep up and get normal work done.
i asked her to repost it where it had been. next thing i know it was in all forums. i pmd susan again asking that she delete all but ONE post to go where she wanted it to go. none were even after giving the instructions on how to delete the extra posts.
also she didn't know that posting in all forums is considered spamming. i've done things wrong then and still do NOW! so we're all human and will do lyme things. END of subject....
Posted by Geneal (Member # 10375) on :
I am still relatively new to this board. I am sure I have made many posting mistakes and will probably innocently continue to do so.
Thanks for your patience with this learning curve for me.
I have learned so much. Every day I glean new information from all of you.
When I am not sure about a post or an answer, I don't reply. I would much rather leave it up to the pro's (you guys!).
As a matter of fact, I just learned what SOB means on this board.
I knew it couldn't mean what I usually reference it to. Thanks for teaching me something new.
Geneal
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by trueblue: I agree with what NorthStar has said so well above. The intital caution was just that. A caution based on posts going up in several forums at once that seemed vague and somewhat suspect. The issue wasn't traditional vs. alternative treatment as far as I could tell.
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)