Monday, March 7, 2011

40 First Banned Access

Today when trying to log in to a forum, I received immediate indication that I could not access that forum of which I'd been a member.

It's only been a few short months since I joined.

I have received no PM, no warning email, and no indication of what my specific violation was that led to being banned.

This is all I have to show for it - two screenshots (click to zoom for closer look):





and






Since I'm not entirely sure why I was, in fact, banned, I have to look back and play twenty questions with myself...

There are only two things I can think of right now that might have led to me getting banned:

1) I pointed out, openly, on another forum that posters need to do a better job of producing evidence to support their claims when they are in the domain of conspiracy theories,

and

2) .....

Actually, #1 is the only thing I can think of that could have gotten me banned.

I'm sorry, if that is in fact what happened - I have no way of truly knowing at this point because as I've said - I didn't receive any warning or take-down notice.

On one hand, I am disappointed because I thought what I had to say was important and I was learning some new things while there. I also have been genuinely concerned that those who discuss conspiracy theories so much on support groups do one of two things:

Reduce the credibility of all patients who are already in the challenging position of having to support the existence of Chronic Lyme Disease,

and/or

Create a distraction that serves the purpose of taking people's minds off the issue of solving the Chronic Lyme Disease puzzle itself, by dragging in all these additional topics and potential causes for alarm (either founded or unfounded, depending on the case) about our health, government, scientists, and business.

I was fine discussing at length the role of pharmaceutical companies and lack of ethics in clinical trials without much controversy... it is only when someone got onto the issue of chemtrails in our skies that I began wavering in my ability to respond rationally.

There is - as it's often said - a time and place for everything. And I can listen to someone else's theory about something - heck nearly anything, really - especially if they supply sound evidence from verifiable sources. But they did not, and I pointed this out to them, that and that they would appear conspiratorial to their detractors and the media - only to be told they didn't care.

And well, I very much do care what is thought of Lyme patients as a whole, and so I pointed this out on that very thread and elsewhere. And I got banned.

So that is probably what happened. That's my best guess. Which is kinda sad, because I found this cool three-part series from the Discovery Channel about the issue of chemtrails I was going to post links to in that thread and asked if anyone had seen them, at least to provide evidence on the level of NASA-style research done on chemtrails at Kettering University:



But you know what?  Here's the other hand...

On the other hand, I'm somewhat relieved to be banned. Yes, relieved. Do you know why?

Because every few minutes I was spending copious amounts of time looking up other people's site links about topics completely unrelated to Borrelia and microbiology research - their links, and then other documentation to both support and refute the argument at hand -  and it was beginning to wear me out with the sheer volume of material made available for me to assess.

So now I am freed from feeling compelled to make those assessments, and also free from asking for more solid evidence - though that is exactly what I wanted from them.  More than to dismiss it all, because I rather people find good evidence for me to support their theories about chemtrails or something else first - before someone from the media tries to ask them not only about their pet theories about chemtrails but also about topics more germane to the discussion, like persistence in Lyme disease.

In the end, I just wish it didn't come down to this. There were other conversations I was having with other members there I quite wanted to continue which were right up my alley, about seronegativity in testing and potential forms of transmission of Borrelia in human hosts. This is what I've been researching and continue to do research on, and liked conversing with anyone else who was reading it. I was also helping one new patient with questions - and helping another person get started with creating their own blog on Blogger - and now, I cannot go back there and help them.

I'm very sorry. If you are on that forum and would like to continue chatting with me here, please post a comment and I will read it - at your request I can keep it screened as well, as I screen all comments. You can also email me at CampOther at gmail dot com.

If anyone remains on that forum, and knows which one it is - could you please inform others of my banning? I'd greatly appreciate it, rather than have some members who were concerned about me think something else happened to me. Thanks.

Now that I'm no longer a member there, expect to see more in-depth research and commentary on this blog (provided I'm well enough to keep going at a healthy clip). I will continue to post commentary, research, patent reports, resources, and articles to this site as I can, including the regular Friday Four.

Tune in!

40 comments:

  1. Well, you can join the band of other people who have been banned from that forum. Obviously you were forcing people to think instead of just following the latest conspiracy or dangerous protocol spouted there.
    I'd take your banning as a bright spot in your life (as you said, free up some time). It's just more proof that you were hitting somewhere close to rational and critical thinking.

    Oh, and about asking someone on that forum to ask were you are??? Only the brave would do that----- since that's a reason for THEM to be banned! It's happened.

    ReplyDelete
  2. Band of other people? So, you know which forum this is, then? How many others have been banned?

    I'm not the only one who cited research on this particular forum, and others posted interesting links and comments - it wasn't just me.

    I'm still disappointed about it, because there were people there I liked discussing various topics with and I wanted that to continue.

    I'm aware that people were talking about conspiracy theories on some threads - but that wasn't everywhere, and everyone gets a chance to talk about whatever concerns them. I just couldn't keep up with it all, and I still maintain the opinion that it's probably not the best idea to post about conspiracy theories on a site that is intended to be about supporting an idea that is already (oddly) controversial to a number of people.

    I don't understand... you're saying someone else can be banned for just mentioning I've been banned? That seems like an overeaching form of censorship... I thought I had stricter rules when it comes to writing about my own doctor or someone else's personal doctor on my own blog - but they have me beat now in terms of strictness.

    ReplyDelete
  3. And did I say no warning? There was no warning. I thought they'd just closed down the thread last I'd looked. At the time I didn't think that was prescient of what happened to me - I just thought whoever began the thread thought it went too far off topic, too.

    ReplyDelete
  4. The moderation over there (are we not mentioning the name of the forum?) is a little weird.

    I just looked through your past posts and really didn't find anything too horrible. I've made the same points to some of the same members before -- like when a site about Lyme that someone linked to had "Jews did 9/11" in its sidebar.

    I'm thinking you could probably try to email the mods to get your access back. I, for one, appreciate your posting style and the information you have, although these days I'm mostly using the board as a repository of searchable information.

    ReplyDelete
  5. Anonymous,

    Do you think they'd want to give me access back? Someone told me I did something against policy, but I don't specifically know what - I knew about specific rules concerning doctors' names, not using offensive language, name calling, or insults - and I followed them to the letter. So it may be something else.

    Moderation is "weird" as you put it. Thanks for sharing your assessment about my content - I didn't think it was horrible, either.

    I'm not sure what to do next. I'm really still absorbing the news, and part of me wants to post there but perhaps not as much as I was. I found the interruption jarring in the discussion I was having that got shut down... I don't even know if that thread is there any more or if it's been removed.

    ReplyDelete
  6. I guess what I'm saying is, if this was arbitrary and without warning - how can I be so sure it won't happen again? I rather post somewhere where there are clear warnings first that your access is about to be removed. If they change that policy, I'd consider returning. Right now I'm experiencing a loss of confidence.

    ReplyDelete
  7. Okay, someone has just sent me a comment, letting me know I can edit out certain details of it before posting - FYI, guys, I just want to let you know that on Blogger, one *cannot* edit other people's comments before reposting.

    Blog owners are given the option of moderating comments to either publish or delete - there is no "inbetween". So rest assured that anyone's comment that makes it here is in its original form.

    So if I want to share your comment with portions of it edited, the only way to do so is either post it as my comment with my edits but credit it to your username - or have you repost it yourself with the edits. One or the other.

    ReplyDelete
  8. If you still have that post, you can copy/paste the parts you will allow on this blog and credit it to me. Otherwise------ I didn't save a copy of it.

    ReplyDelete
  9. Ok, you can certify this is what you said with the group being edited it out, and it's not my comment being made:

    "Reinstate? If you feel that you have to, then do it. But it may happen again. Arbitrary and without warning. That's probably against 'their rules'. When I was banned (then reinstated!) I pointed out a rule number that showed I was banned against their 'rules'. The next thing that happened----- they rewrote that rule. LOL But most of all, my advice to you,------ your confidence should be raised by that banning! You did nothing wrong, didn't break any rules. That forum negates the saying "The closer to the bone, the sweeter the meat". Just the opposite------- the closer to the bone (truth) the more they won't want you there."

    - By cave76 on First Banned Access at 5:58 AM

    The reason I'm not mentioning the group now is in case for whatever reason they do change their written rules policy and issue a specific warning that allows people to stay on the site with conditions to be met *before* getting their account closed, (Such as not engaging in a very specific rule that applies to everyone - rather than selectively applied or created (!) just for you. That really happened??) I might consider going back if welcome to return.

    But right now I am not pleased, additional messages from others have made me uncomfortable about the potential for getting banned again, and I am thinking at times it might be better to focus more of my limited energy on this blog.

    There's obviously interest in it, as I'm getting hits for keywords about the vlsE patent a lot and borrelia. It also seems that news of getting banned has been important because this entry is getting lots of hits. It is making me wonder who else is reading this who may have had similar experiences. If so, I think right now I understand how they might feel... I've never been banned from any online forum before.

    I have other sites and lists I can go to for support and to offer support, fortunately... but that's missing the point - one day this was okay, and the next day it wasn't. Confusing.

    ReplyDelete
  10. I just want to add here something about your comment, cave76:

    "the closer to the bone (truth) the more they won't want you there"...

    That doesn't make any sense? What do you mean? I still don't understand why asking for strong supporting evidence for someone's position on something - chemtrails or otherwise - is anything people would be against.

    Extraordinary claims require evidence - I can't just go on hearsay, or a web site that doesn't have enough names and documents that can back it up. The Discovery channel put together a three part series on chemtrails and there was no evidence given that it's a real problem - only a suggestion that climate researchers are researching ways to change the cloud deck with particulates.

    I'll buy that, given what I already knew - and I can email someone who has worked with climatologists to find out. But that is different from citing someone on a alt medicine web site who is talking about chemtrails.

    Anyway, I get the impression this isn't about chemtrails but it's more about my showing concern about how patients are viewed by others. And that's something that really hits home for me - especially after I've had a number of doctors tell me that my illness is some somatic disorder - and especially after I've seen A.C. Steere's acp conference notes on patients. I don't need any additional help in being viewed with incredulity, thank you very much.

    ReplyDelete
  11. So, I received this Anonymous comment - it had to be edited and reposted, because there was identifying info in it that they seemed to want to remain unknown:

    "CO got involved in discussions with someone who may have been a troll. I'm not sure if this is why the ban.

    There have been a few trolls on here who have repeatedly asked questions that only one who has been involved in this for some time would know, not someone who was only just bit. CO took the bait.

    You can forward my message to CO if you want. It's just my opinion, with no documentation."

    - Anonymous

    I don't know what to make of this, only to say that doesn't it make more sense to ban someone who is a troll rather someone baited by them?

    Can you see me from where you are, crossing my eyes and shrugging, then swigging from my bottle of scotch? Thanks, Anonymous, for your comment - though I admit it doesn't make much sense to me.

    Any more than why there is a theory that commercial and military airplanes are deliberately engaged in biological experiments on us all... all who have to breathe the same air and drink the same water, including the military, politicians, film makers, debutantes, scientists, police, EMTs, doctors, and Whole Foods shoppers. It makes zero sense to me, actually.

    ReplyDelete
  12. How to explain 'the closer the bone' comment? A take off of an old -----"The closer to the bone the sweeter the meat"
    I substituted 'truth' for bone in a wild fit of literary license and ignored the rest, continuing my literary license orgy.

    What I meant-----the closer a person gets to the 'truth' (or beliefs) the scarier they are---- even deemed 'dangerous' or at the very least a nay- sayer. (grin)

    Don't hold your breath about any Rules on that site you were banned from. 'Nuff said.

    **** one day this was okay, and the next day it wasn't. Confusing.****

    Not if you've been around that site (or many of the others) very long. Just sayin'.

    Oh, and this is to verify what C.O. reposted above was from me, Cave76. A bit edited, but hey------ I'm not surprised. 'S alright.

    ReplyDelete
  13. Sorry for all the anonymous comments... I'll start signing them. I was merely passing on information that was PM'ed to me on the forum.

    And yes, no idea why you would ban someone who was baited by a troll.

    On another note, when I first saw your blog, it reminded me of these sites:

    http://lymeanalysis.zoomshare.com/3.html
    http://lymeenigma.proboards.com/index.cgi

    The second one, although unfortunately dead now, is a message board by some people who left the other board we're talking about here.

    -Adam

    ReplyDelete
  14. Thanks, Adam.

    It's okay if you're Anonymous, too - but after a while if enough Anonymous people post, there is confusion on my comments board in my addressing Anonymous #2 versus #3 unless each Anonymous commenter takes on at least a temp name for the comment.

    That and if folks want me to edit out *anything* in their comment, it ends up looking like it came from me... "The lurkers support me in email" etc. is not behavior I want to emulate. I'd rather the entire deal be yours.

    So if people just post directly where possible - even if that means splitting their comments up as you just did - that works out better. (Thank you for that other comment by the way - my short answer which will remain cryptic for others is that I already knew about that and other methods, and I'm not sure what I'm doing next).

    I've seen Lyme Enigma's site, and I've had a mix of curiosity and concern for her since I read it - wondered how she is doing since she last posted. At least when I last looked, she decided 'screw it, I'm getting off all these antibiotics to see how I do without them'. And I think at least back then, she was feeling better and more functional off antibiotics than while on them - but she wasn't back to her old self, either.

    I'm interested in many different aspects of the Lyme disease/tickborne infection complex issue... from specific to broadly related to other disciplines. I can see where there are some similarities behind Lyme Enigma's content and mine, but it's different, too. Her focus was more on her personal journey, and mine is... all over the place.

    If anyone asks, no, I'm not Lyme Engima either - just to put that one to rest before it even gets out there.

    I wonder where she is now and how she's doing? Well and healthy, one would hope.

    ReplyDelete
  15. I don't know which chat line you refer to but have a couple I can guess at.
    I have browsed several over the years and joined some but just can not get on with all the floss. I stick with Eurolyme where in general there is less floss( things that float around with no substance like candy floss)
    Having a week away I was catching up with posts and clearly mayhem had been going on about the why's and wherefores of detox.

    Whilst I recognise that many of our Lyme doctors use herbals usually in support of antibiotics I was fortunate to be treated by one that doesn't and thankfully have made a recovery on just antibiotics whether I relapse again remains to be seen.

    What always concerns me is the angry brigade who defend herbals so vehmenetly that they take over the forum and any newbies must think they have come to the madhouse.

    I joined Facebook and have been following a number of others who post research and articles on Lyme, far more rewarding than reading the many posts on forums although I still will pop back to Eurolyme and search out Gill's posts our founder as in general they are on recent research developments.and support the newbies.

    I am sure you too will find alternatives to the forum you were banned from.

    ReplyDelete
  16. Joanne, thanks for your response.

    I think that if people have either exhausted their use of antibiotics/antiprotozoa meds or their bodies cannot tolerate them due to drug interactions or serious allergies - herbs can be a strategy for managing symptoms and maybe in some cases kill, such as in artemesia annua extracts - which the WHO has shown has an impact on malaria and there is evidence it affects Babesia, too.

    The issue is, of course, evidence. If someone supplies independent research citations (that is, research wasn't funded by a company selling the product itself) that show some evidence the herb works to treat condition x, then it could be worth the money and effort. If it doesn't, well, then you can be throwing good money away and end up potentially feeling worse off than when you started. Since I've had an allergic reaction to an herb, the "herbs are all-natural and harmless" argument doesn't sit well with me from experience already (regardless of logic) and my own doctor will monitor patients' liver and kidney function panels more often if s/he knows that they are on particular herbs. Many have side effects, and one must treat them like regular medicine - because they are medicine, essentially.

    I'm very sparing on using herbs myself. It's not even just a matter of lacking evidence (there is someone on this board who has commented on my alternative medicine post who I am sure will step in at any moment and gladly offer research citations to support herbs) - it's that I would rather see how well antibiotics, rest, eating well, sleeping, and keeping stress down alone will help to let my own body and immune system sort it out. I believe our own bodies have enormous restorative powers if we give them half a chance and let them do their own job. I don't believe we can do it without some medicine - this IS a bacterial infection we're fighting off, after all. That's how it all started.

    I really am glad to hear you've made a recovery on antibiotics. That's excellent. I hope you continue to do well. A relapse is what brought me back into the Lyme world online, and part of what got me into researching and writing this blog. Otherwise, I would have continued working and moved on... which is still my hope.

    Re your concern about the angry brigade: I don't like the anger (see below) but I'm sympathetic towards people who turn to herbs even as I do not often like how heavily different formulas, protocols, etc have been marketed to those who are chronically ill including patients with Lyme disease. Especially in the US, where insurance will not pick up the cost of antibiotics long-term where there is no price cap (if one even has private insurance to begin with) and also where people may have tried antibiotics and couldn't handle them or developed secondary infections. There has to be some alternative out there, and optimally science would be working on this problem - but if they aren't (or even are, and it's taking a while to get results) - people are going to want to try something else.

    What I don't like is when anyone becomes strongly attached to an idea of any kind so much so that they cannot consider alternative ideas. And I don't even mean adopt or believe other ideas - I just mean *consider*. For me, part of the value of being in a big group of people discussing things is to expose each other to differing points of view and maybe, just maybe, learning something new and changing my own mind.

    ReplyDelete
  17. More, Joanne, as I apparently reached my character limit:

    I don't know much about Facebook other than I've been on it a little for networking purposes and I don't post as often as others seem to... Which research sites do you recommend? I'm about to post a commentary piece on Facebook in a short while. It's nothing major, just some observations.

    Is there anywhere else you recommend signing up or reading for research purposes? I have some online database access for some publications but not everything I want so far.

    ReplyDelete
  18. Why sweat being banned so much? If that is the way the site is run and and you naturally go against their grain, it is inevitable.

    John S

    ReplyDelete
  19. Hi John S,

    I was taken aback at first that I was banned without any warning - I guess I was expecting at least that, given that others relatively new to many sites come on and get a warning for a first time infraction of the rules and aren't automatically dumped.

    I was in the process of letting it go when other people began sending me comments - both published here and not - about their own ban and that just (pun intended) ticked me off more.

    It's one of the bigger sites out there dealing with issues that are important to Lyme patients - and I think if I got dumped off of it because of whatever I did without warning - I have to wonder what other people did to get banned... and some of the banning I've heard about already angered me.

    For example, someone told me they got banned just for warning people about MMS - a supplement made with an industrial chemical which got removed from shelves by the FDA. Now, I'm not a huge fan of the FDA - but I would probably ban MMS myself, independently. Either way, should one get banned from a group just for sharing a warning? If what this person said was in fact true, I have a problem with it. You can either agree or disagree - but let the news announcement of recalls and removals stand.

    I'm working on a post about Facebook groups now... I'm going to go back to that and post it soon. I need to take a break from this, and put it behind me. I have a lot of posts to work on in the pipeline...

    ReplyDelete
  20. It is popular because at one time it was the only real venue. Now it has much competition.

    Welcome to the Lymeworld. In a way I can't believe that you didn't know this was how it was. The Lymies seem to be their worst enemies.

    Anyway, your profile is not like other people's who were banned, e.g. Betty G. I would have never known if you didn't say something.

    John S

    ReplyDelete
  21. Camp Other,

    I wanted to say that I think your posts have been very valuable.

    It is wrong to ban you without warning or reason. Ever the optimist, I can help but wonder if a mistake was made. I've been on the forum for three years and it has always been clear to me WHY someone was banned.

    Rather than speculate about the reason, I'd like to try and track it down, if it's okay with you. You may not want to come back, but I think an explanation is warranted.

    I'll keep in touch via this blog in the meantime.

    Marla

    ReplyDelete
  22. John S,

    Thanks for the welcome? I just posted my commentary on Facebook groups... it's just a little levity I needed today.

    No, even though I have had Lyme disease for several years and been on some mailing lists, I really did not know that this forum was like this.

    Marla,

    Thanks for your feedback. Are there any particular posts which helped you? Any kind of information you'd like more of? I'm always doing research on certain things - right now, one post I'm working on about clinical studies for Lyme patients since I think that's something many of us may have considered at one point or another.

    It's possible I violated some rule I wasn't aware of - I wasn't on the group that long, and used the best judgment I could by following the rules I knew other people had been pointed out on (such as using doctors' initials and not names). But even then, they got a warning and their posts edited, and got to remain.

    I just found out rather abruptly I couldn't log in again. I think a warning in a form of a PM would be justified at the very least, and then if a second similar infraction occurred, then ask the person to leave and give them a chance to leave contact information for others. That's how I'd do it if I ran my own forum.

    I'm not sure I want to come back? I appreciate your efforts to get to the bottom of things, but right now I'm put off by it and need a break from it.

    Thanks for keeping in touch.

    ReplyDelete
  23. Camp Other....have let others know that you did not leave on your own accord. Posted in General Support. I have always found your posts to be courteous and thought provoking, FWIW.

    ReplyDelete
  24. Note to anyone reading:

    If you can recommend any forums where Lyme Borrelia pathogenesis, clinical medicine, microbiology, molecular biology, and such - is discussed between and for patients - please let me know... I'm a dyed-in-the-wool science geek and want more information and somewhere to ask certain kinds of questions... I need that as much as I need other kinds of support.

    Thanks.

    ReplyDelete
  25. I don't know your situation, but I have had the same message before.

    A certain subset of IP addresses were banned that were spamming (and they ranges they chose are a bit off).

    Unplugging your internet router and plugging it back in may give you access again. Worked for me.

    ReplyDelete
  26. Hey Kyle,

    After I got the message I did, I cleared my cache and I reset the router and tried again. No dice. Plus, I've received comments outside the forum that people within the forum could not send me a PM there... Seems like it isn't a simple fix, but thanks for the suggestion.

    ReplyDelete
  27. Didn't see this earlier - sorry whoever you were:

    Anonymous said...

    "Camp Other....have let others know that you did not leave on your own accord. Posted in General Support. I have always found your posts to be courteous and thought provoking, FWIW."
    March 9, 2011 3:25 PM

    Thank you, I appreciate that you passed the word on, and thank you for the compliment.

    If there are any topics that you'd be interested in reading more about that relate to Lyme disease and tickborne infections - let me know and I'll add them to my list of topics to research and eventually blog about them.

    ReplyDelete
  28. Hey CO, I was just reading on the General Support forum about you being banned, and it looks like you have a lot of supporters there.

    Even if you are banned, you can still surf the site, can still read the posts and check out and collect the links to information posted there.

    That is mostly where I find the value in that site. In retrospect, I'm surprised that others haven't been banned themselves after questioning the veracity of the main lab issuing positive Lyme results.

    I just looked up the thread on which you got into an arguement about the veracity of all the conspiracy claims. Run chicken little, run. LoL

    I'll bet you were the object of a complaint by one who bears a resemblance to a golf ball receptacle.

    But I'll be visiting you here on a regular basis and will share anything interesting that comes my way.

    In the meantime, if yo see something over there that bears commenting on, sit the thread and comment here.

    I can't believe they banned you for that, and it is a real cautionary tale for one and all and a real eye opener for me.

    Keep on stirring the pot my friend.

    And remember Big Brother is watching you. Lol

    ReplyDelete
  29. RJ, thanks, man... you have me cracking up.

    I know I can surf the site and comment on it here. I just got ticked off that I was dumped without warning, and continued to be when others told me how they'd been banned.

    I heard they took a number of people off the board whose voices added value to discussions who should have remained - that their infractions were minor, and by the standards of many other fora would go without mention. If this is so, their rules as well as their method for banning people need to be reevaluated.

    I have blog posts lined up which will probably touch on some of the topics discussed there when I was kicked off and also will be writing about other topics which concern Lyme patients and scientists. We'll see how it goes.

    Thanks for dropping by and for continuing to read here. I hope to see more comments on items other than my being banned. (Like did you see the Vmp-like vlsE patent posting? Smokin'. It's crazy. And it's not that new, but few Lyme patients seemed to know about it.)

    ReplyDelete
  30. I was browsing LNE, and I have a feeling you were possibly banned because of negative comments about other users at LymeNet.

    I really enjoyed your posts. And your blog is great, don't get me wrong.

    However, in my opinion there are two extremes:

    Lymenet USA and Lymenet Europe.

    Lymenet has a few people that are into conspiracies, and others who go down the path of unproven treatment. I have done a couple unproven treatments myself that were extremely effective, but if I posted this on LNE I would get either bashed or banned (most likely both). Unproven does not mean they don't work. It may simply mean the treatments haven't been extensively studied.

    One thing I can't stand since getting ill though is bashing of human beings. Sure some of them may be involved in conspiracy theories. You are obviously bright, and most don't have the scientific insight that you have either, but what I don't support is the bashing that goes on at LNE. Lyme disease can hit the brain hard, and if it hits the wrong spot, it can definitely shift your perception on life. Heck, I was even called psychotic at one point. Treating of Bartonella causes agitation, severe panic attacks, anger, and even paranoia. I can't imagine what it would be like to have Lyme disease and co-infections and be permanently stuck in this delusional/paranoid state (as some are!). Since being ill, I have developed a lot of compassion for other human beings.

    However, I do wish there was a forum that was more middle ground, and more importantly, more organized.

    Respectfully,
    Kyle

    ReplyDelete
  31. Kyle,

    I thought about what you said, and when that issue was brought up on the thread, immediately owned up to it. I think what I wrote on LNE could be taken two ways - either one can see oneself in it and be embarrassed, or see that I was not saying something negative about any particular person but saying something negative about people not producing sound evidence in general if they were going to write about conspiracy theories.

    None of it was intended as a criticism of a person, even the one at the top of the thread you might have seen. It was about the content - not the person. If that wasn't communicated and people read it another way, then I do owe someone an apology for not communicating clearly and causing hurt feelings. However, since no one mentioned that to me and I was just banned, then I have been placed in the unfortunate position of not being able to even have that conversation.

    Re: Unproven treatments: I've tried a few things that were unproven too - however I am pretty conservative in how I go about trying new things that are unproven. I cannot say how cautious you are or aren't - you'd have to tell me. Some people are cautious, and some people are not so cautious.

    And one can argue that it's up to everyone to make their own decisions because we're all adults on these forums (yes? I hope so...) but I think there is a line one crosses when one begins encouraging lack of caution or to try something because they had massive herxing - when there's no basis for doing so...That is, a doctor is better qualified to know a herx vs. side effects of a drug. I can speak of my experience, but I am wary about encouraging others to try something unproven.

    Those who are new, those already on different meds, those with preexisting conditions, and those who suspect Lyme disease who have never spoken to a doctor about it are vulnerable - and if they suffer from any of the cognitive or psychotic symptoms you are listing, it is even more vital that folks don't feel pressured into or out of certain decisions about their health.

    And in general, I think that it's fair to warn people about treatments which are marked as dangerous by the FDA and if it's at all possible, share research about individual herbs' benefits and side effects. Both.

    LNE is lacking something, and I could see it in the unanswered personal stories people left there. On LN, someone would be there in a heartbeat to respond to someone's cry for help and support. LNE is also beneficial, in that it has a lot of scientific research posts and members discuss them in detail. LN could use an entire science section of its own, in my opinion - I feel almost completely overrun by alternative things.

    Not that they're all bad, per se - I just feel marginalized by it and think that I've seen such a parade of treatments come and go, it'd be good to see more with staying power that help most patients most of the time.

    On the flipside, LNE comes down pretty hard on ILADS at times and is critical about doctors and guidelines - without seeming to appreciate (well, perhaps they do, and another member will need to explain this to me) the situation North American patients are in with Lyme disease/TBIs and without coming up with their own positive guidelines that are sound.

    If they think existing ones and their citations are flawed, that's one opinion - but of course It's easy to tear something apart and criticize it, isn't it? The hard part is creating something positive and new.

    On one hand, LN people are good at advocacy and awareness, and getting people together to organize to pass legislation... (cont'd)

    ReplyDelete
  32. I could go on like this, and you know I could. I think most people familiar with both could find something they liked and disliked in both forums if they looked.

    And perhaps I am giving an unfair assessment or imbalanced critique early myself, since I am relatively new to these forums. But I won't be able to form a more informed opinion unless I am participating on either of them for longer. I've barely even been on LNE at this point.

    Whether you know it or not, I was incredibly hampered by Lyme disease and coinfections within weeks of being bit. I knew what happened, I did seek treatment - but perhaps it wasn't intense enough, early enough. I couldn't read and understand what I was reading, couldn't follow conversations well, and could barely get out of bed. I know how difficult it can get, and I am deeply sorry it has been difficult for you.

    I wish there was a middle ground forum, too. If more people showed an interest in one... well, we should all build one. You know, that movie? If you build it, they will come? That. Maybe I'll build one.

    ReplyDelete
  33. Note: I am not in any way blaming you for the other stuff that I mentioned (so don't take it personally). I was just pointing out observations and sharing my story. That's all.

    ReplyDelete
  34. Kyle, thanks - clarification wasn't necessary, didn't think you were blaming me - and you did give me food for thought about how I and others communicate with each other.

    ReplyDelete
  35. Meanwhile, I've been hearing some interesting rumors about me... which I won't indulge at the moment other than to say things are crazier than ever. Must substantiate them before saying more.

    It's getting late... it *is* late, really. If anyone else comments after this, there's a good chance it won't get posted until another 8 or 9 hours after I post this.

    ReplyDelete
  36. Update:

    Rumor affirmed from multiple sources: Pamela Weintraub herself apparently linked to my blog.

    ReplyDelete
  37. Someone sent me another Anonymous comment with identifying material which may have needed to be edited out.

    Request for everyone: Please remove any identifying information of other people in your comments - even nicknames - from your Anonymous comments and have them moderated so you are posted as Anonymous or your own username rather than under my username - that way readers know it's from another poster and not me.

    Thanks.

    ---

    Comment:

    You're not even allowed to be discussed on the forum that you were removed from.... many people went to bat for you...one persons post was even removed and the thread closed....in case you're interested, here it is:

    Author Topic: Camp Other topic reopened

    Member posted 10 March, 2011 ---

    /insertname/, do you know why Camp Other was banned? I have a sneaking suspicion that you do (and won't admit to it), but if I am wrong, let me know. The drama here is rediculous. I do think there should be an explanation when banning members. Perhaps I should move away as well.

    Contributor Member posted 10 March, 2011 ---

    Okay, USUALLY someone is given a warning before being banned. At least they are told what they have done wrong. Apparently, in the case of CO, they were banned without warning. He/she tried to log into /this forum/ and could not. They received a message that their IP address was no longer able to post. It was NOT a mistake. /insertname/, I never said that /insertname/ or /insertname/ were banned.

    I KNOW that they left on their own accord. And for the very reasons that I cited, CENSORSHIP. Yes, the moderators do an excellent job for the most part. I AM CERTAIN that CampOther was not banned as a result of violating a rule. CampOther ruffled someones feathers.

    THAT person, for whatever reason, has some power on this board and by a click of her magic slippers, viola, CampOther is gone. I quote "Camp Other- Please stop jerking our members around..... and then the thread was closed to new posts and CO was shortly thereafter....GONE. How does one explain this? CO did not appear to be a troll. In fact his/her responses were well thought out, polite albeit 'challenging'...what is wrong with that??

    I'll tell you, someone found CO's intelligence threatening and that 'someone' has stated that the moderators cannot ban anyone...I'd say that Someone has the owners ear and can do and say whatever they would like on this board w/o fear of being removed. Someone is often rude, aggressive to members without any recourse at all...things that make you go 'hmmm'.

    And it's true, facebook has much better uncensored information available, it is where the real science is. I have been asking for over a year to be removed from this membership..with several letters to the moderators, to no avial....perhaps I have earned my way out with this response. In fact, I'm sure that I have. Newbies, if you'd like good solid advice, there is much better info available on FB....credible info. uncensored info. FWIW. Good Luck and God Bless! ---

    ---- end of comment

    ReplyDelete
  38. So right above, yet another comment from someone.

    Thank you, whoever you are, for your support, and for your support in favor of science. I'm sorry to hear you tried to actually be *removed* from the board and failed.

    Given your comment on Facebook: Please tell me where the good science groups are on Lyme in particular, because I was overwhelmed by too many groups and pages when I looked (as I suspect many people are).

    And I agree: The drama *is* ridiculous. More time needs to be spent on working together to get better research for tickborne infections and better diagnostics and treatment than spending time on these exchanges.

    I don't know how many more of these comments I'm going to post... I've gotten emails, too. I appreciate all the support - thank you - though I have no idea how much of it I can or will share.

    My friends irl want me to go over to their house tonight to watch dvds and get me away from the computer... that might be a good idea. I need a break here.

    ReplyDelete
  39. CO,
    People have been banned for no reason for a long time at LN. I was banned for uncovering a slimey group of people trying to sell a particular product of no value and much harm. I was told I was too much trouble( i.e. too many compaints about my posts). Take it as you will, you ruffled the wrong person's feathers. She seems to have too much influence. She also claims she's not associated with the LDA. Don't believe it.

    ReplyDelete

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