I am very happy to be a part of the freedom that seems to be here.
The freedom to, as it has been put, to a healthy debate.
I am however ashamed that a member can confide in us about a treatment that has worked for the member, and it is ridiculed or misunderstood, despite perfectly defined explanation of each ridiculed aspect.
There are patients here who wonder where the people who are healed have gone.
They are not just gone because they are healed, They are ridiculed out of helping us.
People do not believe them, or say they are trying to sell something, or quote old fashioned notions of Lyme education abandoned because they have already been proven to be or not to be. Yet it is the same as saying Lyme is not chronic. But we found that it is, so we in the know, abandoned the old misinformed theory.
Lyme is Chronic because of Biofilms, cyst forms, and tissue penetration, and other scenarios .
I believe members here have the intelligence enough to understand if the treatment is to expensive for them.
Or is not right for them.
Or if done the complete right way what didnt work before may still be useful if executed correctly.
Yes trust the members to be smart enough to decide for themselves what may work .
Expensive treatments are not singled out to Lyme patients.
One ER visit is 1000 dollars give or take.
A few weeks is naturally expensive.
It has been said, Fundraisers are a wonderful thing in cases such as these.
I ask that we not shut down our success story members.
There must be some jealousy that others have come back to the other side and we are still on the wrong side.
But we need to listen to these people. Not blast them away on the balloon they floated in on.
We really can consider the fundraising thing.
I have considered this before to people.
It is a very proactive healthy magnificent idea.
Especially all of the well wishes from attendees that boosts the universes energy also.
As well as the patient to feel such support.
So please may we only support these people or say nothing at all.
There have been people recently saying they will not post anymore because they have been made to feel so terrible, about informing us.
This is unacceptable .
I believe there are people who were jaw flapping , maybe not realizing the element of sensitivity they were treading upon.
I hope we can think twice before we send these people running for the cozy comfy protection of there own home.
We should make them feel at home here also.
We should stop making people defend themselves.
(Including myself)
Thank you sincerely , Veronica
-------------------- Let us fight with peace. Posts: 90 | From Niles, Ohio | Registered: Aug 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I'm better, and I've stuck around .... and yes, I used an alternative that got bashed so heavily that most who used it seldom post and I blogged rather than posted during my treatment. Now that I've been off abx for a year, I don't get bashed like I used to, but back when I was fighting to get better, there were just a few, but very vocal ones, who were, shall we say, less than supportive.
The ones who bash do it in the name of "protecting" others from scams. I can understand where they're coming from, however, the talk needs to be respectful.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Well look at it this way - people with lyme have limited resources. If I had unlimited money and time sure I could try every single thing out there be it "alternative" or not . But most have neither.
And when there is extraordinary claims made they require extraordinary evidence. That I bet when most "bashers" are coming from. I mean if those things are unchecked there would be so much noise (like its not enough already) that will make it really hard to discern what is good and what is just scam -du -jour.
I mean just yesterday I had to rethink my strategy with supplements/alternatives, because I think I am loosing my grasp on reality (thanks to one LymeMD post - I recommend his blog to all lymies). Do I want try xxx when yyy has tons more evidence behind it?
You sure can spends up to $1000 a month on different herbal/supps and much more on other things, but the thing is there is mostly only anecdotal evidence in support. Can you find better use for the limited resources? -that is the difficult task we have to balance when considering treatment
It easy to lose your priorities (which should be the most effective treatment) in all that conflicting information found in the internet about lyme.
On the other hand people are so very protective of their treatments which seemed to have helped them that many here take every critique very personal and turn defensive.
Sadly it is human nature to react like that - I mean you invest time and money in something and you are basically told that you were a fool because of doing it . Which is huge factor in for everyone to even consider alternative treatments
And if you look on other side - while you might be better many are not and their own health is at stake.They cant try every single thing out there based on anecdotal evidence and testimonials.
p.s. Imho there is one often overlooked aspect of placebo in various treatments -which makes it hard to base efficacy on opinions . Placebo effect is very real and in some cases really strong .
Posts: 856 | From MA | Registered: Jul 2009
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Coltman, healthy debate is good, but some people are downright rude. Fortunately, most of the worst have been kicked off the board. I can't tell you how many times I had to click "report post" when talking about my treatment! And I even had the "I'm trying this out because I can" attitude, not the "everyone has to do this, it's the only way" attitude.
I think it's good that there are those of us willing and able to experiment ..... and talk about it here. Also, many of these alternative treatments will never be studied .... not enough money in it for anyone to be willing to put the money into the studies.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey 49 goofy kids and a mommy to match...
You said.. "The ones who bash do it in the name of "protecting" others from scams."
Isn't that like beating up on someone in advance because someday they may decide, as an adult, they want to go to Paris, France on vacation, rather than NY City?
OH NO, NOT PARIS! It can't be good for you! There is no proof!
That reason you mentioned.. and they do overuse it and act as if it were an acceptable one for being ugly, hateful and cruel.. NO manners what-so-ever... well..
It never made ANY sense to me.
Glad they are off the board now.
It sure makes for a much more peaceful and sane day for everyone.
I think it's good that there are those of us willing and able to experiment ..... and talk about it here. Also, many of these alternative treatments will never be studied .... not enough money in it for anyone to be willing to put the money into the studies. [/QB]
That I agree. I am personally grateful for all people out there trying the alternatives and posting/blogging about their experiences. Because otherwise there would be no information at all about those things.
Posts: 856 | From MA | Registered: Jul 2009
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OK everyone ... how do we support one another and not hurt one another? I know we would absolutely love to kick the crap out of the tick that bit us but we shouldn't kick the crap out of one another based on the pure frustration we all experience in fighting Lyme and other TBD's.
We are all fighting these horrible diseases and we need to support one another ... it ain't easy but it can be done with a little compassion and understanding of what we are all going through.
Thank you ... love all of you,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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posted
I just want to say that lymenet has been an invaluable resource for me and my family. My daughter's life has literally been saved through lymenet.
I have learned about alternatives outside the box that I am now using that are helping me.
Thank you to all those who take risk to themselves to share and report back. Without this site and its brave users at least two in my family would likely be disabled at this point
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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lightparfait
Frequent Contributor (1K+ posts)
Member # 22022
posted
I love the debate when it is honest and related to personal experience. Then it is positive and productive.
But when daggers come out against those who are willing to try something "out of the box", then I have a problem. that is not helpful to anyone, and especially the one posting it. Negativity is the most anti-healing therapy around to all who have to read it. It puts everyone on edge whether in the debate or not.
Words are either life giving or create death internally. Words are very powerful. We need to choose wisely if we can when we post.
Didn't the majority of people believe the world was flat at some point in time, until someone took a risk to prove a theory! Science was not behind him, but he trusted his intuition and shared his positive findings!
Many believe their world is flat on this forum...and so be it. But please do not pass your venum onto those you think are nuts, the ones who will report when they found the new world.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
I feel scared to speak my mind even thought I don't mentioned llmds names. But I have things to say but I literally get a belly ache when I push the "post" button or whatever it is. Sometimes I wonder why I even come back. This board has a reputation for not accepting others' ideas and people get "politely" bashed if it doesn't go along with what some or most people think. It's almost like "how dare you go against the norm.
I have a love/hate relationship with this board and this place isn't supposed to be a cult....it should be support forum. And since we are being honest, that's how I feel.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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WildCondor
Unregistered
posted
We should be able to post our opinions and experiences and tell the truth without being censored or having our posts deleted for no reason. Just because someone disagrees with the content of a post should not be grounds for removal. Most of the people who knew what they were talking about do not post here any longer because they grew tired of the situation here. I'm going to be joining them shortly if things do not start improving. We should have our freedom of speech respected, and recognize that a good healthy argument can be educational and is not meant as a personal attack. I'm tired of the people who think they own this place telling me how to post,when no rules agreed to have been broken, what to say, how to say it, and to tip-toe around the issue at hand. I am going to speak my mind, tell the truth, and work on saving lives. If you don't agree, or like what you read, then scroll on by.
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quote:Originally posted by Beautiful Disaster: I feel scared to speak my mind even thought I don't mentioned llmds names. But I have things to say but I literally get a belly ache when I push the "post" button or whatever it is. Sometimes I wonder why I even come back. This board has a reputation for not accepting others' ideas and people get "politely" bashed if it doesn't go along with what some or most people think. It's almost like "how dare you go against the norm.
I have a love/hate relationship with this board and this place isn't supposed to be a cult....it should be support forum. And since we are being honest, that's how I feel.
Beautiful Disaster,
You made a similar post in June titled "I need to know now....who has gotten better from this board? The truth..."
Many people (over 40) responded to you with kind, supportive, encouraging posts. I don't know if you read their responses because you never posted back on that thread.
On this post, you said this board has a reputation for not accepting others and it's a cult. How do I start responding to you when you've already have the opinion that "everyone" is against you?
I'm being honest. I don't want to make you feel bad and I do want to support/help you. I just can't tell if you really want support and answers.
The majority of members are kind, supportive, and willing to help.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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I'm glad you did post because so we know what is going on. I'm sorry this is happening to you. I know how sick you have been recently.
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Origignally posted by Veromia: (my bolding)
I am however ashamed that a member can confide in us about a treatment that has worked for the member, and it is ridiculed or misunderstood, despite perfectly defined explanation of each ridiculed aspect.
I'm guessing that you may not have neurological involvement if you can not understand how some may misunderstand things that seem "perfectly defined" to you. Things that may seem perfectly clear to others may not seem as clear when one has neurological involvement.
I am curious as to how you are able to make the following assessment being "new to Lymenet". How can you make such a claim?
quote: I am new to Lymenet.
quote: There are patients here who wonder where the people who are healed have gone.
They are not just gone because they are healed, They are ridiculed out of helping us.
Do you know for a fact that people do not leave because they have healed & moved on with their lives or that they have not gone to another forum because of the intolerance and criticism that is repeatedly displayed here?
Perhaps this is an assumption, based on your present perspective. I am sure there could be numerous reasons why someone who has healed would no longer frequent this forum besides the one you have stated.
quote:I believe members here have the intelligence enough to understand if the treatment is to expensive for them.
Or is not right for them.
Or if done the complete right way what didnt work before may still be useful if executed correctly.
Yes trust the members to be smart enough to decide for themselves what may work .
Perhaps some do have full capacity to utilize deductive reasoning and do research but I'm sure there are some who at times, whether because of neurological impairment or die off or herxing or crushing exhaustion, do not have the where-with-all to formulate an educated opinion of their own.
They may be having difficulty reading &/or comprehending studies or written material or just be too fatigued to try.
It's not that they may not be SMART enough, but some MAY be temporarily struggling with learning impairments and this IS a support forum.
If not supporting people experiencing THOSE symptoms, we are only supporting people whose manifestations we deem worthy. Doesn't that make some of us no better at supporting ALL Lyme sufferers than the "doctors" we criticize?
Does anyone consider that the people who bash may not have full control over their "censor buttons"? Neurological Lyme can impair many aspects of our communication skills.
Aren't some of these posts actually criticizing or "bashing" those who post in a manner that you find too abrasive in some way similar to what they do?
It may be phrased more "politely" but none-the-less it could also be hurtful. It's not like the person(people?) you're resferring to are not in the room & you're just talking behind their backs. You KNOW they will be reading this.
Perhaps it's the self-policing here that causes things to escalate and if objectionable posts were just ignored & reported to the moderators so many people wouldn't end up getting hurt by huge flame wars.
I wish I knew the solution because I really hate to see people hurting each other over & over again.
Nobody likes to feel like their being bashed.
I've been bashed in the past for merely asking interested questions on alternative threads. Those posts would be deleted by the author soon after I responded so it's likely that no one would have any idea why I won't even open alternative threads that might interest me anymore.
I'm sick of becoming intrigued, doing some research, asking questions & getting "slapped" for trying to garner a better understanding.
Perhaps that may have happened to others who post with hostility or less than politely, they just don't delete their posts so everyone sees what THEY'VE posted, but not what's been directed at them that antagonizes them....as for me I just learned to wait for alternative information to show up in a study or something.
I've also learned that if I should find something interesting enough to do my own research and I find negative information, I should keep it to myself because sharing it seems to be viewed as bashing.
It has been expressed to me that some who post about alternative things do not welcome anything in their threads which may be less than fully supportive.
I've been hurt enough that I respect their desire to be left alone to have only those who wouldn't challenge anything posting in their threads. (At least that's what I assume is going on as I don't even look anymore.)
It's actually a shame because I used to find some very interesting discussions about pros & cons of alternative ideas here, now it seems very lopsided. I used to feel like we were all researching possibilities....
I have no idea what may have happened to cause you to start this thread because I haven't witnessed anything lately.
As for fundraising? If I had anything but mounting debt I'd surely give to Lymenet, Lyme Disease Association, Columbia Lyme and a bunch of other charitable organizations dedicated to helping Tick-borne disease sufferers.
I've already gotten myself into a giant hole by spending money I didn't have on any alternative thing I thought might help me, prior to knowing what I was battling and then anything that offered hope of faster recovery.
I KNOW!!!!!! Perhaps those who are posting in a bashing fashion are jealous because they don't personally have any more throw away funds and couldn't afford to try some of those things themselves without feeling absolutely certain that there was an extremely high likelihood that it would be successful.
Perhaps frustration intolerance (a Lyme symptom), coupled with Lyme's impairment of communication abilities, causes them to post in a way that's perceived by others as "bashing".
Perhaps they're afraid that someone else who's neurologically impaired & desperate will end up in the same boat by doing what they did and they wish someone else would have stopped them before they were in debt up to their eyeballs.
Perhaps they are now in a position where they can't afford to continue ABX that WERE helping them because they desperately spent every last penny looking for an easy fix, only to realize that there wasn't one.
Perhaps they were once very optimistic that THEY would find the magic instant "cure" only to be repeatedly disappointed.
I think many of us could benefit from learning to be more tolerant of each other's shortcomings, and open to different perspectives even though we may not agree with them.
I think that different perspectives, even when in complete opposition to each other, give us the best chance for actually finding effective solutions in the shortest amount of time, in the most cost effective manner.
Have the person/s that this thread was designed to criticize made no valuable contributions to this community?
Have they had nothing positive or constructive to add?
Have they not shared their own experiences, so that others might benefit?
Do they not offer a different perspective, one which others are free to dismiss if they so choose?
Is this person's opinion so highly valued by all who might read that they would take the hurtful nature of their statements as anything other than those of a person, suffering with tick-borne diseases, possibly having a bad day?
I don't like it one bit when I feel I am being "bashed". I'm trying VERY hard not to do it to others.
Please keep in mind that I have NO CLUE what may have recently transpired to trigger this thread. I've just seen this type of admonishment on this board quite a few times over the years & have posted threads myself when I've been highly upset by two-sided hatefulness posted in previous flaming board battles.
As Lou said:
quote:We are all fighting these horrible diseases and we need to support one another ... it ain't easy but it can be done with a little compassion and understanding of what we are all going through.
The key being that we are ALL going through this, even though some have different manifestations at different times. Some have heightened sensitivity and others have frustration intolerance.
The day may come when those who have one experience the other and the shoe is on the other foot.
It's NOT easy by any means but we all need to TRY to cut each other slack when we get upset.
I like to try to ask Lou's opinion sometimes when I feel upset by something someone has posted. That serves two purposes for me.
1) He doesn't have Lyme & I think he may be able to offer me better perspective before I post something out of frustration that I may later regret.
2) He can also mediate neutrally & "talk" to the person about how their post was perceived.
Lou's a great guy & I believe that he really does care about helping to keep us from hurting each other. He's seen/read an awful lot and I believe has a pretty good understanding of the emotional challenges & impulse control issues we sometimes face.
There are also others on the board who's opinions I've come to respect that I might ask if they perceive a post directed to me in the same manner that I do before I respond.
I realize that I don't always know what another person's personal challenges are or what their situation/history may be. I don't always know what abuses they may have suffered.
There is one thing I know & that is that we ALL have had people cause us emotional pain, whether it be our Drs., friends, family and/or our loved ones. We generally come here to try to find some sort of relief from the anguish of these diseases.
I think we all need to try to give the same effort to compassion and forgiveness that we would hope others would give to us.
If we are able to support those who may not seem very supportive of others then perhaps they will calm down, some of their anger/frustration (some might say "nastiness") will dissipate and they might see things differently.
If we add to the emotional abuse that they receive, they will likely only become more frustrated and their posts become more hostile.
Perhaps if no one responded to whatever started whatever happened and instead everyone just hit "report this post" & went on with the conversation as though it hadn't been posted, they moderator could have dealt with it.
If the poster was looking cause upset and received no reaction, I should think that they might move on to something else. One person can't have an argument all by themselves.
I'm so sorry, I don't know what got into me. I guess I got up on the wrong side of the bed this morning or something.
I'm going to stop this now & get out of this thread. I think I've managed to depress myself.
Maybe I need a break from this board for a while.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Wow
Feelfit you must have posted while I was composing that novel.
I think it sounds like you could use one of these:
I just wanted to add one more thought.....
When I came to this board, I was not able to think clearly for myself and I was DESPERATE to try ANYTHING that I thought might resolve that problem for me.
I am now and will be eternally grateful to the posters who did post studies and information that I may have been able to use to make fully-informed decisions on what I should or shouldn't be using my available credit to pay for.
Had I jumped at trying every possible thing I could fit on my charge card, I would have been up spit's creek without a paddle when my insurance company refused to pay for the IV treatment that DID clear up my ability to think.
I think it's a darned shame that people currently looking to Lymenet for information don't have the benefit of seeing all the pros & cons of any treatments all discussed in one or two threads.
Many people who would share negative information no longer do so for fear of being "bashed" themselves.
I really wish all people could always post civilly, including those who may have been sensitized by previous arguments with other posters.
Unfortunately it seems these diseases often make it difficult for us to avoid hurting or having hurt feelings and sometimes even more difficult to avoid reacting from a place of hurt.
I had actually asked a question of someone who was holding out a therapy as a magnificent find and was told to research it myself or to call the manufacturer & ask them when they didn't answer my e-mails.
I was having a little problem I refer to as "phone-a-phobia" at the time. For some reason I found it almost paralyzing to pick up the phone & make a call. To have someone tell me that I should call, when I was asking a question in the thread since someone might already have known the answer was hurtful.
I wasn't about to say I can't make the call because I'm having some kind of PROBLEM actually making calls. It sounds ridiculous & I found having that particular issue very embarrassing.
I still haven't gotten over the hurt of asking for help, being refused it and having my concerns belittled on a support forum by someone who's been a member for a very long time. Especially when they had been previously banned & I plead their case to the moderators for them to be allowed back.
Perhaps I should have left well enough alone when they were banned because I really question whether they are motivated by a desire to provide support to others, if others may have difficulty seeing things from their desired point of view.
It's truly a sad situation.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bettyg
Unregistered
posted
ali, thank you for sharing your heart and soul on this post! as usual, you did one heck of a job explaining things and POLITE as usual. well done my friend. hugs/kisses
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
as usual, i'm completely in the dark as to what happened.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
not even sure why i am posting but might i remind everyone here of the amount of energy it takes to fight this disease.....energy spent on anything else is just a waste of time....
whatever is bothering you...let it go.
if your being supportive on here keep doing it and 99% of the people i have met on here are just that.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
This Topic has gone far enough ... enough of "he said ... she said". Enough of users attempting to "police" the LymeNet Flash BB. That should ONLY be done by the Moderators.
Please just post what you want about Lyme and treatments and support and nothing about what you believe about other users views or intent. OK? Please don't judge other users unless you see a post that clearly violates the LymeNet User Agreement which is at: http://flash.lymenet.org/scripts/ultimatebb.cgi/ubb/agree_review In that case, use Report A Post and let the Moderators handle it.
I'm now closing this Topic.
Thanks and take care,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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