posted
I think it's sad that we all can't get along. I feel bad for anyone coming here for help and having to deal with all the negative stuff here.
I worry what people must think of us. We're trying to get people to take Lyme seriously, but if you read some of the posts here it makes you wonder.
If you can't say something nice, just don't say anything at all.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Definitely hit the "nail on the head", from what I've seen.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Im sorry everyone,
I could not keep it in any longer, I was far too upset to not post this, it is something that has made me leave this board,
and that was directed at me personally, with no heart whatsover, and I dont need that, I will not stand for that, it has happened and
it will continue to happen,
hope you all get well,
It may seem silly to post this, but when you have hit rock bottom you are NOT the same, and cannot handle things like you could handle when you were well.
I have wanted to post this for awhile, I just let it go, until things got to upsetting for me,\
Trish
[ 09. November 2007, 11:41 PM: Message edited by: Health ]
Posts: 1250 | From Canada | Registered: Aug 2004
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
I think Trish's posts speak volumes. If even one person is upset by the dynamics of the board, then there is a serious problem. There are a lot of sick people here in varying stages of their disease and recovery, and no one should be made to feel any less significant than another. If this is a board that is supposed to be endorsed by the Lyme Disease Association, then the owners need to take a long hard look at how things are going and why so many sick people are unhappy. It's time to stop playing games with people's emotions and clean up this board and make it something to be proud of.
There will always be varying opinions on how to get well - there is no one way that is better than another, no matter how passionate the endorser is.
I realize it is easy to play armchair analyst and make comments about how a board is run, but this site has had problems for many years and it is not getting better.
You simply cannot run a board of this size with only one moderator....Lou talks about his 'staff'....well the only 'staff' that ever shows up is Jenifer. No wonder she is cranky in her replies to people - she's the only one doing anything around here to hold the board together from the administrative standpoint....And please tell me who the heck Toby is???? Does he/she really exist?
**Hopefully lymenet will continue to be a safe place for critical thinkers like Cave who have been so generous in sharing their knowledge and experience to help others with TBDs.**
While I think the above quote is a wonderful sentiment, I see it as unrealistic. I don't believe that the administrators of this board will ever encourage critical thinking. They will continue to attempt to keep board members in line and discourage creative thinking by banning or threatening, which in turn frightens those that have no outside support to help them get thru this.
Ultimately you have people afraid to speak out about anything. How is this behavior any different than what a lot of ducks have done to us when we were searching for answers? Weren't we stiffled or literally 'banned' for our opinions or questions? Why should we have to endure that same kind of behavior at a place that is supposed to help us?
There are other boards out there, folks, that offer a much calmer and more supportive environment. You may be told that they are not as good as lymenet, but do not be afraid to check them out and draw your own conclusions. There is nothing wrong with using multiple sources for support and information and you might be pleasantly surprised.... cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
.
Posts: 1250 | From Canada | Registered: Aug 2004
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JimBoB
Unregistered
posted
quote:Originally posted by heiwalove: i feel like this entire thread is an attack on one particular member here and it makes me really uncomfortable, really sad.
i'm so sorry you feel this way, trish. i'm so sorry you've been hurt. i say that with all the genuineness, love, and honesty i hold in my heart.
but i really don't think a whole thread bashing another lymenet member should be allowed to stand.
I agree. I rarely come to LymeNet anymore. As I have way too much to do to spend all the time it takes to defend a "good" healing protocol. I rarely read posts IF they don't have to do with herbs, when I do.
Maybe if some would not continually be putting down 'other' ways of healing, they wouldn't be getting into, or feel like they are in hot water all the time.
Everyone on here has SOMETHING to say, or we wouldn't be on here. We ALL have some kind of experience, good or bad.
Don't keep attacking others, and maybe you won't be attacked back. Plain and simple.
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
....actually it's no wonder the old timers are jumping ship and leaving this forum to the alternativistas.
Most of us have had enough of having what got us well called, sneeringly, 'allopathic medicine'.
Yet they can't take a joke about talking pills or drinking pee.
Or ingesting pool chemicals or moving furniture around to get it away from the cat.
I can't in good conscience refer people to this forum and I have a family member who desperately needs it but he's highly susceptible to hokey nonsense and I just convinced him to take bactrim...if he reads here he'll go off drinking weak insipid herbal teas and reading hulda clark BS and probably get all his teeth pulled.
You people ought to be ashamed of yourselves for ruining a good medical forum.
Charlie
Posts: 2804 | From Texas | Registered: Oct 2000
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
this board has gone down the tube or toilet over the years nothing like five or six years ago.
It is sad I think elementary school is better then this?
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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posted
Even with the goings on I still come and sift through the site and find new and useful info. I have tried abx on and off and have made improvement in some areas but believe that herbs, detox, and alternative methods are a must for me.
As far as Gigi goes, she has done nothing but help me. Same goes for jimbob and anyone else who has seen real results with alternative treatments. I am thankful to have the ability to ask questions from people who have success with treatments.
It gets very frustrating when you spend thousands of hours learning, researching and figuring things out and trying them yourself with success then trying to help others with what you learn only to be faught off. I am sure this has happened to some of us in other areas of life.
My point is without everyones input our HUGE online resource here will diminish.
I would also like to add that when I feel hopeful about trying a new approach and read how it is hocus pocus it gets discouraging.
Good luck to all
Posts: 413 | From nj | Registered: Nov 2005
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posted
Maybe under "Medical" there should be 2 subgroups..."Conventional Medicine" and "Alternative Medicine."
Everyone should be able to speak about their personal experiences without others minimizing it. It's just plain rude and insensitive. On the other hand, maybe some of us can lighten up a bit. If someone is rude to you, maybe just very briefly say you were offended and then move on. I wouldn't get into a bickering match with them. It's a waste of your time. Who cares what they think. Don't allow someone to have that kind of power over you.
Also, I think it's irresponsible for people to speak about their experiences as if it's gospel. We have to be careful not to imply that THIS IS THE WAY AND THE ONLY WAY. Your experiences really should only be stated as an experience you had. What worked for you may not work for others, especially if it hasn't been rigorously tested. And reportings of adverse effects should always be welcomed. People are, after all, trying to get better, and being informed is the best way to make that happen.
Health, thank you for sharing your experiences. I'm positive you have helped others and have probably kept some from making hasty decisions.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Looking, I would agree that both "sides" have gotten their jibes in, and I do not read thoroughly enough (nor do I want) to evaluate who did it more, who went first, etc.
RoadRunner, there have always been people on Lymenet testifying about alternative therapies. Remember when colloidal silver was a biggie? Rife was pretty much a new thing for Lyme then. I don't think anyone was doing hyperbaric oxygen yet. And just a couple of years ago, everyone was evaluating Podi Patches.
Soleilpie, it was brought up before to have two separate forums. I agree with you. The argument against it seemed to be that treatment isn't "ours" or "theirs," but it's a continuum, a blend of treatments for most. If I'm wondering about taking vitamin C, is that conventional treatment or CAM (complementary and alternative medicine)? Should I salt my food or not? But isn't salt/C a CAM protocol?
When I came on the board in 2001, I saw different approaches, and was able to sift through different opinions and decide on my care. (Unfortunately, the $$$ ran out before I could do everything I wanted, and chronic Lyme is probably the result.)
The difference now is, there are many different approaches, and posts are flying faster now than they did even 5 years ago. (Thanks to the IDSA, there are more patients than ever.)
Are people able to evaluate it all? I think so, but I think separating the two basic outlooks will help people get to the kinds of posts they are looking for easier, and will help posts stay on the front page longer.
Just my $.02, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
quote:Originally posted by shazdancer:
RoadRunner, there have always been people on Lymenet testifying about alternative therapies. Remember when colloidal silver was a biggie? Rife was pretty much a new thing for Lyme then. I don't think anyone was doing hyperbaric oxygen yet. And just a couple of years ago, everyone was evaluating Podi Patches.
Shaz
this has nothing to do with alternative therapies for me anyway I would try anything to get better and did. just all the cry babies and name calling is wrong. it is alright to debate.
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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We should all remember that this is to be a discussion, with the dictionary definition ``Consideration of a subject by a group; an earnest conversation."
I believe we should all try to keep in mind that most people who write in this board in facing the same difficulties, such as being ill, anxious, frightened, angry, depressed, and hurting. Perhaps they are a lot sicker than you are, and perhaps there is a lot more going on with their bodies than any one of us "non-professionals" know. Many of us are in need of advice or sympathy. When replying to someone obviously in pain, seeking answers, we should all be sympathetic instead of stating a huge dictation of the facts they believe to be true. . This particular argument (not discussion) does not seem to be about Mercury, but being opinionated and almost "showing off" to the rest of the Lyme Community. "See! Look what I know!"
Obviously, we would not even have this site if there was not such a need. What are people looking for in this blog? I believe (my opinion only) that they are in need of an answer, or perhaps a suggestion to our problems, an outlet for out pain, and to expect a respectful, compassionate answer. It reminds me of the arguments we as Americans are have between each other whether it be on religion, politics, schools, and similar subjects. Many times it seems that those who rattle the cage the loudest wants to be "right" and in power.
We are all human beings on this planet, and regardless of our beliefs, opinions, knowledge or lack there of, we all should spend our time helping one another. There is no time on this blog when one should attack another. Would we do this to our children, our minister, and our grandmother? I believe the danger of the boards and email is that it is too easy for people to take out their frustrations on some innocent person that was only expecting help.
Before we write our response, we should try our best to offer suggestions and show respect to those who disagree. I do not think any one of us want to be chastised for our comments or questions.
Years ago I had a neighbor who hated me I never knew why, but I came to understand that I was not her only target. My mother gave me very good advice: "Kill them with kindness." This may make the other upset or angry, however, you will be better for it. Always take the high road.
Oh, by the way, when I first was on this blog, someone famous here, chastised me for calling Lyme disease "Lymes.'' Can you believe I called it Lymes? Oh, I should be shackled!
Peace and Love to all! Posts: 75 | From NC | Registered: Dec 2004
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sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
"Everything in moderation."
That's the problem. No moderation has been observed.
We need moderators!
Posts: 4258 | From over there | Registered: Jul 2001
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
I'm with you, RR and NC. Someday down the road, perhaps someone will figure out that boiled eye of newt absolutely cures Lyme. Boy, will we feel silly if we've been swearing by some other treatment all these years!
We are trying to get to the best answers we have right now. Maybe it's something one individual tried, maybe it's backed by research. State your case, honestly, and let people evaluate for themselves.
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Soleilpie said:
Maybe under "Medical" there should be 2 subgroups..."Conventional Medicine" and "Alternative Medicine."
AGREE!
It could be a solution!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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cootiegirl
Frequent Contributor (1K+ posts)
Member # 3216
posted
This was suggested a few years ago when there were similar problems, and was veteoed by the staff. I believe the staff's position at that time was that these are all forms of treatment and if someone does not agree with an alternative form thread, then SOB...Having too many sub-sections might be confusing to lymebrains and some good information might potentially be lost.
I think that people are missing the big picture. This has little to do with how many subsections we have or how many ways there are to treat lyme. This has everything to do with how people are treated around here by both board members and the lymenet staff.
cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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posted
Cootiegirl I agree that this whole upset is mainly about being disrespected.
However, I have seen a couple of complaints about the 1st page of "Medical" having mostly alternative medicine and burying the conventional and vice versa. I think one solution might be 2 subsections off of medical.
Maybe it could be set up where, when you click on Medical, you get 2 choices. I think setting it up this way wouldn't make it too difficult for those with Lyme brain.
Oh and I think the other issue some people were having is when a treatment is stated as a matter of fact, when it's really just a personal experience.
It's extremely careless to be irresponsible with your words on this board. Some people are easily influenced by those they think are in the know.
This irks me just about as much as when people post their IGeneX results and others come in and tell them that they definitely have Lyme disease. That is irresponsible. I mean how many times do we complain that Lyme testing is inaccurate.
This applies even to tests by IGenex. IGenex just happens to be the best because they test for more bands and their technique seems to be better, resulting in more accurate results, but their test still isn't optimal.
So basically, be respectful to one another and be responsible with your words.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
I agree, I think there must be a way to have conventional and alternative sections on the board.
Anyone who is searching for info could easily click on both sections.
Like someone said, there is just so much information coming in now, it really makes it hard to sort through all of the threads.
I also think charlie is a breath of fresh air. He always makes me laugh! I hope that is still allowed!
Posts: 1366 | From Southeast | Registered: Sep 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I am with you all that regardless of treatment choices, the bottom line issue is the need for everyone to treat one another with respect, whether they deserve it or not.
If we use subtopics of medical, I would prefer the term pharmaceutical over conventional. Long term antibiotics are not considered conventional yet, and some nutritional supplements are considered conventional.
Perhaps it could be helpful to have a section with pharmaceutical questions and another for complementary medicine and alternative therapy questions.
Such a split would still not stop people who care to be hecklers from visiting what they consider the "other side."
And if we did split this way, where should people post their questions about "do you think I have lyme?"
I am so sorry that any of you have been hurt by anybody, in this virtual place where you have come to heal.
My request is that we all treat one another with respect, even if you think the other person doesn't deserve it. We'll love you for it!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Is it really a big deal to separate? In the German forum
There's one part called Medizinische Spekulation, meaning Medical Speculation, that's the title they decided to make for 'unconventional/ alternative'. Only there, people can post about things like
- salt/C, - heavy metal chelation, - traditional Chinese therapies - Dr.K. - bioressonance -...
Discussions there are sometimes hot too, but at least one can take a closer look of the alternatives grouped in one part.
And the 'medical part' (which is divided in 3 though: lyme, coinfections, general medical questions) gets more 'clean' from 'speculative therapies'!!!
I don't know, it sounds for me the best solution... This won't end discussions for sure, but possibly easen a bit and make things 'clearer' for the foggy lyme brain. If s/he is to choose a therapy without having his/ her full mental ability, s/he wouldn't go directly to the part called 'speculative therapies' or 'unconventional therapies', right?
Just my 2 cents too!
Posts: 1086 | From Switzerland | Registered: Oct 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Cannot believe what is going on with Lymenet
I do people are in pain minds messed up from lyme tempers flare yeah i can believe it. Geez normal socalled people are half nuts today.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I agree that Charlie is a breath of fresh air; he is absolutely hysterical and makes me literally laugh out loud!! I wait for his jokes...they are such gems!!!!
Charlie, you are great!!!! I have never seen anyone as funny and witty as you on here, or anywhere!!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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