Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Just got this e-mail. Not sure I want to give info to people I don't know. If you have any info about this, please let us know here.
I found the part about posting "Medical Professionals" a bit scary!
Ann - OH
[quote] Dearest Lyme disease community leaders,
I am pleased to inform you of a new website.
LymeNews.com welcomes your participation by including a listing of your state or local resource, support group information, Lyme literate medical professionals, activist notifications and patient or caregiver information for those in your proximity that are searching for contact information or support.
If you would like to list a support group, please provide the following:
Title of group Location Contact information Name of contact person E-mail Telephone (if any) Website URL (if any) Mission statement and/or comments
If you would like to list a medical professional, please contact the LymeNews Administrator at [email protected]
Reciprocal links for those with websites will also be offered.
The LymeNews staff would like to invite you to extend our invitation to others you know that may be interested in this resource. Please feel free to use the invitation below via e-mail.
The LymeNews staff wishes to express our sincerest gratitude for your commitment to our common cause, and welcomes this opportunity to contribute.
posted
I agree. Maybe well intended but very naive. No, no, no on listing treating LLMDs. Have you tried e-mailing them?
Did you notice how long that agreement thingee is?
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
Ann, this new site was established with all the crap going on at this site lately.
I was sent a email to join this by a respected member of this board. I joined. There are 8 moderators whose names are shown; 1 administrator whose name I've not been able to find out yet.
Majority of posters are from this board.
Support groups/LLMD...I was not aware of anything on this. They are still working out all the bugs.
posted
Gee, five stars doesn't get me an invite. So maybe my opinion not wanted. Here it is anyway. This kind of thing keeps happening. The result is a bunch of different groups, none fully supported by everyone. Running on one cylinder. Several years ago a troll attack here caused another spin off website/forum. It is still around but very inactive. Ask a question and you never get an answer.
Lyme Alliance tried to do a website and a free newsletter. Didn't get enough help. Folded.
LDA and LDF not working together, both needing money for various lyme causes.
Trouble is too many things going on, not coordinated, handful of people trying to do stuff, most people not on board.
It is true we are up against city hall, but maybe we would get farther if everyone helped and there was some coordination/cooperation.
Posts: 8430 | From Not available | Registered: Oct 2000
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dear friends,
I would like to try and address your concern over this new website.
From what I understand, this site was begun by several lyme patients and activists as an alternative home during the recent uncertainty that LymeNet experienced.
If you visit the site, you will recognize familiar faces and forums. The goals are the same- to provide an arena for patient concerns where they can give and receive accurate information and support.
I do not see it as an attempt to divide our family, but as one of continued care. I do hope that before judging, you will visit the site to see what they are doing.
My best, Melanie
The complete invitation that I received follows: --------------------------------------------------------------------------
Greetings,
You are cordially invited to visit a new web site, LymeNews.com, which is owned, created and moderated by people who care about you and your concerns about tick borne diseases. LymeNews was developed to provide education and support for medical professionals, Lyme disease patients and the general public. There is no fee to become a member and the registration process is simple.
LymeNews.com features a state of the art discussion board for people to exchange ideas and ask questions. A section for medical questions, animal concerns or talk, just for fun, and off topic is provided for those who would like to interact with other members.
A library for viewing abstracts is conveniently divided into sections, including children's issues, medical abstracts and alternative medical care.
It was our goal to create a site where questions can be answered and ideas shared in an integrated and comfortable setting. Please note we are a "work in progress" and you may experience some opening glitches until all the bugs are worked out. If you have any questions about LymeNews.com, please contact the moderators. They will be pleased to assist you. We look forward to seeing you and hope you enjoy your visit.
the LymeNews.com Staff
Posts: 7052 | From Colorado | Registered: Mar 2003
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Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
I was invited to the new site, and quite frankly found it non threating to this site.
If I recall correctly, Lymenet was going to be shut down, or made so that only those who paid could post when the offer came forward as a compliment to this site for those who could not afford to post here, or get information.
This site seems to be professional, and quite honestly, I feel secure there. I dont know the moderators there any more than I know the moderators here, but find them responsive to my questions when asked, and find they have well a well thought out site.
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
quote:Originally posted by lou: Several years ago a troll attack here caused another spin off website/forum. It is still around but very inactive. Ask a question and you never get an answer. Guess time will tell
LDA and LDF not working together, both needing money for various lyme causes.
your right, it would be nice for each of them to get together as define strenght and weakness and work side by side. LDF is great for "deer feed stations" and the likes, while LDA is great on the legislative efforts. To see them a team would be a DREAM COME TRUE
Trouble is too many things going on, not coordinated, handful of people trying to do stuff, most people not on board.
It is true we are up against city hall, but maybe we would get farther if everyone helped and there was some coordination/cooperation.
Lou, your are right...Are you aware that when I tried to talk to your moderator, I was never responded to over a period of 9 months. Are you aware that it took over 6 months to get the Oregon Lyme Network on your board, and that I still am waiting for the CORRECT URL to be updated. The final URL was created when I became incorporated and affiliated with LDA, just prior to last years conferenct. This coordination and cooperation needs to be both ways. Not just us towards LymeNet.
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
[QUOTE]Originally posted by Ann-OH: If you would like to list a medical professional, please contact the LymeNews Administrator at [email protected] Ann Oh, I contacte the admin about this, have you?
They responded that some doctors have given written approval to be listed on the site. Those are the only doctors that they will list. Evidently some states had listed physicians in their comment area, and to not be overmoderating, they chose a different angle, to EMAIL the administrator if they had a physician, so that the admin could see if the physician has given written approval to be listed.
They have NOT listed any physicians on the site, in fact you CANNOT even accidently list one because it changes their name. (I accidently posted that Dr. S saw my daughter..but I used his full name, and it changed it to Dr. S automatically)
Posts: 1918 | From Central, Oregon | Registered: Apr 2002
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
Thanks to everyone for the info about LymeNews. I still don't get much specific info if I go to LymeNews.com. I am such a luddite, I am sure I am missing something I should be doing!
Glad to hear good people founded and run it. Glad to hear only docs who approve are listed there. Glad to hear there are no bad feelings toward Lymenet.
Lou is not Lou B. Lou B. is affiliated with Lymenet, not Lou. Lots of people make that mistake. Both are good people.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
PS..Please don';t make my words out to be anything other than supportive for both sites...ok?
Thanks,
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Lishs mom...I really don't understand your intentions here.
(ALthough I beleive they are good however focused with a little tunnel vision. ...for example you can't even seem to recognize who you are speaking to. (Lou vs Lou B)
I do know that you mean well...once again I have to re-iterate that...without question I know this.
However, I am speechless as to what the web site www.proft.org has to do with anything here?
I have had the costs that they posted reviewed by a VERY reputable IT staff at one international company abd also reviewed by a local server fella in my hometown here...after explaining the preferences and OVERALL funnelling of funds for this site...they thought it was a steel. (Remember some of these funds go to support things that are NOT Lymenet the website, but are involved in spreading the word about Lyme.)
Please, Let those that prefer Lymenet have some peace here.
Please...please just allow us to exist over here (without your insistance that this site is a rip-off and run by trolls)...which has existed in peace for a VERY long time (Except that period earlier this year) and successfully helped so many THOUSANDS continue.
I need to add that you have tested the waters here enough and if you don't like the temperature...get out, or maybe help improve the scenario a little bit...your talents are incredible....so help us.
Respectfully, (To a Good Person)
Trout
PS...Next you'll be accusing ME of being a troll...planted here subversively over 3 years ago in a conspiracy of some sort.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
[QUOTE]Originally posted by troutscout: [QB] Lishs mom
I am speechless as to what the web site www.proft.org has to do with anything here?
I didnt quite understand that wwwprofit thing either.
-------------------- 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.
posted
I am definitely not Lou B. He plays golf and has a lymie daughter. No chasing little white balls for me, and I am the lymie. Sorry it is confusing to some.
Would hate to see you disappear from here, Lish's mom, as you always have useful comments and are deserving of many gold stars for your activism.
Having been around so long, I just keep seeing people start new things instead of keeping already existing ones going, when they really need the help. Not saying anything negative about this particular new site.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
quote:Originally posted by troutscout: Lishs mom...I really don't understand your intentions here.
(ALthough I beleive they are good however focused with a little tunnel vision. ...for example you can't even seem to recognize who you are speaking to. (Lou vs Lou B)
I do know that you mean well...once again I have to re-iterate that...without question I know this.
However, I am speechless as to what the web site www.proft.org has to do with anything here?
I have had the costs that they posted reviewed by a VERY reputable IT staff at one international company abd also reviewed by a local server fella in my hometown here...after explaining the preferences and OVERALL funnelling of funds for this site...they thought it was a steel. (Remember some of these funds go to support things that are NOT Lymenet the website, but are involved in spreading the word about Lyme.)
Please, Let those that prefer Lymenet have some peace here.
Please...please just allow us to exist over here (without your insistance that this site is a rip-off and run by trolls)...which has existed in peace for a VERY long time (Except that period earlier this year) and successfully helped so many THOUSANDS continue.
I need to add that you have tested the waters here enough and if you don't like the temperature...get out, or maybe help improve the scenario a little bit...your talents are incredible....so help us.
Respectfully, (To a Good Person)
Trout
PS...Next you'll be accusing ME of being a troll...planted here subversively over 3 years ago in a conspiracy of some sort.
Gee, Sorry I came across that way.....Tunnel vision or not...I didnt think I accused you or anyone as being a troll? other than Martijn and Chuck, who I believe have rightfully earned that title.
AnnOh, thanks for your kind openness..
Lou...I didnt start it, I just went there and enjoy it.
Posts: 1918 | From Central, Oregon | Registered: Apr 2002
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Thanks for clarifying this situation. We are not married. I married the man who chases the little white balls.
-------------------- Love, Angela Posts: 572 | From New Jersey | Registered: Oct 2000
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Hey Sweetie...you know I WAS joking with you about calling me a troll.
lol.....just making light of things...gotta laugh ..even when the smoke is thick.
Thanks for your input.....
Trout
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
posted
Yesterday Angela and I both registered on the Lyme News Forum. We thought, let's check out the new website and see how they set it up, look things over, make suggestions and also learn some things they may be doing differently. Win-win, helping one another. Well, so much for that ... we were both BANNED!
Following is the "friendly" message:
================================================== Lyme News ~ Your Lyme Disease Resource � An Error Has Occurred �
This Board Hosted For FREE By ProBoards Get Your Own Free Message Board! ==================================================
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by Lou B: Yesterday Angela and I both registered on the Lyme News Forum. We thought, let's check out the new website and see how they set it up, look things over, make suggestions and also learn some things they may be doing differently. Win-win, helping one another. Well, so much for that ... we were both BANNED!
Following is the "friendly" message:
================================================== Lyme News ~ Your Lyme Disease Resource � An Error Has Occurred �
This Board Hosted For FREE By ProBoards Get Your Own Free Message Board! ==================================================
Could I suggest emailing there [email protected] for a answer?? LouB
-------------------- 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.
I did email [email protected] Following is the answer I received: ================================================== Dear Lou,
Since we share the common goal of helping the lyme community, you can understand how terrible troll issues can be for any message board.
It came to our attention that you have the same IP address as a well known troll, who has been banned from our site. For the security of our system, we are unable to remove the ban. Should we be able to resolve what happened, and we know without a doubt that he is unable to gain access, then we will consider lifting the ban.
Thank you for your time, The LymeNews Staff [email protected] ================================================== I will not be wasting my time attempting any further interaction with Lyme News.
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
| IP: Logged |
posted
Gee, sorry, Lou B. Sounds like just a mix-up. No one could ever think you would be a troll. Wonder how many people that internet provider serves. Probably a lot. Seems like many innocent people might be banned in this way. Wonder if there isn't some way around this problem.
Please don't get your feelings hurt.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
Man=o=man o=man
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Its sure screwy
-------------------- 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.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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