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» LymeNet Flash » Questions and Discussion » General Support » who from ILADS is trolling the Lyme websites for info?

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Author Topic: who from ILADS is trolling the Lyme websites for info?
smileynot
LymeNet Contributor
Member # 18095

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I briefly saw something about folks from ILADS trolling our websites and various comments.

1. How does anyone know this for sure?

2. Why would they do this? And what would they do with the information we talk about?

3. Does anybody on here actually know any folks personally or informally that are part of the ILADS group?

4. Do we really have to be sooooo secretive and talk in code, or is this just being perpuated by a few individuals?

5. Please tell me what has happened as a result of someone's honest comment appearing on these boards??

thanks, smileynot

Posts: 114 | From nashville, TN | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

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-
ILADS is a wonderful group. They are why we have a chance at a future.

www.ilads.org

ILADS

=============

It would be people from the IDSA (and from INSURANCE companies) who want to turn in ILADS-member or ILADS-educated LLMDs - and yes, it has happened. Many doctors have had to fight long and expensive legal battles just to treat chronic lyme patients.

It is no big deal here not to post doctor's name - unless it is with an article or book (or public lecture) they may have published and is pertaining to that.

In the state where I live, doctors have lost their licenses for treating lyme. It's no joke. We have not one LLMD in the whole state.

Any doctor who tries to help a lyme patient in my state is risking their livelihood and the future of their family. If we are so lucky as to get a doctor to even sort of help us, we have to be sure they fly under the radar.

==========

FILM:

http://www.underourskin.com

UNDER OUR SKIN

You can purchase a DVD, too. Until you see this film, it's really hard to comprehend. They walk you through what has happened to some wonderful LLMDs - and that is just the tip of the iceberg.

=============================


http://tinyurl.com/5crsjv


Cure Unknown: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
dmc
Frequent Contributor (1K+ posts)
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It's the IDSA, Infectious Disease Society of America not the ILADS group.

I just follow Lymenet's rules. It's no skin off my nose to do. I don't need proof or explanations why they have these rules.

The only "code" is not to post Dr's names, just initials, or with the specific details of an appointment.

May be someone else will post with better answers for you.


There are other public Lyme info message boards that are more lenient regarding drs names. I find Lymenet is the easiest and most informative for me.

Posts: 2675 | From ct, usa | Registered: Jan 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
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-
This explains WHY we need ILADS doctors:

www.clinicaladvisor.com/Controversy-continues-to-fuel-the-Lyme-War/article/117160/

From the May 2007 issue of Clinical Advisor


CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.

- - Article at link.

=========================


http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2043

Topic: Explain why doctors cannot treat please

Some good posts here, just a few down, see the one LisaS posted from Tincup:

CAMP A and CAMP B

The Lyme Disease Controversy

====================


a good video that explains the controversy, go to this link:

http://www.kettmann.com/Lyme

- done by a Boston TV station.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Tincup
Honored Contributor (10K+ posts)
Member # 5829

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Let's be SURE we are talking about IDSA... and NOT ILADS. Big difference.

As far as IDSA is concerned... to answer your questions....

1. How does anyone know this for sure?

Articles by them or their quotes in other articles over the years. Been told by some of them. Harassing emails sent referring to posts here and at other boards.

2. Why would they do this? And what would they do with the information we talk about?

They are trying to shut up this "small but vocal group" because they have a LOT to be in hot water for if they don't and we gain any ground. Lives are at stake and lives are being lost to this disease... and they are at the helm and doing an awful job.

3. Does anybody on here actually know any folks personally or informally that are part of the ILADS group?

IDSA? Yes. Some are wicked... others are our Lyme doctors.

4. Do we really have to be sooooo secretive and talk in code, or is this just being perpuated by a few individuals?

If you want to have a doctor... even if you don't (others still do)... it is wise to obey the rules here. They were designed for a purpose and because of a LONG history of problems.

Even still, people are reading this site and dragging information from here to other sites... and then beating the stuffings out of our members, our doctors and our efforts.

Go check out Lyme Net Europe if you want to see an example of this. I think they may still have 4 or 5 members there. Posters there are often kicking some poor soul, simply for the pleasure of it.

And they are Lyme patients! So much for "do unto others" and manners.

5. Please tell me what has happened as a result of someone's honest comment appearing on these boards??

Insurance was cancelled.

Disability interfered with.

People's good name and reputations were trashed.

False reports were filed with Child Protective Services against mothers for treating children past IDSA recommendations.

People stalked, threatened, harassed.

Articles were written with quotes from this board and others... to our detriment.

Study in medical journal listing BAD Lyme websites because of the info posted. This one was listed.

Quotes used against us for political gain.

Quotes taken out of context and used to try and show we are all "crazy" and not sick.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Great job, Tincup! Thanks for being here!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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tincup gave you a wonderful summary of the IDSA, infectious drs. and insurance companies past and present behavior.

thx tc! hugs my friend

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bettyg
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smiley,

would you edit subject line show IDSA vs. ilads you showed earlier by clicking on pencil, 3rd box to right of your name to open up subject line and text? thx; we get confused enough anyway [Smile]

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grandmother
LymeNet Contributor
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This person appears to be a plant.

--------------------
www.drjoneskids.com

www.paulcraigroberts.org

www.zerohedge.com

Posts: 880 | From CT | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
liesandmorelies
LymeNet Contributor
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What is up with the title of this thread????

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

Posts: 869 | From nor - cal | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by grandmother:
This person appears to be a plant. [/QB]

I thought so too.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
twingirl
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Tincup said:"Even still, people are reading this site and dragging information from here to other sites... and then beating the stuffings out of our members, our doctors and our efforts.

Go check out Lyme Net Europe if you want to see an example of this. I think they may still have 4 or 5 members there. Posters there are often kicking some poor soul, simply for the pleasure of it."

I noticed that too Tincup. They act like a bunch of junior high kids over there.

--------------------
dar

Posts: 95 | From michigan | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
WildCondor
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Why is this post even here? Nothing in it makes any sense.
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bettyg
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condor, have you reported it?
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WildCondor
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lol i can't remember, but I will now, thanks BettyG! [Smile]
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WildCondor
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Reporting the post does nothing, nobody is there to do anything. Sigh.
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Lymetoo
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Is Lou having a procedure on his heart?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94529 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bettyg
Unregistered


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condor, jenifer is shown at the top; she isn't as regular to come here as lou b has been. she works on these sooner than a regular pm to her.


lou's off for now; yes, he'll be having another heart procedure. i'll wait for jenifer to announce it further.

just please put him in your thoughts and PRAYERS everything will go well for him.

hugs/kisses to my 1 of my favorite moderators ...

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Tincup
Honored Contributor (10K+ posts)
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Why bother the moderators and report the post?

Is it breaking any rules?

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20318 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Jenifer
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I don't see anything wrong with this topic. smileynot has a valid concern which seems to have been answered here.

I think this topic has gone of course, so I will close it.

As for the topic title, I will keep it as is. Unless the title is in violation of LymeNet rules, I won't change it. I have to draw the line somewhere [Smile]

And yes, there is someone who is still moderating...ME!!! Cut me some slack, please!!! I don't have much time to spend moderating and now I'm down a man...a very important, hard working man. All the best Lou B!!!!

--------------------
Jenifer Stolow
LymeNet.Org Webmaster

Posts: 317 | From Upstate New York, USA | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
   

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