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» LymeNet Flash » Questions and Discussion » General Support » The LymeNet Story

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Author Topic: The LymeNet Story
Lou B
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Member # 64

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Let me tell you about LymeNet ...

In 1991 Bill and Carol Stolow's daughters were diagnosed with
Lyme. Bill & Carol started a support group in East Brunswick, NJ
that became the Lyme Disease Network of New Jersey.

In 1992 Marc Gabriel, a student at Lehigh U, was attending the
support group meetings and saw that they mailed out a ton of
paper documents to people looking for Lyme info. Marc said,
"there's a better way" and built the LymeNet list server to send
out newsletters in 1993.

In 1994, as their senior project at Lehigh U, Marc and his friend,
Tom Brown, developed the initial LymeNet web site using a bunch
of scrounged Sun servers/associated gear and a 14.4 connection
to the Internet. The equipment was installed in the Stolow's basement.

In 1996, my daughter was diagnosed with Lyme and the info we
found on LymeNet helped us understand how to deal with this
horrible disease and helped us find a wonderful LLMD. At that
time, we really did not know anything about LymeNet but a friend/
co-worker/Lyme victim told me that LymeNet was in financial
trouble. My wife and I contacted all our family, friends, enemies,
etc and collected $2500+ which we delivered to Bill Stolow at
the bagel store he operated. Wow, was he surprised ... didn't even
know who we were and we hand him enough $$$ to keep LymeNet
up and running. We then decided to do a fund raiser dinner dance
for LymeNet, initially in Oct '96 ... this became an annual event held
at our church, St. Michael's, Paterson NJ ... in the church hall which
is the basement of the church (underground),
through Oct. 2000. Since 2001 we've run an email / snail mail
fundraiser to get the funds to keep LymeNet up and running.

Because LymeNet was financially stable, in 1998 LymeNet received a grant from
the State of NJ which allowed us to upgrade the systems and
the Internet connection and provided the capacity to support
the new LymeNet Flash bulletin board. LymeNet continued to grow
and in Oct 2000 upgraded to the UBB multiple Forum LymeNet Flash BB.

The LymeNet servers that supported both LymeNet and the LDA were
installed in Bill and Carol Stolow's basement ... next to Bill's desk in the
laundry room. I guess we were just an underground organization and,
somehow, we're the #1 web site on the Internet supporting Lyme disease.

In Aug 2005, new, upgraded servers and a significantly improved Internet
connection were installed at a location in NC to allow for "hands-on"
support and to provide capacity for future growth in user demand.

In January 2009, thanks to the influence of one of our Founding Members,
Tom Brown, we were able to acquire a $7000 dual-CPU HP Proliant
enterprise class server farm running VMware and RedHat Enterprise Linux 5.x
with Apache HTTPD 2.6.x.
This is protected by an enterprise class Cisco firewall, intrusion detection
and network switching gear ...
and all of this comes at NO COST to LymeNet.

Tom has migrated LymeNet and the LymeNet Flash to the new server environment.


Today LymeNet gets 30,000+ hits (page views) per day and has
over 22,000 registered users on the LymeNet Flash.

LymeNet is still supported by an all volunteer staff and none of
us have ever received any financial compensation ... we don't want $.
The LymeNet support team is Bill Stolow (founder and President),
Carol Stolow (Director, co-founder and a Lyme victim), Marc Gabriel
(assistant webmaster and a Lyme victim), Tom Brown (system/network guru),
Jenifer Stolow-Bedard (Bill & Carol's daughter, webmaster, a Lyme
victim), my wife, Angela, and I (parents of a Lyme victim, primary
LymeNet fund raisers and Moderators of the LymeNet Flash).
Over the past recent years, some of us have moved to other roles in support
of the LymeNet Flash and we were able to recruit a team of 5 volunteer
Moderators who continue to manage the day-to-day activity. All of these Moderators
are long term Lyme victims and long term users on the LymeNet flash who have
significant experience with Lyme and other tick borne diseases.

So, there you have it. A team of 12, all volunteers, with jobs, family
lives but still finding a way to devote thousands of hours to the
victims of Lyme and other tick borne diseases by keeping LymeNet
alive on the Internet. Our common philosophy ... to give back!!!
Our vision ... Lyme victims helping Lyme victims!!!

[ 03-05-2014, 02:47 PM: Message edited by: Lou B ]

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Beverly
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Thanks for posting this Lou, I always wondered how LymeNet got started.

I sure hope we make it this year, I can't imagine being without it.


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lightfoot
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Hi, Lou!!

What a wonderful story, thanks for sharing this. Everything about the site is so professional & up to snuff.....I'm sure most
of us had no idea! AND people coming for the first time to browse have no idea what a labor of love this is for you, The Magnificent Seven!!

It would be great if you could find a permanent and prominent spot to share the LymeNet story on the site.

LymeNet has been a source of information & inspiration since my daughter & I were diagnosed with borrelia three years ago.

Thanks to each of you for all you do to make this site possible. You are appreciated!!!

Let's reach for the sky, the goal will be reached!

lightfoot


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sizzled
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Thank-you, Lou, for taking the time to post the history of LymeNet.

------------------

New Yorkers, please email
[email protected] to help. Thank-you.


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terter
LymeNet Contributor
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Thank you all so much for having a site that has helped 1000's of sufferers and their families!

This site provides a wealth of information, encourages Lyme awareness and legislative motions, and an opportunity for those of us to help others and to receive help.

I thank you from the bottom of my heart for helping me to save my sanity by posting, and venting here! Being able to help others is a healthy way to help ourselves heal, also.

Take care you wonderful folks...terter


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troutscout
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AWESOME

Fish Boy


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seibertneurolyme
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Up for Newbies.

Bea Seibert

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Lymetoo
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Gee, I was here when this was posted but don't remember ever seeing it. Thanks, Bea for bringing it up!

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

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Andie333
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Bea,

I'm so grateful that you found this thread and bumped it up to the top. This is a story I didn't know...and it's so powerful!

Honestly, I suspect that without Lymenet, I'd still be bouncing from one duck to another, meanwhile getting more and more sick.

Not only did this site (and people's shared experiences) lead me to my LLMD but everyone's combined wisdom, patience and knowledge has gotten me through some rough rough times.

I'm so grateful, not only to the people behind Lymenet but also to the people who post here.

I would like to see this somehow made a permanent part of the board -- either as part of About Us or at the top of a thread.

Andie

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NP40
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My family and I owe a lot to lymenet.
It keeps me from:
mowing the lawn
painting the house trim
shoveling snow..............

Seriously, the info I gleaned from this site has been invaluable. I have a normal, healthy teenage son today thanks to a wondeful lady from a support group in Wisconsin, a great LLMD and the terrific folks on this board.

Thanks to the "Joisey 7" for putting it together.
-Mike

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bettyg
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Bea, yes, thank you so much for finding this oldie and bringing it up.

I have never seen or read it before.

THANK YOU TO TH ALL VOLUNTEER STAFF who keep this lyme board operational! We appreciate your "freee hours" of work here.

God bless each one of you. [group hug] [kiss]

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Lyme Gypsy
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THANK YOU! Does not even say enough. This site has been a life line for me. A Mecca of information. A place for support when I have not found much any where else.

Many blessings to all of you for all your hard work. A wish for much financial abundance sent your way.

Love, Light, & Healing,
Yemaya [kiss] [group hug]

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char
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What an inspiring story.

This website is set up and moderated with such excellance. A few folks who decided to make something happen.

This site has WITHOUT A DOUBT literally saved many from misdiagnosis, misery, lonliness, and some from certain death.

Thank you so much for what you have done here and all you continue to do.

My kids are scheming to do a film on lyme and this needs to be included.

Can we interview you all when we are up to it?

God Bless.

Char

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merrygirl
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Thank you to those that make Lymenet Possible. What a great thing that you do. Melissa
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Sojourner
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Oh my god...........thank you all so very much. And thanks for sharing the story.

I am constantly amazed at the random acts of kindess that the lyme community here bestows on me almost daily.

My family would be lost without the resources and support lymenet provides.

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kam
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Wow. I missed this when it was first posted. Thanks for bringing it up again.

And thank you to the 7 lymenet warriors.

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Geneal
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Lymenet has saved my life in more ways than one.

Through this forum I was able to locate a LLMD.

I've been given more compassion, understanding, advice,

On-going education, invaluable friendships, laughter, tears,

Support and as always answers to my questions and concerns.

I hope to one day be able to contribute more....when I get back to work.

God willing.

You are all my angels and heros. God Bless the fantastic 7 and their drive

And dedication which is a Godsend to us all.

Hugs,

Geneal

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Ruth Ruth
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Ditto on Geneal's post above.

There is nothing else out there like LymeNet. Nothing even close.

I can't always say that everyone here "plays well with others" ... but I can say that everyone gets to have a say if they want. Respecting everyone is part of what makes this place so valuable.

I have heard every side of every topic worth discussing and then some. And I am grateful for what every person contributes. Even the "Nellies." (You know who you are!)

After almost 6 months of reading, reading, reading on LymeNet, I have learned enough from the experience of others to deal with symptoms, doctors, diagnosis, and perhaps choose a treatment approach that seems best for me.

Wow, where would we all be without the work of Bill & Carol, Marc, Tom, Jenifer, Lou & Angela?
[spinning smile]

THANK YOU SO VERY MUCH!!!

--------------------
When I lost my grip on Faith in the maze of illness,
Hope gently clasped my hand and led on.

RuthRuth

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kam
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ibid on Geneal's post too
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lorima
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Thank you Lymenet. Couldn't do it without you all.
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sixgoofykids
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^

--------------------
sixgoofykids.blogspot.com

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kam
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Thanks for posting this again Sixgoofykids. And thank you all.
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carly
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Really? this actually had to be posted???

and brought back up again and again??

It never occurred to some of you how lymenet was started?

You are owed an explanation for eveything that goes on here?

(some people are so self absorbed! -- It's a support group, for Pete's sake!)

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AlanaSuzanne
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Thank you for posting this.

Every so often it is important to remind/inform the membership how this site came to be. Many people are not aware of the history.

Lymenet---volunteer staff, no paid employees, LD patients, giving back.

Carly, this topic has not been brought up again and again.

And absolutely, YES, I am sure there are people here who have no idea how lymenet was started.

Most just arrive here in desperate need of information and support. So I would guess that researching how lymenet was started doesn't even occur to the majority.

I agree that no one is owed an explanation for everything that goes on here (see my "banning" post) but everyone here should be aware of how this site came to be.

Had it not been for a few passionate and determined people several years back, we wouldn't be here communicating with and helping each other.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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MADDOG
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Cool Lou B,and big thanks to you and Wild Bill!!

I cant imagin the hours Bill has spent working on the computers.

He He HE !!!! I couldent resist the Wild bill thing.

MADDOG

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Lou B
Administrator
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Hey "Dog" ... how are you doing? Still battling Lyme and other TBD's. WoW, we go back a loooong time ... you, me, Angela, Tincup, Annie C, Meg, LabRat, lou, Nancy2, Sammi and so many others.
We've all been around here on the LymeNet Flash for way too long. I hope you're all doing much better!!!

--------------------
Lou B
 -

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MADDOG
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Hi Lou B
I have my share of Lyme problems but,I take my ABX and get better for awhile.

When I am better I live life for all I can get out of it .

When I am worse I take my meds and plan for what I will do when I am better again.

Life goes on that way.

Thanks for asking!!

MADDOG

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sammy
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Thank you LymeNet volunteers. I appreciate all the time you spend here helping all of us.
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map1131
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Wow, I joined in '02. I don't recall seeing this but really? Sometimes I don't recall 10 minutes ago.

Carly I don't understand you post? Why the negative post?

Thank God for all of those angels that started, improved and kept this site going. I would have lost my mind(totally) without you.

Praise be to God and the tool used to help others with lyme & co.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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steve1906
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Just wanted to say thank you, and also a ``big thank you'' to the Moderators.

I really believe, without a site like this, we would have a lot more suicides - I really do believe this.

So thanks again!

--------------------
Everything I say is just my opinion!

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Lymetoo
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I THINK carly was referring to those who were "demanding" an explanation for the banning of a recent member.

She's also shocked that some didn't know about how Lymenet began. My reply is that the face of LN changes every 6 mo to a year. We have new people every single day and they don't know the story.

So yes, it needs to be bumped up every now and then!!

carly... Did I say it right?? [Smile]

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

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4Seasons
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Just wanted to let all the moderators know how grateful I am personally for all the time you put into making this site the special place that it is.

Thank you from the bottom of my heart and tips of my toes!!! [kiss]

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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RESOLVED.
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I did not know how Lymenet began. I am so very grateful for everyone here. God bless those who work so hard to help others.
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kidsgotlyme
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Thanks for posting! I don't know what we would do without the lymnet!!

--------------------
symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections.

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pmerv
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Thanks for resurrecting this story - our history! I'd like to add that LymeNet was the very first Lyme group to have a website. [Lyme Disease Foundation got the second (lyme.org) and CALDA was third with lymedisease.org. How did we ever get anything done with out computers and the Internet?] Just as a footnote, the first mention of LymeNet I can find in the Lyme Times is in the April 1993 issue, #10. The article title is "Lyme patients may now subscribe to e-mail network."

--------------------
Phyllis Mervine
LymeDisease.org

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Tracy9
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That's really cool, Phyllis! I love hearing the history of things. I've read this before but I always love to have my memory refreshed. With all the sites popping up now, and especially the gazillion Facebook pages, some very repetitive, it's very cool to know Lymenet was the very first. I'll always think of it as the Mothership!

And Maddog, I always love to see your number, 18, there. Somehow comforting to know someone who was one of the first is still here to lead us along!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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map1131
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Phyllis, I recall being on another website 99-02?
I can't remember the name. Many people switched to this site from that site.

I'll have to dig to the bottom of my lyme files and see if I can come with a name?

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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rosebuds mom
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I have gratitude that words alone could never express to each and every one of you. Thank you Lymenet!!!
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Haley
Frequent Contributor (1K+ posts)
Member # 22008

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Thank you a million times over. I can't tell you how much this site has helped me. It has been an integral part of my road to wellness.
Posts: 2232 | From USA | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
lpkayak
Honored Contributor (10K+ posts)
Member # 5230

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i never saw it either-is labrat still around?

i was here earlier with a different name...but i don't remember what it was!!!

--------------------
Lyme? Its complicated. Educate yourself.

Posts: 13712 | From new england | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
carly
LymeNet Contributor
Member # 14810

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Thank you, lymetoo for putting into better, clearly stated, calmer words what I was trying to say.
(I was saying it with sarcasm -not negativity. I'm sorry it came across the wrong way. Now that I read it again, it doesn't sound right)

I, too, have never seen this post before. I didn't know the names or the details, but I do know that every support group has been founded out of the desparation of family members searching for answers who had the compassion and good will to work tirelessly to make sure others wouldn't go through what they did.

Like everyone else who has benefitted from this community that was created by these generous people, I have found lymenet to be such an invaluable resource for me -- I can't express that enough!

It saddens me and irritates me that there are people who constantly demand an explanation when people are banned. I never read the rules, either. I just clicked "agree", so if & when I violate them, I deserve the consequences, just like anyone else.

Posts: 797 | From New York | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
LabRat
Frequent Contributor (1K+ posts)
Member # 78

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IPKAYAK, you rang? I'm mostly lurking these days, looking to dry-gulch mo but she's laying low. I have to drink alone these days! Uh, wanta beer?
Posts: 1887 | From Corpus Christi, Texas | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
   

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