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 ]
Posted by Beverly (Member # 1271) on :
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.
Posted by lightfoot (Member # 2536) on :
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
Posted by sizzled (Member # 1357) on :
Thank-you, Lou, for taking the time to post the history of LymeNet.
------------------ New Yorkers, please email [email protected] to help. Thank-you.
Posted by terter (Member # 2204) on :
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
Posted by troutscout (Member # 3121) on :
AWESOME
Fish Boy
Posted by seibertneurolyme (Member # 6416) on :
Up for Newbies.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Gee, I was here when this was posted but don't remember ever seeing it. Thanks, Bea for bringing it up!
Posted by Andie333 (Member # 7370) on :
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
Posted by NP40 (Member # 6711) on :
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
Posted by bettyg (Member # 6147) on :
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. Posted by Yemaya (Member # 8842) on :
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 Posted by char (Member # 8315) on :
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
Posted by merrygirl (Member # 12041) on :
Thank you to those that make Lymenet Possible. What a great thing that you do. Melissa
Posted by Sojourner (Member # 9424) on :
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.
Posted by kam (Member # 3410) on :
Wow. I missed this when it was first posted. Thanks for bringing it up again.
And thank you to the 7 lymenet warriors.
Posted by Geneal (Member # 10375) on :
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,
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
Posted by Ruth Ruth (Member # 11059) on :
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?
THANK YOU SO VERY MUCH!!! Posted by kam (Member # 3410) on :
ibid on Geneal's post too
Posted by lorima (Member # 11925) on :
Thank you Lymenet. Couldn't do it without you all.
Posted by sixgoofykids (Member # 11141) on :
^
Posted by kam (Member # 3410) on :
Thanks for posting this again Sixgoofykids. And thank you all.
Posted by carly (Member # 14810) on :
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!)
Posted by AlanaSuzanne (Member # 25882) on :
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.
Posted by MADDOG (Member # 18) on :
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
Posted by Lou B (Member # 64) on :
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!!!
Posted by MADDOG (Member # 18) on :
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
Posted by sammy (Member # 13952) on :
Thank you LymeNet volunteers. I appreciate all the time you spend here helping all of us.
Posted by map1131 (Member # 2022) on :
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
Posted by steve1906 (Member # 16206) on :
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!
Posted by Lymetoo (Member # 743) on :
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?? Posted by 4Seasons (Member # 14601) on :
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!!! Posted by RESOLVED. (Member # 24991) on :
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.
Posted by kidsgotlyme (Member # 23691) on :
Thanks for posting! I don't know what we would do without the lymnet!!
Posted by pmerv (Member # 1504) on :
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."
Posted by Tracy9 (Member # 7521) on :
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!
Posted by map1131 (Member # 2022) on :
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
Posted by rosebuds mom (Member # 17435) on :
I have gratitude that words alone could never express to each and every one of you. Thank you Lymenet!!!
Posted by Haley (Member # 22008) on :
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.
Posted by lpkayak (Member # 5230) on :
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!!!
Posted by carly (Member # 14810) on :
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.
Posted by LabRat (Member # 78) on :
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?
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