HerpeSite.org
Herpes Online Personal Empowerment and Support
Herpes Online Personal Empowerment and Support
Inside HerpeSite: |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
| Meet others who can relate and understand for camaraderie, dating, and friendship. Herpesite recommends PositiveSingles! |
HerpeSite.org History
Act 1: The Beginning: Diagnosis
Like thousands of people every year, we got Herpes. It was the summer of 1994, and we were
devastated. It was not just a physical betrayal, but an emotional and relationship betrayal as well.
Triple-whammy! Life had been great, and now we had this incurable nuisance of a virus! We cried,
ranted in anger, and went through the range of emotions that many people do when they get an
unwanted and unexpected diagnosis.
Back then, there was little information available. The world wide web was in its infancy, limited to usenet
groups, university intranets, Compuserve, and a young AOL... There was no Google, and Yahoo wasn't
even Yahoo yet. Research wasn't easy back then. There was the American Social Health Association's
Herpes Help Line, their books, and sponsored live local groups. Great stuff, but somehow, it wasn't
enough. We wanted to connect, to learn, to understand. And wanted it to go away.
Act 2: Hope in the Chatroom
So we found our way to the Health Channel on AOL, where there were discussion boards and a Tuesday
night Herpes Support chat. The chat was run by a kind and well-loved guy whose online handle was
"Earthstar." There was a group of regulars, and new people every week seeking information, support,
and hope. We began by lurking, and a few weeks later we started to participate.
We had gone through the initial outbreak, had several more, and had started to experience non-stop
pain and numbness from the buttocks to the back of the knee. It was non-stop annoyance, pain, and
aggravation. We also couldn't find any information about the pain we were experiencing. Our doctors
had no answers, and a few of the doctors we went to gave inaccurate information. Even though the
chatroom provided lots of help and good information, we wanted more. We had a thirst to know as much
as we could about Herpes, and to solve the riddle of the pain in our legs. Let the research begin!
Act 3: AOL Chatroom Facilitator
Meanwhile, we had become a regular helper in the Herpes Chatroom. When the Lead facilitator needed
some time off, we made sure the chats were monitored and the participants supported. Earthstar had
created "macros" - lines of text with basic information about Herpes that could be typed into the chat
window with a single keystroke. Those lines of information formed the foundation of the document that
was to become HerpeSite.
We lived in a major city with several top Universities. We would spend day after day in the Medical
Libraries, looking up Herpes in the microfiche records, scanning and copying journal articles. We found
references to "Post Herpetic Neuralgia," primary in relation to Varicella Zoster Virus, and reactivations of
Chicken Pox and Shingles, but only a few minor references to PHN in Genital Herpes. Finally we found a
journal article written by Dr. Steven Sacks, a leading Herpes researcher, that referenced Genital Herpes
and PHN. We even called him to get his opinion on our own situation. Finally, there was
acknowledgement and an answer from a respected knowledgeable source! We put the research
together and created a document that we sent to anyone who asked for PHN information.
Eventually, Earthstar had other obligations arise that made it necessary for him to give up the Facilitator
position. We were asked to step in. We ran the chats, monitored the discussion boards, ensured that
AOL's TOS was observed, and helped people find information and support. It was gratifying to be able
to help alleviate someone's angst with some information and words of encouragement.
Act 4: A Website is Born
The chats grew as more people joined AOL. AOL instituted Hosting training, gave Chat Hosts official
AOL screen names, and increased the number of chats. We were joined in our Hosting and support
duties by several others, including Terri Warren, RN, a leading Herpes practitioner. We were an all
volunteer support team, spending many hours each week setting up and running chats, monitoring
discussions, and answering emails. A labor of love, for sure!
The chats became so busy that the "macro" lines of text we used to deliver information in the chatroom
weren't enough anymore, so we created a document with as much Herpes information as we could, and
uploaded it to our AOL member FTP space, under the screenname "herpesite." The original URL for
this site was http://members.aol.com/herpesite, which we gave to new group members as a resource and
starting point for the basic information and support links.
HerpeSite has been a referenced resource in medical websites, peer-reviewed journals, and Herpes
sites ever since. We eventually purchased the domain name herpesite.org as an adjunct to the main site.
Act 5: Changes
For many years, we did not accept advertising. When we started HerpeSite, the internet was an
information resource, and we rather liked it that way! It's so disappointing to go to website after website
expecting to get real information, only to find out the "info" is nothing more than a shill for some product.
We wanted to make sure that the information we provided was pure and unaffected by advertising, with
no hint of commercial influence or "payoff."
We've gone through periods of time where we just couldn't spend time on the Site due to pressing
obligations, and quite frankly, there have been times when we felt that to stay focused on Herpes just
perpetuated it in our life. So, in the mid-2000s, HerpeSite was often neglected and left without updates
for months and even up to a year at a time. It sat on the web as a friendly resource for people, and we
didn't do much updating since much of the information in the original site was still accurate anyway.
In 2007 and early 2008, we received several emails from people in need, and realized that there were
still many people seeking friendly yet accurate REAL information and support from a non-commercial
source. So, we resumed conducting regular updates. Then, the members.aol.com/herpesite site was
ended abruptly in late 2008 when AOL discontinued the Hometown program and eliminated members
FTP space for web pages. This new development meant that many of the resources that had linked to
us were no longer valid, and unfortunately left thousands of links to the site dead. This prompted a
major reorganization and redesign of the site, and we vowed to add even more resources and
information than ever before.
Act 6: Renewal
So here we are in 2009, with a renewed energy and commitment to helping people through the Site, and
we realized that accepting ads has become a necessity if we're going to continue to grow it by doing
research and regular site updates and upgrades. Honestly, it's not big bucks, it's trickles of pennies.
But it helps with hosting fees and reference library subscriptions and cups of tea at Coffee Bean while
we sift through information to find the best of what's out there to bring to you. We try to be selective
about our advertisers, and offer access to products and services that can enhance the lives of our
visitors. Most of the products and services advertised are ones we've tried, use, and believed in long
before the ads and affiliate links came along. (If you have a question about any of them, please feel free
to write!)
These days we're healthy, happy, and free of outbreaks. We have always had a passion for helping
others, and feel that Herpes has given us the opportunity to do that in some small way. HerpeSite has
been a stalwart resource for many people all these years, and one of the few original resources that had
any information at all on Post-Herpetic Neuralgia from Genital Herpes. We plan to keep the site alive
and current and growing for many years to come. We're grateful to all those who've contributed their
time, effort, and heart at the beginning, and to those who will contribute in the future.
Thank you for visiting, and for giving yourself the gift of hope. Herpes does not define us as
people, no matter what the media may still say about it. (And that's our next campaign, to
eliminate the stigma in the media!) We've been through it, and we really do know that life not
only goes on, but it gets BETTER!
Best wishes to you, and please stay in touch!
Lisa (aka "Cree")
HerpeSIte.org Webmaster since 1994
Act 1: The Beginning: Diagnosis
Like thousands of people every year, we got Herpes. It was the summer of 1994, and we were
devastated. It was not just a physical betrayal, but an emotional and relationship betrayal as well.
Triple-whammy! Life had been great, and now we had this incurable nuisance of a virus! We cried,
ranted in anger, and went through the range of emotions that many people do when they get an
unwanted and unexpected diagnosis.
Back then, there was little information available. The world wide web was in its infancy, limited to usenet
groups, university intranets, Compuserve, and a young AOL... There was no Google, and Yahoo wasn't
even Yahoo yet. Research wasn't easy back then. There was the American Social Health Association's
Herpes Help Line, their books, and sponsored live local groups. Great stuff, but somehow, it wasn't
enough. We wanted to connect, to learn, to understand. And wanted it to go away.
Act 2: Hope in the Chatroom
So we found our way to the Health Channel on AOL, where there were discussion boards and a Tuesday
night Herpes Support chat. The chat was run by a kind and well-loved guy whose online handle was
"Earthstar." There was a group of regulars, and new people every week seeking information, support,
and hope. We began by lurking, and a few weeks later we started to participate.
We had gone through the initial outbreak, had several more, and had started to experience non-stop
pain and numbness from the buttocks to the back of the knee. It was non-stop annoyance, pain, and
aggravation. We also couldn't find any information about the pain we were experiencing. Our doctors
had no answers, and a few of the doctors we went to gave inaccurate information. Even though the
chatroom provided lots of help and good information, we wanted more. We had a thirst to know as much
as we could about Herpes, and to solve the riddle of the pain in our legs. Let the research begin!
Act 3: AOL Chatroom Facilitator
Meanwhile, we had become a regular helper in the Herpes Chatroom. When the Lead facilitator needed
some time off, we made sure the chats were monitored and the participants supported. Earthstar had
created "macros" - lines of text with basic information about Herpes that could be typed into the chat
window with a single keystroke. Those lines of information formed the foundation of the document that
was to become HerpeSite.
We lived in a major city with several top Universities. We would spend day after day in the Medical
Libraries, looking up Herpes in the microfiche records, scanning and copying journal articles. We found
references to "Post Herpetic Neuralgia," primary in relation to Varicella Zoster Virus, and reactivations of
Chicken Pox and Shingles, but only a few minor references to PHN in Genital Herpes. Finally we found a
journal article written by Dr. Steven Sacks, a leading Herpes researcher, that referenced Genital Herpes
and PHN. We even called him to get his opinion on our own situation. Finally, there was
acknowledgement and an answer from a respected knowledgeable source! We put the research
together and created a document that we sent to anyone who asked for PHN information.
Eventually, Earthstar had other obligations arise that made it necessary for him to give up the Facilitator
position. We were asked to step in. We ran the chats, monitored the discussion boards, ensured that
AOL's TOS was observed, and helped people find information and support. It was gratifying to be able
to help alleviate someone's angst with some information and words of encouragement.
Act 4: A Website is Born
The chats grew as more people joined AOL. AOL instituted Hosting training, gave Chat Hosts official
AOL screen names, and increased the number of chats. We were joined in our Hosting and support
duties by several others, including Terri Warren, RN, a leading Herpes practitioner. We were an all
volunteer support team, spending many hours each week setting up and running chats, monitoring
discussions, and answering emails. A labor of love, for sure!
The chats became so busy that the "macro" lines of text we used to deliver information in the chatroom
weren't enough anymore, so we created a document with as much Herpes information as we could, and
uploaded it to our AOL member FTP space, under the screenname "herpesite." The original URL for
this site was http://members.aol.com/herpesite, which we gave to new group members as a resource and
starting point for the basic information and support links.
HerpeSite has been a referenced resource in medical websites, peer-reviewed journals, and Herpes
sites ever since. We eventually purchased the domain name herpesite.org as an adjunct to the main site.
Act 5: Changes
For many years, we did not accept advertising. When we started HerpeSite, the internet was an
information resource, and we rather liked it that way! It's so disappointing to go to website after website
expecting to get real information, only to find out the "info" is nothing more than a shill for some product.
We wanted to make sure that the information we provided was pure and unaffected by advertising, with
no hint of commercial influence or "payoff."
We've gone through periods of time where we just couldn't spend time on the Site due to pressing
obligations, and quite frankly, there have been times when we felt that to stay focused on Herpes just
perpetuated it in our life. So, in the mid-2000s, HerpeSite was often neglected and left without updates
for months and even up to a year at a time. It sat on the web as a friendly resource for people, and we
didn't do much updating since much of the information in the original site was still accurate anyway.
In 2007 and early 2008, we received several emails from people in need, and realized that there were
still many people seeking friendly yet accurate REAL information and support from a non-commercial
source. So, we resumed conducting regular updates. Then, the members.aol.com/herpesite site was
ended abruptly in late 2008 when AOL discontinued the Hometown program and eliminated members
FTP space for web pages. This new development meant that many of the resources that had linked to
us were no longer valid, and unfortunately left thousands of links to the site dead. This prompted a
major reorganization and redesign of the site, and we vowed to add even more resources and
information than ever before.
Act 6: Renewal
So here we are in 2009, with a renewed energy and commitment to helping people through the Site, and
we realized that accepting ads has become a necessity if we're going to continue to grow it by doing
research and regular site updates and upgrades. Honestly, it's not big bucks, it's trickles of pennies.
But it helps with hosting fees and reference library subscriptions and cups of tea at Coffee Bean while
we sift through information to find the best of what's out there to bring to you. We try to be selective
about our advertisers, and offer access to products and services that can enhance the lives of our
visitors. Most of the products and services advertised are ones we've tried, use, and believed in long
before the ads and affiliate links came along. (If you have a question about any of them, please feel free
to write!)
These days we're healthy, happy, and free of outbreaks. We have always had a passion for helping
others, and feel that Herpes has given us the opportunity to do that in some small way. HerpeSite has
been a stalwart resource for many people all these years, and one of the few original resources that had
any information at all on Post-Herpetic Neuralgia from Genital Herpes. We plan to keep the site alive
and current and growing for many years to come. We're grateful to all those who've contributed their
time, effort, and heart at the beginning, and to those who will contribute in the future.
Thank you for visiting, and for giving yourself the gift of hope. Herpes does not define us as
people, no matter what the media may still say about it. (And that's our next campaign, to
eliminate the stigma in the media!) We've been through it, and we really do know that life not
only goes on, but it gets BETTER!
Best wishes to you, and please stay in touch!
Lisa (aka "Cree")
HerpeSIte.org Webmaster since 1994
Search HerpeSite.org:
| Treat yourself to the best bath and skin products in the world! |
| Indulge in antioxidants from the source: |
There's a lot more here at HerpeSite! Bookmark this page and click the topics below to continue: Questions, Comments, & Feedback contact: support (at) HerpeSite. org Over 3,000,000 Visitors since 1996! This Reference Copyright © 1996 … 2010 HerpeSite(tm) Privacy & No Spam Policy Disclaimer Copies may be made and distributed to anyone who may benefit, as long as there is no charge and the disclaimers remain intact. www. herpesite. org Originally a resource for the AOL Herpes Support Community at www.members.aol.com/herpesite/ |
Stay strong, keep smiling, and take care of yourself. Thanks for your support! |
 | |  | |  | |  | |  | |  |
 | |  | |  | |  | |  | |  | |  | |  |
 | |  | |  | |  | |  | |  | |  |
| A day at the Spa does wonders for the soul! |
| For information and admin ( at ) herpesite .org |