I am just a casual poster, maybe one or two posts a month, but I have followed this site thoroughly for about
two years searching different posts and looking for updates and patterns from different people. No doubt a lot of people leave the site. I wonder what happened to Ticker, I think he was like one of the original mods I saw from posts over 12 years ago and he always seemed to have some good advice. There is a lot of 'turnover' so to speak. I would like to think they are all better. I think a lot of people end up giving up on the site just because Lyme is such a subjective and individual experience. I think a lot of people expect very specific answers, and while there a lot of similarities in treatment methods and the way we experience symptoms, everybodys experience seems a little different.
I think a lot of people get frustrated because they can't get specific answers to their specific situation which can be very frustrating. We tend to think of our problems like 'hey I am sure there are other people going through the same thing as me , how did they approach it' but lyme isnt like fixing a leaky pipe or wiring a stereo, it's a very unique experience for all. I remember having certain issues and thinking 'does this happen in lyme?' and while some people may chime in and say 'yes I had the same problem' the truth is no one is having the EXACT same problem.
I had this issue when I had liver problems and made a post thinking if I had liver issues with lyme then everyone else must have to, but while some people have liver problems, other peoples biggest issue is joint pain or insomnia. It just varies too much from person to person and when people don't find the answers to their problems I think a lot of them just move on.
I have personally stuck around not so much to get specific answers, but to try to learn over time based on shared collective experiences because although we are all having different issues, there are SOME similarites and common experiences that can be learned from. Its just a matter of whittling it all down.
Since lyme encompassses so many different things from mold to rifing to parasites to morgellans exetera, about
80-90 percent of the posts won't apply to any one individual, so while I pass up most of the posts realizing that has nothing to do with my situation, or that sounds crazy, there are those 10 percent of posts where I feel like 'yes exactly, this is what I have been exploring and this is right up my alley in terms of my thought process and experience.' I like to hang around just to keep the discourse of chronic tickborne disease going to gain knowledge and learn from others and this is good place to do that, at least 10 percent of the time, but that small fraction makes it worthwhile.
Oh and Girlie I am surprised you have never heard of Betty G 'the Iowa group leader.' I don't know if she has a HW account, but this woman has probably posted more posts about
lyme all over the internet than any one person. She posts on almost every online article ever written about
lyme, no joke. She was even called out by name by Gary Wormser in a post where she talked about
having lyme for thirty years and Wormser cited her as an example of a crazy lymie. She is tenacious. i wonder how she finds the time to write so much. She is a major activist and advocate in the online lyme world. She basically ran MD junction for a while editing and responding to every post made there. Basically the equivalent of traveler on MD junction. Only her 'welcome to the site' letters were beyond thorough. She wrote like 5 full pages as a welcome complete with individual link suggestions for all 50 states! She is definitely dedicated to the cause to say the least. If you ever read the comments on lyme articles, you've probably read one of her posts without realizing it.
Post Edited (logmoss82) : 2/10/2017 1:29:34 AM (GMT-7)