posted
Anyone know the "true" purpose of www.lymelog.com and why people are posting their information about symptoms, medications, and the like, information that the "wrong" camps can easily get ahold of and abuse?
I sent an email reply to the site guru, who contacted me out of the blue, to see what he says.
While I think sites like this on the surface seem to be a good idea, my concerns are that the wrong people are attempting to seem Lyme-sympathetic, and then collecting information about each lyme patient, their daily habits, medications, symptoms, etc. and then offering that information to disability reps, insurance companies, and other camps that would ultimately bring down those very lyme patients.
I'm not saying this site is not legit, I am saying be CAUTIOUS when posting anything that intimate on any site that can prove to be utilized against you in a negative manner. The site has been up only 4 weeks and i see already over 500 posts there, some of them quite intimate.
Any comments? Thank you
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
I took a peek and decided I wouldn't even register unless I find out the site is run by somebody friendly to our side. If they are, they ought to identify themselves.
Posts: 2804 | From Texas | Registered: Oct 2000
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posted
It is my understanding that Tracy9's friend developed the program for her use a while ago, and she talked him into making it more available to those with Lyme.
Posts: 115 | From USA | Registered: May 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Tracy 9 posted on lymenet several , several times about the availability of this online log for people who wish to use it, to use it.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
If I remember, she posted here with her original intent (maybe you could do a search).
Seems, as crime said, she wanted a site where people could record their Lyme progress.
I haven't been to the site myself but have found an online journal really helpful. There are a number that are free and confidential.
I used my-diary.org because the format is clean and there aren't any distractions.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I am in the process of chatting with the developer of the site, FYI for those who are interested in it. I am proposing that www.lymeleague.com and he work together. At this point I am still feeling things out, but I do think that he is lyme friendly and not the "other" alternative.
It helps to be very cautious nonetheless, because of all the persecution of lymies....speaking from experience.
I am not a doctor but I look great in a lab coat.
-------------------- PJ
www.LymeLeague.com"Together We Grow Stronger" Posts: 139 | From A tiny little home office in the middle of Wisconsin | Registered: Feb 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by lymelighter2: I am not a doctor but I look great in a lab coat.
(Pardon me, I know this is a serious thread but I needed that laugh, thank you!)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
This site is put up by Tracey9's friend and I've been in contact with him. He's very nice and is doing this voluntarily to help Lymeies. He also has been very responsive to suggestions on how to make the site better.
You can mark your posts as private and NO ONE but you can see them. Even if you mark them as public, they can only be seen by other registered users and can't be changed.
I've found the site to be very useful and an easy way to track my ups and downs in a few minutes without much effort.
-------------------- Pam Live well. Laugh often. Love much. Posts: 53 | From Ohio - south/southeast | Registered: Oct 2005
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posted
I am the creator of the LymeLog and came across this post while googling it. I didn't realize that there is so much of an issue regarding lyme disease. I did the site to try to be helpful because I had some inquiries about making it available to the public to use. I have no intention of selling or sharing any of the information that is on that log. I don't even look at it unless there is a specific problem with a specific entry but that hasn't even happened yet. I have enjoyed working the people who use it and we've worked together to add the features and tools that they find useful. I've learned a lot about lyme disease (had a scare myself last spring) and just wanted to help. If anyone has any questions please feel free to contact me it's no problem at all.
Posts: 3 | From Massachusetts | Registered: Jul 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Hi everyone, I just saw this thread (and the lab coat jokes,etc were well worth reading through it!)
As many of you posted, this is something I originally promoted. I am a true Lyme Disease sufferer, unfortunately. The guy that developed it is a friend of mine, and he originally did it to help me. I was logging in Word and had shared it with him. He is a computer whiz and developed a web based tool for me to use. The original tool does not look much like the website now, because he has received so much feedback and has made many changes. It is a fantastic site, incredibly useful tool, and has more and more features every day.
I can assure you all it is the real deal! This guy does this all on his own time (he has not received any donations yet despite almost 100 users now) and at his own expense. He knew very little about Lyme disease and has learned and expanded the site based on the feedback from the users. I think it is incredibly generous of him to spend so much time on it, and really wonderful that so many of us are now using it and finding it helpful.
I also sent lots of emails and packages of printed materials out (at my own expense) to spread the word, so organizations may have been contacted "out of the blue" by me. I wanted to be able to give something back and make a contribution to others who suffer like I do (and many have it far worse than I.)
I can't say enough about how cool and useful this site is, and how grateful I am to my friend for creating it. I am thrilled that he made it public, and really impressed by the number of features it now has! In fact it has so many now, I almost feel overwhelmed trying to figure it all out! He does give explicit instructions on everything, and is very responsive to questions and concerns.
If anyone has any further questions about its legitimacy, please feel free to email me! I'm glad Mike posted here himself. He's a great guy, and is truly doing all of this out of the goodness of his heart.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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