I am trying to write a book based almost soley on patient's stories. I am going to include some information in the first chapters about Lyme and co-infections, their symptoms, and treatment options w/ the abx.
I'm going to include a list of resources for people with Lyme Disease, newly dx or people that have beex but don't know about these sites. I actually have a friend who has had her DX for a year and a half and didn't know this site existed.
And then the rest of the book is going to tell the story of Lyme from patien'ts stories. I am even donating half of the proceeds (which probably won't be much, google first time author) back into the Lyme community. Not for research but for real people like you and me who need tests, treatment, and everything else but can't afford it.
While I've had support and the oh great idea good luck thing I haven't had many real stories.
I have 2, 1 is mine. And I will be getting three more, my friend, her mom, and her dad-who doesn't have lyme but is writing from a family members POV (point of view) as I will have a chapter dedicated to that. I want 220 stories.
I know there have been books done before but what's another one when we are trying to spread the word?? This book will be a great tool to newly diagnosed and old diagnosises as well. It will also be a great tool for those people who have been sick for years on end and no one can figure it out. I hope that some will pick up this book and have a holy crap moment, go find a LLMD and then viola DX!
I can't do it without paitents' stories. I am getting a lot of "oh but I don't get any money right now?" Well then I'm not sharing, HA are you serious? I don't have any money, I'm trying to scrape up enough for the Igenex. I would tell my story 100 times over if it meant helping get the word out about Lyme. I can't think of a better way to explain this whole crappy disease than through the eyes of the patients. Heck we live with it, no one else can tell it like we can.
I'm ready to give up. I'm holding out hope that the word just hasn't gotten out enough and I'm trying but I don't know what else to do. I even offered people to contact me and we can set up a a phone interview and I can write their story and then send it to them to proof read and make sure I told it right because I understand typing may be hard for some.
I really just felt like ranting because I'm sure my husband is sick of hearing about it, Lyme and the book, lol! He's had a lot to deal with concerning me over the last couple of weeks.
Posted by gatorade girl (Member # 24896) on :
Are you on facebook? there are so many people with lyme on there. there are also lyme groups....you should also look up lyme groups like nat cap lyme, go to the under our skin page, etc and put it on there. Unfortunately, lyme is an epidemic once people find out you have lyme they come out of the woodwork (at least around here).
Posted by 22dreams (Member # 17846) on :
Agreed. Build a lyme-only profile that way it will be specific and not as unweildy.
There is a girl on FB (college student maybe? not sure) who collects stories from her lyme friends. Can't remember her name though.
but: that would be a solid option.
Posted by sammy (Member # 13952) on :
Hey littlebit,
I will tell you my story for free. I'm actually surprised that people would ask you to pay them for something like this. It would be helpful for other people to hear what we have gone through.
So, hang in there. Keep asking around. I'm sure that you will get other people to respond. There are many kind and generous members here on LN.
Posted by gatorade girl (Member # 24896) on :
I cut and pasted and emailed it to some people in Lyme nation. Let me know if you get anymore stories.
Posted by littlebit27 (Member # 24477) on :
Thank you everyone! I did make a facebook page and put lyme book as the first and last name haha!
Gatorade girl-yeah I'm from MD, Columbia, which is probably where I picked up Lyme.
The information is on my blog but stories can be emailed to [email protected] Posted by 22dreams (Member # 17846) on :
I'll advertise your info & what you are doing in the internet world. We'll see if anyone bites.
Posted by merrygirl (Member # 12041) on :
sent you my story
Posted by kam (Member # 3410) on :
Be patient, you will get more stories.
Posted by jenny76 (Member # 18205) on :
How can we find you on fb?
Posted by peacemama (Member # 17666) on :
Don't give up. I'm a writer. . . and I don't like to write for no pay for anyone that can pay me. But this is different.
I totally get it, and would happy to share my story. My husband is recently dx, my kids are congenital, and It is likely my Bart is congenital.
You likely won't have to do a bunch of editing, if I write on a good neuro day!
lol!
Posted by littlebit27 (Member # 24477) on :
Lyme Book on facebook. I used that as my first and last name so it would be easy to find. Many people want my real name and I will be happy to share that via email. My first name is Brittany but that is all I am going to put on the wide open web, here or facebook.
Thank you for the stories. I hope I get more as well. I really want this to be a success. I've been working on the information chapters and they are coming along nicely. And lately my brain is, well until yesterday was cooperating as well.
I want to get this book published more than ever now, my mom, my own mothers, thinks I am nuts. She's a nurse and doesn't believe in Lyme...yet. I'm determind!