Tuesday, April 20, 2010

Do You Have a Lyme Story to Tell?

I am now gathering stories from people with Lyme Disease--both those who've fought it in the past and those who are still struggling--in order to start a new blog about Lyme. The blog will be a place to (1) find support and encouragement by reading others' stories, (2) learn tips from patients as to how to fight Lyme, and (3) educate others about Lyme patients' challenges, due not only to the disease itself, but also to the "Lyme Wars" in the medical community, which make it hard for patients to receive proper diagnosis and treatment.

Why am I starting this blog? Because of my own experience with Lyme, and the novel I'm now writing about the disease.

In my career as a suspense novelist, I'm currently writing my 22nd book. It's the novel I was made to write--centering around one woman caught in the Lyme Wars. I myself was hit hard with Lyme in 2002. I was diagnosed in 2003 and started treatment, but by then I'd gone from running five miles a day to barely crippling around with a cane. Then in May of 2003 something amazing happened. I was miraculously cured of the disease. Within one hour of a special prayer session all my symptoms were completely gone. (The story of my sickness and healing is on my Web site here.)

In 2009 out of nowhere Lyme symptoms once again reared their ugly heads. I had been totally well since that healing in 2003. I don't know why I got sick again. (And by the way, what was God doing? Hadn't we already been through this?) Most likely I was reinfected. At any rate, the illness was not nearly as bad as the first time, since I caught it quickly. (By then I knew what those symptoms meant!) I was treated for a few months and beat back the illness. Now I'm well and managing to stay that way through diet and making sure I get enough sleep. But like many a Lyme patient I feel the disease always at my back. As though if I let my guard down, the symptoms could creep back and take over my life.

My novel, Over the Edge, is based on the real-life Lyme Wars. The main character is the wife of a vocal and powerful doctor who insists chronic Lyme does not exist. (Sound familiar?) This doctor's opinion goes a long way in shaping the tests and standardized care for Lyme, not to mention what insurance will cover. (Again, like real life.) I got the idea for Over the Edge back in 2003 while sitting in the waiting room to see my doctor. I was so sick I could hardly sit up--in fact they soon moved me to the doctor's personal stuffed armchair in one of her offices. As I sat there, across from me on the wall was a framed newspaper article summarizing the latest IDSA (Infectious Disease Society of America) guidelines for treating Lyme. Basically the article said Lyme was hard to catch and easy to cure. Ten to twenty days of antibiotics would do it. And if you were sick beyond that--perhaps it's just all in your head. I remember feeling so angry. And I thought, "What those doctors in their lofty laboratories need is a whopping good case of Lyme." And so came the premise for Over the Edge: What would happen if someone purposely infected the wife of the chairman of the IDSA committee with a strong case of Lyme--in order to prove to her husband the truth about the disease and force him to publicly change his medical opinion ...?

I'm writing Over the Edge out of my passion to tell a suspenseful tale and to educate people about the disease. There are many nonfiction books about Lyme. But typically readers who pick up such a nonfiction book have the sole purpose of learning about the disease. Through writing a suspense novel--with the first priority of entertaining--I can inform a whole new set of readers about Lyme. They'll pick up the book for a story--and a tense story they'll get. But in the midst of the suspense is woven the reality of Lyme and the Lyme Wars.

Everyone whose personal story is run on my Lyme blog will receive a free copy of Over the Edge, either in print or downloaded form.

To write your story for the blog:

Tell me your personal story. Include such things as: How long did it take you to find a diagnosis? Proper treatment? How has Lyme changed your life? What are you doing to fight it? Or if Lyme is now in your past, how did you overcome it? How have you personally been involved in the Lyme Wars? If testing for the disease were better, if more doctors knew how to properly treat, how might your life be different today? What do you want readers out there to know about Lyme?

I'm not attaching a maximum word length, but keep in mind blog posts aren't novels. If your story is too long, I may need to edit its length. If so I'll preserve the integrity of your story.

Please include these things at the end of your story:

1. Full name
2. Full address
3. Copy and paste this permission statement: "By submitting this story I grant Brandilyn Collins the right to post it on her Lyme blog. I understand Brandilyn reserves the right to choose which stories to run on her blog and to edit as needed."

Your name and state only (not your full address) will appear with your post. I will not give your address to other parties. It will be used if a print version of Over the Edge is mailed to you.

Please put your story in a Word document and attach it to an e-mail with the subject line: My Lyme Story. As an option, attach a web-ready photo. If you don't want to include pictures of yourself--that's fine. E-mail your story to my assistant: sandy (at) brandilyncollins (dot) com.

In my Author's Note at the back of Over the Edge, I will include a link to the blog.

Please pass this post along to other Lyme patients. Everyone who sends me a story will be personally informed as soon as the blog goes live. Please, please follow all the above directions carefully. I could be inundated with stories, and I won't have time to e-mail back and forth to fill in missing information. I have a book to finish. :] It's due at the end of May.

Blessings to you all. I look forward to reading your stories.

By the way--if you're curious about my other books you can look them over, including reading first chapters, at my Web site.


Feather Latimer said...

This is amazing.Looking forward to your book.I'm fighting Lyme but I'm doing well.Wish I could afford IV antibiotics but I'm forced to do oral for a while.I work for the place that keeps me healthy while on antobiotics.Detox,food allergies & gutt issues so I'm as strong as can be to help my body fight better.I'm happy for now though.Good luck=)

Jennifer Tiszai said...

I love the premise of your book. I think all of us who've struggled with Lyme have wished that those who so cavalierly dismiss it would suffer, just for a little bit, to see how devastating it is.

And I love that you're raising awareness of Lyme. It's amazing how many people don't know that they could be infected.

Anonymous said...

Brandilyn, totally missed this post. I could have told you about my husband's experience with a tick bite while up in MD and how he developed a rare form of lymphoma where antibodies were attacking his red blood cells faster than his body could produce them. The doctor didn't think it was related to the bite, b/c the test came up neg.(which many do)
He tried the dr's meds, but no change in fact he got worse. So we asked the dr to just try the antibiotic for Lyme...well, the antibodies disappeared and slowly his red blood cells started growing.
So Psalm 91 and the antibiotic for Lyme disease helped. My husband is healed. Praise the Lord!

Miriam D. (from FB)

Susanne said...

Hi Brandilyn. I think this blog and novel will be awesome! I know a couple of people who have had Lyme disease and have forwarded this link along to them.

~ Brandilyn Collins said...

Miriam, glad to hear your husband was cured so quickly.

Susanne, thanks!

Anonymous said...

Brandilyn, thank you for writing this story; (most of all sharing your story)
btw, it was a 2 1/2 year process for my husband. The dr really has not fully released him, but no meds now. It was touch and go some days.

Faith said...

WOW....so glad another blogging buddy shared this website with me.
I went undiagnosed from 12/01 until 7/02 with what turned out to be Lyme Disease. My own doctors did not believe me....it was actually the Lord who healed me plus alot of antibiotics. the 8 months of being undiagnosed and treated for other illnesses was sheer hell. But...God is GOOD and it was really my faith in Christ that got me through that ordeal. I will try to write my story but I teach part time and have 2 very active daughters so.....hopefully I can get my story done in time with your specifications. Thanks for sharing your story!!!!
God bless you!

~ Brandilyn Collins said...

Faith, there's no deadline for getting your story in. Send it whenever you can. Thanks so much. Glad you found the post.

Kate {The Parchment Girl} said...

I'm thrilled to hear that you're writing a novel about Lyme! Is this one going to be published by Zondervan?