May is Lyme Awareness Month--and the perfect time to launch this blog: Lyme-Over the Edge.
This blog is a place where Lyme fighters will tell their stories, where they can encourage each other and share treatments that have worked. You will be amazed by these stories--the extreme challenges facing Lyme sufferers, and their courage in coping. It's also a place to educate those who don't know about Lyme. Who knows--it could well be that someone you know is very sick with Lyme but remains undiagnosed. When I first contracted Lyme it was only the knowledge of two friends who recognized my symptions that led me to be tested for the disease. Lyme wasn't even on my radar screen. If it weren't for these friends leading me to a lyme-literate doctor and a lab that properly tests for Lyme, I wouldn't have received my diagnosis. Or my treatment.
Note that I said "a lab that properly tests for Lyme." The typical CDC-backed tests too often result in false negatives. What a horrible thing to happen. The real cause of the patient's illness is put aside--many times for years--while he or she gets sicker and sicker.
Lyme is far more prevalent than the CDC (Centers for Disease Control) numbers would have us believe. Many, many cases go unreported. And many times, as mentioned above, Lyme sufferers can't even get a diagnosis, much less treatment. But the fact remains: Lyme Disease is the #1 vector-borne illness in the U.S. And believe me: you don't want to get this debilitating sickness.
Lyme is surrounded by such controversy that patients have to learn all they can about the disease and take control of their own treatment. They certainly can't rely on the doctor down the street to recognize the disease. A few years ago I was talking with a nursing student in Washington State. She told me about her class on diseases. When they came to Lyme, the instructor said, "Oh, don't worry about learning that one. It's rare, and besides, we don't have it in this state." Wrong, and wrong. How disheartening to hear this is the way the new breed of medical practitioners is being taught.
If you have Lyme, I encourage you to write your story to be posted here. All whose stories appear on this blog will receive a free copy of my novel about Lyme, Over the Edge, when it releases next year (either print or download form). E-mail your story to me: brandilyn (at) brandilyncollins (dot) com. Include your street address in case a print version of the novel is mailed to you.
The next post (tomorrow) will begin the stories of Lyme fighters. First up: A Decade of Symptoms--Suze Overstreet's story.
Before you leave here, please click on the right to follow this blog as a sign of your support for Lyme awareness. And if you have a Lyme link you'd like me to include, please e-mail me.
Brandilyn, I applaud first the courage it took to endure Lyme disease, and then the insight you have to combine your skill as a novelist with your passion to help others understand Lyme disease, its consequences, and where to find hope. I'm looking forward to the all-too-true stories I'll read about here as those of us who have been devastated (for a season or a lifetime) by Lyme gather to compare notes and rally the troops!
ReplyDeleteI'm so glad there's going to be a place where people can learn about Lyme and hear the stories of the Lyme wars. So many people don't understand about it. And so many people going through it feel like they are alone. This blog will help with that.
ReplyDeleteThanks, Brandilyn.
Finally!! The Lyme community is going from baby steps, to actually walking! Under our Skin was the wake up call, now the next step is to have someone like Brandilyn put together a site like this where we will have a voice. We need to be heard, so that we can continue to educate and help others that are suffering, as well as educate the general public about the seriousness of this devestating disease. This is a place where the true stories of real people can be told, thanks to Brandilyn, a Lyme warrior herself, we have a platform to tell the truth about this disease, real lives, real accounts of the lives and families that have been taken to the edge by this relentless disease!! Thank you Brandilyn, and may the truth be told, may eyes be opened, and most importantly, may others be helped here!!
ReplyDeleteDana
Brandilyn, thank you so much for establishing this blog and for writing your book. Those of us fighting the Lyme battle need warriors on our side. My health comes and goes like the seasons, and I'm currently struggling again. Idaho has been a great place to live, but I have no idea where to go for help.
ReplyDeleteSo many doctors don't understand anything about Lyme disease, and most really don't seem to care. I continue to rest in God, pray for healing, and pray for others who struggle with this disease.
Thank you, Brandilyn!
Lisa
Great blog Brandilyn... thank you for doing this on behalf of the lyme community. It's sad and enraging what you said about the young nursing student. There is such ignorance out there. I am in a really bad herx right now. The world that knows lyme asks me to embrace the herx... to accept it's effects as the only sign that my new treatment is working. Sigh. How much more frustrating can a disease be? How much more can a treatment ask but that we celebrate it's considerable "DOWNside"? What a test of faith that sometimes I don't pass very well... to believe that this is a HERX and not a recurrence of symptoms indicating a backwards slide? What a profile in confusion. That's lyme disesase. So perhaps the faith is to trust that lyme or no lyme ... well... here I am... because having faith that this is healing is perhaps self deceptive and not really the point.
ReplyDeleteGreat blog, Brandilyn. Can't wait to read everyone's stories and thoughts.
ReplyDeleteKaren Ball
Lisa Buffaloe let me know about your site and blogs. I am looking forward to reading the stories posted here and sharing my own. God bless you as you advocate for all of us. I was diagnosed three years ago with Lyme and coinfections but believe I was infected in 1985. My husband was infected 10 yrs ago and diagnosed a year ago. We are on quite a journey, but with God by our side we are moving forward. Again thank you....God bless.
ReplyDeleteWow, you have been through a lot. I had surgery for severe endometriosis in 2004- they had to take everything if you know what I mean. I was only 32.
ReplyDeleteI now struggle with Lyme that has attacked my endocrine system. I never got the pain in the joints, but oh man, did I ever get severe ongoing bladder pain. Can't tell you how painful it can be. I don't feel it right now because I am on a very strong pain medication.
Thanks for telling your story. Please continue to write.