ACCESS TIPS FOR THIS SERIES:
Type “Lyme” into the search bar and all the related blogs for this project will come up. Remember that they will be listed in reverse chronological order.
ABOUT THIS SERIES:
Almost three years ago now, I started research for a book called Lyme Disease: Stories from the Front Line of An Epidemic.
I first felt a need to write this “book” after I developed some rather serious symptoms largely due to untreated or improperly treated Lyme disease.
I did not start writing it until a dear friend of mine almost died due to her more severe complications from improperly treated Lyme disease.
That she is still alive today is a fact to be accredited to one of the few and the brave Lyme Literate doctors left in the United States.
But to the book, or rather Lyme disease:
Misunderstood, underfunded and not insurable, Lyme Disease is an orphan disease that has become something of a controversy of our age.
Patients of this easily contractable tick-borne and sexually transmitted (probably) illness are frequently ignored, often misdiagnosed, and sadly even dismissed as sufferers from mental illness this despite a growing evidential base, blood tests, and even write ups of the disease in Tabor’s medical encyclopedia dating back to the sixties.
The issue here is that Lyme disease is a chronic, slow, and debilitating disease that destroys the minds and the bodies of sufferers and which requires a wide range of care encompassing several currently divergent fields.
It is the new AIDS and like AIDS it is both difficult and expensive to treat.
As a result insurance companies won’t touch it, the rich rapidly become poor attempting to get care, and the poor tend to simply die.
This is basically genocide – no exaggeration – and since Lyme disease effects anywhere from 300,000 – 3 million people (depending on your source) with those numbers growing every year, this is an issue that really needs more coverage.
For more a quick and dirty education on Lyme Disease and how horrible the lives of it’s victims – including myself – actually are I recommend the following two free documentaries available on Hulu and Netflix.
Under Our Skin and Behind the Eight Ball.
Even so, this is not a book about the anger or the depression of Lyme, nor is it a book about the politics of Lyme. There are dozens of other books on that topic and all of them are better than anything I could possibly write.
It is also not a book on how to treat Lyme or the many co-infections of Lyme. Again there are many people well qualified to write those books – many other Lymies who are self taught biochemists and who know more about it than most of their doctors. The doctors write books, too, some of them excellent.
I will include a bibliography post here somewhere for those that require such things.
But this book is about the human aspects of this de-humanizing disease.
It is about real people who eat, sleep, shop, raise kids, drink, read, surf the web, and do everything you do but do it without recognition, and often without money or hope, and in the face of incredible odds.
It is for the ladies who fight like girls and the gents who fight hard and dirty.
It is not about the horrible disease; it is about the people that spit in its face daily.
You will find many different types of people here, old, young, of different religions, of different politics, of different colors.
But they all have one thing in common. They are still here and still fighting and they could all use some recognition and maybe even some help. (There is a page linking their fundraisers in the back of this book, too.)
As to my actual book, I now know I will never finish it.
I am one of those people who cannot afford treatment and whose mind is deteriorating under the illness. In college, my tested IQ was between 145-180. It now tests between 100-125 and I have a firm diagnosis of neuro Lyme which will end in dementia and death.
But to hell with me. During the research phase of my project, I interviewed 300 patients and two doctors about Lyme Disease. Since then several of the patients have died and two have committed suicide including an 18 year old boy.
In their honor, I am going to publish the extant chapters of my stillborn book here.
I am going to share the stories of all those who confided in me in blog form -with their permission as given at the beginning of the process – so that their stories WILL not go unheard.
That is the least, and sadly, the best I can do.
Please read along as we go and please share their stories and experience as you can and better yet, learn from them.