Letter to Katie Couric regarding her upcoming Lyme segment

I was among the first in a group of children in the mid 1970's to be exposed to Lyme Disease, being born and raised in the Lyme CT area.  Unlike today, children then played outside, rolling in the grass and building tree forts in the woods and I was bitten many times by ticks well before Lyme Disease and its ability to destroy one's life was discovered.   As a child I recall, crying in bed with severe limb pain which was dismissed by doctors as growing pains.  Throughout my adolescence and early adulthood I was shuffled from one specialist to another, with no diagnosis to explain my myriad of puzzling symptoms.  After several hospitalizations and medical withdrawals,  taking final exams from a hospital bed, I  still managed to graduate from college with honors.  I was very successful in my career until the disease progressed so that it infiltrated my brain.  What started with severe pain and fatigue progressed effecting my heart, brain, eyes, other vital organs and now deterioration of my spine.  I couldn't remember what side of the road to drive on; forgot everyday things like my pets names, my address, phone number and experienced body tremors and a shaking sensation in my brain.  The numbness has spread from my extremities to my lips and face; and at times I experience paralysis and involuntary body jerking.  Insomnia, double vision, narcolepsy, panic attacks, "lyme rage"...the list is endless.  The most disabling of all symptoms is noise/light sensitivity resulting in over-excitement of the brain.  Public places like stores and restaurants cause confusion, disorientation, and disabling vertigo that lasts for days. I can no longer listen to music or more than one sound at a time; or cannot speak if there is any background noise.  Using my eyes and ears at the same time confuses my brain, as does anything requiring concentration.  I wear sunglasses at all times and can no longer eat with my family or speak without closing my eyes.  Difficulty breathing requires oxygen at times.  (It was not until another tick bite in 2007 that I was tested and finally diagnosed with Lyme Disease along with a common malaria like co-infection called Babesiosis.) Unable to continue working,  I lost my livelihood along with a six figure income, insurance coverage, all of my savings, our home, and most of my friends.  Worse, I lost my ability as a single mom to care and provide for my son,  and eventually my own independence and ability to care for myself.   I was forced to leave my son while he was still in high school; he stayed behind in a friend's home until graduating while  I was taken in by a fellow "lymie" I had never met except through an online support group.  She is now homeless as well. Finally, I sold the very last of my possessions, my family jewelry, and a potentially life-saving piece of medical equipment, for food for my son and plane tickets for us back east to my mom's, where I continue to desperately search for a cure and for the will to continue fighting in order to someday reclaim my life.  My elderly mother is caring for me at a time I should be caring for her. Due to political controversy surrounding the disease, it is difficult to find doctors who will treat; the ones that will are expensive and take no insurance, and SS has denied me benefits..I once earned  in one month's time that which would now provide the IV antibiotic therapy that could return me to my work and give me back my life. I now have no money and am awaiting a second appeal to SS which will not be heard for two years. I do not think I can hold on that long without money for medical treatment and living in recluse.  The financial stress and social isolation is almost worse than the disabling effects of the disease itself. My family and friends can't see how sick I am; no scars, no bandages; it seems to be an invisible illness.  How often I hear "but you look fine" or "you sound great"!  Most of my doctors don't acknowledge chronic lyme and say I'm just depressed, and the SS judge said I was faking.  The abandonment and feeling of betrayal makes it a very lonely battle; the online Lyme groups are many victims' only means of support.  I have heard many say their experience with cancer was "a walk in the park" compared to Lyme Disease! At least, they say, cancer victims are not shunned, abandoned, ridiculed, denied and disbelieved. Thank you for doing this show and please share the political, financial, and social battles that most with this disease fight as well.  A great deal of information is available on my blog: tickscauselyme.blogspot.com         Robin Curran