Hello everyone! My name is Shannon, I am 32 years old and I am from Freehold NJ. As most of you know, I have been in a battle for my life with Late Stage Lyme Disease and 4 other Tick Borne Diseases; Babesia, Bartonella, Anaplasmosis and Mycoplasma P. I want to start by saying that this is extremely difficult for me to reach out in this way and ask for financial assistance but I am out of options. The life I choose to live today is a life of helping others, so this is incredibly humbling.
In the spring of 2012, I began feeling ill with an array of strange symptoms. The symptoms became so severe that on one Wednesday morning, I was unable to move and my parents immediately took me to the emergency room, where a complete battery of tests and blood work were done. A few days later I received a phone call from the hospital informing me that I tested positive for Lyme Disease. As I type this I have tears in my eyes because I remember so clearly the feeling of hope and excitement I felt. I remember walking inside after the phone call, and saying to a friend “Good news! I have Lyme Disease". I felt so relieved that there was an answer....a diagnosis for what was plaguing my life. I felt so excited because I thought that with a 4 week course of Doxycyline I would be back on my feet and life would return to normal. Having had Lyme in 2004, I was sure I knew what to expect. I couldn't have been more wrong.
The last 2 1/2 years of my life have been filled with medical bills, hospitalizations, medications, surgeries and PICC lines. Thru seeking proper medical care from a Lyme Literate Medical Doctor (LLMD) I was made aware that in 2004 when I was first diagnosed with Lyme via positive testing as well as presenting with Satellite rings or Multiple Erythema Migrans, that this particular type of rash actually indicates Disseminated disease that is already Late Stage and systemic. I did not know this at the time and took 4 weeks of antibiotics and kept on moving. I also learned through proper testing that I was in fact sick with 4 other co-infections as well that would drastically complicate my road to better health. To sum it all up, I had been fighting for my life for almost 3 years now. I have been unable to walk at times, not strong enough to hold my own body weight. I have had Bell's Palsy numerous times. Seizure-like episodes, crippling bone pain, muscle weakness and atrophy, secondary hepatitis, weakening of my pelvic floor muscles due to nerve damage that required surgical intervention, thyroid problems and so on. One of the worst effects of my condition is the Neurological damage. At my worst, just a normal, everyday, instinctual thing like using a fork to eat became a 5 minute panicked debate in my head over what I was doing and how do people eat. My vocabulary dropped drastically. At a few different times I was unable to perform my job duties as a veterinary technician because of the neurological effects. I was forced into isolation because everything social was just too much to handle.
Now that I've given the back story, I will explain where I am at today and why I need your help. The unfortunate thing for us Lyme patients is that Insurance does not cover treatment. No exceptions, no appeals, no way around it. Trust me...I've tried. The reason for this is that due to lack of education on this disease, the CDC (Center for Disease Control) does not recognize Late Stage Disseminated Lyme as being real and requiring treatment. Insurance companies follow the CDC criteria on how to treat different conditions and considering that the CDC does not have a treatment protocol for this illness, the Insurance companies do not have to cover anything. I have an excellent Lyme Doctor in NYC that I must pay out of pocket, $550 every 6 weeks. This disease is unfortunately incurable but remission is possible. With intense antibiotic/anti-parasitic/supplemental treatment this disease can go into remission and I can live a few years of a normal life off of treatment. This is currently my second time on IV treatment. I have had a PICC line (a central catheter line which allows IV antibiotics to be administered) in since August 1, 2014. Only with the help of the wonderful people in my life and my self-less parents, I have financially been able to receive 7months of treatment. The cost of my medications, supplies and supplements is approximately $1,300.00 per month, in addition to the $550 every 6 weeks for doctor visits. This has put my parents and I in a serious financial crisis. This treatment has given me my life back. I am able to be an active aunt to my precious niece and nephews. I am confident in my work skills again. I have improved soo much but I have still not reached remission. My doctor feels I will need at least 6 more months of IV antibiotics to make remission possible for me. Unfortunately my financial options have run out. It would be absolutely devastating to have to discontinue treatment at this point and backslide into being debilitated again. I have fought soo hard for the life I have today and I’m not going to stop fighting. I have such a passion for life and so many dreams and goals that have been on hold due to my illness. I still believe these will all be possible one day if I can achieve remission. So with that, I am asking for help. Any help. Those of you that know me, know that I have been fighting having to reach out for financial help for 7 months now, but it has come to a place where I have no other options.
Thank you for taking the time to read this and a huge thank you to all of you that have kept me fighting on a daily basis.
- Robin Fay
- Cousin Love