I suffered from an unknown illness since before the age of 5 when I was first hospitalized. Nothing was ever found, and as I approached 35 I just had more and more strange issues and problems that never were found to be caused by anything and with each problem I was eventually told it was just some "syndrome" or rare thing I would need to live with or it would go away eventually. On my 36th birthday I told my best friend that something was wrong with my body. I woke up sick the next morning, very sick. Not the sinus infections that I seemed to get every two weeks or the horrible pain, but also unable to see right with a long list of strange neurological problems. I went to the Dr., and after 5 weeks of specialists was told there was absolutely nothing wrong with me, with the final neurosurgeon putting her hand in my face and saying that the only thing wrong with me was in my head. My friends and family helped me know that I was sick and not crazy, and my primary Dr did a Lyme test. Only about 1/3 of typical Lyme tests are accurate, there are a lot of negatives. One of the PA's for the neurosurgeon whispered to me that it sounded like Lyme. As a last ditch effort the test was done and a few days later my Dr called so excited to have an "easy" diagnosis and not MS or something similar which we were very concerned about. She gave me 21 days of antibiotics and said I'd feel better in a few days. That was 2009. By January of 2010 I was living in my mother's house, unable to afford my home or work for the state government in a job that I loved with a life that I loved, and was now spending my days taking medications, supplements and hour long IV's. Lyme disease and all the related coinfections (one tick bite can transmit dozens of diseases to a person, and ticks can be found in your house, you don't have to be a hiker or live in CT to get Lyme disease, it's in just about every country in the world now), all very controversial, while studying about these things and realizing something was not right with this picture. After 21 days of antibiotics (guidelines call for 28 days maximum) I was still sick, and had begun preparing for my death by letting people know what to do and what to take care of. Luckily I live in a state that has a lot of Lyme and a lot of Dr's who understand and can treat it. I was on IV for 22 months, and antibiotics for 26 months. The disease had 30 years before it was caught to wreak havoc on my body, by the time we began treating it, like an onion layer after layer of damage was revealed. I have incurable neuropathy, with pain so bad it makes you want to not live. I have cardiac and respiratory problems. Memory loss and sever cognitive dysfunction. It took 12 Dr's in a speciality to get a biopsy needed to gt help for the pain that kept me in bed for 3 years. I've had to fight my way through dozens of Dr's who are just not educated about Lyme. The greatest Dr in the world without knowledge about something can't help you. With so much controversy I have had to fight every step of the way for every bit of treatment. I've had over 12 diagnoses since Lyme disease, several conditions caused by the disease and others because of a compromised immune system all my life. Living in an area where there are hundreds of people just like me with my story I was angry when I got sick that the attitude I was given was to stay quiet and not make noise about the disease because of the controversy. That really upset me. If anyone had opened their mouths and yelled out the horror of this disease, and the reality of it beyond the typical idea of what Lyme and co-infections are from the 80's when Lyme was first becoming known. The disease is often misdiagnosed as alzheimers, MS, fibromyalgia, ALS, Lupus and a long list of other syndromes and diseases we don't have any known cause for. If I had known any of this I could have put two and two together and realized that all my strange symptoms since I was 5 all led to Lyme disease. But nobody was sharing this information, or not having success in trying. I got sick at the time of social media, which led to the beginning of my own personal website, Lymebites.com as well as hundreds of others who joined me in sharing their story publicly. Insurance companies use the same people who write the guidelines for Lyme treatment to write the guidelines for insurance coverage, and therefore many families, including my own, spend hundreds of thousands of dollars and give up everything to help get the care their family member needs. I had to take all the anger I had inside and focus it somewhere while I laid in bed year after year with nothing more than my laptop and what was left of my mind that was working properly. I've now been sick and totally disabled almost 5 years and living at home with my mother supporting me for the last 4 years, many days unable to even feed myself. I decided no matter the outcome, Lyme will always be a part of my life, and I feel like I am so blessed to still be alive (yes, Lyme disease can kill you!) and have such amazing family and friends supporting me that I needed to pay it forward, a lesson many of us in the Lyme community learn, teach and share with each other as we try and find our way through a disease where you really have to be your own advocate and not put 100% trust in any medical professional until you've done the research and learned all there is to know before deciding on how to help yourself for the rest of your life so that you end up like me. I continue to fight daily for every bit of life I can, and in the process want to make sure nobody ever had to suffer and lose as much as I have. At same time this has also been the most wonderful blessing of beauty in my life as I've learned to appreciate what and who is truly important. I will never shut up about this disease and all that it can do to ruin your life. I owe it to everyone I see to let them know the truth, so that when faced with an illness or a tick bite they have the knowledge they need to get help when they need it and not let a disease fester in their body for decades until they are disabled for life. That is my purpose in life now, as I fight for my own, to help others not risk their own because they're armed with the knowledge to make appropriate choices for their health.
I’m a Patient Leader