For 20 years now I have been ill. A "Mysterious" illness. Mis-diagnosed, mis-labeled and indefinable according to health professionals. It started when I was in college, after a camping trip to northern Minnesota. I was bitten by a deer tick, and unbeknownst to me the rash I got was a sign of worse to come. When I got home, I was VERY sick for six months. I was working two jobs to pay for college and help my mom with bills (she had Lupus) and had no medical insurance for myself at the time. So I would save to go to the doctor, only to get no answers and no tests. I was told repeatedly I had the flu. I had fever, chills, body aches and extreme fatigue. (For six months!) Once the flu-like symptoms subsided I was in pain. The pain has never stopped. I do not remember what it feels like to not be in pain anymore. The pain is DEEP inside my muscles. It has now spread to every area of my body. The doctors told me I had fibromyalgia:I never believed this was the case for me.
Over the last 20 years I have been diagnosed with other illnesses, Hypothyroidism, Poly Cystic Ovarian Syndrome (which puts me at risk for diabetes, heart disease and high blood pressure), Endometriosis, Depression, Anxiety Disorder, daily headaches, Tachycardia (rapid heart rate), Hiatal Hernia (my stomach is pushing through my diaphragm), Irritable Bowel, Irritable Bladder, Neuropathy, TIA, Hyperlipidimia (very high cholesterol), my body also cannot perform Methylation (release toxins and supply oxygen normally) and those are just the ones off the top of my head. My blood work shows many other unexplained abnormalities with my platelets and liver as well.
Recently (the last two years) I have been under great stress. Although I lost my mother to Lupus in 2000, I lost my dad to kidney failure in July 2012. Also in 2011 and 2012, due to medical circumstances and job changes I also was unable to keep my home and it was foreclosed. I also had to file bankruptcy and lost my car also. These stressors were horrible for me, and being the primary provider for my son the strain was off the charts. I became even more ill. I was nearly bed-ridden. I forced myself to go to work as I needed to take care of my son. (Thankfully I have a VERY compassionate workplace now.) I would come home from work and all I would want to do is sleep. The pain in my muscles has gotten worse, the pain spread to my skin also, and my joints. My muscles in my arms and legs twitch violently. I experience visible twitching in my face. My resting heart rate is anywhere from 100 to 140 beats per minute. I have tremors in my hands. I have peripheral neuropathy (numbness, tingling/ pins and needle sensations) in my arms and legs. My anxiety and panic attacks have become worse. I am confused, I frequently misspell/rearrange letters in words, use incorrect words when I am speaking, and forget things that I normally would not. I have restless leg syndrome. I have body rashes. I have gained 50 pounds in less than two years without change in diet or decrease in activity. I have had an increase in allergic reactions and developed many unexplained sensitivities to foods and chemicals.
I was referred to Mayo Clinic as my blood work indicated that I had a positive ANA test. (This would indicate a possible auto-immune disease.) After Mayo found no conclusive evidence, although there were many things out of skew with my blood, I did my own investigations to find out what might be wrong with me. I was growing SO very weary of being ignored and blown off by everyone. I knew in my heart that this was a matter of life and death for me. If I didn't find out what the problem was that I would die young. I finally found a specialist in a nearby state that confirmed a diagnosis of Lyme Disease, as well as co-infections Babesia, Bartonella, and Ehrlichia. All from that tiny deer tick in northern Minnesota.
It has been an unbelievable blessing to have found an answer. However, my journey has just begun. The treatment for Lyme disease is outdated, especially for those who have chronic Lyme disease like me. Since my disease went undiagnosed, and misdiagnosed for 20 years treatment will be extensive and likely some of those treatments will continue for the remainder of my life due to the damage my body has sustained. My treatments will not be covered by my health insurance. This includes the supplements I need to take to balance my body systems that have been damaged, the testing that I need to have to find out what kind of damage has been done, and the supplements I need to take to try and kill the Lyme bacteria and other infectious bacteria from the tick bite. I also am travelling 3 ½ hours one way to doctor appointments, and my present car is old and not in good shape, subsequently it is a bit of a gas eater. (All of which contributes to the cost of my appointments.) I am working the best I can as a part-time secretary for a Lutheran Church in my hometown, and they are SO awesome to provide my health insurance. Unfortunately what I need right now is not covered. I also have Mayo medical bills to pay, and ER visits from the last 2 years. Financially I am only able to get by paying my bills and feeding myself and son right now, and that in and of itself is barely do-able. When adding in the medical bills and circumstances, this situation becomes impossible. This is why I am asking for help. This was hard for me to do, as my pride stood in the way. Through prayer and faith I have realized how many good friends I have that are willing to help me, and I also know that there are many good people in the world that would be willing to lend a hand. God wants me to be well. I want to LIVE! I want to see my son graduate, I want to send him off to college, I want to continue to rescue dogs and do photography, I want to keep making people laugh and smile as long as I can. I want to be an awesome grandma someday!! I promise you that when I get through this dark tunnel I WILL make a difference for other people that are walking this path, and I WILL make a difference in the lives of dogs and cats that need help. Please help me with continuing treatment now that I finally have an answer -I will try to keep this page full of updates for all of you as I embark on this journey. God bless all of you, and please know how much I appreciate your kindness. Love and Hugs and such, Lori Casey (Bartz)
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