- CASE FILE
A lifetime of mysterious, progressively worsening symptoms that have developed into a debilitating chronic condition.
ABOUT THIS CASE FILE
The growing list of medical symptoms has deeply effected every facet of my life. It started out with being born without a working immune system. Despite being an above average birth weight and size. Spent the first few weeks of my life in a "bubble". Suffered chronic upper respiratory infections all throughout childhood and into my adult life. I've had moderate Tinnitus for as long as I can remember,and it continues to get worse. I have no idea what it's like to experience true silence. I suffered chronic pain in my bones and joints that I was told was merely "growing pains". I got fevers often, even when I wasn't suffering from any infection (that we knew of) . Sometimes fevers exceeded 104°F.
When I was 10 my family moved to a heavily wooded area in the mountains of Northern NJ, where I suffered tick bites. Some of which produced rashes. We knew almost nothing about Lyme disease and other vector borne diseases. My parents would take me to the doctor/hospital IMMEDIATELY after noticing a bite, and get tested for Lyme(they never tested for other co-infections) . Results were negative,so my family didn't persue it any further. Physical symptoms proceeded to worsen over the years. Then in high school I began to manifest neurological symptoms. I couldn't focus in school. Couldnt remember anything I studied. My brain became extremely "foggy". I started to struggle to read, write and draw/paint. By Senior year, I had difficulty articulating any thoughts into words. I stuttered, forgot words, couldn't structure sentences properly. It felt like my mind was holding all my words hostage. Then that winter (03') I fell gravely ill. On top of the progressing neurological symptoms, I experienced a sudden avalanche of physical symptoms. My body spasmed, twitched and convulsed violently and uncontrollably. I was wracked with widespread pain. It felt like my nerves were on fire. I experienced severe migraines, the kind that make one contemplate suicide. My skin became discolored and burned, felt like severe sunburn. I started to develop strange stretch mark-like "striae" over 75% of my body. My body temperatures shifted wildly, ranging from 95° to over 105° which caused intense sweats and chills. It was difficult to eat. Even drinking water made me nauseous. It was very difficult to communicate with people. Looking back, it reminds me of a stroke victim struggling to speak. It was hard to move around. I felt so weak and fatigued. I needed help doing everything.
Luckily, that year I had started dating my now fiancé of 16 years. Whom is also a chronic illness sufferer, and so is her mother. Mom was pretty sure she knew what was wrong with me. With over 15 years of experience (at the time) of working for the LDA and being a TBD sufferer herself. She began using her resources to try getting me to a doctor who could test and then treat me properly.
When I got to a specialist with the knowledge of how to test me properly. They sent lab work out to various labs around the country, and my diagnosis was terrifying. I tested positive for not only Lyme disease on the Western Blot from 2 different labs, I tested positive for over a dozen vector borne diseases!
Borrelia Burgdorferi (found out many years later that I also have Borrelia Hermsii), Bartonella, Babesiosis, Anaplasmosis, Toxoplasmosis, Ehrlichiosis, Cytomegalovirus, Parvo virus, Epstein Barr virus, Mycoplasma Pneumoniae, Chlamydophila Pneumoniae, HV6 and others that I cannot recall right now.
Considering the prevalence of ticks in our town, and how long ago I began getting tick bites, who knows how long these diseases were making themselves at home in my body. But it was over a decade from my first bullseye rash before I ever got properly tested and treated for any of these diseases.
This was the beginning of the hardest journey of my life. I required many months of treating these diseases in the order of their severity and endangerment to my health. I had no insurance and no money in the beginning. Couldn't afford the extremely expensive Intravenous treatments, so I was stuck with oral medications, with my grandparents and fiancé's mom fitting the bill, trying to save my life. It was many years down the road to recovery. I got reinfected several times, receiving more bites, testing positive on tests again, unti we finally moved away from that tick hotzone.
Around 2010- 2012,i finally started to really get my life back together health wise. We had managed to knock out nearly all the diseases and put Lyme and others into remission. I started doing physical therapy, pain management, going to the gym, doing cardio and light exercises for well over a year. I still wasn't right, but I was so much better than I was before. I was still in alot of pain, and exercising for a hour or so, doing light yard work, or house cleaning, still totally wiped me out for the day. Requiring lots of downtime and rest. I still couldn't work. Not even part time. But I kept telling myself that I would get there if I kept at it. I was at least 50-60% better and aimed for 100%. I went to the gym for an hour a day. I ate healthier. Kept up with my doctor, getting regular lab work to track my progress.
Little by little I got better... I would occasionally get a Lyme flare up, and then my Epstein Barr and Mycoplasma would somehow reactivate, which really slowed down my progress. But we kept fighting back and we kept pushing forward. I keep getting kidney stones chronically, altering my diet helped but hasn't eliminated them.
Everything changed in Oct. 2012. We got hit hard by Hurricane Sandy. We were stuck in abysmal living conditions for nearly 2 weeks before we were evacuated. Little did we know that it would take 4 years from that disastrous event before our house began to resemble a home again... And during that time we all got sick again. Our home wasn't treated properly for mold and myself, my fiance Nicole and my grandmother all were sick from toxic mold exposure. (positive tests in lab work) Nicole and I both suffered horrible relapses during those years. We became so sick again that we couldn't exercise anymore. We all struggled to take care of ourselves in the most basic of ways. Our viral infections kept flaring up badly. I even developed shingles, twice during that time. (fungal-viral synergy) We did end up getting the house treated professionally (twice) and used several measures to eliminate the mold ourselves and it seemed like that problem was eliminated. However ever since then, we continue to develop worsening and debilitating conditions.
Im chronically fatigued, in lots of pain all over my body. Muscle, joint and nerve pain. I'm experiencing degeneration of cartilage in my spine and joints. I've been told I have Fibromyalgia and CFS. I've developed a severe intolerance to gluten and several other food allergies and chemicals sensitivities. I've had to eliminate many foods from my diet and have to avoid chemicals in soaps, detergents, deodorant, shampoos, etc.
I started to develop Plaque Psoriasis, primarily all over my scalp, but occasionally get a random plaque on my neck, torso or legs. A strange rash began developing on my neck and has now spread down my chest and up my neck all over my face and head! I was told that it was also likely psoriasis. I was prescribed a topical solution (Clobetasol) to treat the psoriasis, which the results ended up confusing doctors. The solution does help reduce my plaques and redness on my scalp, however when applied to this rash all over my neck, it makes the rash spread farther and become even more discolored!
My neurological symptoms are still present. Not as severe as they once were, but still deeply impacting my life and ability to function.
So now today, I'm 34 years old. Experiencing new and worsening symptoms each year. I still can't work or support myself. My fiance Nicole, who is only slightly more healthy than me, ends up stuck with much of the burdens and responsibilities. My grandmother, who is a 75 years old asthmatic, in dire need of a double knee replacement and shoulder surgery, is STILL working, so that she can help cover my medical bills and try to help me get better. I survive (because this isn't living) off of welfare, foodstamps and medicaid, which doesn't cover our food costs at all, and the insurance isn't very good either. They don't cover many prescriptions, more and more doctors are refusing to take accept it. It's REALLY hard to find specialists that accept the insurance. We used to recieve General Assistance from the State, which included a small amount of cash assistance to cover necessities not covered by Food stamps, but the state terminated our GA in 2017.
Every year, more and more debt piles up, my health worsens, and the future looks more grim. It's so difficult to get the help we so desperately need. Since the Hurricane we have accumulated over $60,000 of debt, between medical bills and home repairs. Im really not sure how many more years we can endure like this.
I need help and desperately want answers. I want to get healthier. I want to become a contributing member of society, and feel like I have a purpose in this life before I die. I want to start LIVING instead of just barely SURVIVING!