Sonoma County, CA
Infected: Unknown (believed to be early 2014)
Diagnosed: Fall 2016
Current health: “On meds, fighting hard, hoping to feel normal again.”
I count my blessings everyday, I am here, alive, with a beautiful family and an amazing group of friends. I live for my good days and, on the bad days, I try to stay focused on the fact that another good day is on its way. -Tory P.
Tory, a young woman from Sonoma County, shared her story with us, describing the painful experience of feeling “like the girl that cried wolf,” amongst the many doctors, friends, and even sometimes family that just didn’t see her suffering until it became too severe to ignore. We wish her and her beautiful baby a healthy and happy future.
“In May of 2014, I noticed a bite on the back of my leg with a red ring around it (the classic bullseye that indicates Lyme disease). I emailed my doctor asking if I should worry about the bite. She recommended treating it with anti-fungal cream and that is exactly what I did. Three months later the ring was still there but I chalked it up to ‘the healing process,’ as I was unafamiliar with the signs of Lyme disease. At this point in time, I can’t remember having any additional symptoms.
“On November 26th, 2014, my life completely changed. I was vacationing in San Diego with my family for my daughter’s first birthday. When I woke up the morning of November 26th, I told my mom I was in severe pain and then collapsed on the floor. I was transferred to Sharp Memorial Hospital, where I spent the next six days with some of the best doctors trying to figure out why I was in such agonizing pain. Over the six days, my ability to speak and make decisions about my health was limited. Thank God for parents! They decided, after multiple tests, to do exploratory surgery. During surgery, the doctors found fluid in my abdomen and drained it, suspecting this was the reason for my unbearable abdominal pain. They stitched me up and sent me to recovery.
“When I woke up the following morning, the pain was still there, my muscles were on fire, my joints were locked, and I could barely stand, I was so weak. The doctor came in to check on me and said they would like to keep me for further testing but that they were stumped and couldn’t give me an exact diagnosis. I declined to stay any longer as by this point my baby was back home in Sonoma County and I was missing her like crazy. I checked myself out of the hospital and gave myself one night in a hotel with my mom to muster up the energy to fight the pain and board a plane to head back home.
“Over the next two years, I was seen by multiple doctors and specialists about the symptoms I continued to suffer from.They assured me every test had been ran and, after misdiagnosing me multiple times, they finally surrendered to the fact that they really had NO idea why I was so sick. During the next two years, I would have great days where I felt happy, healthy, and full of energy, but one great day would always cost me three-four days in bed. I did a great job at hiding out on my bad days, which were mostly spent curled up in my bed crying in pain and wondering why all this was happening to me. The hardest part was that nobody understood how I could go from seemingly perfectly normal to bedridden in agonizing pain. I felt like the girl that cried wolf, dismissed by many doctors, friends, and even family. But I knew in my heart that I something was not right and that God would give me an answer.
“I suffered for two years with chronic fatigue; unbearable headaches; muscles that felt like they were on fire; swollen knees, ankles, feet, and hands; stiff joints; debilitating abdominal pain; all-over weakness; shortness of breath; rapid heart beat; depression; anxiety; fear; and, worst of all, short term memory loss.
“After multiple episodes of fainting, hospital visits, doctors appointments, and too many tests to count, I finally hit the end of my rope. I woke up one morning unable to lift my head off the pillow, pain shooting through my head the minute I opened my eyes. I couldn’t walk without assistance, I didn’t even know what day it was and I had no will to live. I was suffering and I just wanted to die.
“My dad demanded answers from the doctors, at which point they decided to run three-pages worth of blood work, which included the test for Lyme disease. Sure enough, the test came back POSITIVE and was confirmed by another two tests. I had an answer! I was relieved to know I had an answer and could now make a plan for treatment, but quickly realized it’s not that black-and-white when it comes to Lyme. It’s complicated.
“I am disappointed by the lack of treatment options for chronic Lyme disease, but I am hopeful that somewhere, somehow I will be relieved of this pain one day. $30K in medical bills over the past two years to find out I have a disease that will most likely cost me thousands more out-of -pocket to treat makes me sad.
“I am currently on a 28-day course of antibiotics, along with multiple pain medications, anti-seizure medication, and many others. I have lost count of the meds and somedays my memory is so bad I forget if I have taken them or not. I sit in a blacked-out room, because the sun hurts my eyes and I pray for the day I feel normal again. Although this situation sucks, it is my life and as my dad said to me today, “You need to wrap your head around the fact that you have this disease and figure out how to live with it the best you can,” and he is right. I count my blessings everyday, I am here, alive, with a beautiful family and an amazing group of friends. I live for my good days and, on the bad days, I try to stay focused on the fact that another good day is on its way.
“I will fight this disease and I will get my life back! I will not let this disease defeat me and take another day of my life.” #prayingforacure
4 Comments on “Tory C.”
The testing is borderline criminal! I was suddenly sick in the fall of 2016. I had two distinct tick bites, one lodged in my hairline and one in the crease of my armpit, which turned to a bright red rash. Then, insomnia, racing heart, and a host of typical Lyme symptoms. I was tested for everything under the sun and ended up with a diagnosis of cytomegalovirus (a common coinfection of Lyme). Unfortunately my body wasn’t able to produce enough antibodies to get a positive Lyme test. Antidepressants and anxiety meds masked the symptoms for a few months. I was desperate and found a Lyme-literate naturopath and got an equivocal result with just one band p23 on my western blot. My primary care dr and the CDC consider me negative! This has to stop! Living in southern Maine I hear of so many people in the same boat, a very sad situation.
Your story sounds almost identical to mine. What makes me furious is that I went to the Dr. & showed him the rash behind my knee & told him that I had pulled a tick off. I specifically asked for antibiotics & he barely glanced at it. He said ” since you don’t have a fever there’s nothing to worry about. We don’t have Lyme disease here.” (What a load of crap.) He proceeded to tell me that we only worry about Rocky Mountain Spotted Fever here in NC. That was in April of 2015 and by September I was pretty much non functional. Since then it’s been one specialist after another, tons of lab work and a western blot test that came back negative. With a lot of research and numerous specialists I was finally clinically diagnosed with Lyme plus several co infections. I’m now being treated by a LLMD. It’s sad that in this day and age we live in that we don’t have a better way of testing for Lyme!
Most primary care doctors aren’t Lyme-literate and they don’t want to be sued for prescribing months of antibiotics. Our only hope is with Lyme specialists and naturopaths who know how faulty the testing is and make clinical diagnosis.
I too am in Sonoma County and diagnosed with chronic Lyme last year. Would love to talk and know who is treating you?