My Lyme Story
My name is DeAnne. I have been married for 13 years to my best friend and we have two beautiful daughters. I love literature, music, writing and coffee. I think I’ve finally figured out that I want to be a librarian when I grow up. I collect antique typewriters and have an obsession with thrift shops. I also have Chronic Lyme Disease. My body is damaged and I am constantly in pain, but most days you can’t tell by looking at me. It may look like I’m managing, but I am merely surviving. I fight Lyme Disease every single day.
My story starts like many other Lyme sufferers. I don’t clearly remember one specific tick bite (because there were many) and to my knowledge, I never got a “Bull’s Eye” rash. I do have vivid childhood memories of picking ticks off of my legs after being outside all day while living on a farm in Texas and I have always been an animal lover, so there were countless instances over my lifetime when I rescued and took care of dogs and cats that were covered in ticks. I rescued a puppy in 2003 that was covered in ticks and a week later discovered an engorged tick in my belly button, so that may be the culprit of the majority of my problems but we will never know. The bacteria transmitted from the most recent tick had could have caused whatever diseases I already had from childhood to become active from it’s dormant state.
It’s not a big surprise that I got bitten by ticks. What is surprising is how clueless I was about the immense danger and health threat that comes with tick bites. My mission now is to spread awareness about this deadly disease, so that other unsuspecting victims do not have to suffer needlessly.
I started experiencing strange physical problems in 2007. I had panic attacks so severe that I wasn’t able to drive for over a year. I was given antidepressants and Ativan and told to see a psychiatrist. Not long after the panic attacks started, I had flu-like symptoms and sinus infections that got worse over time. By 2008 I was so fatigued that I just wanted to sleep all day. I was constantly dizzy and would lose my balance easily. I still thought most of this must have been caused from my body recovering from two pregnancies and chasing a toddler while taking care of a baby all day. I thought it would go away.
The panic attacks lessened, but the severe fatigue did not let up. I also started having numbness and tingling in my hands and feet. One morning, I passed out while I was taking a shower and this was what made me realize that I needed to become my own advocate for my health. Something serious was happening to my body, whether doctors believed me or not. I started seeking more medical help and was on a mission to get to the root cause of my debilitating symptoms.
My doctor ordered every blood test in the book and I had an EKG and scans, but nothing significant showed up except that I had a minor heart defect and my Epstein Barre test was extremely abnormal. My doctor said she had never seen the kind of results my test showed. It looked like my immune system was badly compromised from having the EB virus for so long, but that was all she could conclude. I found out later that this is common with people who have had a tick-borne bacteria in their body for so long. Every infection or illness never seems to completely go away. After steroids and other medications, I actually felt worse and my symptoms seemed to go crazy for the next year.
Fast forward two years later and I was still searching for answers, but now with much more urgency. By 2010, my daily symptoms were unbearable. My joints and muscles were in constant, burning pain and the debilitating fatigue was/is my worst enemy. I had regular migraines, severe mood changes, neurological issues, memory lapses, sensory and eye/vision problems, IBS issues, numbness in my hands and feet, inability to move, muscle twitches, tremors and the list goes on. It was becoming a nightmare… with no end in sight.
I found myself in my doctor’s office, feeling completely helpless and frustrated with our medical system. My trusted doctor of seven years, told me that there was nothing left for her to do. She tried to convince me that my pain and fatigue were all in my head. Then she uttered the words that would propel me into a mission to find a doctor who could help me…
“I’m not going to keep ordering these expensive tests for your symptom of the week.”
No one believed that there was something truly wrong with me. I knew my body and I knew that what was happening to me was NOT normal. I left her office feeling completely defeated and overwhelmed. I cried the whole way home.
Sometime later, a friend suggested seeing their chiropractor who was also a kinesiologist. She believed he could help me or at least figure out the cause of my problems. I had nothing to lose. I made an appointment and within five minutes of my visit after I had told him my symptoms, he gave me a worried look and said, “I think I know what is causing your problems. You may have Lyme Disease.”
For the first time in years, a doctor was listening to me, believed me and wanted to help me. He took a sample of my blood and was able to see the spirochetes using Dark Field Microscopy. He sent it off to a doctor that was more knowledgeable in Lyme disease and it was confirmed that I had Late State/Disseminated Lyme Disease. I was shocked, relieved, and scared all at the same time. At last I had an answer for my mysterious ailments but I didn’t know anything about Lyme. I researched, studied and read as much as I could about tick-borne illnesses and I was absolutely floored by what I was discovering about this deadly disease. The hardest part of the diagnosis to swallow was the blaring fact that there was no cure, only the hope of a long remission.
After 14 rounds of vitamin and hydrogen peroxide IV treatments and natural remedies, I realized – after many weeks of research, that I should try long-term antibiotics. The more I read about tick borne diseases, the more concerned I grew for my health. My new primary care doctor prescribed a few months of antibiotics, but then believed I “had no more need for antibiotic treatment.”
I knew I needed to see a doctor who specialized in Lyme Disease. We couldn’t afford it, but I became more desperate for help with each passing day. I was blessed with loving friends – as well as complete strangers, who cared for me and gave us enough money so that I could make the appointment. I had my first appointment in January ’13 and after testing CDC positive on an IgeneX Western Blot, I did oral antibiotics for over a year in conjunction with natural remedies and supplements – including daily B-12 shots and natural antibiotics – Samento, Banderol and Colloidal Silver. It was around this time that we also found out that my youngest daughter was also positive for Lyme. I passed it to her in utero.
By 2014, my neurological and cardiological symptoms were so bad that my LLMD was fearful for my overall health and said the best way to treat the brain and heart was through IV antibiotics, so I did 9 months of IV antibiotics. I started them through a PICC line in my arm but that kept coming out, so I had a power port surgically implanted and it worked wonderfully. After trying a few different antibiotics, Vancomycin was the best for my symptoms and co-infections. I went from bedridden and feeling like death, to being almost back to 80% of the person of once was before Lyme Disease. It felt amazing but there are still many bad days mixed in with the good. It continues to be a daily battle for me and my daughter’s future.
I am hopeful for health and in the meantime, I am passionate about teaching prevention and spreading awareness about this horrific disease that has stolen so much of my life.
Prevent. Educate. Advocate. Help me by joining the Lyme fight and bring much-needed awareness to this growing epidemic. If you want to read more about Tick-Borne Disease and how you can prevent it and spread awareness, please visit my site www.aboutlyme.org.