My Lyme Story

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My name is DeAnne and I am 34. I have been married for ten years to my best friend and we have two beautiful daughters. I love literature, music, singing, my church, coffee and my dog. 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 and co-infections Babesia and Bartonella. 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 this disease every single day.

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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 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. The most significant tick bite that I remember, and the one I believe is the cause for my suffering, was in 2003 after rescuing a puppy off a Missouri highway. A couple of weeks after picking fleas and ticks off the puppy, I discovered an engorged tick in my belly button. It’s not a surprise that I became dinner for some ticks. What is surprising is how clueless I was about the immense danger and health threat that comes with tick bites.  My mission is to spread awareness about this deadly disease, so that other unsuspecting victims do not have to suffer needlessly. The puppy I rescued was immediately given antibiotics when I brought him into the vet. Unfortunately, I was not. This little detail in my story, could have changed my current circumstances. If I had been aware of how easy it is to get tick borne diseases, I would not have Late Stage Lyme disease.

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Little me with one of my many kittens and puppies

I started experiencing strange physical problems in 2007. I had panic attacks so severe that I wasn’t able to drive for almost 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, 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 I realized that I MUST become my own advocate for my health if I want to be healthy. 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.”At that point, I couldn’t hold back the tears. No one believed that there was something wrong. 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.

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 telling him my symptoms, he gave me a worried look and said, “I think I know what is causing your problems. I think you 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 spirochetes in my blood using Dark Field Microscopy. He sent the slides off to a doctor that was more knowledgeable in Lyme disease and he confirmed they were Borrelia spirochetes. 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 or other tick-borne diseases. 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 these deadly bacteria. The hardest part of the diagnosis to swallow was the blaring fact that there was no cure, only the hope of a long remission.

Spirochete magnified under dark field microscopy

I had my first LLMD appointment in January ’13 and after testing CDC positive on a Western Blot, (blood test). I have been on high dose, long-term antibiotics in conjunction with natural remedies and supplements – including daily B-12 shots and natural antibiotics – Samento, Banderol and Colloidal Silver. In February 2014, I had a PICC line placed to get IV antibiotics, but had complications and had to get it removed. I then had a Power Port surgically placed in my chest so that I can administer my medications. I do an IV bag of Primaxin 3 times a day with IV fluids in between doses. I’ve seen a dramatic improvement in my overall health with continuous antibiotic therapy and I am hopeful for the future. 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 “Lyme Links” page.

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