Fighting Chronic Lyme Disease

Deanna’s Story

“Caught in a Medical Twilight Zone”

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Before I became stricken with this life-threatening disease I was active in my community rescuing animals, volunteering, and helping people live healthier lives. After graduating from the University of Oregon with two business degrees, I worked as a licensed real estate broker for over 15 years, and also enjoyed philanthropic work as a clinical nutritionist and fitness counselor. I authored two books helping couples find one another online. One of my life’s constant passions was caring for rescued horses.

Having had cancer, pneumonia three times, splitting my face wide open causing me to lose my voice for a year, covered in yellow jackets, among other traumatic life helpdeannacomposite-02experiences all seem like a cakewalk compared to what I have experienced in the last few years with Chronic Lyme Disease and co-infections.

Waking up in the middle of the night with half my body paralyzed, the rest tingling, and my brain shutting down as if I were having a stroke happened near the beginning of this devastation. It was a lonely, scary ambulance ride to the hospital ER. Little did I know then that I was about to enter into the biggest medical twilight zone which would result in a very long painful journey physically, emotionally, and financially. There is much science and evidence now through labs and doctors that Lyme is transmitted by just about every biting insect and not just ticks. I did have a spider bite in bed a few weeks helpdeannacomposite03before all the trauma started and many mosquito bites in FL, but it is hard to pinpoint the exact insect that bit me. There are a lucky few with Chronic Lyme who get into remission, which is what I am still hoping for and fighting for everyday. The short version of the story is that I was left undiagnosed for too long as with many other Chronic Lyme patients. It took over 400 blood tests, 10 hospitals, and 62 doctors before I was diagnosed with Lyme and by that time I would have it for life. The movie “Under Our Skin” helps explain the shocking politics behind this disease which hinder patients from getting diagnosed or treated properly.

Once diagnosed, I thought I finally could cure myself with the doctor’s help. Little did I know that if you do not get to the best Lyme literate doctor in time your chances become slim, and you get much worse. Doctors threw oral antibiotics at me andhelpdeannacomposite4 I got a little better, but then started to go downhill fast again. I’ve tried almost every natural cure you can read about online, went to endless naturopathic doctors, Lyme Clinics, tried new breakthrough medicines, ate very clean food, bought products and machines my friends swore by, and yet nothing was working. I could not stop urinating every twenty minutes in the beginning. It was hard to breathe, hard to stand. Then I began temporarily losing eye sight, lost much of my hair, had heart palpitations, seizures, TIA strokes, brain “fogging,” body tremors, aching legs, black outs, and many more symptoms. Finally, I had to have an emergency picc line inserted to my heart for fluids in November 2011, which I still have now going on my second picc line. helpdeannacomposite5Shortly after that surgery, I went into toxic shock. My body could no longer hold fluids and my heart was racing excessively much of the time. I was lucky enough to make it to Redwood City at the end of January 2011 to see two of the best Lyme doctors on the West Coast. By the time I arrived there, I needed an oxygen machine and wheelchair. Though my life was saved temporarily, many more near death treatments were to come over-oxidizing my red blood cells. Another mistake was doing plasmapheresis where I went into shock. The battle of getting into remission continues on, with a long road ahead still.

My perspective of the world has changed. Just being outdoors looking at trees, animals, or even watching cars drive by can be so surreal due to being bed-bound so much. The problems I used to think were problems in my life I now helpdeannacomposite06laugh at. If one has shelter, food, and health, I realize everything else can be overcome.

I was quite sure I was near my last breath many times in the past few years. Not only has this disease torn my body and organs apart, it has drained me financially as well since I have not been able to work in a few years.  I’ve been forced to sell anything I could for treatment. I’ve been in IV rooms most days since January of 2012. My heart and soul goes out to anyone suffering through Chronic Lyme Disease and I want to help educate and warn others so they do not have to go through my nightmare story.

"In the fullness of time, the mainstream handling of Chronic Lyme Disease will be viewed as one of the most shameful episodes in the history of medicine."
Kenneth B. Liegner, MD
Board Certified Internist + training in Pathology and Critical Care Medicine / NY
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