Saturday, March 5, 2011

My Lyme Background

I posted this earlier on a different site, but am re-posting here for those of you who missed it before. 

So, where to begin....

     Lyme is a very mysterious and destructive disease.  Lyme is a bacteria that is transmitted primarily through the bite of a deer tick (there are many many many different species that carry Lyme and the multitude of co-infections). 

It is a spirochetal shaped bacteria, which allows it to essentially "drill" into every tissue and organ in the body, causing a multi-system involvement for infected individuals.  Every patient is affected differently, making the disease very hard to diagnose and even more difficult to treat. 

There is no single treatment protocol that works for every person, it is often a trial and error process of different antibiotics and other medications. 

The average length of time for treatment for a patient considered chronic (undiagnosed for over one year) is two to five years....I was undiagnosed for 13 years...So the journey begins!

   I was originally diagnosed with Lyme disease when I was 10 years old after showing classic acute symptoms of the disease.  I was treated according to protocol, six weeks of antibiotics, and was sent on my merry way.  However, it became quickly clear that things were not right.

 I spent the last 13 years of my life suffering from chronic pain and childhood depression.  I always knew that things didn't feel right, but with no diagnosable symptoms, my complaints were brushed off by doctors.  My symptoms as a child were mostly joint pain and numbness and tingling sensations down my back and legs.

  It was mostly manageable with Aleve, although once I entered my college years, Aleve became a daily necessity.  Still, I ignored the joint pain, took Aleve, and had a very successful college career. 

   In January 2010, things began to change.  All of a sudden, my gastrointestinal track began to act completely hay wire.  I was having trouble eating anything without being sick, and my abdominal pain was so severe I would often spend evenings and nights curled up on the couch in the fetal position. 

Then came the hip pain.  It started off as mild irritation on my daily walks with my dogs, but it quickly escalated into a pain so severe I was limping along the daily dog walking route.  I decided to see a Rheumatologist and finally find some answers. 

Unfortunately, after two sets of bloodwork and two exams, the Rheumatologist once again came up without any answers.  Although he did not know what was wrong with my body, he did believe something was not right. 
  
    Once again, I ignored the problem and pushed through the last quarter of my college career.  The last three motnhs in college were a major struggle.  Between my digestive issues and joint pain, I really knew things were taking a turn for the worse and I was  thankful that it had waited this long to escalate. 

In April, I moved to Alabama to live with my fiancee while he finished flight school for the Army.  It was over the summer I really began to struggle with daily life.  I was often times in too much pain to do the things I once loved, like ride my horses and hike with my dogs. 

It became difficult just to perform daily tasks like cleaning the house and bringing groceries in from the truck.  I was lucky enough to come into contact with a woman who has changed my life, and is now one of my best friends. 

This woman also suffers from Lyme Disease and after we exchanged a few emails, I decided to make an appointment with her Lyme Literate Medical Doctor (LLMD).  The wait list was long, so I made the appointment and went on with my life waiting the few months until I would meet with the doctor. 

In August I moved to Mississippi to attend the Masters of Science program of my dreams.  I was accepted to study applied beef cattle reproductive physiology, what I had always wanted.  Little did I know this dream was to be completely shattered and destroyed over the course of a week. 

The move was extremely stressful, and my body completely shut down.  I became so ill I could not hold a water glass, I couldn't eat, I couldn't sleep, I literally became a prisoner in my own body.  My body had been fighting this illness for 13 years, and it gave up after the stress of the move. 

I called the LLMD and flew to California immediately for an urgent appointment. 

After doing bloodwork with my LLMD, I finally was able to receive some answers, even though they were not what I wanted to hear.  After 13 years of living in the unknown, I found out I was still sick with Lyme Disease and Monocytic Human Ehrlichiosis and Granulocytic Human Ehrlichiosis. 

My life has been turned upside down by these disease more than I ever thought possible. 

I now live in Savannah, GA with my fiancee and have done my best to hold onto shreds of who I used to be.  I started my own dog behavior and training business, specializing in Pit Bulls and other powerful breeds. 

I also work for the local Humane Society and volunteer at the local Animal Control Shelter.   Due to my illness, however I can only work 8-10 hours per week.  Work is the only escape I have from the prison that is my illness.  It is a time to put on a facade of happiness, confidence, and normalcy, even though it is most often a lie. 

I have always loved Pit Bulls, and since I have been sick I find solace and feel a connection with these dogs.  They are misunderstood animals caught up in a mess that is not their fault, which is how I feel in my own life.  The dogs give me a sense of comfort I am thankful every day to have found. 

Each day has become a struggle against my diminishing cognitive function, horrible joint, neck, and back pain, abdominal pain, and depression.  This disease has taken nearly everything away from me and left me clammering to cling for dear life for what is left. 

Although I feel broken and shattered, I am still alive, and I will fight this battle with all of the strength that I have.  I hope this blog can help others suffering from similar illness realize they are not alone, no matter how alone they feel.

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