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Monday, January 19, 2015

Ticked Off

Like most people with long term Lyme disease, getting the correct diagnosis is half the battle.  It was a long and painful journey to get to the diagnosis of Lyme Disease.  

I am not really sure where or when I was bitten by the tick that infected me with Lyme disease.  I have traveled extensively the last few years.  The truth is, that according to the Center for Disease control, Lyme disease is present in all 50 states, and much of Europe.  I did travel to the east coast about three years ago, shortly before having my first symptoms of Lyme disease, where Lyme disease is most prevalent.

If you were like me, I really knew little about this insidious infection.  I knew that it was a rash caused by a tick bite, but I knew little beyond that fact.  In my mind, I incorrectly assumed that it was similar to a spider bite.  I thought that the effects lasted a few days and that was it.  I am from the Mid-West, and we are not really educated by health care professionals or Public Service announcements about Lyme Disease.

Over the last three years I have been incorrectly diagnosed with:
frozen shoulder
Rheumatoid arthritis
Psoriatic arthritis
conversion disorder (my personal favorite)

I was prescribed with methotrexate, which is an immuno-suppressing drug, and a type of chemotherapy, which made my situation worse.  

Imagine my anger when I found out that what I really had was Lyme Disease.  The clues, symptoms, and test results were there all along, from the beginning.  The doctors ignored the symptoms, dismissed test results, and shifted me from one type of doctor to another.

More later...

There is a lot of mythology surrounding Lyme disease. Be careful of  so-called herbal or home remedies.

Here are some facts about Lyme Disease:

  • In 2013, there were over 27,000 cases of confirmed Lyme disease reported to the Center for Disease Control, with an additional 9,000 or so unconfirmed but probable cases.

  • Lyme disease is under-reported.

  • Lyme disease is in 49 of 50 states and much of Europe.

  • Chronic Lyme disease is a real condition that is not easily treated, probably because it usually comes with several co-infections.  All of the co-infections need to be treated before a patient will improve.

  • Getting mis-diagnosed is a common problem for many patients.  Getting a proper diagnosis is difficult and may take years and visits with several different doctors.  This needs to change.

  • Doctors are not gods.  They make mistakes.  Tests can be misinterpreted or just plain wrong.  Most doctors are taught little about Lyme disease.

  • You don't have to travel far to get bitten by a tick.  I know someone who was bitten by a Lyme tick in her back yard and contracted Lyme disease, right here in Indiana.

  • Be your own advocate for your health.  Your doctors may not care.  As one doctor said to me, "I have no skin in this game."  Don't give up when trying to get the proper treatment for Lyme disease. If you loose faith in your medical professional, move on.  There are a few out there who care and will help you.  

  • Once Lyme disease is in the third stage that causes arthritis, you have had it for a while.  It is going to be difficult to treat.  It may take a long time to get rid of since you've had it so long.  Be patient.  

  • Believe it or not, there are many people around you who also have this.  Ask around.  Talk about Lyme disease.  A lot of us are suffering in silence.  

  • You need to have hope to survive this.  
Why am I writing this?  My doctor told me that I have a lot of emotional pain and anger about being misdiagnosed, mistreated, and even harmed by many doctors.  She said that I needed to deal with this anger or I won't recover.  I have vowed to be an advocate for Lyme disease patients who are going through similar struggles in their lives.  Maybe someone will read this and see their own symptoms and get the help that they need to get well.  I know firsthand how painful and debilitating this disease can be and how frustrating it can be to get the proper help that you need.