Dori's Story

During that spring and summer, I was always tired and seemed to get sick very easily.  I had various bouts of illnesses which required more hospital visits.  There was never a diagnosis other than something acute, such as bronchitis or the flu.  I planned on going off to college in Brunswick for the Fall 2012 semester, hoping I could manage without health problems getting in the way.  Unfortunately, within the first couple of weeks of college, I experienced pain which caused me to miss numerous classes.  One night in September I had terrible pain in my head and neck and went to the ER.  The knowledgeable doctor there  could not find an immediate cause for my pain.  He asked me what I was in school for, and I told him I wanted to be a Physician’s Assistant.  He then asked me what I thought I had.  I told him that my family and I had wondered if I had Lyme Disease.  The doctor agreed, saying Lyme Disease was a very plausible explanation, but that this was not something that would be diagnosed in an ER.  He gave me a shot for my pain, and sent me back to my dorm. 

On Thursday, October 4th, I attended classes normally, but that afternoon noticed my knees were red and swollen.  The redness, swelling, and pain increased throughout the evening, and by that night I was in terrible pain.  I went to the ER and they could not find a reason for my symptoms or anything obviously wrong with me.  Once again, the ER doctor said the Lyme Disease was a possibility, but I would need to see a specialist for this.  They gave me a shot for pain and I returned to my dorm.  About three hours later, my pain had become excruciating and my roommate took me back to the hospital.  All they could do was administer another shot for pain.  I hurt so bad that I could not use my feet to operate the pedals on my car and had to have a friend drive me the three hour trip home.  Once again, I had no choice but to withdraw from school.

The next three weeks were pure hell.  During that time I saw a rheumatologist, who found that I had developed antibodies to Borelia Burgdorferi (Bb), which is the actual causative agent of Lyme Disease.  However, because the Western Blot Lyme test was negative, she couldn’t officially diagnose me with that.  Instead, she referred me to the Mayo Clinic, who scheduled me for January 29, 2013.  The pain was relentless, though.  On October 23, after being awake all night in tears, my parents decided enough was enough, and drove me to the Medical College of Georgia in Augusta.  The doctor who saw me there was wonderful; he spent a long time listening to my story and then promptly diagnosed me with Lyme Disease.  My parents and I were so excited to finally have a diagnosis, which meant I could finally get treated and hopefully get better.  He started me on a month’s worth of antibiotics and said my primary doctor could take over from there. 

The good news was I had a diagnosis, but the bad news was the harsh reality I faced when I returned home.  Despite the fact that I had medical records from Augusta listing my diagnosis, my doctor at home did not believe I had Lyme Disease.  He stated Lyme Disease did not exist in Georgia!  In fact, he did not even want a copy of the hospital records that I brought from Augusta.  I went home and had no idea what to do next.  I improved for a couple of weeks on the oral antibiotics, but then began to decline again.  

I was miserable; I was in a holding pattern, awaiting my Mayo clinic appointment.  After getting in touch with other people from the Georgia Lyme Disease Connection, I got the name of an infectious disease specialist in Georgia.  I saw her on December 6, and she concurred that by history alone, she could diagnose me with Lyme Disease.  When I told her about the rash, she was fascinated.  She said she knew exactly what I was talking about; that was a very rare rash that occurs in Lyme Disease.  It is so rare, that in her twenty years of practice, she had never actually seen it, only read about it.  They ran a large battery of tests for confirmation and to rule out other diseases.  Unfortunately, during this time I also started having seizures, which resulted in more hospital visits. 

My treatment was finally started on January 10th, 2013.  They inserted a PICC line and I administered my rocephin every night at home.  I began feeling better right away and experienced a lot of improvement.  Since I had a firm diagnosis, I was able to cancel my appointment at the Mayo Clinic. It has not been all good news, though.  On January 19, 2013, I woke up at 4:00 a.m. because both of my legs were continually moving as if I were riding a bicycle.  Nothing I did could make them stop.  By 11:00 a.m. I was absolutely exhausted.  My parents drove me to the hospital in Macon, where I had a major seizure in the waiting room and was subsequently admitted for the next five days.  Even though I was getting treatment and getting better, the Lyme had progressed to my neurological system.  The neurologist there told me I did not have epilepsy, and put me on Keppra to prevent future seizures.  He said the uncontrollable motor movements were a pre-cursor to the seizure.