I was always outdoors - golf, tennis, camping, hiking, canoeing! I was diagnosed in late 2007 with adrenal fatigue. In Jan 2008, I had a stroke. I had to learn to walk and talk again. Late 2008 I was playing in a golf tournament in the Dominican Republic and had a grand mal seizure. Upon returning home, my journey with doctors began! I simply wanted two to make the same diagnosis. Fortunately, I stayed on antibiotics during this time, just not aggressively enough.
I continued to have seizures although 6 neurologists agreed there was nothing wrong with me!! Frustrated with my health and the medical community, I swore off doctors of all kinds. I had three grown children and a husband that worked internationally. We lived in a three story home on acreage with a pool. I lived alone and was afraid to leave the main floor, I was afraid to get in the pool, I was afraid to walk in the yard alone. I could no longer drive and had to rely on friends and neighbors for everything! Late 2009 a friend pleaded with me to see her doctor and I finally gave in - this doctor would change my life - she immediately diagnosed me with lyme disease! My first reaction was, "My Father died at the age of 54 (1978) with complications from lyme disease!" Sheer panic, with a side of relief, finally getting a diagnosis.
I began treatment, although again, not aggressively enough. This doctor explained the guarded term to me - llmd - lyme literate medical doctor. I began searching and was fortunate to find one in Florida where we happened to own a condo. I soon met a compassionate, brilliant llmd that I credit for saving my life! He explained I was in for a long road and said it would be expensive. He could not have been more caring, nor honest! So, early Spring 2010 after 2 PICC lines, I had a port implanted and began the treatment supervised by the llmd. I had been diagnosed with late stage lyme disease, Rocky Mountain Spotted Fever, Bartonella, Babesia, Ehrlichia and Mycoplasma. The earlier antibiotics had kept me alive but I needed serious treatment immediately. That protocol included 16 hours a day of IVs, 52 pills a day and 3 shots a day. I could not even comprehend what was in store! He said I would get worse before I got better, explained herxing, detoxing, weekly needle and dressing changes, the importance of sterilizing the port. All this, alone, exhausted. I cried, got angry, then got serious! I wanted my life back! It was not easy but in time the seizures got better, and eventually stopped. (Of course by this time, I had fallen so many times, broken teeth out, had numerous stitiches, but I was alive!)
By the end of 2011 I was able to drive again! Freedom! MRIs, CT Scans, Brain Specs - all a "normal" day in the life of a lyme patient! By mid 2012, I actually felt I was getting better. Then as with most Lyme patients, you fall right back down with the same symptoms, only to repeat the entire process over again. My husband and I decided we needed to sell our home and downsize, because of my inability to maintain so much house AND the constant influx of medical bills!This was a blessing in disguise, it reduced so much stress!
Today, two chest implanted ports and ten picc lines later, I am doing much better. Good days, bad days but I am stronger!
My Faith, Family and Friends have gotten me through the worst part of this frightening disease. Having late stage neurological Lyme such as memory loss, difficulty concentrating, and “brain fog” as well as encephalitis (inflammation of the brain and surrounding tissues) has taught me just how precious this one life we are gifted is for each of us. Lyme Disease has taken six+ years of my life and may take me from this world early due to all the antibiotics and damage done from not getting medical help soon enough, but one thing I do know ... I will help others through this process, I will fight to get this disease recognized, and I will live everyday to the fullest. It made me stronger than ever!!
I started Georgia Lyme Disease Connection (http://georgialymediseaseconnection.com/home.html) and now speak all over the country to healthcare practitioners, patients, various organizations about the difficult challenges and complexities of Lyme disease and its many co-infections. Recently I was selected to chair MayDay 2016, which will be held at the CDC in Atlanta. May, being Lyme Disease Awareness Month, gives the perfect opportunity to present facts to the CDC in hopes of getting needed guidelines changed for all patients nationwide!!
If I can be of help to you or a loved one, or if you would like to arrange a speaking engagement, please contact me, Karen Sherrill, at 770-630-5500.
In July of 2011, I found a tick in my hair. Two weeks later, I became sick with fever, exhaustion, and extreme pain. A rash appeared all over my body. With time and meds, life seemed to return to normal until the beginning of the next year.
In Jan 2012, I began my Freshman year of college, but sickness returned with a vengeance, where I required a wheelchair. I was hospitalized, had tests run, MRI and spinal tap. From that point on, I struggled with joint and muscular pain that would come and go in intensity. That spring and summer, I was always tired and seemed to get sick very easily.
Oct 2012, 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.
The good news was I had a diagnosis, but the bad news was the harsh reality I faced when I returned home. After getting in touch with Georgia Lyme Disease Connection, I got the name of an infectious disease specialist in Georgia. I was placed with a PICC line began IV Rocephin. I began feeling better right away and experienced a lot of improvement. It has not been all good news, though. In Jan 2013, I woke to both legs continually moving as if I were riding a bicycle. I had a major seizure in the ER 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.
My father lost his job and we lost our health insurance. Going to the neurologist was out of the question. Then I had another blow: gallbladder surgery in May. Thankfully, my father was offered a job last week and my mother will start a new job this week! so we will once again have health insurance.
Although I am definitely better than I was, I will be on anti-seizure medication indefinitely and I have arthritis in my knees and hands that is permanent. When I do see a LLMD, I will certainly follow his advice and do everything I can to get back to ‘the old me’. I desire very much to return to college asap as I still want to be a Physician’s Assistant. I have learned so much through this painful experience, and want to use it in a positive way. One day I hope to be able to help others with Lyme Disease to quicken their treatment, lessen their pain, and be an advocate so that they do not have to go through what I did.
Karen Sherrill, My Story
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Georgia Patients Sharing Their Stories