Karen Sherrill, continued.
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!
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. A dear friend joined my passion for helping others along this journey and in 2015 we founded Southeast Lyme Disease Foundation to ensure that the entire Southeast becomes educated. Recently I was selected to chair MayDay 2015 and 2016, which is 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! Now, partnering with Jeri Dobson Clemons, we have begun a new chapter ... Safe Harbor Lyme ... a non-profit for securing funds for lyme patients care needs. Who knew what all this journey would bring into my life!! I am blessed beyond measure!!
In May 2017, we visited with ALL U.S. Senators in Washington DC and shared updates about this disease! The response we received was overwhelming!
Lyme disease and its numerous co-infections are now paramount on the minds of hundreds of thousands of Americans. We are busy with Awareness and Education and most importantly .... legislation.
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.