Lyme Stories from North Carolina Residents
Asheboro, NC - Real Lyme Stories
I live in Asheboro, NC (Randolph County). I was bitten by a tick (which I found, removed & saved) while gardening in my own yard in March of 2001. I was vaguely aware of tick-borne illnesses at the time and did what I thought was standard protocol -Removed the tick, marked my calendar, labeled & preserved the tick & watched for any symptoms. I began feeling ill about 3 weeks after the bite and called my primary care physician. I was seen in his office for what he labeled a "flu" - at the time of the first doctor visit, I informed him of the tick bite and was told "LYME IN NC IS VERY RARE". I made another appointment with the same medical group but saw a different doctor 2 weeks later when my "flu" just wasn't getting any better and again mentioned the tick - this time I was told "LYME IS A NORTHERN ILLNESS & YOU SHOULD ONLY WORRY IF YOU HAVE TRAVELED UP NORTH IN THE PAST FEW MONTHS" - My diagnosis "lingering flu". The following week what I believed to be a bull's eye rash appeared at the bite site and I visited both my primary care physician and later the same day a medical provider in an urgent care facility.
My primary care informed me that I had a "SPIDER BITE" and the urgent care provider felt it was an "ALLERGIC REACTION" - I referred to the tick bite some 6-7 weeks earlier with both providers - neither felt you could be infected with Lyme in NC. My "flu" continued although the "spider bite" only lasted about a week - I went to 3 more doctors appointments with my primary care provider's group before I insisted that they write me a RX for antibiotics and administer a Lyme test - which they finally did but informed me while handing me the lab sheet for my blood work that it was a waste of my money & their time. Almost a week after the Lyme test, a message was left on my answering machine (from the primary care provider) .....Just as they predicted, the Lyme test was negative, stop taking the antibiotic, throw away the tick & find something else to call my so called illness. I began to believe after all the medical providers continued to say, that my problem must not be Lyme because the test results wouldn't be negative otherwise, therefore I began visiting other medical providers in an attempt to find out why I had such a broad array of symptoms. No one could say although everyone I mentioned the tick bite to felt the "Lyme" concerns which I had earlier were nothing to be concerned about, after all Lyme was a Northern illness & very rare.
By Sept 2001, I had multiple symptoms which were affecting my normal day to day life. My memory was horrible, I had a severe & almost constant headache, the left side of my face & neck were totally numb, and my body seemed to vibrate as though an electrical current was running through it along with various other problems. I visited a well respected physician at Wake Medical that informed me I should seek the advice of a psychiatrist because my symptoms were most definitely in my head. I ended up in a Neurologist office in September 2001 that finally informed me (after weeks of testing for neurological issues) that he could find nothing nerve related for my problems but he was sure we were missing something very obvious. We began a 3 hour list backward in time chronicling each symptom as they had appeared - I mentioned the tick bite and he was ecstatic - He stated he should have expected Lyme - surely that was what it was. When I told him I had been tested & the test was negative, he replied, they are all negative the first few months but he was certain that was my problem. He informed me he had no idea where to send me for treatment but promised to find someone within the next 24 hours. He called the next day with 2 options, one in NC and one in NY.
I have been under the care of a LLMD at his recommendation since late October 2001. I was tested again & test results were positive (by CDC standards) for Lyme, Babesia, Ehrichioses & some type of protozoa. I am frequently told "I am one of those "VERY RARE CHRONIC LYME CASES" - I know of several others in my county, so it must not be too rare. When diagnosed in 2001 I was teaching high school where there were 7 others were "positive" for Lyme - that has never sounded rare to me - a school in a rural community with so many rare people. I have been on meds since Oct 2001 and have gone through 2 separate PICC lines with a total span of IV drugs totaling 23 months. Because of a superb Lyme literate medical provider and much persistence, many of my symptoms have gone completely, while others continue to come and go. At my worst, I was forced to take a 10 month leave from my job just because I couldn't function at the manner in which I was required. I am once again working full time but not in as stressful of an environment as teaching high school (I am now an accountant with a non-profit). I was insured through my previous employer until Blue Cross/Blue Shield determined it was no longer in their best interest to cover Lyme patient's care, therefore I (along with most other Lyme patients) now pay out of pocket for my medical care which is alarming.
Please do let me know if there is anything else I can do to help in your efforts and by all means let me know how the meeting progresses. I do appreciate the time and trouble you are going to and wish you the best.