My name is Betty and I live in Amherst County, in the foothills of the Blue Ridge Mountains of Virginia. I am married, 61 years old and we have two grown children and four grandchildren. My husband Joe and I will celebrate our 38th anniversary July 15th.
I was a Physical Education teacher, K - 12, for more than 30 years. I played softball until I was in my 50's. My husband and I square danced 4-5 nights a week. I coached girls, 4th through 6th grades, softball. Today I consider myself fortunate to be able to do the shopping when I am having a good day. I continue to work outside in the garden even though I know the ticks are everywhere. I can't live in a glass bowl.
Sunday, the 15th of October 1994 is when I remember getting "sick!" Flu-like symptoms, aching shoulders and severe weakness. We were driving to Florida. I was so weak when I got out of bed the following Tuesday I fell on my face. The following day, Wednesday, I tried to find a doctor's office that was open. All the doctors in St. Petersburg must play golf on Wednesdays.
We decided to head back to Virginia and try and get over this sickness. It was two weeks before I finally went to the doctors. I don't like to go to the doctors!
Symptoms: Dizziness, very weak, flu-like feelings, ears ringing.
Diagnosis: an inner ear infection.
Prescription: - antibiotics for 10 days.
Two weeks later - I couldn't hold a glass of water I was so weak. I had to have two strong men carry me from my car into the house. Walking from the living room to the kitchen was an ordeal. Ummm, what did I come out to the kitchen to get?
My memory, or what was left of it, was short. I had to sleep several times during the day as my nights continued to be interrupted by insomnia and pain. My hips were aching. My toes had little or no feeling. Later they became so painful I couldn't keep the sheets or blankets on my feet.
I went to see a specialist. I was told I had sleeping sickness and chronic fatigue. I was given a prescription for sleeping pills to help me sleep better along with an anti-depressant.
By this time, just a couple of months now, I had to let my husband do the food shopping as I couldn't make it down one aisle in the food store. I borrowed a wheelchair from friends at our church. When we went shopping we would look for the electric wheel chairs.
I had been asking around our neighborhood about other people being sick and was absolutely positive I had Lyme disease. The literature my husband obtained indicated that my symptoms, at that time, all pointed to Lyme disease.
In January of 1995 I went to an Infectious Disease doctor. My blood test showed I was borderline! However, the doctor said I didn't have Lyme disease because I didn't have swollen knees and didn't have any bull's eye rash. He refused to give me antibiotics.
I went back to my doctor at our clinic and begged for antibiotics. I was given doxcycline and had a severe Herxheimer reaction. At that time I didn't have a clue what a Herxheimer reaction was. Neither did the doctor! We learned about it and many other things over the following four years.
I continued with chronic weakness and fatigue. The pain in my hips, neck and shoulders continued to worsen. I lost all feeling in my right foot. I couldn't spread my toes.
I was referred to one of our prestigious medical schools and had more blood tests. We had made many phone calls to other people who had some results with treating their Lyme disease with antibiotics. We once again begged the doctor to try antibiotics.
This time I was given (500mg/3X/day) of amoxicillin. Within a couple of days I began to feel somewhat better. I also took acidophilus to counteract the yeast infections. I also took a lot of supplements - vitamin C, COQ10, potassium, B-complex, echinacia, magnesium, just to name a few.
The doctor requested an MRI, a CAT scan, an EMG -where they stick needles into your legs to see if you "jump." This was done to test for any neurological problems. NOTHING! I continued with the antibiotics for about six months.
The doctor referred me to a rheumatologist. After a "quick" routine examination by an intern, the head rheumatologist came out, handed me a brochure, and told me I had Fibromyalgia. She took me off of the antibiotics and put me back on sleeping pills so I could get a good night's sleep. She also gave me prozac for my depression. Yes, I was depressed! The prozac only made me feel worse. I seemed to be going back downhill without the antibiotics.
The lack of any feeling in my right foot prompted the rheumatologist to get the EMG test I described above, where they stick all those needles in you to see how much you jump. The first doctor didn't have a clue how to run the machine or do the tests. I laid on the table with the bright lights hurting my eyes, froze my butt and waited for another doctor to try his skills. All the jabbing and electric shocks showed NOTHING!
The rheumatologist decided to send me to an orthopedic surgeon. I was scheduled for surgery on my right foot to help relieve the tightness and hopefully get feeling back in my foot. The surgery was performed. I did get some feelings back in my foot - for about a year! The numbness has returned!
I went on the proverbial roller coaster; feeling worse some days that would last for weeks. Then for a while I would have a little more energy and maybe last until noon before I had to lay down from exhaustion.
My garden suffered from a lack of my TLC for about two years, as I fought the chronic fatigue and continuous pain that wracked my body.
In October of 1998, almost four years later, I had a severe flare-up of my Lyme disease. I was having trouble breathing. My chest hurt. I didn't know it at the time but I was having a severe respiratory problem from an allergic reaction to my cat. He had deposited himself on my pillow. My husband took me to the nearest Rescue Squad, 12 miles away. They gave me oxygen which helped immensely.
The Rescue Squad took me to the Emergency Room of the closest hospital. The doctor in the ER removed the oxygen and ordered all kinds of tests. I pleaded with him to let me have the oxygen as I was breathing much better with it in the ambulance. I can't remember how long it took to get the oxygen back on.
I was admitted to the CCU (Coronary Care Unit) because the chest pains continued. The next morning they scheduled me for a Stress Test. I tried to tell the doctor that I didn't have any strength to be running on a treadmill. They wouldn't believe me! I lasted about 15 seconds before I collapsed. The doctor supervising the test said it was the shortest time he had every encountered.
When I returned to my room I spoke to the head nurse about getting tested for Lyme disease. Up to this time I have never tested positive. The very same doctor, who four years ago gave me a borderline diagnosis, gave me the same story! My knees weren't swollen and my blood test came back negative.
I was discharged later in the day. By the time I arrived home I was exhausted and laid down on my bed. Within a minute I was gasping for breath! All of the bedclothes went into the washer.
My husband had been on the internet and was referred to a doctor in Long Island, a specialist, who has treated Lyme disease. We packed our bags and drove over 530 miles, one way, to find a doctor that could help me. One of the patients in the waiting room laughed when she thought driving an hour was a long time.
After four long painful and discouraging years, I was finally diagnosed HIGHLY POSITIVE in two of three tests. This diagnosis was the Lyme Urine Antigen Test (LUAT). The doctor recommended that I try IV antibiotics for a period of time.
My next task was to try and get my local clinic doctor to administer the IV treatment that was recommended by the Lyme literate doctor in NY. She refused to even consider treating me because it was against her ethics! She referred me back to the Infectious Disease department of the medical university.
The Infectious Disease department did the preliminary examination since it was my first visit to them. I was told that the department head was very knowledgeable in treating Lyme disease. He came into the examination room and promptly told me that the standard protocol for treating Lyme disease was 21 days of oral antibiotics.
In a few short, heated words, my husband told the doctor that he should find out how to treat chronic Lyme disease. Doctors don't like patients to know more then them.
I went back home and called two more doctors to ask if they would consider the recommended IV treatment. NO!
My husband then went back to the internet to see if he could find a doctor who would oversee the IV treatment. I found the name of a woman who had been to the same doctor in NY, and lived near Richmond, VA. She gave me the name of the doctor who was treating both her and her husband for Lyme disease.
Four years after my first misdiagnosis - remember the borderline - I started home IV infusion of Rocephin antibiotics every night. Actually, my husband would do the IV every night after he came home from work. I completed 6 weeks of the IV with very little, if any, noticeable improvement. The doctor changed me to Zithromax, 500mg/day; another six weeks with still no real improvements.
I am now back on amoxicillin (825mg/2X/day) along with several supplements. We have recently moved into a much smaller home and less acreage. I continue to get my hands dirty in the garden, talk to my pets and hope!
My confidence and trust in doctors is almost non-existent.
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