Carol P's Story

Some time in the 1980's in Alabama, I was bitten in the back of my head by a tick -- not a little deer tick but a large tick. A week later, I experienced the flu symptoms with the pounding headache so I went to the doctor. He put me on antibiotics for 10 days in case I had Rocky Mountain Spotted Fever. In 1992, after having an infection of one kind or another each month for a year, I was in a doctor's office in New York and told him my symptoms.

He said, "I think you have Lyme Disease" and gave me the name of a well-known Lyme Disease specialist. The first doctor ordered a Lyme test. I went to this specialist who only talked to me and said I didn't have Lyme Disease. I tried to ask him questions about my symptoms and he repeated that I didn't have Lyme Disease. While still in NY State, I thank my lucky stars that I also went to a chiropractor who had Lyme Disease. I told him what had happened. He was pretty sure I had Lyme Disease and sent me to his doctor.

At this point, I believe I had two negative LD results. This doctor started treatment of two Zithromax and two Suprax a day based on my symptoms. He told me that if it was Lyme Disease, I would feel worse about two weeks into the treatment. Sure enough, I felt worse. Then I got better. I had to be completely symptom free for one month before I could go off the antibiotics. Well, I did all this. In 6 to 9 months, my symptoms would come back. I would go back on the Zithromax and Suprax and repeat the cycle.

This continued until 1995 when I was supposed to have 12 weeks of 1.2 million units of Penicillin shots each week. I got 5 weeks into the treatment and had a reaction so I finished the seven weeks with Zithromax and Suprax. I felt pretty good until 1997 when the symptoms slowly came back. By the Spring of 1998, I knew it was back full force. I started with an infection each month and was treated for the infection. My joints and muscles ached and the pain in my head on the left side was excruciating. My head hurt so bad that I couldn't think.

My local doctor sent me to an infectious disease doctor in September 1998. He tested me for Lyme Disease and it was negative. He told me he was sure I didn't have Babesiosis and didn't need to treat me for it. Then he dismissed me. I was very sick at this point and finally, my local doctor saw me and treated me for another infection.

In November 1998, I was back in NY and made an appointment with my Lyme Disease doctor. By this time, there were new tests and he ordered 5 tests to be sent to a California lab. Their results were that I have B. burgdorferi, Lepto-spiral spirochetes and Babesia. They put me on different antibiotics which caused a bad herxheimer. At this point, I'd had at least five negative Lyme tests.

Because I couldn't find a local doctor to work with the doctor in New York, I found a doctor who was 700 miles away who also has Lyme Disease. I have seen him once a month for the last year. Yes, I have been on antibiotics for this past year and I can say I finally feel well. I don't know if it's even possible to be cured but I am so grateful for the help I have gotten. I have also seen a homeopathic doctor and have taken vitamin and mineral supplements this past year.

Below were my symptoms. These came back each time I went off the antibiotics.

Swollen glands

Dark circles under eyes

Lost use of right hand in 1992

Muscles and joints ache -- pain moves around body

Big toe hurt like gout

Pain in left side of head at a 90 degree angle from the top of my head straight in from my ear

Warm areas that moved around my body

Extreme tiredness

Memory loss (short term)

Dyslexia

Handwriting changed -- Lost my ability to spell

Unable to think or move

Pains on the skin that moved around

Different areas on my skin that hurt to be touched

Left eye feels like it is watering when it's not

Both hands turn inward involuntarily. When I realize they are turned, I straighten them out.

With antibiotic treatment, my Mitral Valve Prolapse, Dysautonomia and Hypoglycemia are better. All of these symptoms have gone away with antibiotic treatment.

Carol Potts

The Lyme Disease Quilt Page

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