I have never been more grateful for my scientific training. I started gathering my medical records and for one weekend, my husband sat at one computer and I at the other, papers everywhere. It was like a scene from Lorenzo’s Oil where Augusto and Michaela Odone were desperately trying to find a cure for their son, Lorenzo, who was suffering terribly from ALD, Adrenoleukodystropy. Doctors had no answers. They were their son’s only hope at life. We were in a similar search for our lives.
We had it easier than the Odones in 1984. We had two computers and Google, the web search engine. I began with my blood work, using Google to help sort what each test meant, both in purpose and also in results. To my shock, of the ten Lupus tests that had been run four different times over the past couple years, I had never had a positive test! My positive ANA was very high, usually indicative of Lupus. My IGM levels had been elevated on several occasions and it warned on the blood work that lupus and chronic infections of Lyme and Syphilis could be responsible. I ruled out Syphillis.
We looked at more tests. On each of four spinal taps, my protein levels were mildly elevated and climbing, with a few white blood cells in each, consistent with Lyme disease. My general blood work indicated a pattern of elevated white blood cells inconsistent with Lupus. It had been explained by inflammation, but certainly a chronic bacterial infection could produce the same results. Elevated amylase levels, unexplained by the Lupus diagnosis, could be explained by Lyme disease.
I knew there was a controversy concerning Lyme disease in the U.S. and turned to Canada and the CanLyme website for information, hoping to find an unbiased resource. I was startled to see of the 75 symptoms common to Lyme, I had experienced 65! It suggested that if you had more than 20, you should be evaluated for the disease by someone who understood the disease. Many of the symptoms listed, I had experienced during my trips to the ER just weeks earlier when nearly a dozen neurologists had examined me, yet Lyme disease had never been mentioned. Why?
In their defense, one could say my Lyme test had been negative. Unfortunately, a false negative result occurs in 40% of late-stage Lyme cases, which is why a Lyme diagnosis in late-stage Lyme should also be based on clinical symptoms. Though a negative ELISA seemed to satisfy my doctors, it didn't put my mind at ease, due to my overwhelming number of symptoms and especially when I read that Prednisone, a drug I had been on for years, was the last drug that should be given to a Lyme patient because it compromises the immune system. I had been placed on two powerful immunosuppressants, Prednisone and CellCept. If it turned out my disease was indeed Lyme disease, the misdiagnosis had not only robbed me of precious treatment time, but had weakened my own body's ability to fight the disease. Our search continued.
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