Today I found out the results of my SPEC scan of my brain that I had done at California Pacific Medical Center in San Francisco, California. I had a routine appointment with my local Lyme literate physician in which I learned about the results of the brain scan. The results of the scan concluded that I do have abnormal blood flow to certain parts of my brain that is consistent with what the radiologist sees in Lyme disease. I also have a low blood flow to another part of my brain that is not normally seen in Lyme disease. The lack of profusion, or blood flow, to certain parts of my brain implies that the Lyme infection is actually in my brain. I have encephalitis or inflammation of the brain. It is also spreading within my brain because it has moved to a new area. This information disturbs me. On the one hand, I expected my brain scan to be positive because of the memory and disorientation problems that I have been experiencing. On the other hand, I thought that the results might be negative because for most of these past 8 years I have not had that many symptoms of brain dysfunction. I had considered myself lucky until recently when I started driving to the wrong destinations. After I found out that I do have an abnormal scan of my brain, I felt sad. The realization hit me that this disease has actually impaired my brain. What does that really mean? Am I not as smart as I used to be? My identity is tied to my intelligence. People have praised me my whole life for my ability to achieve. Will I be able to reverse the problems with treatment? At the current moment, I can hardly remember how to drive to familiar places or what words to use when I am trying to talk. Just writing this blog entry is incredibly challenging for me. I can't think of the words to write. Words that make no sense pop into my head.
Somehow having scientific proof that the Lyme is in my brain makes the reality more real. I can no longer tell myself that my brain is probably fine. I now know that it is not fine. This illness cannot take away my mind. It has taken so much from my physical body, but I will fight with all my strength to restore my mind. Sometimes I actually doubt my thinking process. It is as if I don’t trust my own brain. I will endure whatever side effects of whatever powerful drug that I have to take to give myself a chance to reverse the damage that it has done to my brain. My doctor told me that eventually she will have to put me on an IV antibiotic because only IVs and intramuscular injections can cross into the brain to fight the infection. It is extremely painful to know that my mental capabilities are now limited by this infection. Without Lyme disease, I am so capable. If only I can rid my body of this awful disease, then the possibilities for me will be endless. I will be free.
Wednesday, November 15, 2006
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My son is 15 years old who was FINALLY diagnosed with Neurologic Lyme diseass after a 7 year search for an explanation to progressive and changing symptoms. After a 3year internet search I stumbled upon Lyme info. and found one specialist in this entire state who is shunned by the NC medical community for his treatment protocols. (He follows ILADS).
My son was an A student with an IQ of 135 and whose identity at school was, "The smart kid", is a gifted musician, has wavy blonde hair, blue eyes, is chased by girls, has a gentle spirit and a heart as big as the sun. Now, he is barely passing school, and was placed on homebound services while undergoing treatment for Lyme. His recent Neuropsyhological Evaluation indicated short term memory loss, auditory processing deficits and slow processing, learning disabilites in reading and math, ADHD, depression, anxiety, and the school district doesn't want to give him special education services. It doesn't matter much anymore what the school district wants or doesn't want because last night my beautiful boy was taken to the emergency room and subsequently admitted a psychiatric facility three hours away for suicide attempt and prescription drug abuse. The specialist had warned us about the possibility of emotional disturbanc during treatment of Lyme. Has anyone heard of this?
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