Seizures Caused By Neurological Lyme:
The Diagnosis was Finally Made By an ILADS Physician
By the Grace Of God
I am writing to hopefully get you to inform others, and save them the trouble I have had to go through. I will try to be brief, and upon request I do have ALL files and tests results to back up my story.
You see, two years and two months ago, I had a Grand Mal seizure. I was hospitalized and medicated. I have continued to have seizures off and on since then, with them getting progressively worse since March. I have been on Depakote, Dilantin, Tegratol, and Topamax. I was told these seizures were from a car accident I had in 1989, when I hit my head on the windshield. End of discussion: accept it, take medications, don't drive, and move on with your life. One option was to look for a scar, and do surgery. Although this was a hard decision to make, I was told I was a good candidate. It was scheduled for the end of August.
By chance, I met a Lyme disease specialist, Dr. Gregory Bach. My husband and I went to meet with his wife, who is a dog trainer, to see if our dog could be trained to help with my epilepsy. When we arrived she was not available yet, so we chatted with her husband. I explained a little of my health condition and why we were training our dog. Something I said seemed to spark a question regarding my diagnosis. After speaking with Mrs. Bach about training our dog, she asked my husband and me if we would mind talking some more to her husband, as he was very interested in my medical history. After several hours of talking, he hit us with a bombshell! "I think you have been misdiagnosed. I think you have Lyme disease. If you would be available, I would like to run tests tomorrow." Talk about speechless!
We went home not knowing what to think, but within one week every test they took came back positive for the disease. The test Dr. Bach did was sent to IgeneX Laboratories in California, and is much different than the regular test run at a regular lab.
All I can say is by the grace of GOD!
To make a LONG story short, I have been treating with antibiotics, am seizure- free, and feeling the best I have in two years. My neurologist from the University of Pennsylvania, (who was to do my brain surgery before it was canceled), agrees now, after testing, the seizures were caused by the Lyme disease going undiagnosed for so long, allowing it to progress to the late stage.
PLEASE help me to inform more doctors and patients, and save them the terrible time my family and I have gone through. I am a 29-year-old female, married to the most supportive and caring husband, and have 3 children who all suffered through years of anguish. The doctor now wants my whole family to be tested for Lyme disease.
This could, and should, have been avoided with a simple blood test in the beginning. Should I even mention how much blood work is done monthly when on these kinds of seizure medications? I ask for your help in spreading the word and helping others that may have the same condition.
Unfortunately, this type of scenario and experience is still not rare. Many academic centers and rushed sincere physicians simply do not appreciate that Lyme is common, is not removed in a magical and arbitrary three weeks of antibiotics, and they routinely do not test for co-infections that occur with Lyme.
For more information, look for a new upcoming book by Dr. Charles Ray Jones and Dr. James Schaller, MD.
Dr. Jones has treated over 8,600 children with Lyme and has unsurpassed experience. He was originally a top pediatric cancer researcher and clinician, until the 60's when he increasingly became aware of children with diverse illnesses that did not fit his training. He has been the cause of thousands of saved lives, and Dr. Schaller credits his mentoring with saving the lives of many of Dr. Schaller's family from Lyme and other co-infections.