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Larry L's Story

Here's my story that I submitted to Dr. Joel Cohen who is looking for examples of people with Neurological problems associated with Lyme Disease.

I live in the Sticks with the Deer & the Ticks,
And I'm "TICKED OFF" about having Lyme Disease!

Dr. Joel Cohen:

I understand you are looking for examples of Neurological problems associated with Lyme Disease. My very first symptom of Lyme Disease was a grand mal seizure! It happened during the night of 6/11/97; I woke up in Chester County (PA) Hospital. The Doctors checked me out thoroughly, including a Lyme Titer (ELISA) test and everything was negative. I was discharged and the Neurologist suggested I have a sleep apnea test. He had no other suggestion. Further, he did not prescribe any medication.

I hasten to add that I had never had a seizure before and there is absolutely no history of seizures in my family. I was 57 when this happened. My wife pointed out a suspicious rash on my right hip that I neglected to show my family Doctor during a follow up visit. Because of the seizure, I had my driver's license suspended for 6 months.

That same rash then flared up 7/12/97 & I went to my family Physician with a bright EM rash over 2" diameter and high fever of 104F. He said "I'll bet you have Lyme Disease" and ordered another ELISA which also was negative. He put me on 30 days of Doxycycline. My symptoms resolved.

Then on 8/17/97 I had another grand mal seizure during the night and again woke up in Chester County Hospital. Again, all the tests were negative. But this time the Neurologist prescribed Dilantin. I did the sleep apnea testing which showed nothing that might have caused the seizures.

Then on 10/9/97 I had another episode of a bright EM rash (at least 2") raging fever (104F) and severe shaking. The rash was in a different place from the first bite. Again, my family Physician prescribed 30 days of Doxycycline. Also, the ELISA was negative. This time my symptoms did not resolve. After I complained, my family Physician referred me to an Infectious Disease specialist.

He put me on Suprax for 6 months which helped. In the meantime, I saw 2 different Neurologists who had no clue about Lyme Disease causing seizures and absolutely refused to consider the possibility. After the 6 months of Suprax, my condition improved & the ID specialist declared me "cured." How wrong he was when 5 months later I started going downhill to the point where I could hardly walk.

I sought out another Doctor who has been treating me with antibiotics for over a year now and I'm much improved and cautiously optimistic. I have not had any more seizures and am currently on Neurontin and Phenobarbital. I did finally test positive recently on the Lyme Urine Antigen Test (LUAT) on all 3 samples.

I've had other significant neurological problems. Some people refer to "brain fog." I have difficulty doing more than one task at a time. My ability to do simple tasks like balancing my checkbook have become very difficult. My memory is shot; it's like my hard drive was erased & I'm trying to rebuild it. Actually, that's an advantage because Seinfeld reruns look like new to me!

I've had serious bouts of depression and tried to commit suicide a year ago. I'm seeing a Psychologist who is helping me significantly. I'm taking Effexor for the depression (the Neurontin also helps). The Lyme Disease and the grand mal seizures have totally ruined my life. I've had to stop doing many of the things I used to be able to do. Now, I spend 100% of my time on Lyme Disease awareness and prevention programs so that others won't have to suffer as I have.

What's very frustrating is that the medical community steadfastly refuses to consider that Lyme Disease can be chronic and cause so many problems. In our Lyme support groups we are besieged by people who have been misdiagnosed by various Doctors who absolutely refuse to consider Lyme Disease. What's really tragic is the great number of children with Lyme Disease whom are unable to keep up with school work. Many are misdiagnosed with ADHD, and put on Ritalin. All Ritalin does is mask their symptoms so they'll never get proper treatment.

I heard one Doctor say recently that we are raising a generation of Lyme children who will never achieve their true IQ and never achieve their true potential! That's a tragic legacy. The medical community needs to wake up and treat the tens of thousands of people with chronic Lyme Disease. Too many Doctors are more determined to try to prove the patient doesn't have chronic Lyme Disease than they are in trying to heal the patient. They've lost sight of their Hippocratic Oath.

Thank you for reading my story. I'd be glad to answer any questions you might have.
Larry Linford
Lyme Disease Community Coalition
1104 Wilderness Trail
Downingtown, PA 19335-4044

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