CORKSCREWED: A Long Island Horror Story
The ticks are in my blood, they’re going in to my brain, and they’re going to kill me”. I will never forget those words. They will haunt me until the day I die. And hopefully I won’t die the same way my father did. I don’t think anyone deserves to die that way; it was straight out of a Stephen King novel. Like one of his stories where the characters get some horrible parasite that eats them from the inside out. And that is exactly what happened to my Dad.
I remember the day he said those words back in 2008; he was sitting in the driveway of his gorgeous Shinnecock Bay waterfront home on the cobblestone curb, with his head in his hands. He tried to tell me why he was changing, but I couldn’t hear him. “Dad, you don’t have Lyme disease… Dr. A said that your tests were negative”. But Dr. A was wrong – dead wrong. Slowly over the next nine years Dad turned in to someone else. My big strong hero, lifeguard of Fire Island, stopped jogging on the beach, his heart would not beat right. My super smart health and gym teacher started to lose his words, and began to misplace important items. My aggressive, never-back-down Dad, New York State Champion wrestler, became passive, meek, soft spoken. He went from “lazy” forced-into-early-retirement by cardiac arrhythmia, to absent minded professor, to the walking dead.
It took about eight years for the heart/brain infection to kill him. He didn’t know who I was by the time he left this earth, and truthfully, no matter how many times you tell yourself its coming, you’re still not really ready when that moment of dementia comes. The moment when that big, strong hand that held yours all those long years as you grew from a wee child to a mature adult, turns soft, and weak. When that soft weak hand pulls away, and eyes full of anger and fear look at you and demand “who are you??”
Before we knew that he had Lyme carditis, we thought he had cardiac arrhythmia. Well, he did have cardiac arrhythmia, but what we didn’t know is what was causing it. See, there was a reason that the multiple surgeries didn’t work, the open heart, the ablation, the bottles and bottles of pills, the pacemaker, the defibrillator, none of that really controlled his heartbeat. It was always out of rhythm due to a disease that some say doesn’t even exist – chronic Lyme Disease. For fourteen years my father was 4 bands positive on the Western Blot blood test for Lyme. Fourteen years of missed opportunities to right the ship. This wonderful, intelligent, compassionate man was denied the right to a proper diagnosis due to a fraudulent case definition for this horrible disease we call Lyme disease. Fourteen years during which this healthy teacher/lifeguard/champion wrestler who never drank and never smoked in his life could have recovered. He could have, if only someone believed him. But nobody did. Including me.
My Dad was what the medical profession calls “seronegative”. Seronegative Lyme is a lie, and I’ll tell you why. In October 1986 the first “Lyme disease expert” Dr. Allen Steere published that you only need band 41 on a western blot test to be positive for Lyme disease; that study was published in The Journal of Clinical Investigation. Dad made antibodies to band 30, 41, 50, 58, and yet he was told for fourteen years (that I can prove) he didn’t have Lyme. (By the way, an accurate test for band 41 is owned by Yale US Patent#5,618,533, but the test is never used).
See, originally Lyme borrelia were perceived by the US Centers for Disease Control and Prevention (CDC) to be just another group of Relapsing Fever organisms. Borreliae (the whole genus) undergo constant antigenic variation, making vaccines and valid testing impossible except for detection via an anti-flagellar antibody method. Let me stop and explain; relapsing fever organisms, mean that the disease waxes and wanes. Both of my children are immunosuppressed, had relapsing fevers, unexplained high fevers that came out of nowhere that just went away on their own, only to return months later. Constant antigenic variation is best explained using an analogy to Barbie dolls. Barbie wears a lot of different styles and is always changing her look: one year in a movie she is a mermaid, next year a fairy, the following, a rock star, but under the fashion – she’s still Barbie. So Barbie = Borrelia. Vaccinating for Lyme would only be effective if “Barbie always wore the same outfit”. And we all know that ain’t gonna happen. Barbie loves fashion as much as Borrelia loves to change its outer surface protein sequences. Add to that the fact that there are over 200 DNA sequences for Borreliae, so… what vaccine?? Hogwash. That is what got us in to this mess in the first place, the LYMErix vaccine. See, Dr. Steere knew that Lyme can cause one of two outcomes, one is essentially an allergic response to a borrelia infection, which causes “Montauk knee”, the other outcome is an immunosuppression outcome, a neurological illness that is much, much worse than Montauk knee. And so in 1986 leading expert Dr. Steere acknowledged in his published research that: Lyme invades the brain, it can exist dormant in the central nervous system, and that it can also be the cause of seizures, encephalitis, dementia and manic depression. Then, in 1994 he said that people were only catching hypochondria from ticks. All official cases of neurological Lyme were officially denied when the current 2-tier Lyme disease blood tests were made the standard of diagnosis at a meeting of experts in Dearborn Michigan. The current system of testing was never intended to diagnose Lyme, it was intended to pass off a bogus vaccine that was ultimately pulled off the market after a class action lawsuit.
So here we are, in the driveway and I am thinking “how on Earth is this man, who is arguably one of the most intelligent and well spoken people I know spouting nonsense about ticks in his brain??” Well that statement sat about as well in my stomach as would a day old salami sandwich discovered under the front seat of a hot car, and I never forgot it.
Fast forward to 2012, Hurricane Sandy. Well, remember that beautiful Shinnecock Bayfront home I told you about? Yeah, it was full of water after Sandy. She opened the closet and wiped out my Mom’s entire shoe collection in one fell swoop (no easy feat I assure you), and afterwards my parents moved in with me for a few months. It was then that I realized that there was something seriously wrong with Dad. It was worse than forgetting things, losing words and being absent minded. He was losing his marbles.
And just like you can imagine that hot, old salami sandwich coming up for a second visit, that statement about ticks in his brain rose to the forefront of my consciousness with the same taste of acrid bile… what if the doctors were wrong? What if all this time… he was right, and nobody believed him? And so, I did some research, and I decided to believe Dad. I picked up my sword and shield of education and I went to do battle with the neurologist. She won. No Lyme.
It wasn’t until 2015 Dad finally got the respect he deserved. I wrote a heartfelt plea to Dr. Alan MacDonald, former Chief of Pathology for Southampton Hospital. For free, he performed a DNA test on Dad’s blood confirming the diagnosis of positive for Borrelia Burgdorferi, and Borrelia Miamotoi. It was comforting to know the truth, and I had such high hopes for a cure, Dad was only 68 years old and a tough old bird, he could pull out of this! Education is power! Knowing is half the battle! I finally knew what the problem was, and I set off to fix it!
Sadly, a cure was not to be found for Dad. He was simply too far gone, the “ticks had ate his brain”, they corkscrewed holes into his heart, and there was not enough left of him to save. After many heroic efforts from local doctors, my Dad left this Earth last March.
I miss him every day, but I remember all he taught me. He left me with the gift of determination to share the truth, and so I teach others about the dangers of ticks in an education series that I wrote called “Tick Wise”. In his honor I will continue my efforts to save others from his fate by helping them to avoid being bitten by a tick in the first place. Well, that is truly the best way to beat Lyme disease – never get it in the first place. As for the rest of us, well, we need to just wait for the Truth to Cure us.