A brief history

** I wrote this for his first fundraiser hosted by his family in February 2013. It briefly depicts our story up until we left for India. **

In March of 2011, my husband Tyson began feeling very weak and fatigued. Thinking he might be out of shape, he set out for a jog. After only a short distance, Tyson felt the arch of his left foot collapse. We sought immediate help from an orthopaedist in Greenwich. X-rays came back normal so the doctor suggested we meet with a neurologist. In the weeks to come, the pain eventually ran up his leg, across his hips and back down the other leg. Neurologists initially thought he might have an auto-immune disorder so they recommended he try a course of IVIG. This proved to be unsuccessful and all the while he was gradually getting weaker. Doctors then recommended trying a few rounds of plasmapheresis. This is a very invasive procedure that involves removing blood from his body, separating the plasma and exchanging it with synthetic plasma. In the Fall of 2011, we tried about 10 days of this treatment with Tyson feeling only a slight bit of improvement which lasted only a couple of hours.

Unsatisfied, but not discouraged, we then sought help from one of the nation’s top immunologists, Dr. Denis A. Bouboulis in Darien, CT. He partnered with another neurologist to order MRI’s of Tyson’s brain and spine, a lumbar puncture, and a battery of blood tests, which also included an extensive Lyme test. Once again, all tests came back as though Tyson was the picture of good health, when in fact, he was still declining. We were advised to meet with one of the world’s top neurologists at Columbia University, Dr. Hiroshi Mitsumoto, who explained that Tyson had developed a motor neuron disease called “Progressive Muscle Atrophy” and would eventually lead to Lou Gehrig’s Disease, or ALS. Still, Dr. Bouboulis thought it would be prudent to try a more aggressive round of the plasmapheresis backed up with IVIG, in the event that it was perhaps an auto-immune disorder mimicking a motor neuron disease.

From January to March of last year, Tyson underwent roughly 25 sessions of plasmapheresis and saw no improvement. In the spring, he began an incredibly aggressive course of IVIG that lasted several months. He was still getting weaker. Tyson spent 6 weeks of the summer at Burke Rehabilitation Hospital in White Plains. There, he had daily physical and occupational therapy sessions to help regain some of the motor skills that were diminishing. He was ultimately discharged because the doctors and therapists were seeing no improvement and Tyson was steadily declining. With a dreary prognosis “on the table” and virtually nothing to lose, Dr. Bouboulis ordered a more elaborate Lyme test from a private lab called Igenex in California. Not controlled by the CDC, Igenex is able to test for all strains of lyme including any co-infections. In September, Tyson tested positive for Lyme and two co-infections. Dr. Bouboulis immediately started Tyson on Lyme antibiotics. One of the Lyme medications is a 28 day regimen given intravenously through a central line catheter in Tyson’s chest. At the end of the 28 days (and because the Lyme antibiotics can be so taxing on the organs), Dr. Bouboulis referred us to Dr. Kenneth Liegner and Dr. Richard Horowitz who are renowned pioneers in the study and treatment of Lyme Disease.

At this time, Tyson had a nerve biopsy on his left arm. This would be able to show the relationship between the muscle and the nerve and if there was any indication of a neurological disorder. This test showed nothing, which is consistent with a motor neuron disease. Tyson and I were told to “get our affairs in order” and to “get comfortable”. Trying our absolute best to ignore this prognosis, we met with Dr. Liegner who ran more tests and added more antibiotics to his regimen. Dr. Liegner made it clear to us that Tyson did in fact have chronic Lyme but was not certain that the antibiotics would work. It’s possible that the Lyme bacteria were left in his body long enough to cause irreversible damage.

In December, we met with Dr. Horowitz. He explained to us that the antibiotics would not be enough to heal Tyson. He was in agreement that the motor neurons in his body were dying and said it should be our first priority to address that. It is a theory of many experts that the Lyme could have possibly triggered a motor neuron disease. With that, he then mentioned Dr. Geeta Shroff’s stem cell therapy in India. Dr. Horowitz has sent several patients to her clinic in New Delhi and has had a strong percentage of them benefit from the treatment. He explained that this was our only hope. We immediately contacted Dr. Shroff and upon her request, sent all of the necessary medical documents, tests results, notes, etc. After reviewing with her colleagues, she invited us to her clinic to begin treatment. She has made no guarantees but offers a strong attempt at stopping the progression of this disease and hopefully reversing some of it’s damage. Tyson and I truly cannot ask for more.

Currently, life is not easy for Tyson or for our little family. Tyson is virtually 100% dependant and has been in a wheelchair since the Fall of 2011. He is strong in spirit. Every surgery, test, procedure or set-back has been met with Tyson’s courageous and willful attitude. We struggle from time to time, but we also laugh a great deal, too. Our son, Calvin has just turned 2 and absolutely adores his daddy! They spend quality time every day working on Cal’s golf swing and listening to music together. Calvin has a big heart and loves to help his mommy whenever he can (so long as it’s not during baseball, golf, or basketball practice, of course!)

What has been really remarkable throughout all of this is the overwhelming support we have received from our family and friends. All of the wonderful gestures made to make life easier for us, all of the prayers, laughs and words of encouragement have helped give us the strength to keep strong and keep moving ahead. We are so loved. And so, as we continue on our journey, please keep us in your prayers and know that we are so grateful to have you in our lives. Thank you.

Love,

Annie

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