May 16, 2021
This is the story of my generous and kind friend David. Ever since 1984 he has suffered from severe neuropathic pain. His survival over the last four decades is astounding.
In 1972, while working for Shell Chemical Company which was contracted by the U.S. Army to make pesticides and other neurotoxic chemicals at the Rocky Mountain Arsenal in Colorado, a pipe burst above his head and sprayed a liquid all over him, turning his chemically sensitive coveralls from orange to blue from head to foot. He was rushed outside the facility, stripped and scrubbed with soap and water. He was frightened and never went back to work there after that accident.
In 1991, Professor of Immunology and Microbiology at Tel Aviv University Prof. Asher Frensdorff, after examining David and running tests, told him that he had most likely been exposed to toxic chemicals. He concluded that the symptoms David experienced “could very well be of auto-immune origin and may possibly have been triggered by exposure to neuro-toxins.” David eventually learned he had multi-system damage, located particularly in the nerve system, skin, brain and kidneys.
Over the decades, on top of the constant pain he suffered, his body has endured countless side effects and damage from drugs, many which were prescribed to treat misdiagnoses. The most consequential of the misdiagnoses include Bipolar Schizophrenia, for which he was given Lithium and other medications that further damaged his kidneys, Neurosyphilis of the brain, Fibromyalgia, Tuberculosis, and Lupus, all of which have since been ruled out but not before powerful and debilitating drugs exacerbated his condition. In 2005, his skin specialist had done all she could to try to solve the mystery of his illness, even to the extent of organizing a gathering of 200 skin specialists at the University of Southern California, at which David was the subject. All concluded they had never seen such a case before. But Dr. Mariam Quinn then came to the conclusion he had Lupus, which he was treated for. But that diagnosis turned out to be wrong because the sun was helping rather than making him more sick.
Eventually David’s condition received a name: Autoimmune disease. David has had more than 30 kidney stones removed, and he has brain and nervous system damage, cysts, intense pain in his extremities, rashes and sores all over his body accompanied by unbearable itching, macular degeneration in both eyes (at an early age, likely a side effect from a drug), intense fatigue and weakness — among others. He’s had 6 operations to remove several different types of cancer.
Over the course of almost 30 years, the severe neuropathic pain continued until eventually he received some moderately effective treatment after tests revealed his body was extremely toxic, with abnormal levels of lead, tin and other toxins. He received chelation therapies which seemed to be moderately effective. For 3 days every month for several years, he was given IVIg Gamma treatment to help with his nerve pain, which offered some relief. But he had to cease the treatment because Multiple Myeloma was developing in his bones as a side effect of the treatment.
Twenty some years ago David was told his dental fillings in his teeth were causing many of his health issues so all but three of his teeth were removed and he was given a few tooth implants. However, near the beginning of the teeth restoration process a law changed and his state health insurance no longer covered his teeth. David still struggles with choking on food he’s not able to chew, having not been able to afford the surgeries needed to finish the job.
More recently, in 2018 during a routine cystoscopy, David was contaminated by un-sanitized equipment, which led to him contracting three severe viruses. To treat these viruses David received several PICC line procedures which damaged his large veins and heart so significantly that it led to him having 5 heart attacks and 3 heart operations within a 2-year period. At least one virus persists and now threatens to require removal of his prostate.
Today, David’s health continues to deteriorate with regular night sweats, fevers, body pains, and decreased lung function requiring him to use an oxygen machine at all times. These latest health setbacks are especially frustrating for him considering he’s been suffering for decades from either the symptoms of his illness or the debilitating side effects of perplexed doctors’ treatment efforts. He describes the pain sensation he has dealt with for decades and deals with constantly, every day, in varying degrees, as effecting every inch of his body. Or in his words, “like I’ve been run over by a truck, or like someone beat every inch of me with a baseball bat.”
When I first met David a dozen years ago, I remember him telling me it felt like razor blades cutting him underneath his skin. Yet over the years, his doctors’ tests couldn’t account for the cause. His skin specialist, Dr. Denenholz coined his skin condition “David Tsuriel disease,” not knowing exactly what it is. David told me about the six years he spent in psych hospital, paralyzed due to side effects from anti-psychotic medication he received from doctors who assumed his pain sensations were caused by mental illness. They weren’t. The damage to his brain is not psychological, but it does cause insomnia and depression which is situationally exacerbated by his battle with chronic neuropathic pain.
David’s life is currently in great jeopardy. His decades long battle with pain and suffering is intolerable and unlivable. He regularly wrestles with suicidal desires to end his decades long suffering and has made attempts to take his life on a few occasions when the pain was so severe. For 37 years, he has dealt with some of the most harmful misdiagnoses and incorrect treatments most humans couldn’t even bear to imagine. He desperately needs a 24-hour in-home caregiver, for which he can’t afford to pay for and he’s long struggled to gain approval for, considering his illnesses have often been nameless. He tells me his greatest wish is that a group of doctors might be assembled to collectively study his condition and together, hopefully, they can come up with working treatments. And if there are none that exist he’d like at least for his story to be told for any others who may have experienced similar suffering. The health conditions of Gulf War Syndrome victims seem to be close to David’s experience. Yet it’s not an exact fit and he’s certainly not eligible, as a civilian who worked for the privately contracted Shell Chemical Company, for veteran’s health care or services.
Despite the living hell he’s endured, to know David on his good days, when he manages to get a good night’s rest and his ailments are somewhat manageable, is to know a man who loves to joke and laugh, who is hard working and self sustaining, who is extremely generous and kind to others, and whose enduring spirit is a quality we could all learn from.
(Part of my goal in documenting David’s story is to allow him to give it to every new doctor he sees in the hopes they can better treat him with a more complete understanding of his body’s history, not relying merely on the test results of the week. — Dennis Hamm)