Dear Dr. Klimas,
I have chronic fatigue syndrome (CFS): Can you help me find a doctor who will work with me?
I live in Syracuse, New York, where medical professionals are conservative and close-minded. The biggest employer is the State University of New York, Upstate Medical Center teaching hospital. It has the only immunologist in Central New York. Dr. Perl has seen me, tested me, and found me not to have any immunological disorder. He never has diagnosed or treated anyone with ME/CFIDS/CFS.
Dr. Perl has referred me specifically to Dr. Jubelt, considered the best neuroimmunologist in the area. However, “The Department [Upstate neurology]” won’t let me schedule an appointment with Dr. Jubelt because (a) he only reports treating MS and post-polio syndrome and (b) Dr. Perl’s referral was for fibromyalgia and CFS.
I no longer have a primary care physician. I experienced a traumatic event and, in the Emergency Department, I knew that I needed to be admitted because the next day there would be hell to pay. I thought my doctor understood enough about CFIDS (chronic fatigue immune deficiency syndrome) to realize that there would be a catastrophic reaction to the stress. Turns out he didn’t, and my attempt to get short-term total care was something he deemed “manipulative” so he kicked me out of his practice.
I was diagnosed with chronic fatigue syndrome around 2001, although I’d certainly had it much longer, likewise fibromyalgia. None of the physicians I saw would even talk about CFS, so I stopped going to doctors and learned by trial and error what would make me better and what would make me worse.
After the death of my fiancé in 1974, I was put on antidepressants and kept on them for the next 26 years. I was a compliant patient. After about fifty hospitalizations for depression, and a dozen suicide attempts, I went off antidepressants and discovered they were the cause of my depression; my immune system couldn’t tolerate them. After withdrawing from antidepressants, I fully recovered from depression, however, I no longer can tolerate any medication for anything.
I now am working with a psychiatrist who has a doctorate in pharmacology to try to discern the cause of the condition. Did a quarter of a century on psychiatric medications damage my immune system so badly that all medications are now intolerable? Is it rebound from antidepressants? Is it immune damage caused by seven years of unmonitored lithium? Is it CFIDS?
I am now 67 years old and have nephrogenic diabetes insipidus and an indwelling catheter, but I also have diabetes mellitus, which I kept under control with diet and exercise for about ten years. Now it is out of control. Every couple days I spike blood sugar levels over 600, but I can’t take insulin because it makes me suicidal.
It is clear to me that stress is what is driving up my glucose but, presumably because of the ME/CFS (myalgic encephalomyelitis), what constitutes stress for me are the simple acts of daily living. Putting on my shoes causes shortness of breath (I have the autoimmune disease of pulmonary fibrosis) and getting ready to go out for a morning appointment pushes my glucose from a fasting 350 up to around 550. I am on a regular diabetic diet however if I go too long without eating (a couple hours beyond usual) then that becomes so stressful that it drives up my glucose and then eating a meal actually lowers my blood sugar by about fifty points.
Last year I was told that there was nothing that could be done to treat my chronic hyperglycemia so I was admitted to the palliative care unit of a nursing home. Because I am intelligent and articulate, and the doctor is committing Medicaid fraud and the administrators are a bunch of morons who know nothing about CFIDS and refuse to learn, I was illegally railroaded back to the hospital. Judicial intervention put me back in the nursing home, which bounced me back to the hospital because they said I didn’t need skilled nursing. This was based on a supervisor with a two-year nursing degree who testified that I was able to transfer from a wheelchair to a car, then she added that I’m psychotic. (To be continued)