Mea (non) Culpa
Now that my "index of suspicion" has been raised, I sometimes feel anguish over missed cases of TBD, though I know full well I am not blameworthy. I think of the bewildered man whom I saw as an intern 40 years ago. Because of normal labwork he was accused by his attending of creating low grade fevers by heating the thermometer on a light bulb.
I recall the child slowly going brain dead while I was instructed by my residency supervisors that she was schizophrenic because all her evaluations were otherwise normal. More recently, I recall the euphoric bird-watcher whose sexually uninhibited delusional mania and on-off paranoid dementia were misdiagnosed as Alzheimers over my protests as one neurologist after the other decried the possibility of the Lyme which by them I was able to recognize clinically. He died, as did most of the others.
I think of the young girl with the severe Crohns, medicating herself with cocaine and heroin to quell the pain yet feeding a growing addiction. I didn't know much of the Lyme connection then. Most of all I think about the anguished family of a man who I had treated for a depression 10 years before. They begged me, after a gruesome event just several years ago, "Why would he do such a thing? What could make someone like my father commit a heinous act? There must be an answer!" Now I recall that he had excruciating pain in his shoulder which the specialists could not explain and other symptoms of TBD as did all of these patients.
I wonder, should I open this up with any of these families? How can I? How can I not? Where does my responsibility lie? I have no proof and the world of experts is against me. On the other hand, I am the only one who has any clue as to what the real culprit likely is. Is it fair for me to withhold ideas and information which may save the sanity of another generation or two who have found other reasons to explain these dire events, for example, blaming themselves? What do I owe them, what do I owe myself? There are legal aspects to these answers. Like Hamlet, I hesitate. Perhaps so do all the newly Lyme literate, focusing on the living and on those in need of immediate help.
It would be good to know there are other doctors wondering about these same things.