参加朱令网络诊疗的美国医生回忆：

http://www.rafink.com/tao.php

The Tao of the Internet

by Robert A. Fink, M. D., F.A.C.S.

On April 11, 1995, I found in my Internet mailbox a message, in "fractured" English, from a young graduate student at Beijing University in China. It was a message of desperation. It concerned the plight of a fellow graduate student in chemistry, a 21-year-old woman who lay in the Intensive Care Unit of the University Hospital of Peking Union Medical College (PUMC). PUMC is a medical school established by the Rockefeller family in the early part of the twentieth century, and, as the model for Abraham Flexner's seminal report on medical education, perhaps, "the most American of non-American medical schools". A reconstruction of the young woman's case history to that date is as below:

In early December, 1994, the patient complained of abdominal pain, cramping, and extremity pain. Extensive tests, including autoimmune studies, thyroid tests, pelvic and abdominal untrasound, skull x-rays, and bone marrow examination were all normal. It was noted that the patient had some abnormalities of her nails, but this was not reported further. She was treated with "traditional Chinese medicine" and was discharged, improved. She subsequently returned to work (in a chemistry lab); we still do not know what chemicals she was working with. An "afterthought" was listed in the report, this a piece of data which was to become critical in the diagnosis of this woman's condition; and that was the fact that, shortly after the onset of the abdominal symptoms on December 8, 1994, the patient's scalp hair fell out, and she "became bald".

After a period of improvement (and some re-growth of hair), the patient returned to the hospital with signs of peripheral neuropathy in the extremities, rapidly progressive disturbances in sensorium (and recurrent alopecia), developed multiple cranial nerve palsies, became comatose, and required a ventilator. She also showed muscular spasms, described as "oculogyric crises", and a tracheostomy was performed. Lumbar puncture and MRI studies of the brain were normal, and studies for viruses, including Lyme Disease, were negative. The patient was treated with "shotgun" antibiotics with no improvement.

At that point, the author corresponded with the sender of the "distress message". I learned that a number of other physicians, including people from the United States, Canada, Great Britain, Singapore, Thailand, Indonesia, and other countries, were also communicating with the student-sender and several other students at the University. The students in China have Internet connections but, (as we later learned), hospitals and physicians do not. We were forced to engage in our later communication with the medical professionals either by facsimile, which is tightly controlled by the Chinese Government; or by sometimes circuitous person-to-person connections. Information transmitted over the Internet to the students often did not reach the medical professionals who were treating the patient. This was due to the complex hierarchy of the Chinese culture, in which accepting information from "students" is almost as alien to Chinese professionals as is dealing with "outsiders". This lack of direct communication has proven to be the most significant negative factor in this equation.

One of the earliest possible diagnoses which came to the mind of the author (and several others of the "outsiders") was that of heavy metal poisoning (the alopecia was the "clue"). We asked if tests had been performed for heavy metals and were assured that such had been done early on. We later discovered that these consisted only of a screen for arsenic!

By March 16, 1995, the patient had been in coma for several weeks; and, despite normal cerebrospinal fluid findings, a diagnosis of Guillain-Barre syndrome was made by the Chinese physicians. By April 12, 1995, the patient's condition had not changed, and a repeat lumbar puncture revealed an elevated protein (248 mg.%) and 6 leukocytes. The impression of Guillain-Barre syndrome was reinforced, despite messages from the "outsiders" that this picture was not consistent with Guillain-Barre.

At about this same time, the author and John W. Aldis, M.D., a physician working in the U. S. State Department, and formerly the Embassy physician in Beijing, conceived of the idea of thallium poisoning, this after Dr. Aldis was sent an article by Rose Miketta, M. D., a physician with Searle Pharmaceutical Company, explaining the neurotoxic effects of thallium. We again suggested that the patient be checked for thallium poisoning. This recommendation was further backed by others, including Dr. David Bullimore at St. James' Hospital in England, and several other p hysicians in the United States. Yet, two weeks passed before the Chinese physicians decided to perform the thallium study. It required an intervention by personnel at the American Embassy in Beijing, and personal contacts between Dr. Aldis and several o f the PUMC doctors (whom Dr. Aldis had known from his days in Beijing), and faxes of articles directly to the hospital, before the test for thallium was finally run. The results were striking. The patient had levels of thallium in blood, urine, cerebrosp inal fluid, hair, and nails which were more than 50 times higher than "normal"! As to the source of the thallium, this remains unknown; but certain laboratory chemicals contain thallium; and, in the Orient, there are several industrial compounds (includi ng several brands of rat poison) which contain thallium (its use is generally outlawed in the western world).

Once the diagnosis was established, the next problem was encountered. Several of us, using the Internet and other online databases, searched the literature for the optimum method of removing thallium from the body. A number of methods were cited; but to xicologists at the New York and Los Angeles Poison Control Centers felt that the most effective treatment was that of administration of the dye Prussian Blue (ferric ferrocyanide) and renal hemodialysis, with addition of potassium chloride. Then came the problem of obtaining the Prussian Blue (a common industrial chemical which was eventually found in China). Underlying this difficulty was the fact that, once again, advice from "outsiders" was suspect by the Chinese.

Finally, after many phone calls, faxes, and other communications (the doctors at PUMC would not deal with the students, who had Internet connections), including the involvement of the patient's family (several of whom were known political figures locally) , the Prussian Blue-hemodialysis regimen was started on May 5, 1995, this almost one month from the initial proposal of the diagnosis of thallium intoxication and some forty days after the patient had lapsed into coma and had become apneic.

I wish that I could report a "happy ending" here. The patient responded rapidly to the treatment, and, within 15 days after the institution of treatment, the patient's thallium levels in blood, urine, and cerebrospinal fluid had decreased to near-zero (a lthough certain other tissues, such as nails and hair, will retain the metal for many weeks and will slowly "leach out"). Sadly, the patient's neurological condition has not improved to a significant degree. She now has been partially weaned from the ve ntilator, and seems to recognize her parents; but she does not as yet have full consciousness, nor does she exhibit much in the way of voluntary or purposeful activity. The long period of brain intoxication in this case appears to be the reason for her l ack of further progress to date and the prognosis for recovery remains guarded.

In recent years, there has been geometric growth in the use of online communication in medicine. The new field of "Telemedicine" is rapidly being advanced in the developed countries, with computer review of case histories, imaging studies (many of which are digital in their native form), and other medical data becoming almost "routine" in making judgments, for example, as to the transport of seriously ill or injured patients to tertiary medical centers. In our own area, patients are transported on a dai ly basis, from small facilities out in the "hinterland" to major urban medical centers. Physicians at outlying hospitals have, through a simple computer/modem connection, access to specialists and centers with advanced technology. The growing use of ISDN (Integrated Services Digital Network) telephone lines has made the transfer of complex information, including full-resolution MRI and CT scans, into a rapid and seamless procedure. The global Internet renders such "connectivity" a relatively inexpensive reality to be enjoyed by health care professionals and patients throughout the world.

Despite this availability of technology (and, in the case of this unfortunate student), however, the finest advances in global communication cannot surmount centuries of tradition and cultural differences. In this case, the cultural differences delayed im plementation of the large volume of collective knowledge which was brought to bear on behalf of a young woman; and sadly in this instance, was probably "too little and too late". As with other problems in this world, it still comes down to the "human fac tor".

As we advance the cause of "Telemedicine" and other interactive technologies, we must never lose sight of the fact that, behind these wonderful machines are the minds and hearts, and prejudices, of the human beings who run them. It is in this "human aren a" where we need to place our educational emphasis, so that the marvels of the modern digital age can be used for the advancement of our species and of the world as a whole.

AUTHOR'S NOTE:

This paper is dedicated to Zhu Lin, the 21-year-old student who is the subject of the case report. Acknowledgement is also gratefully made to John W. Aldis, M. D. (U. S. State Department); Xin Li (telemedicine fellow at UCLA Medical Center); Dr. Ashok Ja in (USC Department of Emergency Medicine and Los Angeles Poison Control Center); Dr. R. Hoffman and his colleagues (New York City Poison Control Center); Dr. David Bullimore (University of Leeds, England); and the myriad other people who labored on behalf of a young woman, critically ill halfway across the world.