Trial By Error: How Professor Lubet’s Nightmare Began…

By David Tuller, DrPH

A few years ago, my friend and colleague Steven Lubet, a law professor and scholar at Northwestern University, wrote the following account of the start of his struggle with what was then largely called chronic fatigue syndrome. While his story does not directly relate to current events, Steve’s frustrations in his effort to seek a proper diagnosis will likely resonate with many in our pandemic era.

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Fatigue: An Adventure Story

There are relatively few certainties in life, but you can be pretty sure that nobody wants to have West Nile virus – a nasty, mosquito-borne disease that can kill you if your immune system is on the fritz. Even its “moderate” strain  could result in symptoms like mine – unrelenting headaches, body aches, nausea, fever, and the sort of staggering neurological problems that makes it tough to wash the dishes and impossible to walk the dog.  And by the way, there are no treatments for it.  Yet there I was in late 2006, fretting by the phone for hours and checking my email every fifteen minutes, in the hope that my doctor would confirm that I was indeed a West Nile sufferer. 

It’s not that I wanted to be sick; I already was sick.  Nor am I a masochist or a hypochondriac.  But after about ten weeks of nameless misery,  I was getting desperate for a diagnosis. West Nile was preferable to some of the leading alternatives, as explained when I visited my doctor, including brain abscesses and various tumors.  So I hadn’t wasted any time getting to the HMO’s lab when my doctor ordered a blood culture.  In answer to my anxious question, the technician told me the result would be back in “five to seven business days.”

Showing uncharacteristic – and if I may take a moment to compliment myself, admirable –  restraint, I waited until the afternoon of the eighth day to contact the doctor’s office, only to be told that the lab had sent my blood specimen to the Mayo Clinic, and that it would therefore take ten business days to get an answer. Since it was already Thursday, that meant I’d have to wait until at least Monday before I could expect to learn anything.

At this point I should explain that my medical provider was an early adopter of what they then called a “platinum” communication system, presumably because it exceeded the gold standard.  In theory, I could use my login and password to access a webpage where, again in theory, my doctor would quickly post my test results and, still in theory, mind you, I could message him for an update and advice.  Like so many theories – such as Hillary Clinton’s “Blue Wall” campaign strategy in Wisconsin and Michigan, or British Petroleum’s approach to offshore drilling– this one happened to be a little weak in the execution.  Alas, it depended entirely on my doctor’s initiative.  To make it work, he had to notice whether test results had been received, and then he had to respond to my inquiries with something resembling accurate information.

As you have probably guessed, Monday came and went in silence. On Tuesday I sent a simple but unambiguous message to my doc: “Any word from Mayo?”  In return, I received from him the following: “Was sent to Department of Public Health and is still not back.  Most likely this week.”  Now, if you haven’t been keeping track, that was the third answer I’d gotten to my questions about the test result, each one identifying a different lab while providing successively regressing result dates, the latest of which potentially extended for another four business days.  As a connoisseur of irony, I suppose I ought to have appreciated the evident uselessness of the trumpeted platinum website.  But as a patient, I was just getting fed up.

Getting the laboratory run-around

My next message to the doctor was a little more pointed, setting out the history of misinformation about the labs and expressing my doubts that anyone truly knew where my blood specimen was culturing, much less when, if ever, we’d know about the West Nile test.  I asked him, quite reasonably in my opinion, to investigate the situation and get back to me.

He didn’t seem to see it that way.  I guess he figured his job was limited to interpreting the results, not helping me track them down.  “I have relayed info to you as it has been relayed to me,” he replied, adding, “I recommend you speak to my nurse regarding calling the lab for further assistance.”

There I was, worrying about whether I had contracted an untreatable and conceivably fatal arbovirus while my doctor wasn’t even willing to speak to his own nurse about it.  Was that the new model of managed care, I wondered, or perhaps a sly effort to bring some free market discipline into the provision of medical services?  If it becomes sufficiently inconvenient to find out about test results, maybe patients won’t demand so many of them.

Whatever the reason, I didn’t have much choice.  I started calling around to nurses and lab managers and, after following far too many false leads and dropping a fair number of barely veiled hints about the potential for litigation, I finally located my errant blood specimen.  Although not exactly.  When I successfully convinced a lab manager to do some research, I learned that the sample had “probably” been sent to the County Health Department, but only as part of an anonymous West Nile monitoring program and not with any expectation that the county would then report the test result back to my doctor.  I have to say “probably,” because it also appeared that the County Health Department had stopped answering its telephone and did not have an email address, so my own HMO could not confirm that any of that had truly happened.  But they thought so.

The lab manager, of course, wanted to wait another five to seven business days, just to see if the County Health Department would eventually reply.  After all, she patiently informed me, West Nile Virus is incurable and brain tumors tend to grow very slowly, so it wasn’t as though anyone was going to do anything right away no matter how the test came out. 

This did not sit well with me. I must admit that I become rather intolerant of incompetence when a medical condition causes me to feel as though a dull spike has been driven deeply through my left eye, piercing my prefrontal cortex at precisely the point where coherence meets cognition, and when some technician in a white jacket is preventing me from obtaining even the most rudimentary information about the cause and possible cure for my ailment. 

In other words, I was plenty damn sick, but not too sick to cause trouble if I didn’t get my way.  I won’t detail everything I said and did to explain exactly how unhappy life in the lab would become unless they figured out a solution pronto.  Some profanity may have been involved, but only in the form of a present participle.  Let’s just say that the manager reluctantly agreed to start from square one and, better yet, to ship a new blood sample overnight to the Mayo Clinic (yes, really this time) and to authorize a special and expensive test that provided results in a single day, business or otherwise, but only if I could get there before closing time.    

I was at the lab within the hour with my sleeve rolled up and the median cubital vein in my left inner elbow pulsing wildly in anticipation of an urgent phlebotomy.  We hurried through the preliminaries – some well-placed swabbing followed by a little gentle binding – and then we got down to serious business.  It was quick but meaningful.  The intensity of the encounter left me exhausted, wanting only to turn over and go to sleep – a venipuncture matinee does that to me every time – but I stayed awake long enough to watch them tape my name onto the test tube and seal it in an envelope, making sure that they gave me the tracking number.

So that is the true and unembellished story of how I came to be sitting next to my telephone one autumn day, hoping that I had tested positive for West Nile Virus–which is, after all, an exotic-sounding illness of the sort that might  afflict an intrepid explorer or a humanitarian relief worker (although it is in fact spread domestically by diseased crows with no known connection to East Africa).  Well, the test was negative, although I don’t actually remember how the doctor gave me the news.  As it turned out, however, my malady was less romantic though equally debilitating and mysterious.

A few months later, once a series of MRIs had ruled out abscesses, tumors, and every other respectable medical condition, I was informed that I had chronic fatigue syndrome. As I would soon learn, CFS alternately baffled or bored most physicians, who could do nothing for me and were not much interested in trying. I was entering an adventure in medical frustration from which I have yet to emerge.

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Comments on this entry are closed.

  • Kati 14 October 2020, 10:33 pm

    I am so very sorry this happened to you too. Early illness storytelling is harrowing, frustrating and traumatic. It’s been almost 12 years for me, and as my sick-versary is around the corner, the replay version is always painful and grief-stricken. As COVID is doing what is does and we are welcoming newcomers in the abyss, i truly hope that researchers will pay attention, and decision makers will fund research. Best regards.

  • CT 15 October 2020, 2:31 am

    I wonder what percentage of patients wish they had a ‘romantic’ disease or condition that doctors swoon over instead of the one that they’ve been saddled with. Someone should do a study to find out.

  • Elizabeth Edwards 21 October 2020, 7:53 am

    CT: Re the relative desirability of having (in my case severe) ME/CFS versus other medical conditions, I remember when I hit that ‘stage of grieving’ where you start bargaining with God. The deal I was willing to offer was that I’d give up an arm or a leg, if in return I would be completely cured of the ME/CFS.
    That just seemed so much simpler a situation to manage, just a straightforward and quite interesting physical and logistical challenge with no brain fog, weakness and exhaustion hampering every effort. Even better, doctors and potential care-givers/helpers wouldn’t be likely to disbelieve, patronise or laugh at you rather than try to help. As a bonus, you might even occasionally score a little kindness and understanding re the enormity of the difficulties you face every day.