My Very Own Personal Apocalypse: Conclusion

September 17, 2014

Dear patient readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became sick with a mysterious illness and how it changed my life.  In Part 2 and Part 3, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In this concluding post, I describe exactly I came to be diagnosed with Chronic Fatigue Syndrome.

I came back to Richmond in late November 2002 from yet another trip to Kingsport, Tennessee, overseeing my father's estate.  Because of the stress of my father's death and being appointed executor of his estate, I was extremely ill and knew that I had to find a specialist who could finally help me.  I sat at my desk in my home office combing through all my own research that I had been collecting for the past year.  I had newspaper clippings and internet articles about anything that might tangentially relate to my illness or to the symptoms I was experiencing.  I was looking for a connection that might help me know who to contact at Johns Hopkins or Duke.  I remember pulling a series of articles on the anthrax attacks from September and October of 2001.  If you will recall, following the events of 9/11, a series of anthrax-laced letters were sent to several prominent people.  The letters were processed through a post office sorting center in Washington, D.C.  As a result of the attack, five people were killed and 17 others were infected with anthrax.  The Washington Post covered the story and the effects on the victims both initially when it happened, but also through follow-up stories over the course of the year.  My main interest in this terrible tragedy was the striking similarities between many of my symptoms and those of the anthrax victims.  In the fall of 2002, there were a series of stories in The Washington Post about how the survivors of the attack were not getting well.  Their symptoms lingered and even worsened.  I wondered if there might be a connection to my illness.

While it may now seem somewhat paranoid, I felt at the time that I couldn't rule any possibility out.  In the

Anthrax spores

next day or so, I began to research whether it was even remotely possible for me to have been infected with anthrax spores.  I hadn't been to D.C. in some time, so proximity was ruled out.  I didn't work at the post office sorting center, either.  Could it have been possible that I had received mail contaminated with anthrax, I wondered to myself.  I remember the panic of the news media in the fall of 2001.  There was talk that the anthrax may have been militarized (it had not) and whether even a few spores could infect a person.  However unlikely this scenario, I had to know whether there was any possibility that I had been infected.  I went to see the post master at our local post office.  I explained my situation in brief and then asked him whether any of the mail which had been sorted in D.C. could have come to Richmond - and more specifically, to my mailbox.  He said that it was certainly possible.  His post office routinely received mail from the affected facility, and mail was sent out from that facility before the anthrax was detected.  But, he concluded, he felt it highly unlikely that scenario happened.  Possible, but not probable.

I returned to my research at home, reading the newspaper articles more closely.  A particular doctor was mentioned in a number of the articles.  One article, in particular, stood out.  This doctor had treated a postal worker who showed every symptom of anthrax poisoning, but all the tests read negative for anthrax infection.  He clearly was a victim too, but no test could conclusively prove it.  This doctor personally treated two of the anthrax patients and was consulted in many of the other victims' cases, becoming somewhat of an expert on the illness following the attacks.  "I need to know more about this doctor," I determined.  Through an internet search I discovered that he was a professor of internal medicine at Johns Hopkins and head of family medicine at Sinai Hospital in Baltimore, Maryland.  Here was the connection I had been looking for - this was the doctor I needed to see.  He teaches at Johns Hopkins.  He works with patients who have perplexing illnesses.  This was my guy!

I called his office the next day, explained my situation and asked for an appointment.  I was very nervous about doing this.  After all, he is this important and well-known physician, and I'm just another patient asking for a moment of his time.  Much to my surprise, I was given an appointment during the first week of December.  I was elated that he would be able to see me in such a short time frame.  His office manager said that I would need to do some work to prepare for my visit.  I would need to gather up as many of my medical records from as far back in my life as I could, as well as test results, x-rays, MRIs, etc.  I needed to have them mailed directly to him so that he would have time before my consultation to build a comprehensive medical history and, in general, become familiar with my case.  Over the next couple of days, I did as instructed.  I even contacted the pediatrician who had seen me as a child.  Those were the only records that I could not get.  They had been destroyed when a basement file room flooded.  But other than that, he would have a very complete overview of my medical history from young adulthood on.

On the appointed day in early December 2002, Lynn and I drove from our home in Richmond, Virginia to Sinai Hospital in Baltimore, Maryland.  It took three hours to get there.  When we arrived, we didn't have to wait very long before the nurse escorted Lynn and me back to an examination room.  She told us that the doctor was still reviewing all the records that I had sent and would be with us shortly.  Lynn could see how nervous I was.  I was worried that once again nothing would be found.  I was equally nervous that something serious would indeed be found.  I didn't like either option, but I knew deep within my soul that I needed to come away from that visit with a diagnosis, a name for this thing which had invaded and disrupted my life so completely.  I wanted to know the enemy.

Finally, the doctor came in.  He was just a couple of years younger than me.  He engaged us immediately.  The first thing he said was that I didn't have anthrax.  Though I had never been tested for it, he could tell from looking at my recent lung x-ray and blood tests that anthrax could safely be ruled out.  He proceeded to tell me that after reviewing my records, we could rule out quite a number of diseases and disorders.  In fact, it was his conclusion that all of my extensive testing left him with only one logical conclusion - I had what is most commonly referred to as Chronic Fatigue Syndrome.  It was known by other names, but this was the most familiar usage in the U.S.  This diagnosis, he told us, did not have a medical test to detect it.  A diagnosis could only be made when all other possibilities were excluded - which is what my previous testing had accomplished.

Chronic Fatigue Syndrome, he told us, has no known cause nor does it have a cure.  It is like an autoimmune disease in that something triggers the body's immune system to react and fight a perceived disease or infection - but one that cannot be found.  Whether it is invisible to current medical technology or simply infects the body and quickly moves on is unknown.  The key thing is that the body continues to react and literally attacks itself, like say, Lupus.  But unlike a disease such as Lupus, Chronic Fatigue does not damage the body.  In other words, I wouldn't die from it.

"How do we treat it then," I asked.  He answered that there was no treatment for the illness itself per se, but you could treat the symptoms to alleviate the way it manifests itself.  He then went on to suggest a number of medications.  He said that I would need to work with my physician and psychiatrist in Richmond to discover which medicine regimen would be best for me personally.  No two Chronic Fatigue patients are exactly alike, and each must be treated individually in a way that is unique to them.

"How long will I have this illness," I asked.  He said that there was no way to determine that.  Some percentage of patients do recover - maybe a third.  Another third may spend years with the illness waxing and waning before there is improvement.  And then there is about a third of people who do not recover and with whom the condition only worsens.  In his experience he told us that if you do not recover in the first five years after onset, then it may take as long as 20 years for the disease to burn itself out.  I was stunned!  20 years?  I'd be 62 by that time.  I'll be nearing retirement, I thought.  So what about work, I wondered aloud.  Could I still keep working.  Sure, he said, if I felt up to it.  I should try to stay as active as possible while I can because there may come a day when that is no longer an option.

By the time my appointment was over, he had spent nearly two hours with us.  He was extremely thorough.  He offered some wise counsel about how best to live with this condition.  With wet eyes, I thanked him.  He had given me something that no one else had been able to give - a name.  I now knew what my disease was.  I knew my enemy's name.  I was determined that day, and every day since, to fight this enemy and not give one inch of ground.  And so we have fought for 13 years in a relentless war over what would determine the course and content of my life.  I haven't given up yet, nor do I intend to.

(Well readers, this concludes my story of how I became ill and the process I went through to be diagnosed.  While a year may seem like a long time to find out what is making you sick, I know too many others who have this same disease and have gone years upon years before being properly diagnosed.  I was fortunate.  I had good doctors who were open to my own involvement in my diagnosis.  For the most part, they didn't give up on me, nor I them.  I was persistent.  One lesson that I have learned from this process is that one cannot be passive in his or her own health care management.  You must be proactive and work as a partner with your physician to fix what ails you.)

Peace,

Stephen