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

My Very Own Personal Apocalypse, Part 3

September 16, 2014

Dear friends, family and constant readers,

In Part 1 of this essay, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome and how it changed my life.  In Part 2, I shared with you the journey from becoming ill through the confusing search for a proper diagnosis.  In Part 3, I'll share with you how I was finally and properly diagnosed, and what it took to get it.

When last I left off, my friend and psychiatrist decided to refer me to a colleague who was both a practicing psychiatrist and a physician, believing that with expertize in both mental and physical illnesses he would be able to accurately diagnosis my malady.  This was in the winter of 2002.  I had been ill for approximately 5-6 months at this point.

An appointment with this new doctor was set.  Copies of all of my most recent medical records were sent to him so that he could review what had been done thus far.  His practice was affiliated with the Medical College of Virginia (MCV), which is associated with Virginia Commonwealth University in Richmond, Virginia, and considered one of the best hospitals in the Commonwealth.

I actually had previously met this new doctor.  He was a member of another congregation near my own, River Road United Methodist Church.  He had been a panelist on a congregation-wide discussion we had held on how to cope with the aftermath of the events of September 11th the previous fall.  He was affable and gregarious - very easy to like and trust.  In our first meeting, we reviewed my case together: the sudden onset, the continuing symptoms, medical tests performed to that point and the different diagnoses I had received.  He then suggested a new series of testing for both familiar and unfamiliar diseases.  This testing would occupy the rest of the spring and much of the summer.  

The pattern of this new testing was that I would go wherever he referred me and offer up some vital bodily fluid, permit myself to be poked or prodded or have some various organ or section of my body x-rayed or MIRed.  Then I would wait for the results of a given test.  In every single instance, the result that I would receive was "negative."  Test.  Wait for the result.  Negative.  Another test.  Another period of waiting.  Another negative result.  Etc., so forth and so on...

This left me with a sense of despondency that we would ever find out what was going on with my body.  I

clearly remember one day when I was being tested for multiple allergies at the Department of Rheumatology at MCV.  This doctor was an immunologist, who specialized in allergy-related diseases.  She tested me for various allergies by pricking my back with multiple needles (20 or more) - each a test for a different allergy.  After we waited the appropriate amount of time, she examined my back.  I could tell that something wasn't right by her expression - she had a wrinkled brow, for one thing.  When I asked her what she had found, she told me that the test must have been faulty in my instance because all the needle pricks were showing negative.  She then asked me if she could retest me.  That meant enduring another series of multiple needle pricks.  It wasn't without a degree of pain, but I reluctantly agreed.  She proceeded to test me one more time.  Once again, the results were completely negative.  I showed no indications of being allergic to any of the things for which they tested.  At this, my shoulders slumped and my voice cracked as I asked her, "Does this mean that I'm not really ill?"  She looked at me with a very serious expression and said, "Absolutely not!  It's clear to me that something is making you sick.  But it just may be that whatever that thing is, with our current level of medical technology, we may very well have no way of knowing what it is.  In another decade or so, we may look back at these very same results with new technology and see something obvious that we just can't detect today.  I'm so very sorry."

I returned to the doctor/psychiatrist who was directly my testing. He was completely non-plused. He had expected at least one positive result, but to have none was baffling to him - and to me. He had ruled out any psychiatric disorders as being the cause, so depression was taken off the table. And with all the medical testing, most other diseases had been excluded as well. He expressed a feeling that he had let me down. I assured him that no, he had not. He had done everything I could have asked. I felt that he had been extremely thorough. "So what now?" I asked. After thinking about it, he concluded that we wait for a few weeks or months to see how my illness progresses. If things were no better, he said that we would need to take our exploration to the next level. That would mean going to a research hospital, like Duke or Johns Hopkins. What I needed was a doctor and a medical community that routinely saw the non-routine. Maybe they could help.

So another season passed as I waited on my illness to make itself known. That November, near the first anniversary of becoming ill, my father died suddenly. I left for Kingsport, Tennessee, my hometown, to look after his affairs and see to his funeral. As it turned out, I was designated executor of his estate. That meant more trips to upper east Tennessee. I was overwhelmed - first by my grief of losing Dad, and then my the many responsibilities I had just been given, all the while my illness continued unabated. In fact, the stress I was under only served to exacerbate my symptoms. One night, I was sitting in my parents' kitchen, when I decided to call my wife, Lynn. That day had been particularly rough and I could hardly hold my head up. As I poured out my woes to her, I told her that I had come to a conclusion - it was time to go to a research hospital. I didn't care which one. But I desperately needed to see someone who could help me.

(Dear readers, I had hoped to finish this story in three posts. But as I write this, I realize that it will take one more installment to properly conclude my narrative. I don't like for my blog posts to be too long, so I feel as though I need to break this one up into two separate posts. Thanks for your understanding.)

Peace,

Stephen

My Very Own Personal Apocalypse, Part 2

September 12, 2014

Dear friends, family and constant readers,

In Part 1 of this post, "My Very Own Personal Apocalypse," I shared the story of when I became ill with Chronic Fatigue Syndrome thirteen years ago, and how dramatically it changed the course of my life.  In this second portion, I will share with you the journey from becoming ill to diagnosis - i.e., knowing what exactly was making me so sick.

So I became seriously ill on Saturday, November 10, 2001.  Sometime the following week, I summoned up the strength to go see my doctor.  After examining me, he confirmed what I had first thought - it was just a bad case of the flu.  I was to go home, continue to rest, drink plenty of liquids and take medication for the fever and chills.  He said that if I did that, I would be as right as rain in a few days.  Well, that didn't work out for me so well.  I didn't improve.  I continued to feel as though hit by a wrecking ball.

The next week, I once more drug my weary body to the doctor's office.  The flu would have passed by now, so he was a little more concerned this visit.  He performed some tests and told me to continue to rest and await the results.  Not too long after that, he called with good news.  He had discovered the source of my malaise - I had tested positive for mononucleosis.  At age 41, I had a case of "mono," the dreaded "kissing disease." I knew that my parishioners would have some fun at my expense with this diagnosis.  But I didn't care - at least I knew what was making me so ill.

Gradually, many of my initial symptoms receded and I was able to return to work.  I still didn't feel well, but I was well enough to go about my regular routine.  With sheer determination, I made it through the seasons of Advent and Christmas - the busiest time for a pastor of the church year.  When 2002 arrived, my condition remained the same - feeling as though I still had the "tail end" of the flu.  Though better than I had been in November, my feelings of dis-ease in body and soul troubled me.  I just wasn't myself.  I wasn't getting better.  If what I had was indeed mononucleosis, I should have been better.  What if, I asked myself, it wasn't mono after all.  What if it was something else entirely?  I decided that it was time for a second opinion.

I had all my medical records sent to another physician who was a friend of mine and someone I trusted.  I went to him for a full examination.  He was very thorough.  He went through my medical records and personal history.  He double-checked my recent tests and results.  He re-tested me for mono, and also tested me for some other likely culprits, such as tickborne illnesses like Lyme Disease and Rocky Mountain Spotted Fever.  As for these latter tests, his reasoning was that since I had spent so much time outdoors the past summer and fall, I could have been bitten by a tick infected with one of these illnesses.  That seemed like a reasonable assumption to me, and confirmed my own suspicions about how I might had contracted my illness.

I went back to see this doctor again after the test results had come in.  One interesting finding was that

mono could be ruled out completely.  The test that had been used on me initially was not the most effective and had resulted in a false-positive.  I was negative for tickborne illnesses too.  I tested negative for everything for which he tested me.  From the perspective of the tests, I was the model of good health - yet there I sat in the doctor's office - aching, perspiring, running a low-grade temperature and generally feeling like crap.   So what was up with me?  What was the source of my mystery malady?

Once the doctor had ruled out the usual suspects - and then the not-so-usual suspects (testing me for the presence of cancer, etc.), he told me his conclusion.  He diagnosed me with depression, which was manifesting itself in physical symptoms.  Say what???  I wasn't depressed in the least, in my own opinion.  Sure I was feeling down emotionally about how bad I felt physically.  Surely not, I thought.  But he laid out his case for how the symptoms fit, and there was a personally history of mood disorder in my background.  He cited Occam's Razor - the hypothesis that sometimes the obvious and simple alternatives are most often the correct ones.  Therefore, if we treated the underlying depression, the physical manifestations should relent.

I was not pleased with this diagnosis.  Depression is not how I would have characterized my own life the last few months.  Before my illness, I had been enjoying life and found much satisfaction in it.  Was I in deep denial?  Was I so depressed that I couldn't even recognize it in myself?  I found that hard to believe.  But since he was the doctor - and a friend I trusted - I was willing to go along with this diagnosis and see where it took me.

Over the course of the next few months - late winter into early spring - my symptoms seemed to wax and wane.  Some days I felt closer to normal, but other days I could barely manage myself.  I never really knew what to expect from any given day.  It might begin well, but end with me crashing upon my bed.

I grew extremely frustrated as we worked through this diagnosis of depression.  Even with all the

various medications we were trying, I still was not getting any better on the whole.  So finally, I decided to consult a psychiatrist about this diagnosis.  He, too, was a friend and someone I had seen previously.  Another plus was that he was the son of a pastor himself and knew first-hand the rigours of the pastoral life.  When I met with him and shared the diagnosis that I had been given, he concurred that the physical symptoms of depression did indeed match the illness that I was experiencing.  But, he concluded, simply because they match doesn't necessarily mean that they are one in the same.  He argued that one can be depressed and still have a chronic illness.  One can also be depressed because he or she has a chronic illness.  He felt that before we could safely conclude that I was suffering from the physical manifestations of depression, we should explore my illness further to rule out other, more remote and exotic possibilities.  So he referred me to a colleague who was both a practicing psychiatrist and a physician.  If anyone could get to the root of my illness, he could!

To be concluded in, "My Very Own Personal Apocalypse, Part 3."

Cheers,

Stephen