Another Monday morning had come, and Willem turned to face the clock, reaching for the alarm. Almost 11 hours of sleep, yet he felt as if he had just gone to bed. As he swung his legs over the side, he heard his wife of 10 years, Joyce, in the kitchen. “I’m up” he called out to her. “Did I wake you?” came the reply, “I was trying to be quiet”. “No” he said. It was time to get up. No matter how early he went to bed, no matter how much sleep he got, Willem was always tired. But lately he was more than tired. Lately he was exhausted.
He had met Joyce during his freshman year of college at the University of Maryland. She was standing behind him in line at the campus bookstore and when she dropped her pen, they both bent over to retrieve it. Their heads had bumped, and she stepped back, looked at him, and smiled. She thanked him as she rubbed her forehead. “Like the Three Stooges” he commented, his face turning red, immediately aware of just how hokey that sounded. To his great relief, she smiled and said, “My name is Joyce. Is this your first semester here?” Willem replied it was, and then told her his name. “That’s an unusual name” she responded. “I like it.”
This made him smile, and he realized he was blushing which made him blush even more. And then she laughed again. He loved her laugh. It seemed to come from a much older person. Joyce was a sophomore, and at almost 20, a full year and a half older. The two became friends, and eventually more. Joyce was completing a program in pre-law; Willem studied Health Care Management. They didn’t share any classes, but saw each other at lunch and after classes.
The day Joyce graduated, Willem sat in the stands feeling pride, envy, and if he were honest, a great deal of trepidation. He had tried to complete his program in 3 years to graduate with Joyce, but his health had begun to deteriorate at the beginning of last year, and he was forced to slow his pace. Now, as he sat here among her family and friends he was faced with being without her for the first time since coming to university. They had arranged to spend vacations and breaks together, first going to her parent’s home in Baltimore, and then to his family farm in Hillsborough, New Jersey. Now, when he returned home for summer, he would be going alone. The thought filled him with anxiety.
That evening as he sat with their families at the restaurant celebrating her graduation he could not hide his unhappiness. He did his best to smile and be happy for her, but he knew he was less than convincing. She had done well at college. Very well in fact and had finished third in her class. Now she had her choice of Law Schools to choose from. Several Colleges had sent her application packets, some on the West Coast. Sure, they would keep in touch; they would try to maintain a long–distance relationship. She loved him, he knew, but distance is hard to overcome. As he sat, feeling miserable and guilty for feeling miserable, she stood up and tapped her glass to get everyone’s attention.
Willem realized after she tapped his shoulder that she was about to speak. He had been so focused on his own misery that he had ignored her completely. This was her night, and he should just put aside his own feelings. Joyce began to speak. “As you know, it is been my dream since high school to become an attorney and to work in environmental law. I have done okay here at school, and my grades have allowed me to get into just about any law program I could want.” Willem knew that she had talked about law school for the last year and a half; he also knew what was coming next. She would announce the college that she would attend. And he would be left here alone. Alone to miss her for his last year of classes. He hated the very thought of it. She continued, “you also know that the past three years have been amazing for me and that two years ago, someone incredible came into my life. Someone I could not possibly think about being without” and she smiled at Willem, who was now doing his best to appear happy. “So I have decided to accept an invitation from the University of Baltimore to study law right here”. Everyone applauded, except Willem. And then it hit him. She wasn’t going anywhere. He didn’t even attempt to hide his joy, as he stood and embraced her.
After Willem finished his program, he had taken a position with the local public health authority, and Joyce had finished her education. The couple had relocated to upstate New Jersey, where Joyce had found a challenging and rewarding career working for an environmental action group and Willem, now well experienced in public health program administration, easily found a position working for a non-profit. The couple was happy, at least until Willem’s symptoms had begun. At first, it was the family doctor’s opinion that he was simply overdoing it. At 30, he was a busy professional, and the couple had managed to start a small farm, which Willem had taken to love as if it were a child. He poured enormous energy into it. Perhaps the daily chore of feeding the animals and taking care of the place was more than he could manage alone. He had thought of hiring someone, maybe a local teenager to help out. But his father was still active at 62, and manages just fine. He must be getting soft.
Then the arthritis began to impair his ability to care for the animals, and Willem hired two local boys to help out. His doctor, Dr. Smith, or “Old Doc Smith” as the locals called him, assumed that William had an early form of rheumatoid arthritis. The fact that Willem had never had rheumatic fever didn’t seem to complicate things. Willem was not a doctor, and he trusted his physician. Doc Smith, a man already in his 70s, had delivered babies and attended deathbeds for nearly half a century. He had seen it all, as Doc would say “the coming into this world and the leaving of it”, and he was not afraid to tell you that he had. Doc Smith had informed Willem that what he had was arthritis. Plain and simple. Take some aspirin and do the best you can.
Over the next few months the arthritis continued to worsen. It seemed as if his muscles, and at times, even his skin throbbed with pain. At Joyce’s urging, Willem made an appointment with Doc Smith and drove the 12 miles to town. He sat listening to Docs fishing stories, and then Doc asked how the farm was doing. Willem explained that he couldn’t do much anymore, and relied on the two boys he had hired. “Well what brings you to see me today” he asked. Willem explained his latest aches and pains, and the doctor checked his blood pressure, listened to his heart and lungs, even tested his reflexes. Nothing seemed out of the ordinary. Willem hated to ask, but thought it could not hurt. “Maybe I could benefit from a visit to the medical center?” he asked. Doc Smith left the room, and after about five minutes returned. “Can you get down to hospital on Friday” he asked. “I should be able to” Willem said. “They have a fellow there, he’s an internist. He might be able to do something for you. I think he will tell you the same thing I have been telling you.” Doc gave Willem the doctor’s name and the appointment time, and he thanked the doctor and left.
Willem had always been more concerned about how other people felt, even if that meant ignoring his own feelings. That was a lesson he had learned the night that Joyce graduated. He had been so wrapped up in his own emotions that he almost missed her announcement. Since that night, he had been acutely aware of how others felt. Perhaps Doc was right. Willem just had a low pain threshold. When he arrived home and informed Joyce of his visit with Doc, she picked up the phone and called her office. “Clear my Friday calendar” she said. Then, turning to Willem, “I’ll be going with you. We have to get this figured out, and if it means driving to the city then that’s what we’ll do.”
The hospital was an imposing ark of a building. Some parts of it built in the late 1800s. The old parts were now interconnected with more modern wings and additions. An elevator took Joyce and Willem to the fourth floor, where they were met b a patient representative, a young woman all of 21, who handed them a clipboard of papers and a pen and ask them to have a seat in the waiting room. After completing the rather lengthy form, filling in the insurance information, current medications both prescribed and over-the-counter, vitamins, etc., Joyce walked to the window and handed the form to the woman and was told have a seat and the doctor would be with them soon.
After about five minutes, a nurse came to the door and called Willem’s name. He and Joyce stood and followed the nurse into a small room. After a few more minutes, the doctor came in, introduced himself as Dr. Tanaka, and asked what had brought them in. After listening to Willem explain the symptoms, Dr. Tanaka listened to his heart, checked his blood pressure, manipulated his knees, and shoulders, and sat down in a chair. “I’m not certain, but your symptoms indicate arthritis.” Willem asked if this could explain his muscle aches, and Dr. Tanaka said it was unusual, but possible. At this point, Joyce spoke up. She told the doctor that Willem was exhausted all the time. He slept but could not get real rest. His arms and legs ached constantly. She finished by saying that they had not “driven all the way to the city to be sent home without any real answers.” Dr. Tanaka seemed surprised at her outburst, but was very sympathetic.
Dr. Tanaka explained that if Willem did not have arthritis, the first step would be to rule out the more likely candidate conditions, and he may ask Willem to have a sleep study.
As an internist, Dr. Tanaka had worked with middle-aged and elderly patients since leaving medical school, and had recently investigated a number of studies on chronic fatigue syndrome. This certainly sounded like CFS; unfortunately there were no diagnostic test for chronic fatigue syndrome. Blood work could be used to rule out other possibilities, and that was as good a place to start as any. Joyce explained that they both had excellent medical coverage. Dr. Tanaka nodded, and said, “we might as well rule out the more likely candidates.” He pulled open a drawer, and took out a sheet marked “LAB.” He began checking boxes next to descriptions of the tests. Adrenal function, Hepatic function, A-1 C, B12 level, Hematocrit, Iron, Potassium, Calcium levels. He stopped for a moment, and then circled the words ‘CHEM 12’. As he reviewed the form, he added one final check to the box next to ‘Alpha-fetoprotein.’
“Take this to the lab on Level-1. I will have the results in about a week.” In the meantime, Dr. Tanaka advised Willem to avoid alcohol, and to get more sleep. The following Wednesday afternoon, Dr. Tanaka called Willem at home. He was out back in the fields, but Joyce could take a message. Dr. Tanaka told her he almost all the test results, and they were all normal. He told Joyce he had suspected chronic fatigue syndrome, and he considered that Willem’s B12 level was too low or possibly an adrenal abnormality. The final thought he had was liver cancer, but the Alpha-fetoprotein test indicated no abnormality. Although the test is generally done for pregnant women to engage fetal health, it is also a consistent biomarker for some forms of cancer in men, particularly hepatic and lymphoma. Although the test did not rule out malignancy 100%, it shifted the focus away from cancer. Joyce asked what the next step would be? The phone went silent for a moment, and Dr. Tanaka’s voice came back on the line, and he said, “Do the best you can with the pain, try to get some rest and avoid alcohol.”
As Dr. Tanka hung up the phone, he looked again at the lab results. Normal. All normal. Boringly, annoyingly normal. If not arthritis then what? Sure, chronic fatigue syndrome was a diagnosis, but it really didn’t say much other then the person was chronically fatigued. The literature said little about cause or effective treatments.
Joyce grew more concerned about Willem daily. She feared he would just give up. Was suffering from clinical depression? No one had suggested this, but Willem had told her recently of feeling “down.” She burst into tears, asking no one “why is this happening to us”? Later, sitting at the kitchen table trying to figure out their next step, Willem suddenly thought aloud “At the office we have a new director of programs. To hear the program managers talk, he is some sort of medical genius. Maybe he might have some ideas about where to go from here?” Joyce thought for a moment. “Why would a program director be of any help?” “He is an epidemiologist” Willem said. Joyce asked, “Do you think you have an infection of some kind?” Willem smiled, and said, “They do all sorts of health science stuff…not just infections.” What was there to lose?
The next morning, Willem reached for the phone on his desk, and dialed the extension for the Director of Health Programs, and Tim Flood, PhD. answered. Willem had not yet met Dr. Flood, and as he introduced himself, he inquired as to if Dr. Flood was free at anytime during the next few days. When asked, Willem said only that it was a “personal matter” and Dr. Flood said he would be available that afternoon. Tim Flood had recently moved to the area from New York City where he worked for the Division of Consultative and Diagnostic Medicine at one of the larger medical centers. Having worked primarily as a back up to the diagnostics director and the person who dealt with the CDC when necessary, he had been the “go-to guy” for the weird, the odd, and the unexplainable ailments that were referred to the department all too often.
As Willem tried to stay on track, the exhaustion was overwhelming him. Having lost track of time, Willem was surprised to see a man in a suit and tie standing in his doorway. “Hello” said Dr. Flood. “You must be Willem.” After a brief handshake, Willem offered Dr. Flood a chair. “How can I be of assistance?” He asked. After a brief explanation of his symptoms, and of the visits to doctors, including the latest advice of clinical depression and the suggestion to just “take aspirin and get some rest” Dr. Flood could see Willem was at his wits end. “Biostatistically” he began, “there are a number of conditions that could present like this.” Willem’s chin dropped. “But there are methods of narrowing it down. A lot.” Let’s set a time to sit down and discus this in detail if you want. It can’t hurt.” Willem thanked Dr. Flood and suggested dinner.
He had been on vacation the week that Dr. Flood had started, and they had not spoken aside from today. “That sounds fine” Dr. Flood responded. I look forward to hearing from you. Willem explained the short meeting with Dr. Flood to Joyce, who suggested they not get their hopes up. They had been to doctors and even specialists, but so far, none were very helpful. Maybe Willem was depressed after all. When she looked up the symptoms on the web, they seemed to fit. What else could it be? Surely the doctors would have found something if there was something to find. This last thought she kept to herself.
It was exactly two minutes to seven when a Joyce heard a knock at the front door, and introduced herself to Tim Flood. After a brief conversation of his previous career in NYC, and the reasons for moving to the “country” as he called it, Joyce and Willem set the table and they ate. After dinner, they retired to the living room, and Dr. Flood, who at this juncture insisted on being called “Tim”, opened his bag and took put a pad and pen. “OK” he said. I had the chance to speak with Willem, and to make some notes. Let’s try to look at this from an epidemiological standpoint.” Joyce went to bring coffee, and Dr. Flood began his questions.
“There are a number of conditions that fit your symptoms, as you probably know. To an endocrinologist, these seem like metabolic issues, and to a rheumatologist they look like arthritis. When you are a specialist with a hammer, everything naturally looks like a nail.” Willem asked, “How then can anyone know?” “How?” Tim Flood smiled “Epidemiological deduction. Let’s start with a list of diseases and conditions that present with your symptoms. Give me the symptoms as you remember them, beginning from the first time you noticed anything out of the ordinary.” After recounting, with Joyce’s help his early years, college, and life since, Dr. Flood had some questions.
Has anyone in your family ever had multiple sclerosis? The answer came back “no.” As a child, did you have rheumatic fever? Again, the answer was no. “Ever cut yourself while working here on the farm” Dr. Flood asked. “Oh yes. More than once”. Dr. Flood smiled. “Any trouble getting the blood to clot?” Willem said “A few times with a bad cut. Why?” Dr. Flood took his pen and, looking down the list of conditions he had written, drew a line through ‘Buerger’s disease.’ “Ok” he said. “Any recent blood work”? Joyce got up and returned with the lab slip that had come in the mail just that afternoon. “All normal” Dr. Flood said. “That seems to be the problem,” Joyce said. “There is no way to tell what this is.” Dr. Flood smiled, and said, “The best way to find out what something is, is by finding out what it is not.” And taking the lab slip in hand, he began to cross out line after line. He drew a line through Fibromyalgia. Then Endocarditis.
Glancing at the lab slip, he saw the results for ESR, CRP, Serum creatinine, and RF. Someone had ordered the right tests, as he crossed off mixed connective tissue disorder, and rheumatoid arthritis. “Any headaches? Migraines? That sort of thing?” Willem said that back in college he might get the occasional headache, but aside from that he rarely if ever got them. “Do you ever notice any swelling in your hands or feet?” he asked Willem. “Nope. But I am not pregnant” and they all laughed. Dr. Flood drew another line through his list. “In the winter, do your hands get cold working outside?” “Oh yeah” Willem replied. “Between the cold, and the soreness of my joints and muscles, I had to hire a couple of the local boys to help out. Does that mean something?” Dr. Flood remarked that there was a condition known as Reynard’s, and that some of the symptoms are hands getting cold. But the flow of blood that Willem described when he cut his finger would indicate there was more going on.
As Dr. Flood looked down at his ever-shortening list, he checked back on the lab results. “How’s your appetite? He asked Willem. Joyce remarked, “Maybe I should show you the grocery bill? Willem has always had a healthy appetite. Is that important? She asked. “It is helpful” Dr. Flood replied as he crossed off polyarteritis. Gazing at his rapidly-shortening list, Dr. Flood drew a line through Lambert-Eaton, paused for moment and asked, “Has anyone in your family ever had any form of cancer? On either side?” When Willem had thought about it, he replied “nope. Not ever” and Dr. Flood drew another line through Lambert-Eaton.
Now, looking at the possibilities he had crossed off, Dr. Flood turned to Willem and asked him to answer yes or no to the following: has he ever had, fatigue? “Yes.” Muscle or joint pain? “Both”. How about “Fever”, Dr. Flood asked.” Willem answered “yeah but just slight. I have always run a little warm, ever since college. Must be Joyce.” Chest pain?” Dr. Flood asked. “On occasion, but never bad. Mostly if I take a deep breath.” Dr. Flood sat up. Looking at his list he added a new line. “Have any rashes? Any sore patches of skin? The answer was “no.” Any sores in the mouth? Cold sores?” “Sometimes” was the response. Dr. Flood sat back. He was clearly thinking about something and he turned to Willem and asked one final question. “Does male baldness run in your family?” Willem seemed embarrassed and said that no, he had two older brothers, yet it was he who had thinning hair. Joyce spoke up and asked why his hair could have anything to do with his pain and tiredness?
Dr. Flood then asked if he would be willing to get one final blood test, one called Antinuclear Antibody, or ANA. Wilem said he would call Doc Smith in the morning. “Have you met our doctor?” he asked Dr. Flood. “Not yet” he replied, “but I have heard he is a character.” “He is that,” said Willem, turning to Joyce and said “perhaps you can call the nice doctor I saw in the city?”
The next morning, Joyce called Dr. Tanaka who asked why her husband wanted to get this test? When she responded that she and her husband had spoken with an epidemiologist, Dr. Tanaka agreed it may be beneficial and he would put in a request for the test. Willem and Joyce again made the trip to the city and once again took the elevator to the basement where the Lab was located. Ten minutes later, as they walked across the parking garage to their car Joyce turned to Willem. “I hope this will get some answers,” she said. He nodded.
The first week passed in anticipation, but by the middle of the second week with no word, both Willem and Joyce had figured the test must be normal or they would have heard something by now. It was exactly two weeks to the day when the phone rang. It was Dr. Tanaka. The ANA was positive. Dr. Tanaka explained that a person’s immune system makes proteins called antibodies. They recognize and combat infectious organisms in the body, and sometimes they mistake normal proteins in the bodies as an infection. One kind of antibody that attacks the proteins inside a cell are known as antinuclear antibodies. He explained that by itself, an ANA test cannot determine anything, but when added to a patient history and other symptoms could indicate a systemic issue. He concluded with asking if Willem would need a follow up appointment? Joyce said she would get back to him.
That evening when Willem came home Joyce told him that Dr. Tanaka had called and that his ANA test was positive. Willem said he would need to make an appointment with Dr. Tanka for next week. As they sat on the couch, arm and arm, Joyce reached over and stroked Willem’s hair. “It is getting rather thin in spots” she said with a smile. “Don’t remind me,” he said. When Joyce got up to get the coffee, she bent over and kissed his head. As she pulled away she noticed something…odd. “How long have you had that?” she asked. “Had what” came the reply. “That red splotch on your head.” Willem got up and crossed the room to the mirror. “Hmm. Not sure” he replied. “Can’t really see it too well.” Joyce crossed the room, and as Willem bent down, she ran her fingers cross his scalp. “Does this hurt?” she asked. He could feel her scratching his head, but it wasn’t uncomfortable. Then she remembered what Dr. Flood had said about a skin rash.
Looking at the clock, Joyce dialed the cell phone of Tim Flood. Before he could answer she asked, “Could the rash you asked about be on a person’s head?” “Is this Joyce?” came the response, followed by “yes, it could be anywhere” suddenly aware of his mistake. It could of course be on the scalp and hair would hide it. “Did you find a rash?” he asked. “Yes” she said, and Willem’s ANA was positive, but the doctor said that does not mean anything conclusive.” Tim Flood explained that many people have a positive ANA who do not have any disease or condition, and that is why he had asked all the questions about family, symptoms, etc. “Taken together it is suggestive of an autoimmune condition called Lupus or SLE. Of course, your doctor will explain this to you, and will advise you on the best treatment.”
Before she hung up the phone, she thanked Tim Flood once again. He and Willem had become friends, often having lunch together at the Deli around the corner from the Public Health Office. That Monday, Joyce booked an appointment with Dr. Tanaka to make some decisions on how to improve Willem’s condition. “Can I have Dr. Tanaka call you if he needs to?” asked Willem. “Sure, but I think my work is done. I just figure these things out. Then I am done.” He smiled, and Willem reached for the salt adding “well..just in case?” “Of course” replied Tim Flood, as he reached for a napkin. “This one’s on me” Willem said, as he reached for the check. Dr. Tim Flood, diagnostic epidemiologist turned suburban program director did not argue.