Posted on Sep 9, 2017 in Blog |
8 Years Ago Today: The First Appointment
I lied on the 22-page “Complete History Form” Dr. Mozayeni asks all patients to fill out. I suspected if I revealed all of the symptoms I had experienced over the years, he would surely think I needed a psychiatrist rather than an LLMD. No one has that many symptoms without being a hypochondriac; even I had to begun to believe this. I focused on my major symptoms and denied the less compelling ones.I was very nervous at my first appointment with Dr. Mozayeni. Partially, because I couldn’t believe I might actually have Lyme Disease. If I did have Lyme, I didn’t want to have Aunt Betty’s outcome. And I didn’t want to have one more physician looking at my paperwork and giving me another incomplete, inaccurate diagnosis. My anxiety had reached a new peak.
It wasn’t like getting a splinter in my finger. I couldn’t remember getting the splinter. I couldn’t see the splinter. I couldn’t get a pair of tweezers to excise it. I knew I felt pain and it kept getting worse. But there was no red, swollen, site with puss coming out. There was nothing to show a physician except my own perception and recording of symptoms. Even some of my lab work was faulty, skewing the puzzle more so. For years, I watched and listened as physicians provided little explanation and less treatment for pain that was increasing sometimes exponentially. Over those years, my anxiety increased, my defensiveness grew.
I talked with other people, researched the Internet (not necessarily the best idea), desperately seeking answers. When I did receive a diagnosis, I thoroughly researched that condition, becoming as expert as a non-science major can become. But when I met new physicians and explained previous conditions, my knowledge base was met with skepticism and obvious discomfort. I found most physicians did not appreciate being challenged by laypeople. I discovered an ugly dimension in medicine.
When the physicians could not come up with a plausible diagnosis or effective treatment, they did not like being put on the spot. They did not care for being challenged with the possibility they might be wrong in their diagnosis. They furrowed their brows, reinforcing their rejection.
In his book How Doctors Think, Jerome Groopman points out “physicians, like everyone else, display certain psychological characteristics when they act in the face of uncertainty. There is the overconfident mindset: people convince themselves they are right because they usually are.” (p. 150).
Groopman adds, “Specialists in particular are known to demonstrate unwarranted clinical certainty. They have trained for so long they begin too easily to rely on their vast knowledge and overlook the variability in human biology.”
Here I was, thinking, Ok, that diagnosis wasn’t right, so what else could it be? I was ready; no, by that time, I was desperate for another possible diagnosis. But the physician was still stuck on the fact that I had informed him he was wrong. He did not like it one bit. Instead of saying, “Let’s move on to the next round of possibilities,” he suggested counseling. I received this suggestion from more than one physician.
My frustration compounded with each visit. I had to prepare and brace myself for each physician, to explain why I knew so much about various conditions. I had to emphasize the three most exasperating symptoms to have them even acknowledged. I only had about 11 minutes for each visit and I wanted as little of the time spent in a defensive mode as possible. The urgency and stridor in my voice increased.
I eventually wondered if my desperation for an accurate diagnosis was appearing as Munchausen syndrome – a type of mental illness in which a person repeatedly acts as if he or she has a physical disorder when, in truth, they don’t have the symptoms. They act this way because of an inner need to be seen as ill or injured. They are even willing to undergo painful or risky tests and operations in order to get the sympathy and special attention given to people who are truly ill. I definitely did not want to be seen as a candidate for Munchausen.
I didn’t have an open wound or broken bone. I had migrating pain, tenderness. I had overwhelming, incapacitating fatigue. My hands and feet were numb and cold. I would simply fall. I couldn’t walk down the hallway in a straight line. My husband jokingly called me “Ricochet Rabbit.” My knees buckled for no known reason. I cried in the morning from excruciating back pain when I tried to get out of bed.
Here was the truth:
I had an inner need to be seen as ill: first, because I was ill and, second, because no one was validating it in proportion to the amount of pain I was experiencing.
I had been willing to undergo painful tests in order to find an answer. I wanted my pain to stop. I was willing to go to any lengths to get resolution.
I remember seeing numerous specialists, giving them my thick file, showing them my spreadsheet of multiple diagnoses, many of which were auto-immune disorder related. No one put the pieces together. No one was reading the entire spreadsheet; no one until Dr. Mozayeni.
From the moment I arrived at his office I experienced something different from my other doctors’ appointments. I approached the private sign-in sheet sitting on an open counter. There was no sliding window for the receptionist to separate herself. I signed in and sat down in spacious chairs lining the walls against the deep blue painted walls. This room was rich in color, warm, comforting.
Abstract paintings added texture and depth, offering each person their own interpretation to the finished product. There was no right or wrong in this room.
When my appointment time arrived, Dr. Mozayeni came out to the waiting room greeting me warmly with an extended handshake and a genuine smile continuing past the introductions. He escorted me down the hall to his office, one corner filled with diplomas, fellowship certifications and class photos. I wondered which young student was him. Minus the white coats, it could have come from my own college era. We were not far apart in age.
His desk was sparse, more blank forms than ones filled out. In fact, the only file on his desk was mine. No distractions except the telephone and his MacBook laptop.
He opened the conversation by mentioning he had read through my file but he wanted to review my symptoms in a more thorough manner (more thorough than the 22 pages I had answered?).
Dr. Mozayeni went through the symptom checklist and bloodwork results very slowly, meticulously, often re-asking questions about the symptoms. I didn’t have the checklist in front of me, and I couldn’t remember which questions I had answered truthfully and which ones I had ‘minimized.’ About half way through, as he went through each section, developing his theory for diagnosis, Dr. Mozayeni started to explain the Bartonella disease process and how my seemingly unrelated symptoms fit together.
Dr. Mozayeni’s expression remained open throughout the two-hour appointment. This was a very different experience. His face indicated no judgment, surprise, or condoning. He made direct eye contact with me; his tone of voice was interested, calm, searching, genuine. He asked open-ended questions. His word choice indicated compassion, humility and understanding. His voice remained calm and clear. As time passed, my anxiety lessened. I would not have to be defensive or demanding in this appointment. I could simply tell my story and relay my observations and symptoms and let him process it from there.
“I have to assume the patient is telling me the truth,” Dr. Mozayeni later explained to me. “I have no reason to suspect the patient is lying to me. I have to take the data they give me and figure out how it fits into the system.”
Mainly, I was impressed by the amount of time he spent with me, the depth of information he gathered, and the clear intention with which he listened – really listened – to me.
From our very first meeting, I have been fascinated watching him. I have learned from him the way he views patients:
Each patient presents like a slide puzzle, a series of square tiles within a border, with one piece missing so the squares can be moved around but in a particular order; more intricate than a Rubic cube. Based on the patient’s symptom history and test results, Dr. Mozayeni moves the pieces around within the square until he can finally see the larger picture that illuminates once each puzzle piece is in its correct place. But in this slide puzzle, because the body is a series of systems working together, the individual puzzle pieces also change shape as they sit within the larger square. It’s a combination of a jigsaw puzzle, slide puzzle, and Rubic cube.
Dr. Mozayeni is a fix-it guy. He wants to understand how the body works in order the treat the problem.
He doesn’t want to treat only the symptoms;
he wants to treat the cause of the symptoms.
He wants to fix patients, not just make them feel better. He cannot stand the thought of people suffering when the problem is not fixed.
Because I already had some results from IGeneX revealing five positive bands, Dr. Mozayeni was able to start me on some medications immediately. He also changed my thyroid medication dosages and added vitamin supplements.
“I think with these changes, you will soon find yourself feeling about 20 percent better than you have been,” he suggested. He also ordered more blood work.
This first appointment was tremendously emotional for me. It was the first time in more than a decade I believed a physician was fully attentive; listening, collecting and evaluating data, and presenting a diagnosis that actually fit.
During my first visit, Dr. Mozayeni clearly (and thankfully, slowly) explained 22 pages and almost three decades of symptoms in a clear, concise, believable manner outlining the likely root cause of persistent symptoms in Lyme Disease and Bartonella.
He explained simply and clearly what had been happening to my body for almost thirty years; how each system was affected and had complicated the next set of symptoms that appeared.
To finally enter an office where there was no time limit, no judgment, no disbelief, no arrogance; well, it was simply overwhelming.
When I left Dr. Moayeni’s office two and a half hours later, I sat in my car and wept. I wasn’t crying because I found out I had the same disease that had killed my Aunt Betty years before. I cried because I was overcome with the most profound sense of relief I had experienced in recent memory; and the most amazing sense of honest, authentic acceptance. I no longer needed to ‘prepare for battle.’ I could be forthright and be believed. I could question and not be reprimanded. I could doubt and be reassured.
During my now 8 years with Dr. Mozayeni, and with my other physician encounters, I have learned no one will fight for my health more than I will. I have to know my numbers, know my meds, know what to ask, what to say, what to let go and what to demand. It took me decades to find the right physician. It was worth every step.
But it still remains my responsibility to be an active participant in my recovery. If a doctor says, “You don’t need to worry yourself about that,” walk out the door and get a new doctor who will treat you as a bright, equal, assertive patient.
I have always appreciated that Dr. Mozayeni tells me up front how and what he is thinking. There is no sugar coating. He is brave enough to admit he doesn’t have all the answers right now, but he also emphatically states he will keep searching until he finds them. And he does. I don’t want a doctor who placates me with false promises. I need a medical professional who is up front with patients and looks beyond the superficial for answers.