The Depths of Illness - Sun Sensitivity

Shortly after getting off of the Appalachian Trail in 2005 with a diagnosis of Lyme's Disease, I took a job installing solar panels in the northeast - in Massachusetts, Vermont, Connecticut, and New York.  Day in and day out I was on roofs or on the ground in high sun exposure areas.  I wore sunscreen but the sun felt different than I remembered.  Instead a pleasant warmth, the sun light burned.  The feeling reminded me of lighting my finger on fire (a brief obsession in high school).  The trick was to spray a high-alcohol breath mint spray onto my finger and then set it ablaze with a lighter or match.  The heat became unbearable just about the same time the alcohol burned off  and the fire extinguished (although I remember putting the fire out with a shake of the hand most of the time).  This almost unbearable heat - as if my skin had just been set ablaze but had not yet registered the full fury of the fire - was how the sun felt on my skin.  I put on more sunscreen.  It didn't help.  Shade, clouds, and night became well-loved friends.

I found out from my father that sun sensitivity was a side effect of the antibiotic I was on, Ciprofloxacin, for the Lyme's disease, which gave me hope that my new aversion to the sun was a temporary state.  It was not.  Within a few months Ingrid and I moved to San Diego, which is in the top ten US cities for average hours of sunshine each year.  The feeling of burning while in the sun forced me indoors.  I sought apartments on the north side of apartment buildings or sheltered with trees.  The apartments were dark, damp, and cold - which I preferred but Ingrid did not.  I made excuses to stay inside while Ingrid went out to explore, to play beach volleyball and enjoy other sun-exposed activities.  The few times that I indulged in activities in the sun, I suffered the consequences - skin that burned while outside and radiated heat for hours afterward, headaches, and irritability.   

The Phantom Illness

I had been ill for nearly five years. With what I do not know. My symptoms, many. Confirmed diagnosis, none. It's not for lack of trying. My father is a physician, one of the best in the world in my opinion. When I fell ill in 2005, I received the best medical treatment available. I had blood and other tests galore. I was referred to some of the best specialists around. At long last, I was clinically diagnosed with Lyme's Disease and Giardia. Just to be clear, a clinical diagnosis is not one that is confirmed by blood or other testing; it is a one based on the best available data, which in my case was circumstances plus symptoms.

The Circumstances: Long-distance hiking on the Appalachian Trail, multiple deer tick bites, symptoms consistent with Lyme's Disease.

The Symptoms: Brain fog, fatigue, achy joints, frequent urination, muscle twitches, abdomen pain, insatiable thirst, blurred vision, depression, muscle tightness, aching teeth, tonsil stones, sun sensitivity, night sweats, chills, uncontrollable hiccups, stomach aches, bloating.

But after a few months and multiple courses of drugs, I was still ill. A new potential diagnosis - Post Lyme's Disease Syndrome. Untreatable. Another potential diagnosis - Celiac Disease. The treatment - stop eating wheat. I stopped eating wheat. There was some improvement. I stopped eating dairy. A bit more improvement. I stopped eating most of everything else. A bit more improvement. But not total improvement. I was still unable to function like a normal human being. My energy levels remained low. It was almost impossible for me to make it through an entire day without needing a nap. I didn't have enough energy to socialize or do anything after more active than lay on the couch after work. My abdomen hurt. My thirst was not quenched. Tonsil stones were still present. I was not better.

Then, life became more difficult. My wife and I went on vacation to New Zealand. Two days in, I got a virus, passed out on my way to the bathroom, and slammed my head on a table on my way to the ground, sustaining a concussion. I was now unable to walk more than a half mile without getting a headache and nausea. I was fatigued. I was unable to focus without getting a migraine. Work was nearly unbearable. My back ached constantly. Then, a new issue - my stomach started to hurt. I loathed food, and yet I ate more. I went to see my doctor. I told him all of my ills. He asked minimal questions. He tested nothing. He offered no suggestions for therapy or treatment. He only asked me to come back in a few weeks for a check-up. I felt abandoned.

My thirtieth birthday came. I spent it in a dark room on the floor. I had eaten too much for breakfast. I felt greasy and bloated; I didn't want to eat; I was hungry and full; my body was conflicted.

My disgust with on that day led to an unusual decision. I decided to do a 72-hour water fast. Nothing to eat but water. That night, after an uncomfortable dinner, I started. The next day, I stopped. My day had been good until sometime after lunch, when a headache kicked in and stayed and got worse. I had dinner. I felt worse. I began my fast again. This time, I had a significant amount of energy on the first night of my fast and was not tempted to eat. But on the second night my headache returned. But feeling that I had accomplished what I set out to do (cure my stomach pains), I returned to food that night, first liquids (some chicken broth and apple juice), then raw foods (a piece of celery). As hoped, my stomach pains were gone. My energy level skyrocketed for a few days. And for the first time in nearly five years, I gained a glimmer of hope for future health.