My Story: what's wrong with me?

In 1992 I moved to New Mexico to attend graduate school in Albuquerque. I was 32 and in excellent health, or so I thought, but by 1995 I knew something was wrong. My hands and feet burned and tingling, a curious sensation that was especially acute at night when I was in bed. I developed sudden and severe seasonal allergies, had increasing sensitivity to chemicals and fragrances and experienced periodic muscular weakness in my legs.  Stabbing pain in my head made me fearful that I was having small strokes. Looking back, signs of illness were clearly apparent by my late 20s. There were years of drenching night sweats along with swollen and painful lymph glands, insomnia, anxiety and extreme weight loss. When in my thirties the muscular and neurological symptoms first appeared I assumed it was the onset of MS but without medical insurance had no ability to see a doctor.

Despite increasingly strange symptoms I still enjoyed a reasonable level of health. Then, in September 1998, after a day spent rock climbing in Canada and only three days after finishing a 73-mile solo backpack trip, I found myself in a hospital in acute congestive heart failure. My heart was enlarged and seriously damaged with significant left ventricle failure. At the time I was told there was no hope for recovery and advised to get on a transplant list. By a miracle, over the course of several months my heart recovered its mechanical (pumping) functioning with only minor residual damage to the electrical system. It took a year and a half to regain much of my strength but by summer of 2000 I was biking to work. For a couple of years I was able to take long walks, do some modest cross-country skiing and even managed one 40-mile backpack trip – the last I would ever take. 

In early winter 2004 my health took a sudden nosedive. I could no longer bike to work and spent increasing amounts of time on the couch during the weekends. I had episodes of breathlessness and alarming cardiac arrhythmia when walking. By spring I was having problems at work. Most disturbing was the decline in my cognitive functioning. Once mentally agile I was now easily confused. I suffered from memory loss and struggled with word recall; my comprehension was poor and I had difficulty tracking and assimilating information. A tremor that manifested in my early 30s was significantly worse. My gait was unsteady and I couldn’t walk a straight line. When walking the long corridors of my office I bounced off the walls, bumping first into one then overcorrecting and staggering into the next.

By June I could no longer work and had difficulty getting out of bed. All of my muscles hurt. My legs were so weak they shook with the effort of standing. I was exhausted and spent all my time in bed or on the couch. I didn’t have the strength to clean house or do laundry – cooking was nearly impossible. Finally, unable to care for myself, I spent two month living with family. Along with all the other symptoms I had a constant headache, abdominal pain, dizziness and nausea. The tingling and burning in my hands and feet had moved up into my arms and legs and caused constant pain during the day and night. Bright lights and loud noise hurt my head. Curtains were kept closed to keep rooms as dark as possible. I was unable to watch television, read, use a computer for any significant length of time, or even talk on the phone.

Despite the severity of my symptoms I had no identifiable disease. Two doctors diagnosed me with chronic fatigue and fibromyalgia but those diagnoses failed to identify what was actually making me sick. Routine blood tests came back normal. A neurologist assured me nothing was wrong despite severe cognitive problems and the fact that my muscles weren’t functioning properly. Doctors were focused on the scope and severity of my cardiac arrhythmia – a twenty-four hour Holter monitor failed to record one normal sinus rhythm. In August thyroid tests came back positive for Hashimoto’s Thyroiditis. My cardiologist had me on medication for tachycardia and was threatening to do a catheter ablation to burn out the area of my heart that was misfiring. But neither treatment addressed the underlying cause of my illness – a wonky heart and thyroid were mere casualties of a war raging in my body.

Panicked, I spent what little energy I had when I could actually get off the couch scanning the web for clues that might point to what was wrong. I began to suspect an environmental cause and searched, without much luck, for information about mold. The apartment building I lived in was old. There was obvious mold on windowsills and the kitchen fans vented straight into the roof. I even removed electrical plates to peer into walls but without any luck. Unfortunately, information about mold illness was still in its infancy and I gave up pursuing that possibility.

My google efforts eventually lead me to suspect Lyme disease – the only illness I could find that listed all of the symptoms I had. My naturopath ordered a PCR test that came back negative. When I finally realized that doctors were never going to figure out what was wrong with me I quit seeking medical help. In September I moved in with a friend and slowly recovered enough to return to work part-time. By March 2005 I was able to get another apartment and live by myself but my health remained extremely fragile. In July 2005 I had a pacemaker put in.

I limped along until spring 2008 when the research institute that I worked for relocated to another building. Within weeks I started getting sick and suspected that the building was the cause. There was a terrible odor in my office and I kept the window open all the time. Co-workers complained to each other about the building but there was little we could do against a powerful state institution. By May I was in trouble. My cognitive function was deteriorating again. One day I got in the car to go to the chiropractor but when I drove to the end of the block I froze at the stop sign; I couldn’t remember how to get to his office.

In June 2008 I had a complete relapse; all of the old symptoms returned with a vengeance. Once again I was unable to work. I spent most of June in bed and on the verge of having a seizure. Sometimes I’d lie on my bedroom floor and put my head in the closet with a sleeping bag over it just to close out all light and sound. In August I started seeing a naturopath who diagnosed me with Lyme disease. At the time it made sense. I’d grown up in rural north Idaho where ticks were common and had spent years hiking and backpacking. In September I started antibiotic therapy and spent six weeks living with my parents.

In late fall I returned to my apartment and part-time job. Now the office building was even worse. In my absence they’d started a remodeling project. The first day they painted near my office I was exposed to fumes for nearly seven hours. I was so sick I barely made it home. All of my muscles burned, the back of my neck felt like it was in a vice, I had chills and a headache and felt like I was going to projectile vomit. For three hours I saw a blue fog everywhere. My muscles shook and twitched uncontrollably – I thought I was dying and I knew I couldn’t go back into that building.

My supervisor approved a telecommuting schedule and I found an office in another building on campus that I worked from two days a week. I struggled to hold onto my job while being treated for Lyme disease. A year and a half of antibiotics did nothing to improve my health, which continued to deteriorate. By May 2010 my supervisor insisted that I return to the office. Every time I went into the building I got sicker. In June I went on a year-long sick leave but by then my health was ruined. I left Seattle, moved in with my parents and applied for disability. A year later, in June 2011, I officially quit my job.

In summer 2011 I started reading Dr. Ritchie Shoemaker’s book Surviving Mold. In August a genetic test came back positive for one of the worst HLA genotypes for mold illness, the “dreaded” 4-3-53. In January 2012 I traveled to Maryland to see Dr. Shoemaker. Thorough blood tests confirmed biotoxin illness from exposure to mold. All of my symptoms going back nearly 30 years are the result of chronic inflammation caused by mold toxins. Even the cardiomyopathy (heart failure) may well have been caused by inflammation associated with biotoxin illness.

For information about biotoxin illness caused by mold: www.survivingmold.com/diagnosis
See also my previous post:
http://comingbacktopeace.blogspot.com/2012/06/biotoxin-illness-basics.html