My Journey to Environmental Medicine
In the spring of 2005, at the age of 35, I was working part time as a family physician in student health and for an organization supporting persons with developmental disabilities while working full time as a wife and mom of an exuberant 5 year old daughter. Around this time, I began to notice a subtle decline in my health. In all likelihood, this had been going on for many months, but I dismissed the symptoms like many busy people would. One day, when my daughter was not feeling well, I took her temperature and on a whim took my own afterward. 101.2. A fever-on a day I did not feel any better or worse than the previous days, which retrospectively was not very good. Weird. And important, because in my work, I would see very young babies who were often many weeks premature and with this information, I could not in good conscious continue to see them until I had been evaluated by an infectious disease specialist who quickly evaluated for potentially contagious causes of my daily fevers and cleared me to work which I did. Life as usual. I have always been healthy and active. This was just a weird glitch that would resolve in a couple of weeks. But it didn’t.
The few weeks turned into 10 months. During that time every family member living in the home experienced significant symptoms ranging from pneumonia to recurrent urinary tract infections with blood in the urine , fatigue, a new onset large nasal polyp requiring surgery, depression and neurologic symptoms including atypical muscle cramps. But it seemed my symptoms were the most extreme and given the daily fevers with temperatures between 101 to 102 Fahrenheit, I involuntarily embarked and on a medical odyssey I could have never imagined. Within months of seeing the initial infectious disease, I saw 26 physicians. One CT scan turned in to a dozen. One brain MRI with gadolinium turned into 4. Eight organs were biopsied. The procedures, biopsies, abnormalities and medications just kept piling up while my symptoms continued to worsen to the point I could barely get out of bed each day. Ultimately I saw specialists (often more than one) in every medical field except nephrology, orthopedics and psychiatry because I had symptoms and often biopsy or imaging abnormalities. While the daily fevers continued, my vertigo became so severe that I had to dictate with my eyes closed at the end of clinic or the room would spin too much. Gastrointestinal symptoms prevented normal eating. I was diagnosed with interstitial cystitis and my bladder symptoms became so severe that I could not even control the pain and frequency with home instillations of heparin and lidocaine. Shortness of breath was severe enough that it limited even slow walking for very short distances-something completely foreign to a person who had maintained high levels of physical activity throughout her life. Pulmonary nodules with no clear explanation were found on multiple chest CTs. Joint and muscle pain was chronic and debilitating and evaluated by rheumatologists with the most remarkable findings being very dry eyes and a positive ANA with a titer that continued to increase. Weakness, headaches, paresthesias and vertigo resulted in evaluation by a neurologist. Brain MRI’s showed an 8 mm pituitary adenoma. A bronchoscopy with lung biopsy showed only inflammation and resulted in a staph pneumonia which required hospitalization. Severe erosive esophagitis and Barrett’s esophagus was found on endoscopy by the gastroenterologist. The oncologist kept looking for cancer. They did PET scans and a bone marrow biopsy. The allergist/immunologist did testing and the cardiologist evaluated for hidden sources of infection by doing a transesophageal echo which was normal, but he was occupied trying to manage my new onset hypertension that could barely be controlled by 3 medications. Why would this happen to an active fit 35 year old? Nothing made sense. Even the gynecologist and dentist and ophthalmologist got in the mix looking for sources of infection that would cause the daily fevers. There were more visits to an ophthalmologist later because my vision would blur intermittently and unpredictably, but no cause was found. I had 20/20 vision and a normal eye exam so all was supposedly well. A dermatologist biopsied a new skin lesion that unexpectedly showed leukocytoclastic vasculitis with no identifiable cause. An endocrinologist had little to offer, but it was notable that I had been diagnosed with Graves disease one year earlier (while living in the same house) and underwent radioactive iodine treatment for an overactive thyroid.
My symptoms did nothing but worsen and about 9 ½ months into this fruitless and often painful journey, when I was referred to a sarcoid specialist at USC due to my symptoms systemic and visual symptoms and pulmonary nodules. He was a very kind man who did not think I had sarcoidosis, but diagnosed me with chronic fatigue syndrome and recommended I quit work and apply for disability because there was no real treatment available. As sick and discouraged as I was, something felt off. Chronic fatigue was the furthest thing from the life I experienced before getting sick and I struggled to accept that this could happen to me for absolutely no reason. At that point, I still had no idea what was going on, but I knew we were missing something. During the many months of illness, I had taken comfort in a medical mystery show that showed people with serious conditions, misdiagnosed for years and often decades who eventually figured out and solved their health problem. They all had the same message-if you know something is wrong, don’t give up until you figure it out.
Shortly after this, we did figure it out. Behind a bookshelf, we found the only visible hint of what was causing our symptoms-a small black smudge on the wall. It almost looked like an oil smudge, but I had seen similar pictures in books and it was not oil. It turned out to be the only spot in the house where the four walls full of Stachybotrys mold was visible from inside the house. Testing confirmed high levels of Stachybotrys and Aspergillus/Penicillium mold. Remediation work would ultimately show that all the walls were filled with Stachybotrys due to improperly attached balconies that had been continually allowing water intrusion that could not dry -the perfect set up for one of the worst indoor air quality scenarios. Later we would find jackets covered in mold in a rarely used closet, but initially the only sign, was that smudge which might have remained hidden if we hadn’t moved the book shelf in front of it.
As it turned out there had been a few hints. About three months in to my symptoms, my husband wanted to cancel a scheduled vacation to Hawaii because I was so sick and my breathing was so bad. We ended up going, and within 2 days, my fever was gone, my breathing was fine and I felt normal, healthy. I was as able to be as active as I wanted and had a great time figuring, the last 3 months had been a strange quirk and it was over and to be forgotten. Within a week of arriving home after this two week vacation, I was sicker than I’d previously been and was admitted to the hospital where, remarkably, but not surprisingly, my fevers stopped. Three days later I was discharged home the morning immediately after a bronchoscopy and because of the Staph pneumonia I now had, I felt even more sick and now had a 104.7 fever and was immediately admitted and placed on a new very strong antibiotic for Staph pneumonia which I fortunately recovered from. I also recall times early in the illness where I felt better walking on the beach than lying in bed at home and developing a severe headache after returning to the house from a two day trip away. It all finally made sense and leaving that home and the belongings in it meant that there was hope that we could improve and get our lives back and that turned out to be the start of everything.