When One-In-A-Million Equates to “Serious and Sometimes Fatal”

The pulmonologist looked at me, his wrinkled forehead scrunching further as his eyes focused in on my face. “That rash on your leg is a signature symptom of valley fever, but I’ve never seen the disease re-activate. The CT scan of your lungs is clear. You’re sitting here with me. Nah, it’s not valley fever,” he spoke with confidence as he shrugged his shoulders, “but we’ll figure out what it is.”

The next evening, the doctor called me personally. “I’ve never seen it before in my 45 years in medicine. Your valley fever is back.” He sent a referral to an infectious disease specialist and prescribed a high dose of anti-fungal medication, which I picked up from the pharmacy ten minutes later.

Coccidioidomycosis, or valley fever, is an fungal infection which can be contracted by simply breathing in the microscopic spore an endemic area. The infection is becoming increasingly common in the southwest United States, parts of Mexico, and Central and South America. Most people who inhale the fungal spores don’t get sick and, usually, people who become sick with valley fever recover on their own. In particularly bad cases or in immunocompromised individuals, an anti-fungal medication may be prescribed.

In March 2015, I left Easter brunch early because I wasn’t feeling well. A nasty cough quickly developed, along with huge bags under my eyes. My boss told me to go home. I was in bed for six weeks. Over the course of that time, I saw my primary care physician and he prescribed antibiotics, as he suspected pneumonia. When a second round of more potent antibiotics still didn’t clear the fever and cough, I went to urgent care for an x-ray. The diagnoses: bacterial pneumonia.

As fate would have it, my boyfriend’s father is a retired radiologist and he spotted a patch of valley fever on the scan that the urgent care physician had missed. My father-in-law put in a call to his friend, a pulmonologist who generously adjusted his schedule to squeeze me in. He confirmed the valley fever diagnoses through the X-ray and a positive blood titre of 1:16. (Titer levels, expressed as ratios, indicate how many times blood can be diluted before no antibodies are detected.) The pulmonologist shook my hand and said, “Congratulations! You’re forever immune from Valley Fever. Call me if anything changes, but hopefully I never see you again.” I recovered fully and resumed all my usual activities within a few weeks.

Fast forward to June 2017. I developed a stubborn case of conjunctivitis, also known as “pink eye,” which has been unresponsive to continued treatment. For the past year, I’ve effortlessly maintained the hungover and sleep-deprived party-girl look. My saggy, bloodshot eyes and blistered waterline belong in a Ben Stein commercial.

In December 2017, after completing a two-month intensive fitness competition hosted by my personal trainer, my favorite exercises became exhausting almost overnight. Rather than powering through, I had to take a break between each lunge or quit after just five minutes of HIIT. My body would be sore for a full week after just 15 minutes of light weigh-lifting or running. My primary care physician requested blood work, and everything came back normal. I limited exercise to my weekly appointment with my fitness trainer, and then stopped altogether when she moved away.

By January 2018, I was experiencing fatigue independent of exercise. I would wake up tired, with sore joints and muscles. I tried to improve upon my already healthy diet and meditate to reduce any invisible stress my body was experiencing. I figured the canker sores were also symptoms from a stress so deep and intrusive that I wasn’t even aware of its existence.

In February, I developed a painful rash on my ankle. Within a few days, it had multiplied and spread from my ankles to my knees. The scaly, red nodules lasted for over a month, and then sank back beneath the surface, leaving behind pale brown scars. My primary care physician identified them as erythema nodosum, Greek for “red knot,” but couldn’t determine the cause.

As the rashes began to subside, I started developing severe headaches that migrated across my skull over the course of the day. I would wake up with pain in my left temple and the observe as the sensation gradually traveled to the back of my skull. I was referred to a neurologist in March and I cried when he suggested I might be having small seizures. Having always been healthy and committed to maintaining optimal health, that was hard to hear.

The neurological blood work and brain MRI came back normal, so I was referred to a sleep specialist. I asked my boyfriend to join me at the April appointment because I was embarrassed of my wide-ranging symptoms and fully normal lab results. I wondered whether the doctors were beginning to think I was a hypochondriac.

I don’t match the typical demographic for sleep apnea and other sleeping disorders. As the sleep specialist asked questions, they eventually led to mention of the leg rash from earlier in the year. He suggested that I be tested for valley fever, even though it was statistically unlikely. He wife had similar symptoms with negative lab results, he shared, and she had fully recovered after six months of the anti-fungal Diflucan. He scheduled a sleep test anyways, and it came back normal.

Suddenly, after 12 months of seemingly unrelated symptoms, I started to wonder whether they were, in fact, all related. In early May, I developed a small cough and attributed it to allergies. My first run-in with valley fever had left me doubling-over with a powerful hacking cough that completely knocked the air out of me. The “valley fever diet” also caused me to dropped from 125 pounds down to 105 within a month.

This was different. I felt mostly okay. But soon, it began to feel familiar, like the newborn baby brother of that long-ago bully. My primary care physician prescribed a CT scan of my chest, which showed a large, calcified nodule left over from the old valley fever infection, but that was all. Findings: Nothing remarkable.

I grew increasingly frustrated. I began to question whether my symptoms were psycho-somatic or all in my head. I felt increasingly awful yet, even after $2,000 in medical appointments and tests, the doctors couldn’t find anything unusual. Seeing my distress, my father-in-law set up a follow-up appointment with his pulmonologist friend, just to confirm that the “clear lung” diagnosis was accurate.

My lungs were clear, but my new blood results were not. The levels of valley fever antibodies have quadrupled since my last infection, with a positive blood titre of 1:64. My clear lungs and prior skin rash signify that the disease has disseminated and spread. The big question right now is: where has the disease lodged itself? I’m meeting with an infectious disease specialist today to discuss my valley fever, and am taking a high-dose anti-fungal medication in the meantime. It may be placebo, but after five days I’m already feeling a little better.

The typical demographic affected by valley fever are young children, elderly adults, certain ethnicities (namely African-American, Filipino, and Hispanic), and immunocompromised individuals (such as those with HIV, those undergoing chemotherapy, or organ transplant recipients).

Valley Fever doesn’t typically occur in 29-year-old women who exercise daily, eat a balanced diet, avoid toxic household chemicals, think positive thoughts, and are proactive about preventative medicine. In the medical world, I am a bit of an anomaly.

I inhaled a fungal spore three years ago, it fell dormant, and now it’s back with a vengeance. For perhaps the first time in my life, I’m in the <1%.

Frighteningly enough, one-third of cases within this <1% are fatal. When people talk about “The 1%,” this certainly isn’t the class they’re hope to join.

I’m still going to work, attending social functions, and living my life. Aside from excessive sleeping and a mild cough, I feel alright. I like to think that if the disease were lodged in my brain, my spinal column or my bones, I would know. If I were in the category of “serious and sometimes fatal,” I imagine I would feel a lot worse.

The Centers for Disease Control and Prevention reported 22,401 cases (42.6 cases/100,000 population) in 2011, an increase from 2,265 cases (5.3/100,000) reported in 1998. Although Coccidioides infection usually produces little illness and results in lifelong immunity, 25%–30% of infections result in protracted but self-limited illness; <1% are complicated by dissemination, which is serious and sometimes fatal. Diagnosis and treatment remain challenging, especially in persons with disseminated, severe, or chronic disease, where host immunity plays an important role.

If you live in an endemic area (Arizona, California, Mexico, etc.) and experience any flu-or pneumonia-like symptoms that do not resolve with treatment, ask to your physician to consider checking for valley fever. Unfortunately, many physicians have limited knowledge about valley fever, and testing is afterthought following a host of other failed treatments.

Common symptoms to look out for include:

  • Fever
  • Cough
  • Chest pain
  • Chills
  • Night sweats
  • Headache
  • Fatigue
  • Joint aches
  • Red, spotty rash
  • Weight loss

I am not a medical doctor and I don’t have the authority to prescribe medical advice. I’m sharing my story merely to raise awareness about the disease because I have had a hard time finding research, treatments and other resources to support my proper diagnosis and recovery. With both my 2015 and 2018 valley fever infections, the final diagnosis took months, and those with compromised immune systems simply cannot afford that time.

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