After completing my sixteen-week trial run on a high-dose anti-fungal medication with no improvement, I asked my infectious disease doctor what our treatment plan would be moving forward. I could hear a small sigh over the phone before she replied, “For every 100 people I diagnosis with valley fever, I encounter 100 different diseases. The truth is, I can’t tell you what will work or what won’t. For now, we’ll stay the course.”
Thousands of adults and children across California and Arizona contract valley fever annually and find themselves battling the disease for months or years, often missing work or school due to debilitating symptoms and hospitalization. The fungus does not discriminate based on age, fitness, or ethnicity. Anyone who is exposed to dust in an endemic area is susceptible.
My doctor continued, “I know the medications are rough, but with dissemination–even though you’re not in the hospital–you are walking around with 28% hovering above your head.” I understand. There’s a serial killer on the loose in my body, and the medical investigative team doesn’t have the tools to take him down. If I don’t properly manage this, it could literally destroy me.
If it were strep throat, food poisoning, or any other bacterial infection, my doctor could prescribe antibiotics to destroy the culprit. With internal fungal infections, there are far fewer options. Worse yet, existing treatments take so long to work that they allow the disease spread, becoming ever-more damaging and deadly. My doctor doesn’t hesitate to remind me that I’m a ticking time bomb, and everyone is unsure whether I’ll be safely diffused or detonate unexpectedly.
Many of the current treatments are extremely expensive, costing thousands of dollars a month. Though a few groups of scientists have adopted research valley fever in recent years, it has been so low on the national priority list for so long that treatment research doesn’t receive much funding. The exponential growth of diagnoses in recent years is finally drawing attention and funding to the clear, unmet clinical need.
In some patients, the treatment is as harsh as the disease itself. In the cases where the treatments do fight off the infection, they can cause significant side effects, including fatal heart or kidney damage. Panning out a bit, suddenly the abdominal pain, hair loss, and swollen everything don’t seem so bad after all.
I have quickly learned first-hand that treatments fall short. The available prescriptions–both oral and intravenous–are hit-or-miss, working for only 60% of patients. There is little research on PubMed, NIH, and the CDC websites documenting what works, what doesn’t, or what factors make one more or less susceptible. The naturopathic practitioners I’ve seen give suggestions, but nothing can be objectively backed up. I’ve tried ozone therapy to oxygenate my blood, as well as the naturally anti-fungal oil of oregano, aloe vera, and raw garlic. So far, nothing has seemed to help.
I spend hours each week feverishly seeking answers, but no one has any definitive answers. Valley fever really is one hundred different diseases. Everyone has their own unique presentation of symptoms, and everyone responds differently to treatments. This orphan disease makes me feel like an orphan myself–vulnerable, scared, and uncertain of my future.
Once the fungal spores are inhaled, they begin their potentially deadly voyage through the body, and nowhere is off-limits. Traveling through the bloodstream, the microscopic spores can attack everything from the lungs to the brain. It can rupture the skin, causing painful and unsightly abscesses. It can destroy joints, stealing away strength and mobility from those affected. And, just as you start feeling better, you relapse–an occurrence which cannot be allayed with healthy habits.
Preliminary research shows that immunization against the disease holds promise, but funding for vaccine research has been scarce. In the last few months, strides have been made in the right direction. If everything goes according to plan, Phase II trials of a new fungicide, Nikkomycin Z, will open in May 2019 and, if successful, the vaccine will be available to the public by late-2021. Due to the nature and severity of my infection, I should be eligible to participate in the Spring 2019 clinical trials.
A question that has been knocking away at my brain like a woodpecker is that regarding long-term health implications. Is the severe fungal infection paired with the long term consumption of toxic anti-fungals going to shorten my lifespan or compromise my future quality of life? I’ve been interested in the topics of longevity, nutrition, brain health, and physical performance for years, and constantly check the latest research and follow forums and podcasts that do the same. After a lifetime of healthy eating habits and exercise, how much of an influence could this infection have? Across all platforms, there is almost no mention of valley fever.
In talking to my doctors and naturopathic doctors, I have been assured that fungi aren’t like bacteria, parasites, and cancer cells. I can adopt a vegan diet and eliminate sugar, but the fungi will likely still thrive in the warm, damp bunker of my body. I can eliminate stress and try re-incorporating light exercise, but it’s unlikely to send the fungi cowering into the corner. Basically, valley fever is a game of cat and mouse–and it will be until an effective vaccine is developed.
It makes me highly uncomfortable that I have a severe and incurable infection that is not responsive to the available treatments. It makes me frustrated that the best answer anyone can give me is that “everyone responds differently.” And it makes me upset that so few people seem to care about those who are suffering and trying to help their own bodies heal. I feel so very alone in my journey. I know that I’m not the only young, previously-healthy individual to be tackled to the ground by the disease, but I get the impression that we’re few and far between.
I’ve been revisiting my college Biology textbooks and was reminded that human cells and fungi share several common features. Since the core structure of fungus resembles our own so closely, researches have been confounded as to how to destroy one while protecting the other. Though current treatments try to achieve just this, there are still serious risks to the liver, kidneys, and other organs when dispensing treatment. Thus, the current standard is to administer just enough of a drug to control the fungus infection, but not enough to harm the patient.
With my symptoms seeming to worsen on a weekly basis, I’ve been feeling especially discouraged these last few days. For the last several weeks, I’ve join my boyfriend in his low-FODMAP, low-sugar, vegan diet in hopes that some of my symptoms would subside. I’ve been practicing morning mediation and journaling consistently for the last few months. I am trying to stay positive by reading inspirational books, listening to interesting podcasts, and filling my waking hours with activities that make me feel alive–cooking a meal, writing, dissembling and reassembling appliances, and watching Meerkat Manor while snuggled up next to my boyfriend.
I keep asking myself what I could do better. I keep questioning what I did to cause this. Though I know, quite definitively, that both the initial infection and eventual dissemination were chance occurrences–pure bad luck–I keep seeking something, or someone to blame. I want to know why. And though I know that I’ve done my research, asked the right questions, shared all reverent symptoms, and pursued all Western and Eastern treatments available, I can’t help but feel that I’m responsible for my body’s responsiveness to treatment.
But what do you do when the top professionals tell you that you’re already doing everything you can? Whenever I catch myself drowning in the sea of blame, I remind myself repeatedly that I have always treated my body with kindness and care; I speak lovingly to myself until I reach the surface and inhale sharply, eyes welling with tears. This dance has been a near-daily occurrence, as I grapple with the fear, uncertainty, and overwhelming sense of vulnerability that comes with the diagnosis: it’s disseminated valley fever, and it’s one of a hundred different diseases.
My beautiful friend, I’m so sorry you’re going through this. I completely understand the feeling of being alone with the disease especially at a young age, the recurring questions of why, challenges of treatment, and fear for the future. Though our predicaments are different, we ironically experience very similar things. Thank you for sharing your story on a condition I knew nothing about. Know that you are an inspiration, and are impacting other souls on the other side of the monitor with your courage and openness. Wishing you nothing but light and love ❤️✨
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I am so happy that we’ve found each other out here in the vast interwebs. 🙂 They say “write what you know” and right now, this is it: fear, questions, and the heavy stuff. Though it’s not what my cerebral/creative brain *wants* to talk about, it’s been incredibly cathartic to share my thoughts and experiences, and so wonderfully reassuring to have others read, understand, and wish me well. I suspect we will both continue to heal our bodies, strengthen our minds, and nurture our souls in such a way that we can look back on the struggles with gratitude. ❤
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