A Mysterious Case of Chills, Fatigue & Body Aches

A true story about a disease in our own backyards

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Today I’m thrilled to present a guest post from my dear friend Alyse Graham. It’s a cautionary tale about a mosquito-borne illness in our own backyards.

Let me know what you think in the comments section, and please share it widely!

❤️ Lucy

Photo by Anchor Lee on Unsplash

A true story

It’s back to school time, so I’ll start this guest post with a quick pop-quiz: what living creature has caused more human deaths over the course of history than any other?    

Bear?

Shark?

Killer bee?   

Answer: the mosquito. 

Five years ago, I found out what a serious punch those little f*ckers can pack. In late July 2019, I was a healthy and active middle-aged woman enjoying a summer of bike riding and backyard cookouts when I suffered a sudden bout of severe back and leg pain with no obvious explanation. When the pain became excruciating, my son took me to the emergency room where I was evaluated, then promptly sent home with ibuprofen and a pat on the head. 

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Over the next few days, the pain turned into a nearly complete loss of motor function in my left leg. Sitting in a chair, I could not lift my leg at all, not even a millimeter, no matter how much my brain willed it to move. When I tried to walk, my left leg dragged behind me. It was an incredibly odd feeling to “hear “my brain telling my leg to do something – something I had done many times a day my whole life – and to have my leg simply not respond. 

The left leg paralysis sent me back to the ER, where I started developing strange viral symptoms – chills, fatigue, and body aches, but no fever or respiratory symptoms. I was in the hospital for five days, during which I developed troubling cardiac symptoms including bradycardia (a dangerously low heart rate). At the hospital, I was seen daily by alternating — but frustratingly (despite many requests) never simultaneous – visits from neurologists and infectious disease specialists. I had two spinal taps and multiple blood tests, but the doctors were stumped. There was still no diagnosis — and no ability to move my left leg — however I was deemed stable enough to go home on a strong dose of oral steroids.

The hardest part of the following week wasn’t the multiple spine and brain MRIs, the neurologist and cardiologist visits, or the few nights of searing nerve pain; it was still not having a diagnosis. I desperately wanted to Google the hell out of something – anything – to understand what was going on, but the doctors seemed only to be able to tell me what I did not have. (One doctor opened our appointment  saying, “I thought it might be MS (multiple sclerosis),” only to clarify that the tell-tale markers for MS were not on my MRI. Yes, I wish she had led with that). Finally my husband, dutifully checking the various electronic patient portals with my test results, screamed out “It’s West Nile Virus!” It was one of my very last hospital tests – and the result came back positive. 

A Medical Education

I would soon learn that although West Nile Virus (WNV) was the cause of my condition, it was only the start of my odyssey. The virus is transmitted through a mosquito bite, which pushes the virus into the bloodstream. From there, WNV can have a range of symptoms from none at all (about 70% of cases are asymptomatic) to mild flu-like symptoms to a full viral wallop of chills and severe body- and headaches.  

But in a small minority of cases – about 1 out of 150 – the virus becomes “neuro-invasive,” meaning it inflames the central nervous system, attacking neurons in the brain and/or spinal cord. In my case, this spinal cord injury caused me to lose the motor function in my left leg. In other cases – particularly in the elderly – it can lead to more serious neurological damage, including brain swelling, organ failure, and death.   

There is no treatment or antidote for the virus, and once it successfully attacks the spinal cord, the damage is done. (Unlike Lyme disease, which many friends understandably but mistakenly thought I had and which is treated with antibiotics, there is no pharmacological treatment for West Nile Virus or its nervous system consequences). So, in just a few weeks, the muscles down my left side from my waist to my toes had shriveled. They simply were not getting any electrical signal to keep them alive. And not being able to use my leg meant my muscle tone was dwindling. From powering me through a 60-mile bike ride, my leg had shrunk to half its size.  

Beyond the Prescription 

While it was relieving and clarifying to finally have a diagnosis, the answer of what to do about it had almost nothing to do with medicine or pharmacology: I had to “work” my muscles back to life, trying to fire as many functioning nerves as I could while the damaged ones slowly regenerated.   

I began an aggressive physical therapy program at Baltimore’s Kennedy Krieger’s International Center for Spinal Cord Injury (ICSCI) where I worked my left leg for 2-3 hours a day, 3-4 days a week, repeating the exercises on my “off” days at home, for about five months. But for all that effort, all I had was a still-atrophic left leg that grudgingly started to do some of the very basic things my brain asked of it, like lifting my leg off the floor or holding me up when I stood.

Five years later, “rehabbing” my leg has taken up far more time and energy than I would ever have wanted to devote to my body without an Olympic medal to show for it. But the work has paid off: I am back to miles-long bike rides and was thrilled to return to playing tennis last year. The weirdest thing is that despite all that healthy and vigorous activity, I still often struggle to walk more than a few blocks without limping and feeling hip pain. The many small muscles of the foot and lower leg are the last to regenerate and the hardest to work, but also central to the “push off” required of walking. So it looks like that basic human activity — more so than any other — will take more work before I’m really back at it. 

Why did I ask Dr. McBride if I could share my medical mystery with you? A few reasons:

‘Tis the season

First, the time is unfortunately right. Anthony Fauci was hospitalized just last month with West Nile Virus, contracted, like mine, from a Washington, DC, mosquito. And while WNV cases are most often reported in August and September, we are far from “out of the woods.” Longer summers and milder winters brought on by climate change have meant that mosquito season extends well into October and in places it did not use to.  

Dr. Fauci is also a fitting reminder of the lesson we learned from COVID: disease typically hits older adults harder and more readily. That is certainly the case with neuro-invasive WNV, which disproportionately affects people over 70, and, in that age group, twice as many men as women.  (One of the reasons my case was so hard to diagnose is that it is so rare to have a neuro-invasive case in an otherwise healthy, active younger person -- but clearly not rare enough!) So this is a reminder not only to take precautions for yourselves but also to spread the word especially to older or health-compromised people in your life. This would be a great time to visit an elderly neighbor with a coffee cake or casserole and a can of OFF. 

Prevention is key

Second, speaking of precautions, I wanted to share with you a little guidance that goes beyond “wear long-sleeves and use a bug spray with DEET” (which is, in fact, great advice that too many of us ignore when we’re outdoors and the sun is going down):

West Nile Virus is a local and neighborhood problem: Mosquitos typically have about a half mile flight radius, so here are two things you and your neighbors can do to take care of yourselves and each other:

1. Take regular “standing water tours” of your property starting in May. Put mosquito dunks in drains, birdbaths and gutters, and look for planters, children’s toys, grill covers and other places where water collects and stands. One of my recurring post-infection fantasies was that neighborhood preteens might be pulled out of summer boredom and put to work finding and treating or emptying mosquito breeding grounds. Many neighbors turn to mosquito spraying services to make their backyards more habitable in the summer, but, as I understand it, those sprays kill just the mosquitos on site while doing more damage to beneficial insects and wildlife.

2. Be vigilant about “carrier” birds. Birds — especially crows and blue jays — can get infected by mosquitos and hold huge concentrations of the virus in their bloodstream. (They are huge virus sponges, as one researcher called it). These infected birds act as reservoirs for the virus – providing a large source of infected blood that can be spread by many mosquitos at once – because mosquitos bite birds (including dead ones) as well as humans. Our neighborhood in Washington, DC, has a huge crow population, possibly because of our nearby restaurant corridor with its many dumpsters. If you have a crow problem, be especially vigilant in your prevention efforts. And if you see a dead crow or blue jay in your neighborhood, call your local health or wildlife department to remove it safely and quickly. (Note that WNV is extremely uncommon and almost never fatal in dogs.)

Working new muscles

Finally, I wanted to share my story with you because I thought one last lesson might resonate particularly with readers and admirers of Dr. McBride. Lucy, who is a neighbor and good friend (and, although she was not my doctor, helped more than anyone else to get me great medical care during the acute phase of my odyssey) has – as you all know best — focused intently in her work on the connection between mental and physical health and on the importance of treating the whole patient.    

When I look back now on my experience, I see that what for months felt like a grueling physical ordeal was actually a years-long emotional evolution. For most of my life, I had a pretty type-A formula for confronting challenges: work + will = problem solved. Since childhood, when I have encountered obstacles, I would work to exhaustion and then will myself to work harder. During those months of extended physical therapy sessions, I reflexively – and my husband would say ferociously – brought those traits to bear.

But it turns out that a different skill set brought me more healing than even having two working legs. Over the last five years, I’ve had to cultivate habits that just weren’t as present in my repertoire, habits like softening and surrender, self-compassion and humility. Learning and practicing these were a whole different kind of “workout” for me, with results I could not check off against an external task, but had to experience and yes, enjoy, wholly from within. Perhaps most unexpectedly, these new practices opened yet more midlife “hidden doors” for me, leading to new insights, richer experiences, and deeper relationships. 

Talk about building new muscles….

Thanks for reading!

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Disclaimer: The views expressed here are my own and are not a substitute for advice from your personal physician.