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What Lyme Disease and Its Aftermath Taught Me About Self-Advocacy

Four Things I Learned at a Fork in the Road, Including What I Have in Common With Kelly Clarkson

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Today, I’m a Critical Care Registered Nurse, working in the Medical Intensive Care Unit at one of the largest university health systems in the eastern United States. I’m part of a team that works on the front lines of medicine, caring for patients who are dangerously ill – the sickest people in Appalachia. The work is physically demanding, an emotional rollercoaster, and I love it. There’s nothing else I would rather do.

That’s today. Ten years ago, I was on the other side of the table. I was a freshman at Virginia Commonwealth University, sick with something that my doctors wrote off as mono or the common cold or just some unknown bug that would eventually pass. But I wasn’t getting better. As time passed, I was getting sicker and more exhausted. I’d go to class, fall asleep, wake up when class was over, go back to my dorm and fall asleep again. I NEVER felt rested. 

I started having aches and pains and then began to develop really severe anxiety, because I felt like something else was wrong – because I was having so much pain – deep joint and muscle pain – and Tylenol and Advil weren’t helping. I had reason to suspect that I might have Lyme disease (more on that later) and during one of my visits to Student Health, I even asked if I might have Lyme and should be tested. But no, through it all, I was assured, repeatedly, “This isn’t Lyme…no need to run a test. You’re a college freshman and you’ve got mono”. 

Except I didn’t have mono. 

I had Lyme disease. 

And the way that diagnosis surfaced is a case study in self-advocacy, from four specific angles, including a surprising contribution from Kelly Clarkson.

In retrospect, we now know that my Mom, my Dad and I all contracted Lyme disease during the summer of 2009. We live on a small farm in Loudoun County, Virginia, which is a gorgeous place to be that is also, unfortunately, a well-documented Lyme hotspot. It’s a place where every neighbor has a cautionary tale about a friend or family member with the disease. 

Lesson #1 in Self-Advocacy: Get educated and be willing to stand your ground in the moment. 

Of the three of us, my Dad was the lucky one – his Lyme symptoms were classic, with immediate flu-like symptoms, a positive blood test, and a big, bright bulls-eye rash. He made a quick trip to the doctor and was treated immediately – four weeks of oral antibiotics. 

When he came down with a separate infection six months later, it was anything but classic. The flu-like symptoms were back, but there was no bulls-eye rash and his blood test was negative. Having had Lyme before, he recognized the symptoms and, when the doctor refused care, stood his ground.  As an informed Lyme veteran, he knew that 30% of Lyme patients don’t get the rash, and a similar number get a false negative on the test. He demanded antibiotics and got them, and knocked out Lyme one more time. 

Lesson #2 in Self-Advocacy – Pay attention and objectively document your symptoms, and you may see patterns in the data that might be the key to a cure.

My Mom’s case was completely different, with no rash – just fatigue and exhaustion. She joked that she wasn’t sure whether she had Lyme or was going through menopause. Coincidentally, she had an eight-day course of antibiotics prior to dental work and her symptoms improved. Once she completed the course of antibiotics, the symptoms returned. Feeling like she had been “hit by a bus”, and suspicious of Lyme, she went to see her doctor and described the symptoms she had experienced.

Her physician, Dr. Walsh, whose son had previously had Lyme, quickly keyed in on the reaction to antibiotics. Even though the test for Lyme was negative, Dr. Walsh saw the patterns in the evidence, diagnosed a clear case of chronic, untreated Lyme, and began to treat my Mom immediately. 

Lesson #3 in Self-Advocacy – Be persistent, and get a second, third, or fourth opinion. 

About this time, my mysterious maladies had pushed me to the brink. Down at VCU in Richmond, I would sleep all day, fall into a fitful sleep and then wake up in the middle of the night having a panic attack, because (as I found out later) the Lyme bacteria was attacking my nervous system.

I was in absolute desperation to get medical care – Lyme care – and my Mom was trying to get me what I needed back in northern Virginia. She came down to Richmond and picked me up. I was in so much pain that I could hardly walk so she pretty much carried me out of the dorm. I got to the car and fell asleep immediately. Not from painkillers or any other meds, since no one would prescribe me anything – just pure exhaustion, despite the fact that I was sleeping more or less constantly. 

Back in Loudoun County, we went to see the pediatrician I’d gone to since I was a kid. I was hopeful that she would understand my predicament and help me out, but unfortunately, she, amazingly, ALSO wrote my symptoms off as mono and refused to test me for Lyme. Finally, in desperation, my Mom contacted her physician, Dr. Walsh, who, as a Lyme specialist, really understands the insidious nature of the disease and how to fight it.

Dr. Walsh’s response was immediate and dire.

“Based on what you’re describing, you have Lyme Disease. Come in and get tested and we’ll get you started on antibiotics immediately.”

I had never had a serious illness in my life, but in that moment, I was thrilled. I finally had the confirmation I was looking for, and a medical professional on my side who was willing to treat me.

The good news was that I finally had a diagnosis and there was a clear-cut treatment – Lyme Disease is a bacterial infection that responds to antibiotics.

The bad news was that the weapon of choice in fighting Lyme disease is antibiotics – lots and lots of them – and as my Mom and I would soon find out, those antibiotics are a double-edged sword that we came to know as “hell in a bottle” for the havoc it wreaks on the human digestive tract. I had no idea what was waiting for me. But at that point, I didn’t care. I knew I had Lyme disease, and my doctor agreed. 

Lesson #4 in Self-Advocacy – Be willing to look far and wide for answers and share what you learn. 

That brings us to one more surprising development in this saga of self-advocacy. One of the lingering side effects of Lyme disease and the antibiotics that are used to cure it is long-term disruption of the gut. Many chronic Lyme patients (including my Dad and me) are infection-free but still suffer from extreme food sensitivities that can turn their lives upside down. We’ll be cruising along fine, but then we’ll eat the “wrong” food and be laid low by a daylong migraine or exhaustion so severe we can’t get off the couch. The problem is figuring out which foods are the wrong ones – a mystery that’s driven us crazy for years. 

Conventional wisdom says that we should be pursuing a “healthy” diet – with lots of veggies – a diet that typically includes plenty of gluten-free foods and legumes, like protein-rich soy, peanut butter and other beans. We’ve discovered that those proteins include a little-known substance called lectins that can be dangerous for Lyme disease survivors whose gut has been damaged by heavy doses of antibiotics. Based on our research, we now believe that our family has a genetic sensitivity to lectins that’s been aggravated by the Lyme treatment protocol. We’ve eliminated lectin-rich foods from our diet and are feeling great – truly recovering from a Lyme experience that began a decade ago. 

And here’s the kicker: it’s based on something called “The Plant Paradox”, which my Mom heard about on – wait for it – The Kelly Clarkson Show. 

An unusual source? Absolutely. 

Medically relevant? For us…definitely.

The bottom line is that today, the three of us are doing great. We’ve made dramatic changes to our diet, we’re watching out for each other, and we’re following our four rules of self-advocacy. I’d encourage you to do the same.

Remember the four Rules:

  1. Get educated and be willing to stand your ground.
  2. Pay attention and objectively document your symptoms.
  3. Be persistent, and get a second, third, or fourth opinion.
  4. Be willing to look far and wide for answers and share what you learn.

Charlotte Brouwer graduated from Virginia Commonwealth University with a bachelors degree in Psychology and cum laude from the  Accelerated Bachelor of Science in Nursing at Marymount University. She is certified as a Critical Care Registered Nurse, and for the past five years, has worked as a critical care nurse at the University of Virginia. She can be reached at [email protected] or @CharlotteMarie14.

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