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Lost in Symptom-land: How to Live Life When Doctors Don’t Know What’s Wrong with You

The only thing worst than hearing a terrible diagnosis is “all your tests look normal.”

Let me start this by saying that I’m an English teacher, not a doctor. Literally none of this is medical advice.

Last fall I came home from school on a Friday, and I felt like I’d been hit by a train. My head was pounding to the point that I felt nauseous, and I was struck with terrible fatigue. I’m a teacher, so I’m used to getting sick a few times a year, but this felt different. I slept for an hour, then went to our school’s football game to take pictures for the yearbook. I slept most of the weekend.

But the next week, I still felt sick. And the week after that. This felt like a cold, but I wasn’t congested. Oddly my cheeks hurt, and by 1pm everyday I had zero energy left. I know what it is: it’s a sinus infection. I’d had sinus surgery the year before, and my nose was really sensitive now. I went to my family doctor and said, Here’s what I’m feeling. You know I had this surgery last year. Could this be a sinus infection? He said, “Probably, let’s do some antibiotics.” First round, not enough. Second round, I started to feel better.

But then I got another sinus infection in the winter. No fevers, no congestion or drainage. But that old head pounding, face hurting, total exhaustion experience. More antibiotics. Then in the spring I got a cold and afterwards…another sinus infection. This time, the antibiotics didn’t fix the headaches; the fatigue was worse, and I started feeling disoriented. Something wasn’t right. I wanted to play with my kids, flirt with my wife, and fix that drywall in my daughter’s bedroom. But I didn’t have the energy. I’d come home from work so tired that I wanted to cry, and honestly, sometimes I did.

I asked my doc to test me for lyme. In the last year, I’d started photographing birds, which meant that I’d been spending hours hiding in meadows with tall grasses. I never saw a tick bite, but who knows. I spiked high for the lyme antibodies, but only reacted to four of the ten protein strands they test (you need five to be positive). The lab marked it negative in the patient portal, and my doctor and I never discussed it.

I went to see my ENT who’d done my surgery. He did a CT of my sinuses: All clear. He said, “Everything looks good here. These sound like migraines. I’m going to set you up with a neurologist.” I wasn’t happy, and I let him know – clearly this was a problem with my sinuses, and he wasn’t listening. The fatigue was getting out of control, which increased my anxiety and decreased my sleep, which made me even more tired. The neurologist’s first opening was three months away at the end of summer.

I met with the neurologist, and she said none of what I’d experienced actually sounded like sinus infections to her. She suspected migraines but cautioned me that chronic fatigue can come from a hundred different illnesses. She did bloodwork, an MRI of my brain to check for anything scary. All normal. I increased hydration, started taking B2 (it supposedly helps with migraines), and really focused on regimenting my sleep schedule.

School started, and once again I couldn’t keep my energy up. I had a nagging feeling that the answer was in front of me. I started reading more about lyme disease: Apparently a lot of people never see a rash from a tick bite. Some of the major symptoms are chronic fatigue, a sense of disorientation, and migraine headaches. And the latest published studies say you don’t need five of the proteins to be positive.

I went back to my family doc and laid everything out for him: Here are all the doctors I’ve seen. Here’s every test I’ve had done. Here are all of my lingering symptoms. Could this be lyme?! He looked at my initial lyme test results and said, “Yeah…it’s lyme. The lab marked it negative because you only reacted to four proteins, but as far as I’m concerned, this is a positive.”

I’m nearly finished with my month-long round of antibiotics, and I’m hoping that it knocks out the lyme completely, but I may still have a long road of recovery ahead of me. Here are some things I learned throughout this last year of medical turmoil.

Don’t Google Your Symptoms

Here’s the problem: Whatever your symptoms are, there is some kind of cancer with those same symptoms. And when you have generic symptoms like mine (headache, fatigue, dizziness), the internet will tell you that you might be fine or you might die in the next two weeks.

The older I get, the more I realize the degree to which my mental health affects my physical health. The more anxiety I have, the less I sleep. And the less I sleep, the harder it is for my body to heal itself. And looking up all of my symptoms on the internet so I can read about what I could have only increases my anxiety.

So what should you do instead of looking things up? Go talk to your doctor. Here’s the thing: Your doctor went to medical school; you didn’t (if you did, then you already know this). Truth be told, next time I see my ENT, I owe the guy an apology. I thought he was slubbing me off onto the next doc; but he was using his expertise to the best of his ability. And lyme can cause migraines, so he was actually right.

When you talk to your doctor, don’t just tell them your symptoms; tell them what all has been going on in your life. I decided that my issue was in my sinuses and handed that diagnosis to my doctor. Yes, I’d had sinus surgery, but in that last year I’d also moved into a new house and started spending significantly more time outdoors. Maybe if I’d said all of that, he would’ve connected the dots because he does this for a living: “Bird photography? Where are you doing that? Have you seen any tick bites? Let’s test you for lyme just to rule it out.”

Be Persistent

In the last year, I’ve seen my family doctor, my ENT, another ENT who specializes in dizziness, a neurologist, and a psychiatrist (because I was starting to think this was all in my head). Each of these doctors helped me rule out different illnesses. And each gave me new data via blood tests and imaging that I could use to narrow down my issue.

This has been exhausting, endlessly frustrating, and the copays have added up to a small fortune. But I’ve known for a year that something wasn’t right in my body. Once I started reading more about lyme, my wife said, “I feel like you’re deciding you have lyme disease.” I said, “No, I’m not. I’m deciding that it’s still a possibility, and I want to have that conversation with my doctor so he can either confirm it or rule it out because it occurs to me that we never actually discussed the results.” And if my doctor had said no, it’s not lyme, then that’s one more sickness I could cross off the list.

You’re not supposed to feel sick for a year. Don’t give up and decide this is just your life now.

You Still Have To Take Care Of Yourself

When I first saw the neurologist, she asked me how much water I drink in a day. Um…I have coffee in the morning, some water at lunch, and then some water with dinner. That good enough? No. One of the leading causes of headaches is dehydration, even if the headache is also being caused by an underlying illness. Now I drink at least 40 oz. of water every day, and I aim for 60.

She also asked how often I exercise. Well…before I had kids, six days a week. Now? I exercise when I can, but I’ve been so tired for a year that it really hasn’t happened. We all know that exercise releases endorphins, which are your brain’s natural pain killer. Exercise helps you fight disease and keeps your heart strong. The neurologist told me that I don’t need to go crazy. Aim for three times a week for half an hour. She said, “Even just taking a walk around your neighborhood after dinner counts. Get up, move, your body needs it.”

Your body can’t heal without consistent sleep and a healthy diet. Again…you know these things, and so do I. But life happens, and sometimes the Big Mac is easier (and it tastes so damn good). Some small changes I’ve made:

  • No more soda
  • Cut down on bread and pasta unless it’s rye (or fresh baked) bread or chickpea pasta 
  • Drink more water
  • Less dairy unless it’s organic
  • More fruits, vegetables, and nuts as snacks
  • Wake up at the same time each day and go to sleep at the same time each night

These aren’t cures for anything, but they’re manageable steps towards better overall health, especially when you feel like you’re already fighting something.

Take Care Of Your Mind Too

I’ve seen my therapist more in the last six months than I have in several years before. The truth is, being sick is depressing. Chronic fatigue, chronic pain, chronic anything will wear on your mental health. And you don’t always realize it’s happening.

At the beginning of the summer, Katie (who is actually a therapist) said, “You need to go talk to your therapist about all of this. It’s too much to process and carry every day, and she knows how your brain works.” And she was right. Katie has been amazing with encouraging me and reassuring me that my feeling sick isn’t a burden to her or our daughters, even when I feel like it is. My health matters more than my ability to perform to a certain standard as a dad and a husband. But I also need someone, who isn’t my wife, to remind me of what I can and can’t control in all of this.

After my doctor confirmed lyme, I went and talked to my therapist and told her that I’ve been reading everything I can about lyme disease. Early caught lyme is easily treated and cured, but I’ve had this in my system for at least a year, which means there’s a higher risk of permanent damage. What if these antibiotics simply aren’t enough? What if I have lasting effects and can’t shake the fatigue?

She reminded me that all of this reading really isn’t helping me. I said, “Well the more I know, the better prepared I can be for the possible worst. I’m using my intelligence.” She said, “No, you’re using your anxiety. Using your intelligence would be reminding yourself that the only thing you can control is what you do today to improve your health. You’re taking your meds; you’re sleeping well, eating well, and exercising. What’s going to happen tomorrow or next week is out of your control. And if you have permanent effects, you’ll deal with those each day too.”

If you’ve been battling a mysterious malady, please know that there are answers out there. Listen to your body, talk to your doctor, and don’t give up.

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