My Fault Entirely

When my symptoms first presented, clearly I was in denial. I am writing this now five months later and I still resent myself for being so.. stupid. Why is it that when we are clearly sick we still refuse to believe it? I was still in the United States when my rash presented. I could have taken a few hours out of my day, called my travel insurance, and stopped at a clinic where they would have given me a few pills and sent me on my way. I would have never gotten sick.

I was anxious to get home and didn't consider Lyme when I was making the drive. But by the time I arrived in Quebec, my mind was reeling. I was afraid to pick up my baby nephew because I seriously thought maybe it was ringworm and I didn't want to give it to him. But there was something that nagged me in the back of my mind, and that something led me to take a picture of my rash and send it to my dad. Why did I send it to my dad? A seasoned hunter, he was the family expert on ticks and Lyme disease. He had been infected, twice. He told me to go get it checked out right away.

And did I get it checked out right away? No. Even though it was in the back of my mind that maybe it was a Lyme tick bite, I refused to acknowledge that was true. I thank the Quebec medical system, because most of all I really didn't want to wait hours and hours in a walk-in clinic for nothing. I pushed the thought out of my mind and continued on with normal life.

Eventually the rash faded away, and there I was thinking it was probably just ringworm or a spider bite and I was happy I had nipped it in the bud. And when I experienced the onset of flu symptoms, even though it was early June, I was in denial again. I figured it was something that was going around the gym and waited for it to pass. But it didn't pass, it got worse. I went through a few days of insane hypochondria, I thought Lyme, West Nile, lupus, scarlet fever, brain tumor-- clearly the brain fog was kicking in around that point. I knew something was wrong. Emotionally I felt like I had severe PMS symptoms 24/7, and my body was fluking out on me. But it took a lot of convincing and a little bit of research before I consented to "Go to the doctor to rule out Lyme" to ensure it was just the flu.

Normally, when I have the flu I don't feel the instinct to go to the doctor to make sure its not something else. Although I was cloudy and crazy, my intuition had been just strong enough to push me to go see a doctor. Anyway, as I mentioned in an earlier post, I walked out with a diagnosis and a prescription.

You would think my testimonial of guilt would end here, but.. naturally.. it doesn't. If I could change a second thing-- the first being seeing a doctor right away-- I would have taken my treatment more seriously. They told me I was allowed to consume alcohol, so I took advantage of that. To make matters worse, I was too stubborn to take time off work to allow my body it heal properly. And so speaking, because I had missed two weeks due to vacation I was stressed to the max trying to catch up while suffering through my symptoms.

Instead of eating a healthy diet to help my body fight the infection, I ate junk food and carbs-- that was all my body wanted, and I didn't have the energy to cook for myself. Now I blame that on the bugs in my brain that wanted me to feed them a continuous supply of sugar and gluten so they could thrive. I wish that all the research I had done in August had been done in June. If I had taken care of myself, I think that the two weeks of antibiotics may have actually done their job.

So it is my fault. It is my fault entirely that I had to suffer even longer than I should have. I don't know why I feel the need to write this now that I am almost feeling completely better.. guess I just had to get it out. Just don't be like me, people.

The Days of Doxycycline

I thought that once I had been diagnosed and started the proper treatment for Lyme, that my worries would be over. The doctor assured me that luckily I caught it early enough that after two weeks of antibiotics I would be just fine. She said that even if it were not Lyme, the antibiotics would be strong enough to kill whatever it was that I did have. "If you don't start to feel better after about 4-5 days, come back," she said.

The pharmacist gave me the rundown on the precautions I had to take while being treated with doxycycline. Stay out of the sun. Take probiotics. Don't lie down within an hour of taking the pills. I was not to ingest any calcium-- meaning no vitamins, no dairy, and also some of my preferred health-nut foods such as kale, spinach, and certain nuts. I felt like I had to change my diet entirely. Lack of energy to cook and lack of ideas led me to eat like crap for two weeks. I lived off of bread, leftover birthday cake, and pizza (so, I cheated a little). The pharmacist said I could drink alcohol, moderately, so I did that too. I was uneducated. I didn't know that Lyme thrives off of sugar. I didn't know that gluten only intensifies the inflammation in your body, thus making the symptoms worse.  I didn't know that alcohol and caffeine are a huge NO! in the Lyme diet.

At that point, I thought that the treatment-related precautions I had to take would be the worst part! I laugh at that thought now.

I also have this problem where I am so dedicated to my job-- at this point I was the manager of one of the most renowned mixed martial arts gyms in the world-- that I still had to work. I had just been on vacation, I had so much to catch up on, I literally had a to-do list with 20-30 items on it. I gave myself shorter shifts, occasionally taking a sick day when I felt like I really couldn't handle it. I delegated tasks, but still found myself being bombarded with phone calls and messages from 8am-10pm, as is the job of the supervisor of any business.. always on call..

None of this helped, clearly. I wonder if I had taken my Lyme disease more seriously, if I had known everything I know now, if I had taken those two weeks off to rest and made the effort to eat properly, if that would have been enough to kill what I jokingly referred to as "the bugs in my brain."

Because, after 4-5 days of treatment, I didn't feel better. I felt worse. My misery peaked around then, where I clearly remember being at work and telling my boss very frankly "I feel like roadkill." Literally. I felt like I had been crushed by that truck that hit me the week before (see previous entry) and was left in the road, half alive, to slowly bleed out and die.

I thought maybe my suffering was a side effect of the meds. On Twitter I wrote about the epic battle between the little orange fighters  (doxycycline pills) and the bugs in my brain, turning my body into a desolate battleground.



To make it worse, even though I was taking probiotics, I developed a yeast infection after about a week. Every woman's joy. The pharmacist, who I'm sure must have known me by name by then, told me that since I had another week of antibiotics, I would have to take treatment for the yeast infection for that entire week as well, or else I would likely develop another one again. So I'm suffering from Lyme disease, miserable because of the lifestyle/dietary restrictions I'm under, and on top of all that I have to deal with a yeast infection and the unpleasant treatment that comes with it. I couldn't wait until I finished my last dose of doxycycline. 

My actual symptoms were most intense during the first week of treatment. Over time, they evolved. Some symptoms went away, to be replaced with new ones. I wasn't sure what was the side effect of the meds, what was general weakness from my body fighting the infection, and what was the actual Lyme. I thought maybe I was getting better, but I was just so tired.  Taking a shower was a chore; washing my hair was a daunting task.

When just the act of driving to work made me fear for my life, realizing that I was too disoriented or too dizzy for this to be at all safe, I had to put my foot down. I decided that I would have to cash in on the rest of my vacation days, because I had to stay home and truly get better. I told myself I would not go to work until I was cured.

Thankfully, at this point one of my best friends offered to drive up to Montreal from Sherbrooke, almost two hours away, to spend the weekend with me and help me out. I live alone, you know. I was just barely able to take care of myself, so it was nice to have someone to feed me and to drive me back to the doctor.

And that is where I leave you for today. Back to the doctor we go, in my next post.

"It'll never happen to me" Syndrome. Infection, denial, and diagnosis.

It was early June. I arrived in Connecticut and was greeted by the kind of weather you never want on your vacation. It was cool for the season, it had been raining for a week. By the weekend the rain abated and I was finally able to spend some quality time with friends. I didn't think twice about venturing into the woods to go for a joyride in my buddy's death mobile, wasn't concerned about cutting through a bushy path to get from one house to another, had a little too much to drink when I decided to wrestle with my friend in the grass. It could have been any time that day that a tiny insect found its way onto my skin and settled in for a little snack. 

Later I would learn that it was the perfect storm. The location, the time, the weather, all of the conditions were ideal to put me at the highest risk of infection. I grew up in Connecticut. My dad, a lifelong hunter, was infected with Lyme disease twice. I should have known better, but perhaps the last few years of living up north and then becoming a city dweller dulled my good sense. It might have been my love of drinking a good summer brew all day on a boat that caused me to only half remember a month later that I might have brushed an annoying speck off of my arm at some point during the day.

My uncharacteristic and misdiagnosed Lyme disease rash

All I know is that two days later on my drive back up to Canada, I became fixated on an irritating rash on my arm. Only when I got home did I stop and take a good look at it. I took a picture and sent it to my dad, asking what he thought. He told me to get it checked out right away, but naturally I didn't. I assumed it was the beginning of ringworm, something common in gyms, and I had indeed trained jiu jitsu while I was on vacation.

The rash remained for a week. I still believed it was either ringworm or a spider bite (come to find out, this is a common misdiagnosis). I treated it with both topical antifungal and Benadryl, assuming one of the two would work, and after a week the rash went away.

Characteristic "bulls-eye rash" associated with Lyme disease

Did I suspect Lyme? Yes. But I quickly dismissed the idea after a quick online search yielded rashes that looked like a bulls-eye, and the fact that I couldn't stop scratching the damn thing was contrary to claims that Lyme rashes don't itch at all.

 

 

A Classic Portrayal of Lyme Symptoms

Around the time the rash disappeared, and this puts us at around Days 7-10 after I believe I was bitten, I came down with flu symptoms. I first experienced a hangover worse than usual, and uncharacteristic low energy during training. Then my throat was sore, I had a dry cough, and I just felt like crap. One morning I woke up feeling like I had been hit by a truck. I broke out in a feverish sweat mopping the mats at the gym, and the task sucked all the energy out of me. *The list of symptoms became longer. As time passed, the symptoms fluctuated and evolved, but I will discuss it in a future post.

Around that time, others had been complaining of similar flu symptoms, so again I didn't think much of it. I expected it to pass over the next few days. Then I heard from my friend JP, who is a "Lyme survivor" if you will. He saw one of my complaints about feeling sick on Facebook and sent me a message "Whats your symptoms? You got me worried because you were in Lyme country." By the end of this conversation, he gave me the coordinates for his doctor and didn't leave me with a choice. He made me realize that if I had even the slightest suspicion of having contracted Lyme, I needed to get it checked out right away.

I remember what did it for me. JP sent me to the CanLyme website and as I read the extensive list of symptoms, what stuck out to me the most was the psychological and neurological symptoms. Since my return to work that week, I had suffered from extreme mood swings, anxiety, panic attacks, insomnia, depression-- it was like the most severe PMS I ever had. I felt like an idiot every time I talked to my boss because I couldn't think straight, my worlds came out jumbled, I felt that "brain fog" that Lymies know very well. I thought it was simply a difficulty readjusting to work after being on vacation, but when I saw those things on the list of symptoms something just clicked inside of me. 

I walked into the doctor's office with the intention of "ruling out Lyme" as a possible culprit for my summer flu, only for her to confidently diagnose that I did have it. I walked out of the clinic with a prescription for two weeks of doxycyclin and the realization that this entire time, deep inside I must have known. I had all of the classic symptoms of Lyme infection, symptoms I had always thought I was well educated about. Maybe I was afraid to confront the possibility that I had contracted the "worst fear" disease my parents instilled in me since I was a kid.

To top off what is already a long post, I just want to share the things I didn't know. The reasons I had been in denial and didn't see a doctor sooner, because it is important.

Facts that I didn't know about Lyme disease and why I didn't see a doctor sooner:

• Ticks are most active after periods of rainy weather, and spend time "ambushing" potential hosts in grass and bushes on the sides of paths
• The month of June is prime time for Lyme infection
• A tick does not have to be on you for 24 hours in order to get infected. It only has to be on you long enough for the bacteria to get from its stomach to your blood stream
• Not all cases of Lyme present with a bulls-eye rash. According to the CanLyme site, "over 50% of people report no rash of any kind" and only 9% of Lyme cases are identified by rashes in the form of the characteristic bulls-eye, otherwise the appearance of the rash can vary greatly.

And finally, the reason for this blog and all of the posts you will read after this one...

Lyme is not like a case of strep throat. Contrary to certain literature and what some doctors say, it is not a guarantee that Lyme disease can be completely cured with two weeks of antibiotics-- even if you get treatment as early as I did-- and is a condition that needs to be treated seriously.

My biggest regret is not seeing a doctor as soon as that rash showed up. I wish I had seen it before I left Connecticut and gone to my doctor there right away. Because it was within 48 hours of infection, he would have given me a few pills, and I probably would have been fine.

Welcome to my life with Lyme disease

If I had known that my experience with Lyme disease was going to be the way it was, I would have started this blog on day one. I don't want this to be a "how to" guide on how to deal with such a debilitating and emotionally trying disease, because I have yet to figure that out for myself. To tell you the truth, what I was and still am dealing with now is not anywhere near the level that many many others have suffered through. But I still feel the need to share my experience and what I learned from it. If anything, just to have a positive outlet for the thoughts and emotions that plague me every day. I know I am not the only one going through this experience, and I find some comfort in reading the words of others. Maybe one day someone will feel the same about the words on this page.

In one month I will be turning 26 years old. When I got sick I was in the best shape of my life. My body was reaching a level of fitness and athleticism that I never anticipated. I was the picture of perfect health. I started every day with a green smoothie and ate clean all day. Upon finishing work I would reward myself with a solid run, or weight training, or a Brazilian jiu jitsu class. I did yoga every morning, and on my rest days again at night. I looked great, I felt great, everything was just great.

Until I went on vacation in early June 2013. I went to Connecticut to visit my friends and family, and came back to Montreal, Quebec, with the worst souvenir you could possibly imagine. Two weeks after the day I believe I was bitten, I went to a doctor to "rule out" the possibility of Lyme, as I was having suspicious symptoms.. and instead found it to be confirmed.

What I expected to be two weeks of antibiotics, followed by a swift return to normal, became a summer that never existed. Life in an empty shell. Not being able to go to work. Not having the strength nor the will to move or even eat. The mental anguish and physical pain that you would never think would have come from a creature the size of the tip of a pin. And a lot of learning about this elusive disease, the political dilemmas surrounding it, and realizing the truth about recovery.

I will start from the beginning. With thanks to social media, my personal journals, and my cell phone's data for helping to jog my memory. I will go back and relive every detail for the purpose of hopefully being able to put it behind me and move forward. And hopefully by the time I finish with this blog, I won't need it anymore. Hopefully I will have found a "new normal," where maybe I won't be able to train every day or eat whatever I want, but simply won't feel sick all the time.

Thanks for reading. And wish me luck.