Living in Lyme “hell”

Almost 3 years ago now, Zach and I worked one last summer at our beloved Summer Camp. That summer was supposed to be the best yet; we were both on senior staff, all of our closest friends would be there and as soon as camp was over we would be taking the California road trip of our dreams. Halfway through the summer, right around the time of our anniversary, Zach became ill. His symptoms were very much meningitis-like, but when he went to the camp doctor he was told if he was vaccinated then it wasn’t meningitis and probably just the flu. He was sent on his way with some tylenol for the extreme back and neck pain (he worked in climbing so he “could have pulled something”) and orders to rest. After over a week of this I vividly remember we were sitting in my car and I was looking up his symptoms online. One thing kept coming up: Lyme Disease. It made sense. Zach worked in a wooded area, we were in North-East Pennsylvania, and he spent his days outside. After quite a few warmer winters, the deer population was out of control (I had never seen so many deer before!) so vector borne viruses like Lyme, were at an all time high. I kept reading words like “epidemic” yet no one even thought to test Zach for Lyme. He did not think it was Lyme because he never had a rash or found a tick on his body. If you read up on Lyme, the literature almost makes it seem that you have to present the classic bullseye rash if you have Lyme. This went on for two months, and it was really scary to see such a fit and active young man literally just start to melt away. Zach is not a big guy to begin with, but all of his clothes started falling off of him, he was constantly tired, battling stomach issues and dizziness and he was also impossible to be around. I tried to give him the benefit of the doubt knowing that something was going on but I also seriously considered leaving him because it was so bad and he kept brushing off how awful he felt. When we were in California, he almost fainted 3 minutes into a hike- this is a guy who can get up any random day and run 20+ km with no complaints. It just wasn’t right.

When Zach returned home, he went to another doctor. He was prescribed beta blockers (a bandaid solution) for his irregular heart beat. It was only after he insisted (or I insisted while on the phone with him) that they test him for Lyme.

Not surprisingly, all of the tests came back positive.

May is Lyme Disease Awareness Month and this post is really all about that, to make you aware of what Lyme can look like. Lyme carrying ticks have been confirmed in Toronto (not surprising considering how many cases have been reported by our neighbours directly to the south and our warm winter) so it is inevitable that if you spend time outdoors, you will come in contact with ticks.

Today, Zach is here to tell his story about his experience with the disease. Please read on and share.


Facial Palsy- one of the many symptoms

Facial Palsy- one of the many symptoms

So this is a story about Lyme disease. This is a story about the often misdiagnosed tick-borne disease that’s quietly causing disarray in the medical community. I’m not going to speak in absolute medical terms here (I’m not a doctor); I’d rather speak about this from a personal side. So here we go.

Late summer 2013 – I had just finished working my last of 3 summers at Island Lake, where I met my amazing wife Ali. This summer at camp was unlike any of the other 2 summers though. It will always be remembered, for me, as one of the worst summers of my life, and now how I wanted my last summer to go. However, camp wasn’t ruined for me because of the usual reasons – a relationship gone wrong or an insufferable boss. That honour belongs to Lyme disease. I’ll remember the sequence of events forever, like they happened just the day before. It started with back pain and progressed through various other types of symptoms until I literally hated everything and everyone in my life. Hate is a strong word, but the irritability associated with Lyme disease is the real deal. For example, on our post-camp vacation in California, Ali stepped on a wasp, barefoot while walking along the beach. In a Lyme-induced rage, I told her off and made sure she kn ew that she was inconveniencing me by being a human that feels pain. Lyme-me was a truly dickish guy. So this leads me to the bulk of the story.

What exactly was I feeling? There’s no good answer here for what I was feeling throughout this whole experience. With Lyme disease, it really seems like the Universe throws the kitchen sink at you. I mentioned back pain (which made me double over) and I wish that was the worst of it. They say that Lyme starts off like meningitis and then it’s everybody’s guess, what’s next. Well, that’s true. I had:

•Fevers

•Irritability/hatred towards everything

•Diabetes-like bladder control

•Hot flashes and dizzy spells that ended with me blacking out at really inopportune times

•Night sweats

•Facial palsy

•Heart palpitations caused by fluid and swelling around my heart

•Constant light-headedness

•No appetite (and resulting weight loss)

•Depression

•Insomnia

•Nausea

•Fatigue

•Slight alcohol intolerance

•Etc. Etc. Etc., the list goes on

But forget about the symptoms. They’re scary as a whole and all, but the scariest thing about Lyme is that there are no standard symptoms. This disease is f*****g scary; absolutely scary. And it breeds a sense of hopelessness in most of its prisoners. My treatment was gruelling (I’m not trying to compare this to chemotherapy, etc.), with a 3 week oral antibiotic regimen followed by a 3 week IV antibiotic regimen with twice-a-day infusions, after my EKG and echo revealed worsening heart irregularities. To this day, I assume that treatment completely worked, and mostly, I do live a normal life. It wasn’t an easy recovery process and it did take some time to feel normal again. However, I notice tiny things that are different about this “new” normal life – I’m more generally fatigued, I struggle with my alcohol tolerance, my digestion has never quite been the same and every so often I feel my heart pumping abnormally.

But in classic Lyme fashion, that was the treatment specific to me. Even the treatment is completely different depending on the individual and how early it’s caught. I caught mine early on, at the beginning of the second stage (Lyme has 3 stages) thanks to Ali’s persistence (she knew this was Lyme from day one somehow), even though I didn’t have the “bullseye rash”, which actually only appears in about 25% of reported cases.

So I somehow caught this mysterious disease, which has mysterious symptoms and doesn’t have a standardized treatment. Fun right? Ali and I struggled through this process. She was understandably worried, which led to all of our long distance phone calls being hijacked by conversation about the best Lyme-literate doctors in Chicago and the most recent research. It was so hard to go through all of this and not be in the same place. There was so much that was unknown and neither of us had any sort of answer as to what was going to happen. It just seemed like it was one piece of bad news after another and everyone was dancing in circles not sure how to proceed. I’m so thankful to have Ali in my life, and I’m especially lucky to have had her throughout that whole process. Who knows how long it could have gone on had she not insisted that it was Lyme.  It was also unbelievably difficult to go through this while battling with insurance companies (something that is still going on to this day- Canadians, never take your health care for granted).

Once I started working with an infectious disease doctor things got a lot easier. Finally someone had some answers and was able to help me through the healing process. I was grateful for my doctors who helped get me better, but I know that a lot of people often feel failed by the medical community when it comes to Lyme. This is definitely a problem in Canada, where there are not as many confirmed cases and the health care system lacks knowledge.

Nearly November and starting to feel better

Nearly November and starting to feel better

Since there is so much unknown about Lyme, it seems that Doctors don’t really test for it unless you say “test me for Lyme disease”. The biggest thing that I want everyone to take from this is to always remember to be an advocate for yourself and your own health. There are thousands and thousands of cases that are not diagnosed every single year due to the ambiguous symptoms. This can go on for years and only gets worse over time. The number of reported cases is shockingly high but it is estimated that the actual number of cases is probably double those reported.

Doctors are amazing people, but it is so important to speak up and trust your gut, not just taking what someone else tells you for the truth. If you have meningitis or even mono like symptoms that will not go away, please talk to your doctor about Lyme. Tests can also come back as false negatives with Lyme as well, and there isn’t a gold standard for testing. There are a lot of unknown and scary factors surrounding Lyme.

Remember, most people won’t present a bullseye rash, this is something that a lot of doctors don’t always seem to know. This may be especially true in a place like Toronto where a lot of cases have not popped up yet. If you spend time outdoors and have been in a grassy or wooded area, check yourself for ticks, this is what a tick looks like. Have your partner check you for ticks. Double check even. If you find one, this is how you remove it. Take it to your doctor. Wear long pants if you are out hiking, or clothes that are light in colour so you can see a tick. Check your pets for ticks too. Also remember that sometimes they are incredibly small, the size of a grain of sand, a pin point or a poppy seed. If you have a lot of dark hair like I do, you may never find a tick. This is why it is so important to always listen to your body.

For more information please visit these sites:

Canadian Lyme Disease Foundation

Ministry of Health and Long-Term Care

Center for Disease Control and Prevention