Meet Borrelia burgdorferi. Otherwise known as the spirochete bacteria that causes Lyme Disease. It’s what has been setting up shop, wreaking havoc and thriving stealthily under the standard diagnostic radar for 8 years in my body.
To be honest, Internet, I wasn’t going to even mention this because when I first heard “Lyme,” I thought it would be 1-2 months of antibiotics and I’d be fine. I didn’t want this to become my entire life and I’d just get back to my silly dog stories and be done with it. But I had NO IDEA of the long road I had ahead of me. Whether I like it or not, having Lyme Disease is a major factor in how I now live and will affect even my silly dog stories.
“Intruder alert! I don’t think I like the looks of this bugger!”
Eight years, nine doctors and no definitive diagnosis until this past June. I couldn’t have chosen a more medically, diagnostically or politically controversial disease if I tried. Thirty years after Lyme’s discovery, there is still no consensus on how to diagnose it, define it or treat it. Even the few good doctors who’ve bravely gone against, above and beyond the standards of medicine to help those suffering with Lyme, cannot agree on any singular treatment plan. That’s because Lyme is so unique to each individual, in how it progresses in the body and how each individual’s immune system handles it. And that’s just the tip of the ice berg when it comes to Lyme. It’s further complicated by the multitude of co-infections that go along with it and Lyme’s ability to evade the immune system as well as resist antibiotics. Ultimately, treating a patient with Lyme becomes a delicate balance of art, science and politics.
“Ok, I got it. Now what would you like me to do with it?”
To dumb it down, Lyme Disease —also known as “The Great Imitator” because its symptoms mimics many other diseases—is a chronic inflammatory infection that can affect any organ and any system in the body, including the brain, nervous system, muscles and joints and the heart. It can also do a number on the digestive system. To answer that burning question in your mind: yes, I had two tick bites, one of which caused a rash, and both of which, doctors had dismissed over the years.
“Ooooo! Come back here little stinker!”
My symptoms began neurologically with restlessness, insomnia and agitation, uncontrollable muscle tremors, hypersensitivity to sound and visual stimulus, and moved onto cognitive problems such as memory loss, confusion, brain fog, a loss for words and difficulty concentrating. For years the symptoms waxed and waned, just as Lyme is known to do. There were times I appeared and felt almost normal. But when the symptoms were back, it was draining. As a writer, I began to struggle with writing simple sentences. Words evaded me. People’s names forgotten. I was only in my mid-thirties when this hit me, much too early for the brain to go so soon. I couldn’t tolerate music. Going to parties was grueling. I could hear people conversing, and I couldn’t keep up with the train of thought, I couldn’t articulate what I wanted to say. I struggled to find words all the time. It felt like I was in a walking coma at times, like there was peanut butter in my brain synapses. I was aware but couldn’t participate. And scared out of my mind when it was at its worst.
“I will kill the Lyme with my cuteness!”
Because no medical or naturopath doctor had an answer for me, it became important for me to just function as normally as I could. So I lived a quieter lifestyle and lowered my client workload. But Lyme has a way of making itself heard and eventually, it moved into my joints. Month after month it grew worse and doctors continued to dismiss it or misdiagnose it.
Moving to Switzerland and quitting my job for good was probably one of the best things I could have done for this disease not knowing I had it. Changing to a anti-inflammatory diet bought me some energy and lowered pain levels enough to be able to travel more freely while living in Europe, though I was constantly managing the pain. It wasn’t until we moved back to California that the pain became so intolerable I thought I’d lose my mind. I could no longer practice yoga without intense pain. I couldn’t descend the stairs in my house without holding onto the railing with both hands. At one point, I fell down the stairs due to the joint pain.
By then, Mr. Wild Dingo had started pestering me to find a doctor to test me for Lyme but when I asked my “then new” doctor, she refused to test me and replied that even if I had it, it was incurable. I’m certain if I didn’t find help by the time I found it, I was headed for a wheelchair. It was progressing that fast. Did I mention that I was once a amateur athlete and yoga instructor? Does it not seem completely whack for any doctor to miss how much this has changed me?
“Our diagnosis is not enough walkies or treats!”
Somehow, the stars were aligned and I found a doctor who could properly test and diagnose me. I started treatment for Lyme in June and now, four months later, I’m a lot better and I see significant changes. I have more mobility, less joint pain but it’s still there. I still struggle with my train of thought, focus and words, but at times I feel my wit returning. The thing about going under treatment is that it feels like the Lyme symptoms have returned, albeit at a much lower level. Looking at me, you may not even know that I’m still in pain and still struggling cognitively.
“Oh my dog! There’s a spirochete on our property! Get off you little bugger!”
There is no cure for Lyme and no vaccine, despite the heavy politics surrounding one. The disease is so entirely complex, I’m not sure we’ll ever see a vaccine, at least in my lifetime. Treatment for Lyme is equally complex and controversial because Borrelia burgdorferi is a master at hiding from the immune system and can cleverly protect itself from antibiotics. While it doesn’t mean it’s entirely impossible to kill it, it does mean being patient in finding that vulnerability and waiting out. Most medical and many naturopathic doctors will agree that antibiotics on some level, whether short-term, long-term, or even multiple-types are required. That’s just for dealing with the Lyme itself and its co-infections.
“Cracker, let go of the spirochete! I want to shred it!”
The other part of the equation is rebuilding the patient’s badly beat-up immune system and looking for other infections or problems within the immune system that can inhibit a path to wellness. Ultimately, treatment for Lyme is about killing the bacteria without killing the patient’s will or functionality. It’s a delicate balance between hitting the infection hard, but leaving enough in the patient’s tank to function daily, and very much an individual approach. What works for one person, may not work for another. There are no short cuts. You cannot take harder hitting drugs to get over it faster. It is very much a waiting game. A slow process.
And after months or years of treatment, when the patient is finally symptom free and can stop treatment, there is still no way to know whether you’ve eradicated the bacteria completely. You can only work toward keeping your immune system highly functioning so it can keep bacteria levels in check and you remain symptom free.
“Spirochetes are not welcome here!”
Sometimes people ask me if I am angry for all those lost years of being misdiagnosed or told that nothing was wrong with me. But Lyme changes you, on every level, whether you want it to or not. The old me would have been furious at the pathetic medical care I had received up until now. The good thing about Lyme is that it eventually numbs you emotionally. It wears you down so much that it leaves very little energy for anger. Instead, that day I heard my diagnosis, I just drove myself to the pharmacy, picked up my medicine and began to look forward to feeling less pain and more peace.
I’ve been sick for so long I sometimes wonder if I’ll ever recognize when I’m completely healthy. But, for the first time in eight years, I feel like I’m finally on the right path to recovering my health. I spent a glorious month sleeping my days away in July, had a difficult August, but September started to pick up. I’ve had a few hours every now and then when I don’t feel any Lyme symptoms. Sometimes even a day. It’s a start.
“Hey cracker, check out this bad intruder! You wanna bitey it?”
I’m not sure if I’ll ever be done with Lyme but I do believe I will recover. Since there is no cure, no vaccine and no sure-fire treatment, and no way to speed up recovery, I decided to add a cutting edge approach to my treatment plan that will scare the spirochete out of me.
“Kill the spirochete!”
I mean seriously, if I were a spirochete, I would not want to piss off the cracker. Look at him attack that nasty germ! Once I prove my hypothesis that crackers can kill spirochetes, then I will patent my discovery, forbid any company from copying it, and rent out the cracker for anyone with this disease, free of charge. Because that is just the kind of break the Lyme patient community needs right now.
Now I just need a name for my treatment plan.
One spirochete down. Eighty-seven hundred thousand to go.