Today is May 1, 2016, which you undoubtedly already know without me writing it here. (It’s significant though. I promise.) This is the date I committed to launch my blog – the day I set as a deadline to end my silence.
Lyme disease, though often marginalized, politicized, under-researched, misunderstood, and even mocked at times, is completely life-altering and marked by endless suffering. Treatment for this disease is in no way easy, as the outdated CDC guidelines would have you believe. In Late Stage Lyme disease (aka Chronic Lyme), no bodily system is left untouched. The bacteria responsible for Lyme disease, Borrelia burgdorferi, a spirochete, can drill its way into every tissue, muscle, organ, etc. My skin, muscles, nerves, lungs, heart, brain, joints, eyes, ears, and digestion have all suffered the consequences of this infection taking over. This is why it is known as “The Great Imitator.” It can mimic so many other diseases. Simply taking one antibiotic for 2-4 weeks to cure it, as was originally believed, couldn’t be further from reality. I have spent the last year and half battling for my life. I have taken upwards of 60+ pills/day, countless shots, and various other out-of-the box treatments. I have spent days and weeks unable to leave my home …or even walk to the bathroom. I have had way too many trips to the ER, emotional breakdowns from not being able to control my own body, and moments I was sure I was close to death’s grasp.
Yet, I am still one of the lucky ones. I know people who suffer from Lyme disease who have withered away into nothing, have picc-lines inserted, and who have even died. I know people who have struggled to find the right treatment for decades – people who have lost their homes, marriages, and all sense of humanity, tying to treat this infection. Beyond that, there are countless others out there who are unknowingly suffering from this same illness, without a proper diagnosis. It took me a near lifetime of being sick, a decade of actively searching, and a few years of debilitating symptoms before I received the correct diagnosis. I was misdiagnosed and re-diagnosed endlessly. I had so many tests done that I felt like a human lab rat. Sadly though, none of this is uncommon for those diagnosed with Lyme disease. Just because it may not kill you right away (although it can, and has), does not mean that it won’t ruin your life. It is a hell that is incomparable – one that I wouldn’t wish on my worst enemy.
Lyme disease is known to be caused from the bite of a tick and/or other vectors (although there are many documented studies suggesting that it may be transmittable other ways). One little tick bite is all it takes. Many people can’t even recall a bite. The tick can be the size of the period at the end of this sentence. That’s what is so disappointing about my case. When I was bitten, I was living in New Jersey as a young child. (Though more prevalent in certain areas, keep in mind that, Lyme disease has officially been found in every state). My mom very clearly remembers removing the tick from my back, placing it in a jar, and taking it to the doctors with us. The doctor half-glanced at the spot, looked at the tick, told my mom I was fine and sent us on our way. That was over twenty years ago. My life was never the same. Tragically, this still happens all the time. Most doctors are not Lyme literate. If anything, they look for the signature bull’s eye rash and if they don’t see it, they tell you that you are fine. Unfortunately, only 30-80% of people diagnosed with Lyme disease get the rash (depending on which study you read). If a doctor does decide to look further, the standard CDC testing is next to useless, being inaccurate over 50% of the time. If you are one of the very lucky patients who does catch it early, the CDC protocol for treatment is almost always too short and patients often relapse. Sadly, there is currently no real way of knowing which patients will relapse, as it can be years before it occurs. And even though a strong immune system can suppress the bacteria from completely taking over after initial exposure (even without treatment), relapse is also likely to occur (if not imminent). That’s kind of what happened to me. I came down with some bizarre symptoms in the immediate years following the tick bite (which my body never really recovered from but learned to function with), then I sort of held in a steady state of remission – functioning “normally” until about my early 20s. That’s when all hell started to break loose and when I really started my search for an answer. Lyme disease is strange like that, a person can go into a remission for a period of many years, then due to physical trauma or a weakened immune system, the Lyme bacteria can take over. To top it off, the Borrelia burgdorferi can exist in several different forms within the human body, allowing for easy evasion from one’s immune system.
Hopefully, you can start to see why treatment (and diagnosis) is so difficult and why there is so much controversy regarding the proper treatment path. It should also highlight the need for awareness and research.
If that was all not enough, it is more challenging yet. People with Lyme disease look so normal on the outside. Besides the times we have to use walkers or wheelchairs, or carry oxygen tanks with us, we look just like everyone else. I remember a quote I heard one time. (It was by a doctor, although I can’t recall who exactly.) He said: “Lyme patients are the healthiest looking bunch of sick people I have ever seen.” He didn’t mean it with any disrespect. He simply meant that he was amazed by how healthy someone could look and still be so unhealthy internally. Take me for instance. Most everyone I see tells me how great I look (which by the way, I appreciate – I’m not saying that I am at all envious of those who look sick). While there was a time frame when my skin was pale/gray and when I couldn’t walk on my own, for the most part, I looked fine. On the inside however… that was a different story. My labs were coming back showing all sorts of nutrient deficiencies, electrolyte and thyroid issues, severe anemia, and tons of imbalances… not to mention the constant low blood pressure and POTS (Postural Orthostatic Tachycardia Syndrome). I had very real, very tangible evidence that something was seriously wrong. Doctor after doctor just couldn’t tell me what. They were stumped and since I looked ok to them, they told me that I was anxious or depressed (which was true, but going through all that would make anyone anxious or depressed – they were symptoms, not causes). The doctors made me feel like they were saying, “There, there sweetie, don’t worry that pretty little head of yours.” They treated me like a hypochondriac. It was demoralizing and beyond demeaning. I bet that is the case with most invisible illnesses though. I’ve seen it time and time again. Everyone I know who has an invisible illness has struggled with the condescending (accidental or otherwise) voice of a stranger, loved one, or doctor. From experience, I can tell you that it’s heartbreaking to be treated this way – to have to not only be very, very sick, but to also have to prove that we are sick. We are not faking it, or milking it, or being lazy. We are incredibly sick, whether we look it or not.
End rant.
I have to apologize for spouting out so much ranty (yeah, that’s a word now) information. I’m not even sure if it made sense. This is not usually the way I write about my experience. My only excuse, I guess, is that I have some underlying anger that takes over from time to time. I am only human. Even though sometimes it can feel quite satisfying to give into it, anger, in my opinion, is not a way to spread the truth about anything. Admittedly though, it is hard not to let it take over from time to time – especially after all that I have been through. It’s just that there are still so many people suffering and dying needlessly from this destructive disease – people that may be searching for the same answer I was. To me, baring my soul (anger and all) is worth your potential uneasiness and my embarrassment, even if it helps just one person. That being said, May is actually Lyme disease awareness month. So despite the fact that today has not been a “good” day with my health, and that I don’t feel much in the way of encouragement and positivity, it seemed fitting to share this now. Thanks for hanging in there. I promise to not always write like this.
If you or someone you know has been suffering from strange, un-diagnosable symptoms, Lyme disease may be worth looking into. It is more common than you think. I suggest contacting The International Lyme and Associated Diseases Society for more information or to find a LLMD (Lyme Literate Medical Doctor) near you. Even though every day can feel like a battle, I’ve said it before and I will say it again, there is hope. Always. Have a wonderful and healthy Lyme awareness month. Yay spring!
“Make up your mind that no matter what comes your way, no matter how difficult, no matter how unfair, you will do more than simply survive. You will thrive in spite of it.” – Joel Olsteen