May is Lyme Disease Awareness Month. National Bike Month and National Pet Month and Jewish American Heritage Month as well, of course; credit where it’s due. Lyme also shares May with other maladies like ALS, Asthma, and Celiac, which is cute because of the fact that many people are misdiagnosed with ALS when they actually have advanced stage chronic Lyme, and because Lyme Disease and its coinfections have greatly and negatively impacted my ability to breathe like people and my relationship with gluten. This is actually not too surprising, however, because Lyme Disease mimics at least some of the symptoms of most illnesses. Lyme Disease is essentially like one of those insufferable people who has a “me too” story for anything you tell them, except it can also bore right into your bone marrow.
I am not convinced that awareness months do a lot of good or matter to anyone, but it’s hard to get around the fact that people in general don’t know a great deal about Lyme Disease. And why should they? It’s depressing and weird, and confusing because the CDC and most general practitioners and the doctors who actually have experience treating Lyme Disease all have completely different things to say about it. The only really compelling reason one might care to learn about Lyme Disease, I suppose, is the fact that it’s the fastest growing infectious disease in the United States, and no one is safe from it.
Ten years ago I knew virtually nothing about Lyme Disease. My entire education was a warning from my cousin when we were eight. “Careful, don’t get bit by a tick,” he’d told me after a day at his grandfather’s farm. “Ticks give you Lyme Disease. It makes you really really sick, and you might never get better.” I shivered and looked back and forth from the dartboard on the wall to the unblemished skin on my leg. There was something horrific about an illness you couldn’t get better from, yet didn’t kill you. You’d just be sick forever. What a nightmare.
About fifteen years later, the nightmarishness inherent in such a situation was confirmed.
Until I had to learn about Lyme Disease, however, I knew next to nothing about it. That’s basically how people work. But when you live with Lyme, complications do arise from the general lack of knowledge everyone carries around regarding the thing that has become central to your day-to-day life, your thought process, your body image, your future, and every decision you make. So here are some things you may not know about my illness; I certainly didn’t until I was forced to learn.
- Lyme Disease is caused by a bacteria. It is a blood-born pathogen, and spreads via vectors like deer ticks. Many doctors believe mosquitoes, spiders, and other blood-suckers are dangers as well. I don’t believe there’s ever been a confirmed case of person-to-person transmission of Lyme, though fetuses can very probably contract it in utero from infected mothers.
- Lyme Disease is difficult to diagnose. The characteristic bullseye rash doesn’t emerge in all (or even most) cases. The blood tests are not very reliable and return both false positives and false negatives. It took me 13 months to get diagnosed with Lyme, after a series of farcical misdiagnoses and treatments that ultimately made my recovery much harder. More than one doctor informed me that Lyme Disease is not endemic to Michigan.
- Lyme Disease is debilitating. If Lyme Disease is caught very promptly and treated very aggressively, patients can emerge with their lives more or less in tact. If Lyme is allowed to advance past its early stages it becomes Chronic Lyme Disease, and it becomes your life. For example, I’m legally disabled and may never be able to work a normal fulltime job ever again. I have not experienced a day without pain since 2004, and the pain is often severe. Fatigue confines me to my bed over half my waking hours. Making food, showering, dressing… everything requires a careful navigation through symptom-infested waters. Every. Day.
- Lyme Disease can be an invisible illness. When people learn how difficult it is for me to function at all, they normally react with surprise. “I knew you were sick, but I didn’t know you were that sick.” Mission accomplished. A lot of the symptoms of Lyme Disease are invisible to the untrained eye. I sometimes carry a cane, but that’s the only obvious visual cue that I’m disabled unless you learn my tells. Many of us get very good at faking normal for brief periods. When you’ve been in pain for years straight you learn not to show it on your face as much. You develop a gauge for exactly how much you can push yourself before the fatigue inexorably knocks you down for the day. You become an expert at walking the fine line between functioning and crashing, grinning all the while. Looking as bad as you feel is alienating; even sweet and well-meaning people don’t know what to do with you if your face is always contorted into a mask of anguish. But yes, we’re still sick. Rest assured we would tell you and basically throw a huge parade if we suddenly weren’t.
- Lyme Disease is insanely expensive. Chronic Lyme Disease makes it extremely difficult to hold down a job, which (among other things) means that many Lyme patients don’t have insurance. But even if we did, health insurance doesn’t cover Lyme treatments like long-term I.V. antibiotics anyway. I recently read that out-of-pocket costs for Lyme treatment average over $16,000 a year (which is more than my entire yearly income). And that doesn’t include lifestyle expenses. Because Lyme attacks the body on every level, treating the illness holistically is essential. This means a eating special diet focusing on high-quality organic foods and taking costly supplements.
- Lyme Disease can be fatal. The bacteria that causes Lyme Disease is a spiral-shaped spirochete. It can essentially drill into bone and invade any tissue. Lyme Disease can cause permanent damage to the brain and heart. It can be degenerative, especially if left untreated. Many Lyme patients develop lymphoma, possibly because Lyme overtaxes the lymph system so dramatically. And, of course, there are the overwhelming number of Lyme patients who end up killing themselves.
- Lyme Disease can cause mental illness. ”Exhaustion”, “headache”, “pain”, and “bad day” meant very specific things to me before I got sick. Now, I use the same words, but their dimension and intensity has unfurled to the point where all I can do when I think of the disparity between these identical terms is cackle manically. Too well do I know the crushing boredom of having no physical or mental energy to do anything useful but being too much in pain to sleep. In short, I think Lyme Disease would drive me crazy if it didn’t already literally and physiologically drive me crazy. The bacteria does things to one’s brain, though. Lyme Disease has been linked to a host of mental conditions, including paranoia, schizophrenia, bipolar disorder, anxiety and panic attacks, anorexia nervosa, obsessive-compulsive disorder, and dementia. Most people with Lyme show signs of depression. Many of us battle insomnia.
- There is no cure for Lyme Disease. Even when treated successfully with antibiotics, Lyme can reemerge later. Many patients find their Lyme doesn’t respond to antibiotics, and they end up pursuing alternative and complementary therapies. The only real consensus in the Lyme community is that there is not one right way to treat chronic Lyme. And the best we can reasonably hope for is deep remission.
- Lyme Disease is not well understood by the medical community. One day I got sick and just never got better. To me, that defines frustrating. One of the especially frustrating aspects of the situation, however, has been the difficulty in finding doctors who can treat me. There are only a handful of physicians in my state who are currently treating chronic Lyme Disease. This is partially because they aren’t getting this knowledge from medical school or big pharma, but also because in many states doctors are losing their licenses and facing other sanctions for “overprescribing” antibiotics to Lyme patients. Lyme Disease can be risky to treat. And difficult. Lyme is a superbly evolved hydra of an organism. It can hide anywhere in the body. It has three known morphologies it can switch between when threatened. It affects virtually every biological system. To treat it at all is to essentially take on another specialty. Many of the doctors who treat it do so because they or a loved one got sick.
- Lyme Disease is preventable. Mosquito theories notwithstanding, the majority of Lyme cases start with tick bites. Ticks are the scariest thing lurking in the woods. Knowing what I know now, I’d have rather run afoul of a bear. So protect against ticks. Know their favorite hangouts (piles of leaves, long grasses and brush, stumps, and fallen logs). Wear long pants and sleeves; use insect repellent. Check for ticks after you’ve been at large in the wild. If you find a tick, remove it with fine point tweezers using steady, even pressure. Consider seeing a doctor who has experience with Lyme Disease if you’ve been bit. Just-in-case antibiotics are the scourge of civilization, but in the case of a tick bite it’s often justified. You don’t want to mess around with Lyme.
That’s actually probably the major takeaway here. You do not want to mess around with Lyme.