There are nearly microscopic blood sucking bugs outside, ready to infect you with a deadly disease! With no vaccine for humans and no cure, the disease will destroy your health and probably also your career, relationships, and finances. Once infected, your life will never be the same, and not in a good way. If you ever go outside, you’re at risk. I know, because it happened to me.

Oh, you’re not going to stay inside the rest of your life? Well, you might as well get educated then. It could save your life. Lyme disease is a world-wide pandemic affecting millions of people in over 60 countries. The Centers for Disease Control and Prevention (CDC) estimate 476,000 Americans are diagnosed with Lyme disease every year. Diagnosing Lyme is often difficult, so many experts believe the real number of those infected is much higher. Lyme can be contracted in any US state except Hawaii.

Lyme disease is a bacterial infection primarily transmitted to humans by tiny ticks called deer ticks or blacklegged ticks. These ticks are about the size of a poppy seed, and are very difficult to see. They usually carry other pathogens called co-infections, so they often infect people with more than just Lyme. When I talk about Lyme disease, I’m talking about Lyme and its related co-infections including babesia, bartonella, rickettsia, and ehrlichia, which tend to cause a hot mess inside the human body. Lyme can also be transmitted in utero from mother to child, through infected blood transfusions, and through infected organ donation. If that’s not bad enough, Lyme can likely be spread through sexual contact and by mosquitoes, but research is needed.

Once infected with Lyme disease, some people get facial palsy (Bell’s palsy). Some get a rash that may look like a bullseye at the site of the tick bite (Erythema migrans). If you’re very unlucky, the Lyme bacteria will go straight to your heart, cause a heart attack, and kill you.

Rash and palsy or not, you can expect flu-like symptoms about two weeks later. Either way, symptoms will go away and come back on a 4-6 week cycle. If you’re healthy, your immune system may be able to keep the Lyme bacteria under control for a while; up to 30 years has been reported.

I believe I was bitten by a tick in my early teens in central Pennsylvania. I never saw a tick on me. I did not get a rash, but I had mysterious symptoms starting at age 14 (back pain, neck pain, overactive bladder, sinusitis, nausea). I also had mono and a tonsillectomy when I was 15, and my immune system and energy levels were never the same after that. I was diagnosed with late-stage Lyme disease in 2015, when I was 38 years old.

If you don’t get diagnosed and properly treated for Lyme disease promptly (and I – like most patients – didn’t), your symptoms are likely to become chronic (and mine did). “Proper” treatment is at least six weeks of doxycycline, and it works 85% of the time. 15% of the time, symptoms become chronic.

When symptoms become chronic, you can be diagnosed with what’s called chronic or late-stage or late Lyme disease. Late-stage symptoms include anxiety and depression, so people with chronic Lyme are 75% more likely to die by suicide than those who don’t have it, making it a very deadly disease.

The disease most closely related to Lyme is our Founding Fathers’ old pal, syphilis. Both diseases are debilitating, deadly bacterial infections that cause inflammation in every system of the body. Even the spiral shape of the bacteria is the same, but Lyme is far more complex. The relation to syphilis is a good reason to suspect Lyme may be a sexually transmitted disease, so protect yourself! Unlike syphilis, however, there is no cure for late-stage Lyme disease.

Over time, Lyme disease and co-infection symptoms spread throughout the body to include (and lucky me, I’ve had all of these): the symptoms listed above plus vomiting, disabling joint pain (particularly knee pain), chronic fatigue, neck stiffness, muscle pain, muscle spasms, joint pain and swelling, severe headaches, GI problems, tinnitus, sensitivity to light, eye pain, dizziness, shortness of breath, nerve pain (especially in neck and hands), bone pain, rib pain, depression, anxiety, brain fog, heart palpitations, memory problems, word-finding problems, and… what was I just saying?

You can expect days when you can’t get out of bed. Some days you’ll feel fine, and then without warning, some days you’ll wake up feeling like you’ve been run over by a bus and you just came off a 3-day bender and you’re wearing a lead suit and it will hurt to be awake, but you won’t be able to sleep. Sometimes you’ll get an emotionally and physically empty feeling, that my-insides-have-been-scraped-out-and-I’m-just-a-dried-up-nauseated-shell-of-pain-and-misery-waiting-to-die-so-I’ll-finally-be-out-of-my-misery feeling. Oh, you’re not familiar? I’m jealous. To me, it felt like I was dying slowly.

If you’re lucky, you won’t lose everything. I lost a career that wasn’t going anywhere and a second career I wasn’t enjoying. I lost a few people I thought were my friends. I was told by a number of doctors there was nothing wrong with me, despite my knee and shin pain being so severe I couldn’t walk. I was told by doctors my symptoms were psychosomatic (all in my head), even the lesion on my spinal cord (diagnosed as transverse myelitis) is a figment of my imagination, apparently. But through it all, I was lucky enough to keep my husband, my family, and my real friends.

I was treated controversially, with a combination of three antibiotics for four years total, and with an additional antibiotic called Dapsone for the final six months.

Many of my symptoms resolved in the first few years of antibiotics, but Dapsone, an old drug used for leprosy, cleared up a few lingering symptoms I thought were permanent, including pain in my knees, shins, and ankles. Dapsone left me with anemia I couldn’t shake for two years, but I don’t regret it. I still have fatigue, back pain, neck pain, and arthritis in my knees and neck. Even though my knees tell me when it’s going to rain, I’m doing much better than I was.

Once Lyme becomes chronic, you have to accept that your life has changed forever. You will never have the same stamina you once had to #hustle and #grind. Some days, you’ll need to #rest. And you shouldn’t feel bad about that, whether you have a chronic illness or not. Life is too much #hustle and #grind these days anyway, in my opinion. So take care of yourself, and learn to protect yourself and your family from Lyme disease.

Lyme Disease Prevention

I wrote, produced, and directed a handy hip-hop music video to help you learn about Lyme prevention. Music was composed and produced by Lyme Disease: The Musical composer Hughie Stone Fish, and it stars Lyme Disease: The Musical‘s Brendan McCay and Taylor and Murphy-Sinclair, as well as Tamara Mena, Siri Harkins, and Derek Ocampo.

Lyme Disease Prevention Tips

• Avoid tick-infested areas, particularly in May, June, and July
• When outdoors, wear light-colored shoes and clothes, with shirt tucked into pants, hair tucked into a hat, and long pants tucked into socks
• Wrap duct tape around the tops of socks so ticks can’t crawl inside
• Use insect repellent with 20%-30% DEET or lemon eucalyptus oil around your ankles, areas of bare skin, and on clothes
• When in nature, stay in the center of the trail, avoiding tall grass and brush
• Don’t sit on fallen trees or rocks
• After being outside, check for ticks on your clothes and gear using a lint roller
• After being outside, check pets and kids for ticks
• After being outside, remove clothing and put it in the dryer on high for 10 minutes to kill ticks
• After being outside, take a shower and check your body and hair for ticks
• If you live in a heavily tick-infested area, get your dog vaccinated against Lyme disease
• Mow your lawn regularly (ticks love tall grass)
• Fence your yard (ticks can ride in on wildlife)
• Install a 3-foot wide barrier of gravel around the perimeter of your yard (discourages wildlife)
• Stack firewood neatly and keep it dry
• Put Tick Tubes in your yard
• Learn how to properly remove a tick
• If you find a tick on yourself or a family member, keep it and send it to TickCheck for testing
• Tell your friends about the dangers of Lyme disease! Friends don’t let friends get Lyme!

Sources: LymeDisease.org, CDC.gov

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