Veronica is a near & dear friend to me and for the past three years, I’ve witnessed her on-going battle with Lyme Disease and she’s a champion. Not only was she fighting a disease that was as strong as the Hulk but also against a world that is (unfortunately) woefully uninformed. Ever since then, Veronica has fought relentlessly to raise Lyme Disease awareness for all. -Amy
By Veronica Hohenstein
People who know me wouldn’t exactly describe me as outdoorsy. My version of being outdoors is having brunch on a nice patio. But yet still, somehow, I managed to contract Lyme disease. I don’t know when or where exactly it happened because I never saw a tick or had a rash, but my symptoms started in November 2015. It began with joint pain in my hips and progressed over the next few months to tingling, numbness and severe nerve pain in my hands and feet. I saw nine different specialists who didn’t have any explanation for my symptoms. The tests I had for Lyme disease were negative so I crossed Lyme disease off my list of possible causes for my mysterious symptoms. I had no idea at the time that diagnostic testing for Lyme is highly inaccurate. But, before we go on…
What is Lyme disease?
“Lyme disease is the fastest spreading vector-borne disease in the United States, with more than 300,000 estimated cases diagnosed annually. Lyme disease has been reported in every state in the United States. People contract Lyme disease and related co-infections from the bite of an infected tick. The tick becomes infected when it bites an animal that is carrying the infectious bacteria. Then, the tick transmits the bacteria through attachment to a “host,” such as a deer, pet, or person. Ticks are infectious in all stages of their growth cycle but thought to be most dangerous in the nymph stage, as it may not be seen easily after it attaches to the host.” – NatCapLyme.
If detected early, Lyme disease can typically be treated effectively with antibiotics. Left untreated or undertreated, Lyme disease can cause severe symptoms which can be difficult and complex to treat. This is often referred to as “chronic Lyme disease.”
Many ticks contain numerous infections called co-infections. These can be challenging to diagnose because their symptoms overlap with other tick-borne diseases such as Lyme disease. “Ticks are toxic soup” according to Lymedisease.org. In a survey done by Lymedisease.org, more than half of the 3,000 respondents with chronic Lyme disease reported having co-infections, and 30% had two co-infections or more.
“Patients with Lyme disease also become more vulnerable to other infections. Mycoplasma, Epstein Barr virus, candida, H. pylori and Chlamydia pneumoniae are quite common infections in patients with Lyme disease” according to NatCapLyme.
Whether you are grilling burgers in your own backyard or hiking with friends it is important to follow the steps below to avoid tick exposure. Remember that the best way to prevent Lyme disease and co-infections is to avoid being bit altogether.
- Wear light-colored clothing. This allows you to see ticks on your clothing much easier. Also, wear long sleeves and pants and tuck your pants into your socks while you’re at it.
- When hiking stay in the center of trails to avoid long grasses and vegetation. Ticks wait for hosts on the end of long grasses and vegetation. When a person brushes up against these grasses or vegetation the tick climbs aboard you.
- Use a repellant with 20% or more DEET on your skin.
- Treat your shoes and clothing with permethrin. In a new study with the U.S. Centers of Disease Control and Prevention, clothing treated with permethrin interfered with a tick’s ability to move, making it unlikely to bite.
- After a long hike, it may be tempting to lean against a tree or to sit on a tree stump but I’d advise against it as these are natural spots to be exposed to ticks.
- When you come inside from spending time outdoors immediately throw your clothing into the dryer on high heat for at least 15 minutes to kill any wandering ticks.
- Do a thorough full-body tick check and pay particular attention to areas such as your armpits, hair, behind your ears, groin and behind your knees.
- Shower after you’ve done your full body tick check to wash off any loose ticks you may have missed (remember that an attached tick will not come off in the shower).
- If you have a yard, keep up with your landscaping. Ticks don’t care for well-groomed lawns with short grass. “Generally, whatever reduces mice reduces infected ticks, so trapping mice or facilitating predators like foxes and owls will help. Keeping mouse shelters like woodpiles and stone walls away from houses/play structures may reduce tick exposure” recommends NatCapLyme.
When you think of Lyme disease you think of a bullseye rash, don’t you? What you may not know is that this rash, called an erythema migrans (EM) rash, can take many forms. “EM rashes can be uniform in color, oozing, blistered, scaly, and in a variety of shapes. They can range from a pink color to shades of deep red, purple, or brown. Generally, neither itching nor pain is present, but occasionally an EM rash can be warm to the touch, burning, itching or painful. Frequent misdiagnoses include ringworm, cellulitis, and spider bites” according to NatCapLyme.
“Many Lyme patients do not recall any rash at all. It is important to consider Lyme disease as a diagnosis if other factors warrant it, even if a rash does not appear or is not recalled,” according to the International Lyme & Associated Diseases Society.
Tick Removal & Tick Testing
If you have been bitten by a tick always use a pair of tweezers to remove it as close to the skin’s surface as possible. Pull upward and do not twist or jerk the tick which may cause the mouth to break off and remain embedded in the skin. After you have removed the tick thoroughly wash the area and your hands with soap and water. This next part is important, folks. Do not throw the tick away! Put the tick in a jar with a tight lid or a Ziploc bag for testing. Testing the tick provides important information for you, your doctor and your insurance company should the tick be infected with Lyme and/or co-infections.
How Long Does It Take for an Attached Tick to Transmit Lyme?
This question is hotly debated in the Lyme community. According to a recent report by the U.S. Centers of Disease Control, the probability of becoming infected with Lyme disease increases to approximately 10% after a tick has been attached to you for 48 hours and reaches 70% by 72 hours. The study notes limitations such as pointing out that if a tick has already fed on a host and re-attaches to a new host that it can effectively transmit Lyme disease within 24 hours. This study also indicates that experimental studies have shown that the Powassan virus has been transmitted in as little as 15 minutes of tick attachment.
In summary, relying on the tick attachment time to determine your risk of Lyme disease and co-infections is a bad idea. The reality is that if you find a tick attached you have no real way of knowing when exactly it bit you and if it partially fed on another host before you or not. There is just no way of knowing.
Symptoms of Lyme Disease
Lyme disease symptoms mimic many other diseases such as lupus, chronic fatigue syndrome, fibromyalgia, multiple sclerosis, Alzheimer’s, Parkinson’s, ALS and others.
Early Lyme symptoms may include but are not limited to Bell’s palsy, fever, chills, stiff neck, headaches, fatigue, achy joints, swollen lymph nodes and sometimes an erythema migrans rash.
If your symptoms are subtle it would be plausible to brush them off as a bad cold or the flu.
Late-stage Lyme symptoms may include, but are not limited to joint pain and swelling, muscle pain, muscle twitching, jaw pain, heel pain, severe headaches, migraines, Bell’s Palsy, paralysis, dizziness, peripheral neuropathy, tingling and numbness, burning, stabbing and shooting pains, memory loss, seizures, confusion, sound sensitivity, vision changes, ringing in ears, depression, suicidal thoughts, rage/aggression, anxiety attacks, ADHD, bronchial infections, heart palpitations, air hunger, heart attack, insomnia, extreme fatigue, night sweats, chills, chemical sensitivities, lack of sex drive, weight gain/loss and skin rashes.
Phew! Pretty nasty stuff, huh? As you can tell from the long list of symptoms Lyme can take many forms, which is why it is easily misdiagnosed as other illnesses.
Protect Yourself & Get Outside
All this Lyme talk may scare you away from the outdoors, however, that is not the intention. There is no reason why you cannot enjoy spending time outdoors (whether that’s brunch on a patio, hiking or anything in between) as long as you take preventive measures to protect yourself. Finally, remember that if you experience any of the symptoms mentioned above (regardless of whether you recall a tick bite) see your doctor immediately. Be well!
Bio: Veronica is a vintage lover, popcorn enthusiast, Lyme warrior and board member of NatCapLyme; a non-profit dedicated to Lyme disease advocacy, legislation and support. Follow me @natcaplyme on Instagram for more Lyme prevention tips and information.