With new cases of tick-borne disease being reported, more stories of suffering and misdiagnosis are coming to the surface and the common denominator is this ~ ticks do not discriminate. They have one steady focus: to find and feed on their bloodmeal in order to live out their lifecycle. With tools in place to track their global odyssey and awareness materials to help educate people against having tick encounters, there are still some misnomers and myths floating around. FACT: Ticks are small arachnids (with eight legs) that feed on the blood of rodents, rabbits, birds, deer, dogs, and humans. FACT: “Most” tick-borne disease are transmitted via saliva, through the bit of an infected tick. Research has shown other possible modes of transmission but with more studies needed. FACT: Ticks do not fly and do not drop from trees. They quest. Questing is when they climb to the outer parts of plants, shrubs and tree limbs and, while holding on to the branches with their hind legs, sensing their meal nearby, attach themselves to you as you brush against the plant. At this point, it doesn’t matter whether your human, a dog, male, female, adult or child, sick or health, financially secure or scraping to get by. Your faith, the political party you belong to, the neighborhood you live in or the car you drive will not protect you from a tick encounter.
In fact, some things might actually put us in harms way of having a tick encounter. Things like not wearing repellent on our skin or treating our clothing. Things like medications that we take that heighten our scent and put us on the radar of nearby active and hungry ticks. Things like thinking we no longer have to wear repellent or do daily tick checks once the snow falls. FACT: Ticks are active in temps above 32 degrees and thrive in moist conditions. Just last week (in January), I got a report of an embedded tick in a human and a domestic pet, both from different homes in the Northeast, where the weather conditions have been all over the page. I am constantly reminding people to look at the thermostat NOT the calendar. FACT: Ticks can not read nor tell time, but they know when the temps warm up and they become active, seeking out their bloodmeal.
Prevention products and habits are the only defense we have against having a tick encounter and sometimes even that seems not to be enough.
One of the biggest hurdles when you contract a tick-borne disease is getting it properly diagnosed. I have written extensively about the importance of seeking out a Lyme literate medical provider for your best change of not only getting a proper diagnosis but also proper treatment. IF I was granted two wishes it would be that all medical providers were on the same page with the same knowledge, understanding and resources AND that proper care and treatment was not only accessible by all but affordable. Sadly, that is not the case and it forces people who find themselves in this unfortunate predicament to either remain sick and debilitated or to seek out more drastic treatment measures that they cannot easily afford.
When is enough enough? Patients have been misdiagnosed and mistreated for years. We’ve been called Lyme Loonies and mocked for having “an invisible illness.”
Do not confuse invisible illnesses with medical ignorance. This is not an invisible illness. It is one that is caught deep in the throes of controversy and celebrities don’t have it any easier. They have financial means that allow them to have access to endless doctor visits and a mirage of treatment modalities but just like all the others, they go through misdiagnosis after misdiagnosis and even with their gains, they too can relapse. They use their public status to help bringing awareness and to spotlight the fact that ticks do not discriminate, even when living in a large mansion or jet setting around the globe in their private jet or having a heavily padded bank account. Celebrities are just as much at risk, only they have the financial provisions to keep trying different things to get better. Some of these celebrities have been quite outspoken, sharing their personal journeys and joining with national organization to raise awareness and support research efforts (ref: mosquitojoe blog).
Just last week, pop sensation, Justin Bieber, announced his battle with Lyme disease. “It’s been a rough couple years but getting the right treatment that will help treat this so far incurable disease and I will be back and better than ever,” Bieber said. The singer plans to use his voice to create content on YouTube about the chronic illness.
Country singer, Shania Twain, opened up about her struggle with Lyme disease in July 2018, stating she suffered from dysphonia which affected her vocal cords. The disease kept her from touring and even singing. Now back on tour and releasing a new record, “I never thought I would sing again,” Twain said.
Yolanda Hadid, of The Real Housewives of Beverly Hills fame, has been vocal about her battle with Lyme disease. Yolanda published a book chronicling her experience living with the illness entitled, “Believe Me: My Battle with the Invisible Disability of Lyme Disease.” Recently, the former model admitted after nearly a year of remission, her symptoms have returned. Her children, Bella and Anwar Hadid also have the chronic illness.
Actor Alec Baldwin was bitten by a tick nearly 18 years ago. The result was numerous bouts of severe Lyme disease symptoms. Because of his struggle, Baldwin is vigilant in checking his children for ticks after they’ve been outdoors. “I want my kids to grow up riding horses and bikes and enjoying themselves every day and not have to spend every day with us going over them with a magnifying glass to make sure they don’t have any ticks on their body or their dogs, but that is part of the lifestyle of where I live.”
In a letter to her fans, singer Avril Lavigne revealed she has been fighting Lyme disease. She founded The Avril Lavigne Foundation in 2010 to support causes such as Lyme disease. In October 2018, she joined the Board of Directors for the Global Lyme Alliance. Her most recent album, “Head Above Water,” addresses her battle with the chronic disease. “This is me and my fight. This album tells my story.”
Singer/actor Kris Kristofferson’s doctors originally told him his deteriorating memory was due to Alzheimer’s disease. After many years of strenuous testing, it was clear the singer had been misdiagnosed; after a positive test for Lyme disease, his symptoms were correctly identified. With the proper treatment, Kristofferson’s condition improved and “Kris is as sharp as he’s been in the past 20 years because of his treatments” says a close friend.
In 1991, Tom Seaver, the former New York Mets pitcher, was diagnosed with Lyme disease. At the time, he lived in Greenwich, CT and spent most of his time outdoors, which is how he contracted the illness. The Baseball Hall of Fame member described the disease’s symptoms as “the worst case of the flu every day.”
The daughter of designer Tommy Hilfiger, Ali Hilfiger suffered from joint pain, night sweats, memory loss, nausea and brain fog caused by Lyme disease, which went undiagnosed for more than a decade. In her 2010 memoir, “Bite Me: How Lyme Disease Stole My Childhood, Made Me Crazy and Almost Killed Me”, Ali shares how her symptoms were dismissed and misdiagnosed. “It doesn’t discriminate against race, skin color or gender. It doesn’t care what kind of shoes you wear or what kind of car you drive. It’s a cruel disease. I do fall into the stereotype of a privileged white person on the East Coast coming down with Lyme disease,” she says. “I was disbelieved.'”
Singers, actors, authors and athletes. Oh, the list continues to grow as more and more finally get answers to the age long question, “What is wrong with me?”
With researchers identifying more and more new tick-borne diseases, along with new possible modes of transmissions and with the ever growing list of varying symptoms, symptoms complicated by co-infections (the presence of two or more infections), we never know when we will have a tick encounter and what those migrating and debilitating aches and pains really mean.