Hilfiger Daughter’s Lyme Disease Crisis: From Psychiatric Hospital to Health Activist

May 13, 2016 at 6:27 pm

Ally Hilfiger’s childhood was not easy despite being the daughter of renowned fashion designer Tommy Hilfiger. Her arduous health ordeal began at the age of seven when she was bitten by a tick. Her test was inconclusive, and for years she dealt with unbearable pain and misdiagnoses, from rheumatoid arthritis and multiple sclerosis, to fibromyalgia and a developed marijuana habit that ultimately led to her being committed to a psychiatric hospital. In her new book Bite Me: How Lyme Disease Stole My Childhood, Made me Crazy, and Almost Killed Me, Hilfiger opens up about her personal battle with Lyme disease, and shares how she hopes to help others.

LYME DISEASE FAQS:

(Source: Global Lyme Alliance)

Lyme disease is a bacterial infection carried by ticks that is estimated to sicken at least 329,000 Americans a year. Ticks are practically naked to the human eye. They can be as small as a poppy-seed and can grow to about the size of a pumpkin seed when they are not engorged with blood. Though tiny, they can wreak havoc on your body due to the bacteria they carry called Borrelia burgdorferi that is transmitted to humans and pets through their bite. It is through this bacteria that you contract Lyme disease. If left untreated, it can become a severely debilitating illness affecting multiple organs, including the joints, heart, brain and other parts of your central nervous system.

How You Get It

Most people get Lyme through the bite of an infected Ixodes tick (commonly called a blacklegged or deer tick). Ticks are most likely to transmit Lyme during their nymphal stage (spring and summer) when they are immature and as tiny as a poppy seed. Not only is the tick hard to see, but its bite is painless and many people don’t realize they’ve been bitten. Once a tick has attached, if undisturbed, it may feed for several days. The longer it stays attached, the more likely it will be to transmit Lyme and other disease-causing organisms into your bloodstream.

Places Where Ticks Thrive

Ticks are mostly found in wooded areas with tall grass, but they can be found in gardens, parks, backyards, even beach grass.

  • Ticks are most plentiful in areas where woodlands transition into fields, meadows or yards. In fact, many Lyme patients contract tick-borne diseases in their own yards.
  • Ticks are often found in tall grass, gardens or mulch beds.
  • When hiking, walk in the middle of trails.
  • Leaf litter, woodpiles and rock walls are areas of high tick concentration.
  • Coastal areas with beach grass also harbor ticks

 

Courtesy: CDC

How To Remove a Tick

Step-by-Step

  1. 1. Using fine-pointed tweezers, grasp the tick at the place of attachment, as close to the skin as possible.
  2. 2. Gently pull the tick straight out with steady, even pressure. Do not squeeze, twist or jerk the tick.
  3. 3. Do not touch the tick with your bare hands.
  4. 4. Wash your hands with soap & water, apply rubbing alcohol or antiseptic to bite site.
  5. 5. Place tick in a zippered plastic bag with a moist cotton ball and bring it to your local health department or private lab for testing.
  6. 6. If a rash appears, take a photo, write down any symptoms you may have and call/visit your doctor immediately.

Video Source and Creators: Kathryn Rochon, Ph.D., The University of Manitoba

Symptoms

NOTE! TICK BITES DO NOT ALWAYS CAUSE A RASH OR EVEN LEAVE A MARK. SO YOU CAN BE BITTEN AND SEE NO EVIDENCE OF IT.

Many people associate Lyme disease with a circular rash shaped like a bull’s-eye, but it appears in less than half of diagnosed cases.

Courtesy: NIH

Symptoms of Lyme may present as a flu-like illness (fever, muscle aches, headache, fatigue, nausea and joint pain) or a rash so pale or oddly positioned that it’s barely noticeable. Unfortunately, there is no accurate way to test for Lyme, especially in its early stages. And there are many more symptoms. Lyme disease can cause everything from an upset stomach, to mood swings, to seizures and facial paralysis. Click here for the full list of symptoms (almost 100 to be exact).

 

Courtesy: Global Lyme Alliance

 

Treatments

Treatments for Lyme disease vary from patient to patient depending upon the stage and severity of symptoms, presence of co-infections, age and other clinical factors. The most common treatment for early stage Lyme disease is a 14-21 day course of oral antibiotics such as doxycycline for those age 8 or older. If you take antibiotics within a few weeks of infection, Lyme is treatable.

However, even when Lyme is treated in a timely and recommended manner, up to 20 percent will fail treatment and go on to develop post-treatment Lyme disease syndrome, also called “chronic” Lyme.

 

To Avoid Ticks

  • Don’t sit in the grass, lean against trees or fences.
  • If you hike, bike or run in the woods, stick to the middle of trails so you don’t brush up against leaves or tall grasses.
  • Don’t walk barefoot or in open sandals except on pavement. Even short grass can harbor ticks.
  • If you plan to be out in a Lyme-endemic area, or do lawn work, wear a long-sleeved shirt and tuck your pants into your socks.
  • Spray exposed skin with DEET for at least a 20 percent concentration. Treat clothing with permethrin (an insect repellent). Make sure to spray your shoes with it since ticks crawl up.
  • Toss clothing you’ve worn in a Lyme-endemic area either into a washing machine with water hotter than 130 degrees F. or in a dryer on high heat for 20 minutes.
  • Do a meticulous tick check of your body (including your scalp) at the end of a day that includes outdoor activity. Ticks like to set up shop in body folds, so pay particular attention to the groin area, navel, armpits and behind the ear and knee. A tick that’s attached to you might feel like a tiny bump.
  • If you do spot a tick, remove it with pointy tweezers.
  • Check your pets for ticks daily. Dogs are often called “tick taxis” because a tick can ride into your home on your pet’s body and move on to another pet or to you.

 

Little-Known Facts

  • Although many people think of Lyme as limited to the East Coast, it is found in all 50 states, as well as 80 foreign countries.
  • The name “deer tick” is misleading since ticks that carry Lyme are hosted by mice, squirrels, chipmunks, raccoons, in addition to many popular songbirds.
  • Lyme is called “The Great Imitator” because its symptoms can mimic many diseases including chronic fatigue syndrome, fibromyalgia, multiple sclerosis, bipolar disorder, lupus,arthritis, ALS, just to name a few. Misdiagnosis with these other diseases can delay the correct diagnosis and treatment of Lyme for years. As patients struggle for answers, once-treatable infections become chronic.
  • Per the CDC,” the number of people diagnosed with Lyme disease each year in the United States is around 300,000. Notably, these estimates do not affect our understanding of the geographic distribution of Lyme disease. Lyme disease cases are concentrated in the Northeast and upper Midwest, with 14 states accounting for over 96% of cases reported to CDC”.

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Funders

MetroFocus is made possible by James and Merryl Tisch, the Anderson Family Fund, Judy and Josh Weston, Bernard and Irene Schwartz, the Sylvia A. and Simon B. Poyta Programming Endowment to Fight Anti-Semitism, Sue and Edgar Wachenheim III, the Cheryl and Philip Milstein Family, The Dorothy Schiff Endowment for News and Public Affairs Programming, Jody and John Arnhold, Rosalind P. Walter, Ellen and James S. Marcus, the Dr. Robert C. and Tina Sohn Foundation, Laura and Jim Ross.

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