Suffering the Silence and Finding a Voice

Allie CashelBy Allie Cashel

The following is a guest post by a young author and Lyme patient who has turned her experience into a catalyst to help others find their voice and break the silence around long-term struggles with Lyme disease and other chronic illnesses. You can read more about Allie in our Faces of Lyme section and on her own website, sufferingthesilence.com.

Allie has a new book due out in early September, Suffering the Silence: Chronic Lyme Disease in an Age of Denial. Bay Area Lyme Foundation will be co-hosting a reading and book signing at Books Inc. in Mountainview, CA on Tuesday, September 15th at 7:00pm.  Come join us at the event and meet this engaging young speaker!

Everyone knew about Lyme disease in the town where I grew up. “Easy to diagnose and simple to treat,” people said. “As long as you get the medicine in you, you’ll be fine.” As a kid, I was always hearing stories about someone who had recently been diagnosed with Lyme – parents, cousins, siblings, pets – and in almost every case, the stories I heard were short.

Fight Lyme Disease. Spread the Word!!

Sarah Herbert_Backpack_250Recently we received this letter from a young Lyme sufferer who took the initiative and leveraged her frustration from battling Lyme disease and the hope that her recent diagnosis has now brought to create this powerful educational video about the disease and how to stay safe.

Sarah H. was diagnosed with Lyme in 2014 after battling the symptoms for more than 20 years without an accurate diagnosis. You can read more about her personal Lyme story here on our Faces of Lyme feature and see another of her prevention videos.

Act Now! 30-day Public Comment Period on Lyme Disease Treatment Guidelines

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The Infectious Diseases Society of America (IDSA), the American Academy of Neurology (AAN) and the American College of Rheumatology (ACR) are jointly developing a systematic review and guideline on treatment of Lyme disease.

The 30-day open Public Comment period on the Lyme Disease Guideline Project Plan started March 8 through April 9.During the Public Comment period, anyone may comment on any aspect of the Plan, including the methodology and development process utilized as well as adherence to the IOM standards. Please see here for more details.

Elet Hall, Ninja Warrior, Lyme Survivor

Elet Hall is nothing short of a marvel. This amazing athlete is a four-time competitor on American Ninja Warrior, where he is known as “The Natural” for his seemingly effortless runs. The first two years he successfully made it to the Las Vegas finals despite suffering from undiagnosed Lyme disease. Shortly after the 2013 finals, he woke up one day with facial paralysis and his joints and limbs numbed with fatigue. After being diagnosed and successfully treated for Lyme disease, he again returned in 2014 to triumph in his third attempt at the competition. After dominating Stage 1 and Stage 2 of the national finals, Elet finally succumbed to the floating doors in Stage 3, coming in 2nd place in his third attempt at the competition.

This year, Elet again returned to the ANW stage, with a dominating “run of the night” at the 2015 Pittsburgh Qualifiers. (Check out Elet’s facebook page for the video!and then headed to the Pittsburgh City Finals on August 10th. At the finals, Elet had a tough run, narrowly surviving a missed grab on the monkey bars before finally slipping on the last few doorknobs. Even with the surprising fall, however, Hall still was among the fastest finalists, qualifying him to move on to Las Vegas for the national finals and the battle for a $1 million grand prize. [Read here for more about the August finals.) Unfortunately it was not Elet’s year to walk away with the grand prize but we will be rooting for him in next year’s competition!!

Here in a November 2014 excerpt from a longer story on our Faces of Lyme feature, he shares some perspective about the challenges of fighting Lyme disease as an athlete:

Louis’s Story: In His Own Words

Louis

8-year-old Louis S was bitten by a tick in late 2007 but not diagnosed with Lyme disease until a year later. Like many patients, he never had the distinctive bullseye rash and it took months of suffering through fever, fatigue, and joint pain before he was tested and diagnosed, at which point the illness had become quite debilitating. He shares his story here.