TOUCHED BY LYME: “Lyme Ninja Radio” informs and inspires
Mackay Rippey, an acupuncturist in upstate New York, was bitten by a tick about 12 years ago. Soon he found a bull’s-eye rash on his arm and began to experience what felt like “the worst case of flu I ever had…truly miserable.”
But he knew the signs, recognized that he had Lyme disease, and was immediately diagnosed and treated. (A course of doxycycline followed by acupuncture and teasel root.)
“I was lucky,” Rippey says. “I got doxy almost immediately and did not have any underlying health complications.”
But all around him, in the highly Lyme-endemic area where he lived, he saw many who were not so fortunate. People whose Lyme went undiagnosed for years as their health continued to deteriorate. Patients denied medical treatment because they didn’t meet the IDSA’s strict definition of Lyme disease. Parents desperate for support and information for themselves and their children.
Seeking a new way to help, in August 2014, Rippey and his daughter Aurora started an ambitious project called “Lyme Ninja Radio.” Over the past two years, they have produced weekly podcasts covering many aspects of Lyme disease. They are soon to release their 100th episode. Explains Rippey:
We have two types of interviews. The first includes experts who talk about Lyme from their experience as medical professionals or researchers. The second category is what we call a Lyme Ninja. That’s somebody who actually has Lyme disease and is developing their “ninja skills” to deal with it. Sometimes a person is both a Lyme Ninja and an expert.
Lyme Ninja Radio has interviewed such well-known Lyme authorities as Dr. Richard Horowitz, Dr. Alan MacDonald, Dr. Eva Sapi and Dr. Robert Bransfield. They’ve also talked to authors of Lyme-related books, such as Katina Makris, Dr. Nicola McFadzean Ducharme, and (ahem!) me. And many others with useful information to share. See the complete list here. All podcasts are available for you to listen to anytime, for free.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.
I appreciate the chance to share my story, thanks, Dorothy.
I’d love to see Lyme Ninja Radio interview Carl Tuttle.
Sounds great!! How true – we have to hone our survival fight skills – I’ll listen to some of it soon…
My son was just diagnosed with limes I think he was bitten about 3weeks ago he has 4or 5 rashes. Starts treatment tonight
You may be interested in my book, “When Your Child Has Lyme Disease: A Parent’s Survival Guide.” http://www.lymeliteratepresss.com. Also see: https://www.lymedisease.org/lyme-basics/lyme-disease/children/ –DKL
I felt something bite my leg three years ago and began having symptoms soon after. I immediately went to a doctor had a biopsy, blood tests , and was given 10 days of an antibiotic. The tests came back negative. After a few weeks my legs began to swell and I started havi g pain. That started my many visits to various doctors within the Cleveland Clinic System. I thought I was receiving the best of care. I saw hematologists, dermatologists, rheumatologists, neurologists, infectious disease doctors, othropedics, vascular doctors, and my primary care physician. I had so many tests for evey disease imaginable and was retested for Lyme. According to the doctors nothing was wrong with me. My symptoms continued to increase and worsen. My pain now is constant in my knees, arms, back, and buttocks. I can’t stand for more than a few minutes. I’m dizzy, lightheaded and nauseous. I have headaches that last for weeks. My arms go numb and feel like they weigh 500 pounds each. I have insomnia and average 3 hours of sleep a night even with taking a combination of four natural sleep aids with prescribed Lunesta. I have brain fog. Sometimes when I’m speaking I can’t find the word I want to say. I’m currently being treated with just vitamins and supplements but nothing is working. I dont know what to do or where to go for help since no one will acknowledge i have Lyme. I’m missing more and more work as I become increasingly I’ll. Every second of my life is pure misery. If I can’t get some help I really don’t want to live like this anymore
Recommend you be seen by an ILADS-affiliated doctor.
Joanne, you can sign up at www lymenet org and post in the Seeking A Doctor section that you’re looking for a Lyme-treating doctor and put your state in the heading. Experienced patients will send you referrals in private messages.
Joanne, I had to write. Your symptoms could have been written about me. In addition to the symptoms you listed, I also began to have Parkinsonian-type tremors, loss of coordination of my arms & legs and major cognitive issues so bad I once had to use my GPS to find my way home because I missed my street. Speech became almost impossible. I found an ILADS Lyme doctor! Started treating last June. During my treatment we also discovered co-infections, mold toxicity and heavy metal toxicity. Here’s the great part – I’m winding down all my treatments! Back to work full-time, exercising, playing with grandkids – Life is Great! It wasn’t an easy journey – but I just kept chipping away. Supplements, vitamins, antibiotics and lots of just plain determination. My LLMD worked WITH me not against me. You can get better; but you need to find the right doctor. The last neurologist I saw before my LLMD stepped in actually put me on Parkinson’s medicine and Myasthenia Gravis meds. Although the tests were negative, she actually told me to increase the meds “if I thought they helped”! My LLMD worked with an ND that was closer to my home for treatments. By the way….not sure if you noticed; but I’m a “Johanne”, too! Best of luck to you! You can get on the other side of this.