Invisible Not Broken – Chronic Illness Podcast Network….
By Allie Cashel
“THE WORK I’M MOST PROUD OF IS WHEN I’M DOING THE LEAST TALKING…
AND I’M SHAPING THE CONVERSATION AROUND [OTHERS’] EXPERIENCES.
I’M LEARNING FROM OTHER PEOPLE’S STRENGTHS AND JOURNEYS” – ALLIE CASHEL
Allie Cashel is the author of Suffering the Silence: Chronic Lyme disease in an Age of Denial (North Atlantic Books) and is the co-founder and president of The Suffering the Silence Community, a nonprofit organization dedicated to breaking the stigma surrounding chronic illness and disability. Since starting work with STS, Allie has been invited to facilitate work shops and to speak about disability, inclusion, and storytelling at events around the country. She has appeared in a number of global media outlets, including Good Day NY (Fox5) and NowThis Live News, and has presented her work at a United States Congressional Forum.
Alongside her advocacy work in the illness and disability community, Allie works as a marketing and content development consultant for nonprofit and mission driven companies in the United States and Europe. Highlights from her current consulting work include managing the 2018 Our World is Kind Photography contest with Envision Kindness, empowering youth activism with The Service Learning Project, and bringing community voices into the marketing strategy and brand development at the social impact startup, https://blog.mighty-well.com/
Harnessing the power of storytelling, she gives voice to individuals and organizations working to create positive change in the world. Allie graduated from Bard College in 2013 with a BA in Written Arts and lives in Burlington, VT. Lyme disease is one of the fastest growing vector-borne diseases in the world and urban residents in cities with regularly travelling populations should be considered high risk yet there is a little awareness of the issue amongst
either patients or doctors.
Lyme Disease: medical myopia and the hidden epidemic 1st Edition, Kindle Edition…
Based on years of diagnosing and treating this growing problem in NY City, Dr Raxlen, together with ‘expert patient’ Allie Cashel and a team of international contributors, provides a road map for individuals who suspect they have been infected and are lost in the ‘medical maze’ of Lyme and other tick-borne diseases, searching for a diagnosis and appropriate treatment.
By highlighting the difficulties sufferers face, Raxlen et al aim to increase understanding of
the Lyme epidemic worldwide and how sufferers can obtain reliable and
effective diagnosis and treatment.
From the Beginning….
Born in London, U.K., Allie Cashel moved with her family to Westchester, NewYork.
A 2013 graduate of Bard College’s Written Arts Department, Allie is a first-time author,
Suffering the Silence began as her senior thesis project at Bard College and has since
developed into a full-length memoir which details her own experience, and shares the stories
of a number of other Chronic Lyme patients from around the world, acting as a living portrait of the disease and its patients’ struggles for recognition and treatment.
Suffering the Silence was published on September 8, 2015 by North Atlantic Books, a health and wellness publisher based out of Berkeley, CA, distributed by Random House. When I was first diagnosed with Lyme disease when I was seven years old. I had all the classic signs of infection — a tick bite, a fever and the infamous Bull’s-eye rash, which appeared like a red target on my thigh. I lived in Irvington, N.Y. at the time, where awareness of the disease,
and its infection through tick bites, is high.
So that summer in 1998, I quickly tested positive for Lyme, and joined the estimated 300,000 other people who are diagnosed with Lyme disease every year in the U.S. I took the traditional three weeks of the antibiotic Doxycycline, and everyone assumed I was cured.
Unfortunately, my Lyme story was far from over.
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As I went through puberty, I started to experience extreme fatigue and lasting muscle and joint pain. My persistent symptoms prompted new blood work, and in high school I was diagnosed with Lyme again. In the fall of my senior year, I struggled to read, speak, drive, and even to hold my fork at dinnertime. My tests also revealed three other infections that had yet to be treated: Babesia, Bartonella, and Erichilia, diseases that can all be transmitted in the bite of one tick. Doctors were unsure if this new diagnosis was related to my original bite. After all,
I was outside all the time, living in one of the most endemic areas of the world,
and it was entirely possible I had been infected again.
And so I spent the next three years on a constant stream of IV antibiotic therapy, an effort to keep my worsening symptoms at bay. Spending my adolescence in IV clinics felt as emotionally demanding as it was physically. When the treatment became too difficult, I worked instead to fight my disease with diet changes and high-dose vitamin therapies. Though I didn’t know its name at the time, the Autoimmune Paleo Diet was personally one of the most successful treatment experiences I’ve had to date. I was healthy for almost a year.
But when I turned 17, I experienced my first neurological symptoms of Lyme disease. In the fall of my senior year, I struggled to read, speak, drive, and even to hold my fork at dinnertime. Throughout most of my life, living with Lyme had meant dealing with fatigue, joint and muscle pain. Now years later, difficulty speaking and feeling lost in my school hallways became the new normal. I thought I had learned what it was like to live with Lyme,
but now this felt like a whole new disease.
Why I’m Opening Up About Life With Lyme?
It’s hard to describe daily life with Lyme disease, because it’s always changing. When I meet other patients who suffer from chronic Lyme disease and other tick-borne illnesses, I’m always surprised by how different their experiences are from my own. Diagnosis stories, treatment stories, and even symptoms can vary greatly between patient narratives. As a culture, we tend to think of illness as something that’s easily defined by medical textbooks, or solved by a single prescription. Our expectation is for patients to get sick, and then get better. But chronic illness is more complicated than that. And as a result, when we talk about Lyme, patient experiences are often dismissed, simplified, or even ignored.
And so I’ve recently started opening up and telling my story. It hasn’t been easy, but finding my voice has been an incredibly powerful tool in the healing process. Every time I share my experience, I’m encouraged to accept the peaks and valleys of this disease, and not to judge differences in individual experiences. I know how difficult the inconsistency of chronic illness can be, but the simple act of owning that inconstancy is helping me to move forward and heal.
For almost two full years now, I’ve been very lucky to feel healthy, thanks to a combination of high-dose vitamin therapy and managing flares of symptoms with the Autoimmune Paleo Diet. I’m 27 years old now, and though I’m scared that one day I’ll fall back into the pain and fog of Lyme, I’m optimistic that I’ve left the worst of Lyme disease behind me.
There is a lot that still needs to be done to reform the patient experience and cultural perception of tick-borne disease. Better diagnostic tests need to be developed, stronger data needs to be collected, and patients need more support. But perhaps the first thing we need to do in order to see real progress is to speak out about the complexity of our experiences and push for a more flexible understanding about what it means to live with Lyme disease.
What do you do if you contracted Lyme at age 7 and you are now 24?
If you’re Allie Cashel, you interview sixteen people with Lyme and write a book, called Suffering the Silence: Chronic Lyme Disease in an Age of Denial. Due out September, 7, 2015, the book shares stories of Lyme patients from around the world, as well as perspectives from prominent Lyme physicians Dr. Bernard Raxlen and Dr. Richard Horowitz and Lyme research scientists Dr. Richard Ostfeld , Dr. Felicia Keesing and Nicola McFadzean Ducharme, ND is the founder and Medical Director of RestorMedicine. She practices holistic medicine specializing in Lyme disease, hormone balancing, autistic-spectrum disorders,
preconception health care and digestive disorders.
While At Envita they have a unique understanding of Chronic Lyme disease and have been treating patients for nearly 20 years; have developed proprietary techniques and have the experience to treat the neurological symptoms associated with chronic Lyme helping to facilitate recovery and the return of quality of life to patients.
Allie was diagnosed in 1998, fortunate to have a bulls-eye rash and clear-cut diagnosis from standard blood tests. Asymptomatic as a child, after treating with antibiotics, Allie thought she was cured. Then adolescence hit, and a host of symptoms too, including joint and muscle pain, and fatigue. Tests revealed that she was co-infected with Babesia, Bartonella and Erlichia.
After more treatment she was feeling well, but in her last year of high school the pain returned, with new symptoms including a stammer, spotty vision, memory problems, getting lost at school, and frequent car accidents (6 in 6 weeks). Her family had moved to a new city,
so she went to a new doctor.
Without even examining her, this physician told Allie’s mother that, “It was impossible that I was suffering from any sort of biological infection – that instead I was having a mental breakdown in response to my parents’ move and was regressing to infancy because I wanted to be closer to them, so that’s why I couldn’t do things that a normal adult could do like read or talk or drive a car.” Allie says, “I knew that there was something else going on…but I was in a place where I was really struggling to communicate at all, so I didn’t necessarily have the tools or presence of mind to communicate that.”
Allie’s family was supportive, and she went back to her previous physicians who better understood the disease, receiving treatment that got her well again. Returning to school, Allie recalls, “The experience was so traumatic for me that I didn’t want to deal with it at all. I didn’t want to talk about it. I didn’t want people to know about it. I lied to friends when they asked me where I had been for the first 3 months of school. I was embarrassed and totally terrified that if I told them my story, people wouldn’t believe me.”
It wasn’t until her senior year of college when she began interviewing other people with Lyme that she began to “sort of own all the weird complexities and ups and downs and confusion that came along with my experience of this disease and found that many other
people were in that same boat with me.”
The experience was transformative, setting her on the path of Lyme advocacy.
Cashel created a Suffering the Silence online community, where young people with Lyme and other chronic diseases share their experience in positive and proactive voices. She envisions in the future that the site will have content organized by themes, and her goal is to reach many more people. She will embark on a multi-city book tour in September, and hopes to hold meet-up groups in each location along the way. Lyme patients or caregivers of all ages
are welcome to contact Allie directly to arrange a meet-up.
Questions & Answers!!!
LN: What stood out for you in interviewing people with Lyme?
AC: One of the things that struck me the most was how isolated people felt…many of them were in situations that were quite supported, (in terms of people taking care of them), and yet they still felt incredibly isolated…The language that they used to describe sensations was incredibly consistent across the board…their muscles crawling or their skin being on fire.
LN: When you look back, what did you struggle with?
AC: I didn’t know what to say about it. There wasn’t a language that existed for me to explain things to people or explain things to my family or friends, so I didn’t. It just turns out that you have to invent that language, to help figure out what the narrative is,
and we haven’t totally done that yet.
LN: What is it like going through Lyme as a teenager/young adult?
AC: As a teenager, that’s a time in your life when you are supposed to be making big declarations of what you like or don’t like, what band you think is cool or not cool. I was in this place where I didn’t even know if I could trust my own experience of what was happening in my body, so I struggled to say “I like these things; I don’t like these things,” because I was struggling so much to own my own physical and emotional experience…I pushed back so much against this idea of my experience being psychological, but in looking back on it,
of course it was psychological.
It wasn’t purely psychological…but our physical experience of the world, whether it’s disease, whether it’s complete health, …whatever it is, informs our psychological experience of the world…In reality I needed to find a way to fuse those two ideas together and I think that would have helped me to have a stronger sense of even what it was that I was going through.
It wasn’t until I started to reflect on it and started to process it years after,
that I was able to understand that.
LN: What could we create to help young people with Lyme?
AC: I spoke to a girl recently who suffered from Leukemia as a kid. Now in her twenties she is dealing with Lyme. She said that having cancer was a significantly easier experience for her than having Lyme has been…when she had cancer, the community rallied behind her. Her family rallied behind her. Everyone was there to support her, and to support those that were supporting her. And in this case (Lyme), she feels that is completely at a loss. If we were able to provide resources to caregivers, even just the acknowledgment that they are going through something serious, I think that would help to provide a sense of stability for young people who are going through this.
Also, I think we need to create some kind of space where they can talk about things they don’t want to talk about with their doctor or their Mom – questions like sex questions or relationship questions, or what does it mean if you’re 17 and all your friends are getting drunk and you’re not sure if you can drink because of your antibiotics. You might not want to say, “Hey, Mom, is it cool if I drink?” That’s not a conversation you necessarily want to have with an adult, so to create some sense of community with younger people. Those sort of day to day life questions, we don’t have answers for young people. When you feel like you don’t know the answers to tiny questions, then the bigger questions – the identity questions, the pain questions – feel impossible to answer because we can’t even answer the smaller ones.
LN: What helps people get through Lyme?
AC: It may be optimistic of me or naivety of me, but I think positivity helps. And positivity helps people get better. And even if it doesn’t help them get better, it helps them feel better.
LN: If you could say anything to a young person with Lyme, what would it be?
AC: I would say that it will get better. It’s okay to feel sad and angry and frustrated, but it’s also really important to remember that you’re still really young and you have a long life to lead. Things you hoped you might accomplish by the time you were a certain age, even if you have to push that back by six months, you’re going to get to do all that if you work to make yourself healthy. And I would say that I’m sorry that there aren’t more resources and there isn’t more medical support for you to go through this. But if you empower yourself and advocate for yourself, there is definitely a light at the end of this tunnel and it is just a matter of
working to get there.”
By Listening to GOOD MUSIC 🙂
BE A FRIEND IN THE FIGHT!
HTTP://WWW.SOLITARIUS.ORG/?S=LYME+DISEASE
Health care providers reported at least 2,150 confirmed and probable Lyme disease
cases to Maine CDC in 2019. For more information on Lyme disease
and to view the 2020 winning posters and past poster submissions visit www.maine.gov/lyme/month.
Maine Lyme disease data, including town-level and near real-time data, are available
through the Maine Tracking Network. Visit www.maine.gov/lyme
and click on “Maine Tracking Network: Tickborne Diseases” in the menu on the left.
Check out videos on Maine CDC’s YouTube channel:
https://www.youtube.com/user/MainePublicHealth.
GETTING RID OF MY LYME AFTER 5 YEARS (LymeStop)
YouTube · 680 views
· 8/13/2019
· by
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Dr. Erlandson recovered from chronic lyme disease through a natural technique called LymeStop developed by Dr. Tony Smith.
Dr. Erlandson is a licensed LymeStop practitioner serving Wisconsin, Minnesota, and Iowa.
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Dr. Erlandson also has written an article about his journey and the LymeStop technique.
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Dietrich Klinghardt, MD, PhD Based on an Idaho doctor’s important discovery, this revolutionary therapy has been a Godsend
for many who have suffered with this debilitating disease. Whether you’ve just been diagnosed — or have already “tried everything” —
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LYMESTOP My Personal Story-Dr. Ben Erlandson Up until I was 29 years old I had never experienced any true health problems.
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Where Other Facilities Have Failed.
I am reminded of a passage I once read in a book called God Calling.
“In a race it is not the start that hurts, not the even pace of the long stretch. It is when the goal is in sight that heart and nerves and courage and muscles are strained almost beyond human endurance, almost to breaking point.
So with you now the goal is in sight…”
Jenny Lelwica Buttaccio, OTR/L, is a writer, occupational therapist, and certified Pilates instructor. For more than a decade, she has battled Lyme disease, Chronic Fatigue Syndrome and Interstitial Cystitis. She is the creator of the DVD, New Dawn Pilates: pilates-inspired exercises adapted for people with pelvic pain. Jenny is a health and wellness advocate who shares her personal healing journey with the support of her husband, Tom, and two rescue dogs, Caylie and Emmi. You can see her work online Here
https://www.bing.com/search?q=Jenny+Lelwica+Buttaccio%2c+&FORM=HDRSC1
She is also an exercise contributor to the book:
The Proactive Patient by Gaye and Andrew Sandlar.
http://lymeroad.com/tag/lyme/page/2/
To find resources on Lyme Disease PREVENTION… Educate yourself on doctors
and TREATMENT…. Learn more about the most current scientific RESEARCH…
And JOIN OUR FIGHT AGAINST LYME,
Visit: https://theavrillavignefoundation.org/lyme
Watch: https://www.youtube.com/watch?v=EKF6ghfcQic
https://www.youtube.com/watch?v=6zckQ5kxXkM&feature=emb_title
https://www.youtube.com/watch?v=7H9A4996g4U