#LymeLight
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#LymeLight
#LymeResearchChallenge
#LymeLives
#LymeChallenge
About
We hope to raise money to fund the preliminary research for a book on the effects of Lyme and Lyme Like Diseases (LLDs). Ultimately, we hope to publish this book on lyme and the journey of some of the people who have been affected by it.
Background
One of the authors, Dale Jones, has personally been affected by lyme. “My life was critically changed following a bad bicycle accident in 2008. Following the accident, I had rotating symptoms from pelvic pain to dizziness, that I constantly accredited to the accident,” she said. “I had foot pain, dental pain, problems breathing, a softball size lump in my throat. By 2013 I could not stand for more than 5 minutes and could not walk up and down stairs,” Dale said as she recalled the worsening symptoms. “I saw specialist after specialist who said nothing was wrong.”
“The personal becomes political, so it is difficult to summarize this experience. The misdiagnoses and the medical institution have been very hard to navigate. There was one day after years of misdiagnoses that I wanted to commit suicide. I said to myself, ‘I’m overall a happy person, why do I want to kill myself?’ I called my best friend who was recently diagnosed with Chronic Lyme, who told me that my symptoms were very similar to hers. She was nearly certain that I had lyme.”
“That was only the beginning of my personal saga. And there are hundreds of thousands of people just like me who have not gotten help and many who are close to death. Once I realized I potentially had Lyme I went to my general practitioner who refused to treat me even though I showed up with a Lyme checklist and a printout of my medical history over the last 5 years that strongly suggested that I had Lyme. Fortunately, I know people in the field and I was able to find a new GP who was Lyme friendly, a longer story. Lyme literate MDs (LLMDs) are expensive and do not usually take insurance. Most Lyme suffers cannot afford treatment and most GPs do not have enough experience or will not treat Lyme,” Dale continued.
“My life has been significantly altered physically and emotionally, although I am lucky to be able to have a flexible schedule and financial means to meet these exorbitant bills and schedule. I have a LLMD, it takes 4 hours to travel to see her. Healing takes years, is painful, debilitating and very expensive.”
Presently, the CDC estimates 330k per year are infected, but there is cause for speculation because there are no reliable tests and Lyme is a clinical diagnosis not based on testing, further it doesn’t account for those who are misdiagnosed. Also, much like many other corners of the medical field, this one is not immune from lobbying and corruption. This book is timely because the odds of getting Lyme or a LLD is very high, this is not a highly publicized issue. Costs are exorbitant because insurance companies often do not cover the full course of treatment. It is a chronic disease that leaves many suffering.
The Book
This book will be a collaboration collectively written by Gretchen B. Rossman, Ph. D., and Dale M. Jones, Ed. D. Dr. Rossman is a professor at the University of Massachusetts and has numerous publications as a renowned author. Dr. Jones is a local business owner, social activist, and personally suffers from lyme.
The book will look at Lyme and LLDs from a social inquiry perspective. It will gather stories to illuminate the plight of those struggling. It will examine the decision making calculous people use when making decisions regarding their recovery. It will identify common trends within those with Lyme and LLDs and try to analyze qualitative data on a large, cohesive scale. Present literature is medically based and not accessible to common people; last publications were in 2009. This book tries to humanize the disease and follow the social trends as people struggle to find diagnosis and treatment. It will hopefully fill the gaps and be a helpful resource to those with it, hoping to learn of it, and will be a platform for further interest in the disease.
Where will your money go?
The authors are working without compensation. They’re all passionate about Lyme and hope to put Lyme in the #LymeLight. Funding will go directly into research and the cost of publishing.
The Challenge:
This is an important project and a disease that affects many people, yet the effects, prevention, and treatment are often unclear and unknown. We want Lyme to be part of the common discourse, and this book will help do that. We urge you to donate, whether it’s $10, $20, every little bit helps. We recognize that not everyone has the financial means to donate, so here’s the challenge. If you can’t donate, either post a link to this gofundme or a fact about Lyme on your social media and tag it #LymeLightChallenge.
#LymeResearchChallenge
#LymeLives
#LymeChallenge
About
We hope to raise money to fund the preliminary research for a book on the effects of Lyme and Lyme Like Diseases (LLDs). Ultimately, we hope to publish this book on lyme and the journey of some of the people who have been affected by it.
Background
One of the authors, Dale Jones, has personally been affected by lyme. “My life was critically changed following a bad bicycle accident in 2008. Following the accident, I had rotating symptoms from pelvic pain to dizziness, that I constantly accredited to the accident,” she said. “I had foot pain, dental pain, problems breathing, a softball size lump in my throat. By 2013 I could not stand for more than 5 minutes and could not walk up and down stairs,” Dale said as she recalled the worsening symptoms. “I saw specialist after specialist who said nothing was wrong.”
“The personal becomes political, so it is difficult to summarize this experience. The misdiagnoses and the medical institution have been very hard to navigate. There was one day after years of misdiagnoses that I wanted to commit suicide. I said to myself, ‘I’m overall a happy person, why do I want to kill myself?’ I called my best friend who was recently diagnosed with Chronic Lyme, who told me that my symptoms were very similar to hers. She was nearly certain that I had lyme.”
“That was only the beginning of my personal saga. And there are hundreds of thousands of people just like me who have not gotten help and many who are close to death. Once I realized I potentially had Lyme I went to my general practitioner who refused to treat me even though I showed up with a Lyme checklist and a printout of my medical history over the last 5 years that strongly suggested that I had Lyme. Fortunately, I know people in the field and I was able to find a new GP who was Lyme friendly, a longer story. Lyme literate MDs (LLMDs) are expensive and do not usually take insurance. Most Lyme suffers cannot afford treatment and most GPs do not have enough experience or will not treat Lyme,” Dale continued.
“My life has been significantly altered physically and emotionally, although I am lucky to be able to have a flexible schedule and financial means to meet these exorbitant bills and schedule. I have a LLMD, it takes 4 hours to travel to see her. Healing takes years, is painful, debilitating and very expensive.”
Presently, the CDC estimates 330k per year are infected, but there is cause for speculation because there are no reliable tests and Lyme is a clinical diagnosis not based on testing, further it doesn’t account for those who are misdiagnosed. Also, much like many other corners of the medical field, this one is not immune from lobbying and corruption. This book is timely because the odds of getting Lyme or a LLD is very high, this is not a highly publicized issue. Costs are exorbitant because insurance companies often do not cover the full course of treatment. It is a chronic disease that leaves many suffering.
The Book
This book will be a collaboration collectively written by Gretchen B. Rossman, Ph. D., and Dale M. Jones, Ed. D. Dr. Rossman is a professor at the University of Massachusetts and has numerous publications as a renowned author. Dr. Jones is a local business owner, social activist, and personally suffers from lyme.
The book will look at Lyme and LLDs from a social inquiry perspective. It will gather stories to illuminate the plight of those struggling. It will examine the decision making calculous people use when making decisions regarding their recovery. It will identify common trends within those with Lyme and LLDs and try to analyze qualitative data on a large, cohesive scale. Present literature is medically based and not accessible to common people; last publications were in 2009. This book tries to humanize the disease and follow the social trends as people struggle to find diagnosis and treatment. It will hopefully fill the gaps and be a helpful resource to those with it, hoping to learn of it, and will be a platform for further interest in the disease.
Where will your money go?
The authors are working without compensation. They’re all passionate about Lyme and hope to put Lyme in the #LymeLight. Funding will go directly into research and the cost of publishing.
The Challenge:
This is an important project and a disease that affects many people, yet the effects, prevention, and treatment are often unclear and unknown. We want Lyme to be part of the common discourse, and this book will help do that. We urge you to donate, whether it’s $10, $20, every little bit helps. We recognize that not everyone has the financial means to donate, so here’s the challenge. If you can’t donate, either post a link to this gofundme or a fact about Lyme on your social media and tag it #LymeLightChallenge.
Organiser
Dale M. Jones
Organiser
Belchertown, MA
