http://www.kentuckyindianalymesupport.org/logans-journey-thru-lyme/
Logan’s Journey Thru Lyme
Just a brief thank you to three partners supporting our Journey Thru Lyme project.
Jigsaw Health is providing me a six-month supply of their Jigsaw Ultimate daily supplement pack…hugely important to maintaining a strong immune system. http://www.jigsawhealth.com
Insect Shield is providing me a complete outfit of the clothing made with fabric impregnated with Permethrin – very effective in repelling and killing ticks and other pests.http://www.insectshield.com
Quest Outdoors is providing me the trail shoes I need to cover 2000+ miles, in this case the La Sportiva Raptor model. http://www.questoutdoors.com
And all three of these great partners are helping spread our videos and information on preventing tick-borne illnesses and the facts about the Lyme disease epidemic in the US.
Jigsaw Health is providing me a six-month supply of their Jigsaw Ultimate daily supplement pack…hugely important to maintaining a strong immune system. http://www.jigsawhealth.com
Insect Shield is providing me a complete outfit of the clothing made with fabric impregnated with Permethrin – very effective in repelling and killing ticks and other pests.http://www.insectshield.com
Quest Outdoors is providing me the trail shoes I need to cover 2000+ miles, in this case the La Sportiva Raptor model. http://www.questoutdoors.com
And all three of these great partners are helping spread our videos and information on preventing tick-borne illnesses and the facts about the Lyme disease epidemic in the US.
Sorry for the length of this video, but this is important information as we approach spring and ticks become more active.
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Introductory video for my 2013 Journey Thru Lyme Appalachian Trail Thru-hike to promote Lyme disease awareness. The latest CDC surveillance data estimates approximately 1 MILLION people have been infected in just the last three complete years of tracking (2009 – 2011). Map here: http://module.lymediseaseassociation….
Even worse, as many as 90% of these people have gone undiagnosed or have been misdiagnosed and are not being treated for this devastating infection. 2013 is the year the world-wide Lyme community will be heard…here is how I intend to do my part. I hope you will help by sharing this information and subscribing to my channel. Thanks!
My first backpacking trip in almost two years after battling Lyme disease.
Saturday, November 17, 2012
Saturday, November 17, 2012
Here is a concept paper I wrote about my plan to hike the AT for a cause near and dear to me: An Advocacy, Public Awareness and Fundraising Project by Logan McCulloch
My Objective
I am a survivor of Lyme disease, a debilitating infection that can wreck the body and the mind. Lyme is a rapidly spreading epidemic affecting millions, and it is largely being ignored. I plan to share and leverage my experience to raise awareness, hope, knowledge and financial resources to empower those who face the challenge of Lyme disease and related co-infections. I intend to complete a six month, 2,180 mile journey on The Appalachian Trail (AT) in 2013. As I recover my health, I simply cannot walk away from the absolute nightmare Lyme sufferers face in this country and around the world. So I will walk, and walk, and walk some more. Five million steps on behalf of literally millions who cannot get the help they need, and in far too many cases are being belittled, marginalized or just ignored as they struggle to recover their health and their lives. This is a devastating national epidemic and deserves a national response.
I am a survivor of Lyme disease, a debilitating infection that can wreck the body and the mind. Lyme is a rapidly spreading epidemic affecting millions, and it is largely being ignored. I plan to share and leverage my experience to raise awareness, hope, knowledge and financial resources to empower those who face the challenge of Lyme disease and related co-infections. I intend to complete a six month, 2,180 mile journey on The Appalachian Trail (AT) in 2013. As I recover my health, I simply cannot walk away from the absolute nightmare Lyme sufferers face in this country and around the world. So I will walk, and walk, and walk some more. Five million steps on behalf of literally millions who cannot get the help they need, and in far too many cases are being belittled, marginalized or just ignored as they struggle to recover their health and their lives. This is a devastating national epidemic and deserves a national response.
Background
I have been an avid long distance backpacker and a passionate non-profit executive for more than 20 years. In May of 2011 I was bitten by more than 20 very tiny deer tick nymphs while on a backpacking trip with my son in Mammoth Cave National Park (see attached article from the Louisville Courier-Journal). At the time I thought I had removed all of the ticks within 12 hours, and mistakenly believed that meant I was safe from Lyme transmission. It later became clear that I was infected, although I was misdiagnosed for more than five months. I experienced the classic “Lyme is almost unheard of here” response from several physicians as my symptoms progressed over the summer and fall of 2011. By October my brain fog, wide spread arthritis, fevers and crushing fatigue made it difficult to function on a daily basis. Most days I would drag myself out of bed, survive a day of work, and collapse at home as my mind, memory and physical health quickly deteriorated. My doctor wanted me to get an MRI to rule out MS, but refused to consider Lyme disease. I later learned that his was an all too common response.
Fortunately, via the resources and information provided by the Lyme disease internet community, I found my way to the nearest Lyme Literate Medical Doctor (LLMD) in a neighboring state in November of 2011 (there are no LLMD’s in KY). By chance I also heard about the newly formed Kentuckiana Lyme Support Group and attended their second meeting that same month. After eight months of intense treatment I have begun to recover my health and my life. During that time I became well versed in the history, controversy and ignorance surrounding what the Center for Disease Control (CDC) calls the fastest growing vector-borne epidemic in the United States. This is information that must be shared. Millions can prevent or recover from this awful illness if we foster an open national dialogue about Lyme disease.
I have been an avid long distance backpacker and a passionate non-profit executive for more than 20 years. In May of 2011 I was bitten by more than 20 very tiny deer tick nymphs while on a backpacking trip with my son in Mammoth Cave National Park (see attached article from the Louisville Courier-Journal). At the time I thought I had removed all of the ticks within 12 hours, and mistakenly believed that meant I was safe from Lyme transmission. It later became clear that I was infected, although I was misdiagnosed for more than five months. I experienced the classic “Lyme is almost unheard of here” response from several physicians as my symptoms progressed over the summer and fall of 2011. By October my brain fog, wide spread arthritis, fevers and crushing fatigue made it difficult to function on a daily basis. Most days I would drag myself out of bed, survive a day of work, and collapse at home as my mind, memory and physical health quickly deteriorated. My doctor wanted me to get an MRI to rule out MS, but refused to consider Lyme disease. I later learned that his was an all too common response.
Fortunately, via the resources and information provided by the Lyme disease internet community, I found my way to the nearest Lyme Literate Medical Doctor (LLMD) in a neighboring state in November of 2011 (there are no LLMD’s in KY). By chance I also heard about the newly formed Kentuckiana Lyme Support Group and attended their second meeting that same month. After eight months of intense treatment I have begun to recover my health and my life. During that time I became well versed in the history, controversy and ignorance surrounding what the Center for Disease Control (CDC) calls the fastest growing vector-borne epidemic in the United States. This is information that must be shared. Millions can prevent or recover from this awful illness if we foster an open national dialogue about Lyme disease.
About Me
In many ways I feel as if I’ve prepared for this project for most of my adult life. I am 52 years old and a native of Louisville, Kentucky. For the past 20+ years I have been a non-profit executive with expertise in fundraising, marketing, public relations and public speaking. My current position is Chief Development Officer for the Kentuckiana Region of the American Red Cross. In 2003 I hiked 215 miles of The AT and The Long Trail in Vermont over a two week period. During that trek I adopted the trail name (pseudonyms are common among long distance hikers) “Unitic”…which now seems somewhat prophetic given the nature and goals of this adventure.
Being an experienced backpacker I thought I was well informed about the facts of Lyme and other tick-borne diseases. I was wrong. As I began to personally experience the frustration and suffering caused by the misinformation and ignorance surrounding Lyme disease within my region and across the country, I chose to become active in the public awareness and advocacy efforts of the Kentuckiana Lyme Disease Support Group. Since the spring of 2012 I have utilized the skills and relationships developed over my professional career and worked with a core group of veteran “Lyme Warriors” to succeed in:
In many ways I feel as if I’ve prepared for this project for most of my adult life. I am 52 years old and a native of Louisville, Kentucky. For the past 20+ years I have been a non-profit executive with expertise in fundraising, marketing, public relations and public speaking. My current position is Chief Development Officer for the Kentuckiana Region of the American Red Cross. In 2003 I hiked 215 miles of The AT and The Long Trail in Vermont over a two week period. During that trek I adopted the trail name (pseudonyms are common among long distance hikers) “Unitic”…which now seems somewhat prophetic given the nature and goals of this adventure.
Being an experienced backpacker I thought I was well informed about the facts of Lyme and other tick-borne diseases. I was wrong. As I began to personally experience the frustration and suffering caused by the misinformation and ignorance surrounding Lyme disease within my region and across the country, I chose to become active in the public awareness and advocacy efforts of the Kentuckiana Lyme Disease Support Group. Since the spring of 2012 I have utilized the skills and relationships developed over my professional career and worked with a core group of veteran “Lyme Warriors” to succeed in:
•Conversing and sharing information with the leading tick entomologist at the University of Kentucky, and the state veterinarian and Assistant Director of the Kentucky Division of Epidemiology (February).
•Having an article published describing my story in the Louisville Courier-Journal (April).
•Hosting a free community screening of the documentary Under Our Skin (May).
•Conducting personal meetings with the Executive Director of the Greater Louisville Medical Society (GLMS), as well as the Director and staff of the Kentucky Division of Epidemiology (June).
•Getting a front-page above the fold article published entitled “Lyme Disease is Under Reported in Kentucky”, that profiled one of the members of our group and included supportive quotes from key staff at the Kentucky Division of Epidemiology, the University of Kentucky Department of Entomology and the GLMS.
The Appalachian Trail
The “AT”, as it is commonly called, is the oldest continuously marked long distance (2000+ miles) hiking trail in the United States. It spans 2,180 miles across 14 states from Georgia to Maine. Fully one third of the US population lives within a one day drive of the Appalachian Trail. It passes through what are considered endemic states for Lyme disease (Connecticut, New Jersey, New York, Pennsylvania, Virginia, etc.) as well as states where the myth persists that “Lyme is almost unheard of” (Georgia, North Carolina, Tennessee). The trail passes through or near many small towns, and most thru-hikers (hikers who complete the trail in one continuous journey) visit one for resupply, rest and clean-up about once each week. The AT passes within an hour train ride of Washington, DC at the midpoint near Harper’s Ferry, WV.
A typical thru-hike takes about six months depending upon the hiker. Over a six month period that means a hiker would average around 14 miles per day and could pass through roughly 25 small to mid-size communities across 14 states. Most hikers congregate and sleep in small three-sided shelters that are spaced at roughly 8 to 15 mile increments along the trail. At each shelter volunteers from local AT trail clubs place spiral notebooks called trail registers. The hikers pen entries, and with the differing travel speeds of hikers coupled with the fact that some travel North to South (the majority begin in GA and finish in ME), the shelter registers act as a sort of trail communication system. In addition, it is very common for many of the hikers to keep online web journals and/or blogs, updated weekly so family, friends and the general public can follow their adventures. An excellent 2012 video blog from “Loner” can be found here: http://www.youtube.com/watch?v=U9PLJ-2kBCc&feature=relmfu. In this episode (there are 124) “Loner” meets “FM”, another AT hiker/video blogger, at the Laundromat in Kent, CT.
The “AT”, as it is commonly called, is the oldest continuously marked long distance (2000+ miles) hiking trail in the United States. It spans 2,180 miles across 14 states from Georgia to Maine. Fully one third of the US population lives within a one day drive of the Appalachian Trail. It passes through what are considered endemic states for Lyme disease (Connecticut, New Jersey, New York, Pennsylvania, Virginia, etc.) as well as states where the myth persists that “Lyme is almost unheard of” (Georgia, North Carolina, Tennessee). The trail passes through or near many small towns, and most thru-hikers (hikers who complete the trail in one continuous journey) visit one for resupply, rest and clean-up about once each week. The AT passes within an hour train ride of Washington, DC at the midpoint near Harper’s Ferry, WV.
A typical thru-hike takes about six months depending upon the hiker. Over a six month period that means a hiker would average around 14 miles per day and could pass through roughly 25 small to mid-size communities across 14 states. Most hikers congregate and sleep in small three-sided shelters that are spaced at roughly 8 to 15 mile increments along the trail. At each shelter volunteers from local AT trail clubs place spiral notebooks called trail registers. The hikers pen entries, and with the differing travel speeds of hikers coupled with the fact that some travel North to South (the majority begin in GA and finish in ME), the shelter registers act as a sort of trail communication system. In addition, it is very common for many of the hikers to keep online web journals and/or blogs, updated weekly so family, friends and the general public can follow their adventures. An excellent 2012 video blog from “Loner” can be found here: http://www.youtube.com/watch?v=U9PLJ-2kBCc&feature=relmfu. In this episode (there are 124) “Loner” meets “FM”, another AT hiker/video blogger, at the Laundromat in Kent, CT.
Lyme disease on the Appalachian Trail
The clip below is an interview with two AT thru-hikers atop Stratton Mountain in Vermont. About 7 minutes in, both hikers describe contracting Lyme disease while on the trail: http://www.youtube.com/watch?v=Jwe-32KDcwU&feature=related. The first hiker (Jackrabbit) recounts an all too typical encounter with Lyme ignorance within the medical community which led to delayed treatment and worsening illness; the other (Larb) shares his experience meeting a Lyme aware physician who treated him appropriately based on a proper clinical examination.
The clip below is an interview with two AT thru-hikers atop Stratton Mountain in Vermont. About 7 minutes in, both hikers describe contracting Lyme disease while on the trail: http://www.youtube.com/watch?v=Jwe-32KDcwU&feature=related. The first hiker (Jackrabbit) recounts an all too typical encounter with Lyme ignorance within the medical community which led to delayed treatment and worsening illness; the other (Larb) shares his experience meeting a Lyme aware physician who treated him appropriately based on a proper clinical examination.
Sustained Public Relations and Public Awareness
Planned properly and with the support of a public relations team, there are numerous opportunities for stories and activities to highlight critical information regarding Lyme disease. Here are but a few examples of potential activities to raise awareness and public knowledge:
Planned properly and with the support of a public relations team, there are numerous opportunities for stories and activities to highlight critical information regarding Lyme disease. Here are but a few examples of potential activities to raise awareness and public knowledge:
•A thru-hike would allow me to personally place a supply of Lyme disease pamphlets (from Lymedisease.org) and write a Lyme “tip of the day” in the register of every shelter I pass for the benefit of both thru-hikers and other recreational hikers.
•Opportunities for print, television and radio stories with local, regional and national media along the route. Ongoing opportunities for sustained social media coverage.
•Simple Lyme support group gatherings in towns and public parks along the route (picnics, talks, etc.). Visual displays of Lyme green at events highlighting local human interest stories of Lyme and its impact could prove very attractive to regional media.
•An internet blog and a video blog that enable the Lyme community and the general public to join this adventure. Guest hikers including prominent figures and current and recovered Lyme patients could join the journey at various points along the way.
Advocacy and Hope
In addition to the fact that the trail passes very near Washington, DC, there are also opportunities for advocacy activities related to various state efforts to address Lyme disease. A Southbound hike begun in late June or early July could help sustain public interest generated during National Lyme Awareness Month in May The growing grassroots notoriety of the hike and associated events could be leveraged via advocacy trips to Capitol Hill for PR activities and lobbying by the greater Lyme community in support of a National Lyme Advisory Panel.
In addition to the fact that the trail passes very near Washington, DC, there are also opportunities for advocacy activities related to various state efforts to address Lyme disease. A Southbound hike begun in late June or early July could help sustain public interest generated during National Lyme Awareness Month in May The growing grassroots notoriety of the hike and associated events could be leveraged via advocacy trips to Capitol Hill for PR activities and lobbying by the greater Lyme community in support of a National Lyme Advisory Panel.
In addition to the tangible outcomes that could be derived from the project, an equally important intangible benefit would be inspiring hope among those suffering from this awful disease. Many in the midst of the life altering odyssey that is Lyme disease do not see a light at the end of the tunnel. Hopelessness is a very common experience and an impediment to healing. Promoting a positive story of someone recovering from Lyme, pursuing a dream and living life without fear could be a very powerful inspirational aspect of this adventure.
Fundraising
Direct fundraising components to support advocacy (such as Lymedisease.org) and research (such as Lyme Research Alliance, Inc.) could be integrated into this project. All financial donations for the Lyme disease advocacy and research goals of the project will go to IRS accredited not-for-profit organizations. Examples include:
Direct fundraising components to support advocacy (such as Lymedisease.org) and research (such as Lyme Research Alliance, Inc.) could be integrated into this project. All financial donations for the Lyme disease advocacy and research goals of the project will go to IRS accredited not-for-profit organizations. Examples include:
•Online hike sponsorships via a contribution per mile concept. Other local Lyme advocates and patients could join in with their own “friends asking friends” web pages such as those utilized for walks via Lymedisease.org. Just a nickel per mile equals $109 per donor. Just 500 donors at that level could help test Deer ticks in states like Kentucky to verify the percentage that carry the Lyme Borrelia bacteria.
•Donations could also support the research efforts to create accurate laboratory tests to detect the direct presence of the Lyme bacteria. This would be a critical advancement.
•Grassroots fundraisers held by local groups along the route and across the country.
•Corporate sponsorships for aligned and socially responsible companies.
Examples include outdoor equipment companies and retailers such as Granite Gear (my pack and accessories), La Sportiva (my hiking shoes), Quest Outdoors or REI (outdoor retailers), Canon (my current camera), etc. While I have all the necessary equipment to begin this journey, certain items will need to be replaced due to wear and tear (shoes, socks, memory cards etc.), so equipment, services and cash sponsorships would be helpful.
Partnerships
I am committing my own funds to pay for the trip including my equipment and trail expenses for six months. Partnerships with key businesses and organizations will be crucial to the larger objectives of this project. Media and public relations partners are of utmost importance. Reaching a widespread audience that includes Lyme patients and their families and friends (literally millions around the U.S. alone) as well as outdoor and adventure enthusiasts and the general public is our primary goal. Key partnerships with existing Lyme advocacy and research organizations are essential. Outdoor equipment makers and retailers would also make excellent partners. I am quite an outdoor “gear-head” and will review the equipment, clothing and trip related products I utilize on my YouTube channel and other social media outlets.
I am committing my own funds to pay for the trip including my equipment and trail expenses for six months. Partnerships with key businesses and organizations will be crucial to the larger objectives of this project. Media and public relations partners are of utmost importance. Reaching a widespread audience that includes Lyme patients and their families and friends (literally millions around the U.S. alone) as well as outdoor and adventure enthusiasts and the general public is our primary goal. Key partnerships with existing Lyme advocacy and research organizations are essential. Outdoor equipment makers and retailers would also make excellent partners. I am quite an outdoor “gear-head” and will review the equipment, clothing and trip related products I utilize on my YouTube channel and other social media outlets.
Conclusion
This adventure is very much a personal “leap of faith” for me. I have resigned my position, plan to sell most of my possessions and change the course of my life in an effort to advocate for a very sick, somewhat forgotten, and fast growing segment of the population; those suffering with Lyme disease and other related infections. The human devastation caused by these diseases is staggering. The shameful political and economic games currently being played within the hierarchy of certain segments of the medical, insurance and pharmaceutical industries is reprehensible. I would like to make a positive impact on this growing national crisis. I am committed to this journey and would welcome like-minded partners interested in its success. Collaboration and cooperation will make all the difference in this both project and with national progress in turning the corner with this fast growing and devastating epidemic.
This adventure is very much a personal “leap of faith” for me. I have resigned my position, plan to sell most of my possessions and change the course of my life in an effort to advocate for a very sick, somewhat forgotten, and fast growing segment of the population; those suffering with Lyme disease and other related infections. The human devastation caused by these diseases is staggering. The shameful political and economic games currently being played within the hierarchy of certain segments of the medical, insurance and pharmaceutical industries is reprehensible. I would like to make a positive impact on this growing national crisis. I am committed to this journey and would welcome like-minded partners interested in its success. Collaboration and cooperation will make all the difference in this both project and with national progress in turning the corner with this fast growing and devastating epidemic.
For more information contact Logan at my official hike email address: unitic2013@gmail.com
More of his journey will be posted and as he posts when he begins his journey.
Go here if you would like to read more… http://www.trailjournals.com/entry.cfm?id=398996
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