When my son became ill in 2016 with a mysterious, debilitating disease, I began an intensive search for answers.
It took 18 months and dozens of doctors before he was diagnosed with multiple tick-borne infections.
Due to the delay in diagnosis, his symptoms were severe, and he required extensive treatment for many years.
During this time, I was a Mom on a Mission- a mission not only to help my son, but also to understand why Lyme patients were being dismissed and marginalized, and why Lyme disease remained difficult to diagnose and treat.
In the process, I would uncover what most patients never learn about Lyme and solve another mystery- the cause of my chronic illness.
For more than two decades, I had been searching for answers but found few, and questioned most.
In my 20’s, I was misdiagnosed with Chronic Fatigue Syndrome and told there was nothing that would help. I lost my job and was completely disabled for years.
In my late 30’s, I was misdiagnosed with Systemic Lupus. I was treated for Lupus at a leading hospital for several years, but my symptoms continued to worsen.
I continued to question what was missing, even though doctors didn’t.
Finally, in 2018, twenty-five years after first becoming ill, I learned the cause: Lyme and tick-borne infections.
My son’s illness ultimately led to the answers I needed.
Multiple bacterial infections ( Lyme, Babesia, and Bartonella) had been undiagnosed, misdiagnosed, and left untreated for decades, leading to a chronic, debilitating illness as well as a progressive autoimmune condition.
Had either my son or I been properly and promptly diagnosed and treated for Lyme, we would have avoided years of severe illness and disabling symptoms as well as hundreds of thousands of dollars in medical expenses- expenses that were denied despite the best healthcare insurance available.
Like millions of other Lyme patients, we were left on our own.
Below is a list of Lyme Resources I compiled over the years that were invaluable to me. It’s not an extensive list by any means, but it’s a starting point to better understand the magnitude of Lyme Disease and where to begin to find help.
Please share this list with those that may benefit from it.
If you missed my recent article, Ten Facts About Lyme Everyone Should Know, you can read it here.
Treatment Guidelines
Dr. Burrascano’s Lyme Treatment guidelines
Lyme Resources & Guidance
Organizations supporting the Lyme community through education, awareness, research, and funding.
International Lyme and Associated Diseases Society (ILADS) - Professional Medical Society with peer-reviewed Treatment Guidelines.
Lymedisease.org - International advocacy organization offering guidance on a broad spectrum of tick-borne disease issues.
MyLymeData: For Lyme Patients- Add your Lyme data to help find a cure for Lyme disease
Bay Area Lyme Foundation is a national non-profit organization based in Silicon Valley that collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease.
Lyme Disease Association - Independent national advocacy organization founded in 1991 with the mission to increase nationwide funding and awareness about Lyme and tick-borne diseases. Their website offers information regarding Lyme disease symptoms, Lyme disease treatments, and other Lyme resources and educational materials for patients, medical professionals, researchers, educators, and policymakers.
Lyme Action Network is a non-profit advocacy organization started in 2009 by Christina Fisk and Holly Ahern, who joined forces as they had the common experience of having daughters who’d been negatively impacted by the poor CDC standard of care available for Lyme patients. Ms. Fisk, a principle at JIMAPCO, Inc., and Ms. Ahern, a professor of microbiology at SUNY Adirondack, have worked closely with members of the local community as well as with Lyme disease experts and advocates from across the country to drive change in Lyme disease policy at state and federal levels. They are founding members of the New York State Coalition on Lyme and Tick-borne Diseases, and participate in advisory capacities on a range of local, state, and national initiatives. advocacy organization
Project Lyme- Project Lyme is a national nonprofit started in 2016 to eradicate the epidemic of Lyme disease and other tick-borne illnesses by spreading awareness, providing educational resources, funding peer-reviewed research, and supporting advocacy for solutions to end the suffering.
Lyme Disease Association - Independent national advocacy organization founded in 1991 with the mission to increase nationwide funding and awareness about Lyme and tick-borne diseases. Their website offers information regarding Lyme disease symptoms, Lyme disease treatments, and other Lyme resources and educational materials for patients, medical professionals, researchers, educators, and policy makers.
LivLyme Foundation is a national nonprofit organization started by Olivia Goodreau, a Lyme patient. LivLyme provides financial assistance to families of children suffering from Lyme disease, funding scientists for Lyme and tick-borne disease research, while delivering tick education and awareness around the globe.
LymeHope is a Canadian not-for-profit organization dedicated to education and outreach on the subject of Lyme & related diseases in Canada. Their current area of focus is with regards to maternal-fetal transmission of Lyme disease with a specific goal of advancing scientific and clinical knowledge in this area by supporting and encouraging collaborative research. https://www.facebook.com/lymehopecanada/
Alex Hudson Lyme Foundation is a national nonprofit founded in memory of Alex Hudson, who lost her life to Lyme and MCAS. While Alex’s life was cut short by Lyme disease and MCAS, her mission to help others lives on through the work of AHLF. Working alongside community members, fellow Lyme advocates, and those struggling from Lyme disease and MCAS, the AHLF team carries out Alex’s work through her love, compassion, and understanding heart. Alex’s sole mission, besides fighting for her own health, was to help and educate others battling from these debilitating diseases. The AHLF mission is to increase research efforts for Lyme disease and MCAS, while supporting patients via financial grants for their testing/treatment.
LymeLight Foundation- LymeLight Foundation was started by two families who have children diagnosed with Lyme disease. Through their children’s struggle, both families discovered the incredible expense of battling Lyme disease and the inability of many families to afford proper treatment. Unfortunately, most treatment plans for Chronic Lyme are not covered by insurance. Existing Lyme foundations mainly focus on funding research and awareness. LymeLight Foundation is uniquely dedicated to funding medical treatment for individuals with Lyme. Since our inception in 2011, LymeLight has awarded grants totaling $8.4 million to 1,204 individuals in 49 states.
CHILDREN AND LYME DISEASE
Basic info about children with Lyme disease
Dr. Charles Ray Jones, a trailblazing pediatric Lyme specialist, treated more than 15,000 children from around the world for tick-borne diseases until his death in 2022 at the age of 93. In addition to treating children for well over four decades, he helped countless more, by training doctors and sharing his vast knowledge at conferences for both professionals and patients.
Despite years of harassment from the medical establishment, Dr. Jones continued to see young patients at his office in New Haven, Connecticut, until recent health problems made that impossible.
His battles with medical authorities were documented in the 2008 Lyme documentary “Under Our Skin.”
Due to the length of this article, A Patient Guide to Lyme Disease Part 2 will appear tomorrow.
Read more about my family’s journey to find answers.
Thanks Tracy