Pausing To Remember
My heart sank.
The Lyme and Bartonella community had lost another bright light.
The news shook me and triggered a sadness I hadn’t felt in months.
If you’ve lived through a traumatic experience, you understand triggers.
I planned to write about recovering from trauma and triggers this week. Still, I’ve put it aside until next week to pause, honor, and remember three exceptional patient advocates in the Lyme, Bartonella, and MCAS communities, one of whom lost her battle with this insidious disease last week.
Jake Pikar
The news of Jake’s passing was unexpected. Jake had struggled for more than five years with Bartonella, a gastrointestinal illness complicated by mast cell activation syndrome (MCAS) and small intestinal bacterial overgrowth (SIBO). Still, I was unaware that she had taken such a dramatic turn. Her mother shared that Jake was increasingly losing tolerance for food, leaving her at only 79 pounds and in constant pain.
The Lyme community is small, and I knew of Jake’s advocacy. She, along with two mothers of patients, created a Facebook patient forum for others navigating Bartonella-associated chronic illness. She also developed a YouTube series to educate others on Bartonella, MCAS, and infection-related chronic diseases.
Amanda Elam, Galaxy Diagnostics Co-founder and CEO who supported Jake’s efforts reacted to her passing:
“Our hearts are broken by the loss of this exceptional young patient and advocate. With tremendous humor and grace, Jake educated and entertained us all and gave hope to many patients struggling with chronic illness.”
Jake’s passing left me remembering two other Lyme patients/advocates who are often in my thoughts.
Alex Hudson
Alex Hudson was a fierce Lyme and MCAS (Mast Cell Activation Syndrome) advocate. For ten years (starting at 11 years old), Alex battled what doctors deemed a “medical mystery.” Refusing to let this ambiguous label define her, Alex researched her condition and sought out medical professionals who could provide her with a proper diagnosis.
After visiting nearly forty doctors and receiving multiple incorrect diagnoses, Alex finally found a doctor who correctly diagnosed her with Lyme disease. Her journey in and out of hospitals for treatment started in May of 2017. By then, Lyme disease and Mast Cell Activation Syndrome (MCAS) had destroyed her body, and she was never able to gain control of her illness.
Alex died in 2018 at the age of 22, weighing 57 pounds.
Today, Alex’s mother, Jody Hudson, works alongside community members and fellow Lyme advocates to carry out Alex’s work through The Alex Hudson Lyme Foundation. Jody wrote about her daughter in the beautiful book My Promise to Alex.
Dr. Neil Spector
On June 17, 2020, Duke University flags were lowered to half-staff in honor of Neil Spector, MD, a nationally recognized physician-scientist, translational research leader, and oncology mentor who passed away on June 14, 2020.
Dr. Spector was also an author and passionate patient advocate.
I had the pleasure of meeting Dr. Spector in 2017. I was attending a Lyme conference in the hopes of gaining information that would lead to answers about my son’s illness. Dr. Spector was one of the speakers.
After his presentation, I was so taken by his story that I approached him to thank him. That’s when I would learn of his true generosity.
As I turned to walk away after a brief conversation, he stopped me and said, “I have time. Do you have questions?”
That was the first of many conversations I would have with Dr. Spector over the next few years.
I know I was just one patient advocate who experienced the same generosity. When he learned that my father was in treatment for cancer, he offered his support in that field, too. That was the type of man he was.
Dr. Spector became a tireless advocate for increased Lyme Disease research and awareness, from speaking engagements and media interviews to serving on the advisory board of a leading Lyme Disease non-profit to carrying out his research into Lyme and other tick-borne diseases.
His research into the tick-borne parasite Borrelia burgdorferi and the bacteria Bartonella, which have been linked to Lyme Disease in humans, had recently expanded into investigating a possible overlap between these pathogens and cancer.
An accomplished author, Dr. Spector wrote Gone in a Heartbeat: A Physician’s Journey to True Healing (2015), chronicling his courageous battle with Lyme Disease, which went undiagnosed and untreated for years.
Finally diagnosed in 1997, the disease ultimately damaged his heart, and in 2009, Dr. Spector received a heart transplant at Duke. When I met Dr. Spector in 2017, his illness was evident, but he never stopped advocating for Lyme patients.
Upon his passing, Michael Kastan, MD, PhD, executive director of Duke Cancer Institute, noted:
“Neil was a compassionate physician and a creative scientist, always striving to develop new and safer ways to treat cancer,” said. “After his bout with the ravages of Lyme disease, he became a prominent spokesperson for that field, reaching the hearts and minds of all who read his book or heard him speak about his personal journey.”
As news of Dr. Spector’s passing reached the Lyme Disease and wider oncology community, tributes from across the world poured in via social media: “a lion,” “a best friend to everyone he met,” “a legend,” “a hero,” “a shining light,” “a huge loss.”
As someone with the honor and pleasure of knowing him, I can attest that these accolades were well deserved.
Jake Pikar, Alex Hudson, and Dr. Neil Spector were exceptional people who made it their mission to educate and help others about Lyme, MCAS, and Bartonella despite their battles with the diseases.
All three lives were cut short due to a disease that no one wants to talk about.
Lyme disease
If you’re unaware of my background and the history of my illness, it all started with Lyme disease.
Like millions of patients, I live with the consequences of Lyme disease every day.
My story is not unique.
It took more than thirty years to receive a proper diagnosis.
I have a progressive autoimmune disease because I was misdiagnosed multiple times and left untreated for decades.
I became a patient advocate to help others avoid what I’ve endured.
While Lyme stole years of my life and that of my son’s, we are fortunate to be living well despite our illness.
I remain active in the community because many patients are not.
When I needed support, others from the community were willing to guide me. I will continue to do the same.
Everything about Lyme disease is hard, even when you think you’ve made it to the other side.
As the leading vector-borne disease in the US, it should not be an orphan disease but remains woefully underfunded and misunderstood.
Assistant professor of medicine at Harvard, Jacob Lemieux, in a recent article in Harvard magazine, noted:
Lyme is complex, and research has been neglected for far too long.
While I’m encouraged that more is being done now than in the previous four decades, I know what it will take to move from identifying the complexity of the disease to finding treatments and a cure:
A massive influx of funding and a willingness to acknowledge its relevance and importance.
I once hoped to see real change in my lifetime. How do I define real change?
· When Lyme and other tick-borne diseases are given the same resources as cancer and heart disease.
· When a story about Lyme disease is scientifically accurate and doesn’t question the validity of the disease.
· When resources are earmarked for testing and treatments rather than vaccines.
· When physicians willingly acknowledge the science of Lyme.
· When insurers stop denying treatment for tick-borne diseases.
· When patients are embraced, not vilified.
Until then, I’ll continue to write and speak about the change that needs to happen.
I’ll continue to remember and honor those who lost their battle while fighting for that change. May they rest in peace.
If you’re new to The Power of Change, you may not know a section of this site is dedicated to Lyme Disease resources. To learn more, start here:
If you’re wondering why I write about Lyme disease and chronic illness:
I’ve lived with Lyme and other tick-borne diseases for thirty years.
I’m a patient advocate with several non-profit organizations.
I’ve worked with leading Lyme physicians.
I’ve spent seven years researching the medical literature for Lyme and vector-borne diseases.
I was misdiagnosed with Lupus and Chronic Fatigue Syndrome for more than two decades and dismissed by dozens of specialists before being properly diagnosed and treated in 2018.
I’m the mother of a child with Lyme and other tick-borne diseases.
My mission is to help educate and raise awareness of invisible chronic illnesses and provide hope for those who have lost it.
I have never heard about this disease before reading your article or I may have but didn't wish to put an attention to it but after reading your article, I have added the books which you have recommended and will gain more knowledge. My condolences to the family of the deceased friends :(
I'm sorry to hear about the loss of these friends.