By Steve Ehrlich
Like many people reading this, I have chronic Lyme disease. My battle with Lyme and its equally malicious co-infections, Babesia and Bartonella, began 15 years ago.
Similar to the experiences of fellow Lymies, it took a year to get a diagnosis. Since then, dozens of doctors and hundreds of medications and supplements have done little to quell the 30 symptoms that rollercoaster through my life every hour.
Eight years ago, I had to end my 30-year career. When you can’t remember the names of people you work with every day, dread the inevitable pain of sitting in an office chair, and the effort to be cordial with colleagues and customers is almost as bad as the pain itself, you realize that full-time work is not for you.
But my story doesn’t start or end here.
In the first week of not being at work, I realized two things: First, that a sofa with heated blankets on my back and legs was the place I needed to be, and second, that one can only look at the TV screen and ceiling for so long.
No more doomscrolling
The idea of doomscrolling on the Internet was not that appealing either. I was in an in-between state of a job being more than I could handle and doing nothing being less than desirable.
In addition, the last thing I wanted was for pain to be front and center of my mind all the time. Our brains only allow us to think about one thing at a time, so I needed a distraction that would keep my mind focused not on where it hurts the most, but on something (actually anything) else.
For some people that distraction might take the form of painting, sewing, cooking or some other activity. My primary distraction is writing music.
I learned the piano and guitar at an early age and became proficient enough to earn a teaching certificate. What interested me most though was writing music. My piano teacher’s (justifiably) pained expression when confronted with my first composition told me everything I needed to know.
To be fair, I was only about 10 years old at the time. Undeterred, I have continued to write music sporadically throughout my life, even as I pursued a career in a different field. It’s a somewhat cosmic joke that I had to become sofa-bound before I could focus on music while at the same time not being able to play an instrument anymore.
Musical software to the rescue
To overcome this obstacle, I found software that allows me to enter the music notes on my laptop and play back what I’ve written. In fact the software was better than I hoped for, in that it could play the sound of any instruments, not just the guitar and piano.
I am blessed to have musical ideas running through my head every day and I now had the tools to formalize them.
I can focus on writing music for only an hour or two each day and so progress is slow – it takes around four weeks to write each song. That said, it’s not like I have somewhere else to be, apart from a doctor’s office.
I’ve written about one song per month for the last eight years and now have nearly 90 filed away.
I started writing music as the ideas came to me with the only self-imposed requirements being that it was melodic and easy on the ear. I soon realized though that I needed to answer this question: What type of music should I write?
Conventional wisdom is that authors should write from their own experiences. Artists often put out albums containing gut-wrenching songs reflecting their sorrows after a breakup or tragic event, and it would have been easy for me to go down this route.
But then I thought: who would want to listen to sad songs about my sorry state or head-banging music that reflects my frustration and anger about my condition? So I went in a different direction.
My brain spits out happy songs
I am regularly confounded that my brain spits out songs that are predominantly happy, but I figure that if they make someone else feel just a little better or provide a distraction for them, then mission accomplished.
As you might expect, regardless of whether a song was good or bad, family and friends were bound to say: “you should create an album.” It was easy to not indulge in that fantasy. After all, who was actually going to play on this album?
I then remembered that wonderful things exist on the Internet, and that includes websites where professional musicians from around the world tout their skills. Perhaps it was possible after all?
I decided to give it a go. I put my songwriting pen aside and dedicated my two functional hours per day to releasing an album. It became a nine-month process that started with selecting a dozen of my songs that were simpatico with each other.
I cleaned them up so that each musician could play from the sheet music for their instrument, chose the musicians and worked with them to record their parts (in their own studios), identified sound engineers to mix and master the songs, and selected a distributor to get the music onto popular streaming services.
“Jazz and All That”
It helped to have a daughter with fantastic design skills to apply the finishing touch… artwork for the album cover.
The result is “Jazz and All That,” a smooth jazz instrumental album performed by my virtual band, “The Inter Section.” It would make a perfect companion to your next IV infusion, a quiet dinner, or reading, painting or whatever your distraction happens to be.
You can listen to it on all the popular streaming services like Spotify and Apple. I hope you feel the joy, passion and soul I embedded in the music and enjoy it enough to purchase the album because all proceeds go to LymeDisease.org and Bay Area Lyme Foundation.
I say this (still) with some measure of disbelief, but I wrote and produced an entire album from my sofa. The only question now is: what are you going to do from yours?
Steve Ehrlich emigrated to the San Francisco Bay Area in 1989 from South Africa. Chronic Lyme disease cut his career in the software industry short. He turned to writing music and with his virtual band, The Inter Section, released his debut album, Jazz and All That, in November 2024.
By Fred Diamond
Lyme disease has long been one of the most misunderstood and underfunded illnesses in the United States, despite its devastating impact on millions of lives.
For patients and their families, this lack of awareness and funding translates to years of misdiagnosis, prolonged suffering, and a healthcare system ill-equipped to address the disease’s complexity.
Advocacy organizations such as the Center for Lyme Action are determined to change that narrative by empowering Lyme patients to become advocates for meaningful progress.
It’s important right now. I asked ChatGPT “Is the Trump Administration for or against Lyme disease federal funding?” It replied:
“While these funding decisions are made by Congress, the administration’s stance on broader health funding could influence future allocations. Notably, the Trump administration has proposed significant budget cuts to federal health agencies, including the NIH and CDC, which may impact research and prevention efforts related to Lyme disease.”
Importance of the Fly-In
On February, 18-19, the Center for Lyme Action will host its annual Virtual Fly-In, a flagship event where patients, caregivers, researchers, and supporters engage directly with members of Congress to advocate for increased funding and better policies to combat Lyme disease.
This event is not only a platform for advocacy but also a symbol of resilience and the power of grassroots movements to drive systemic change.
Turning Adversity into Advocacy
Meghan Bradshaw, the government relations manager at the Center for Lyme Action, knows firsthand the struggles of living with Lyme disease. Her journey from patient to advocate is a testament to the transformative power of purpose.
“I was misdiagnosed for years and experienced severe complications from Lyme disease,” Meghan shares. “A tick bite turned me into the bionic woman. I’ve had nine joints replaced and eight surgically fused, all before turning 30.”
Despite these challenges, Meghan refused to let her experience define her. Instead, it became the foundation of her advocacy work. She returned to school to earn a master’s in public health at UNC Chapel Hill, equipping herself with the tools to make a broader impact.
Today, she plays a pivotal role in organizing advocacy efforts and coordinating advocates to push for increased federal funding for Lyme disease.
“Advocacy has been deeply healing for me,” Meghan reflects. “It’s helped me reclaim a sense of power and control over what Lyme disease took from me.”
Johanne’s Journey of Resilience
For Johanne Schwartz, the path to advocacy was fraught with unimaginable challenges. Diagnosed after 24 years of misdiagnoses, Johanne’s life was upended by the disease’s debilitating effects.
“By the time they figured out I had Lyme, I was falling down and couldn’t use my arms and legs properly,” Johanne recalls. “I experienced neurological symptoms, including paranoia, schizophrenia, and delusions. At one point, I was wearing three jackets and hiding by dumpsters.”
Despite her fears and physical limitations, Johanne decided to take action. “The idea of stepping out and getting involved was terrifying,” she admits. “But I felt so strongly about preventing others from going through what I experienced.”
Johanne’s advocacy work began with the Center for Lyme Action’s Virtual Fly-In in 2024. Though initially nervous about using technology and speaking in public, she found support through the organization’s training and resources.
“The Fly-In allowed me to share my story, and seeing the faces of other advocates gave me the courage to keep going,” she says.
In addition to participating in advocacy meetings, Johanne contributed by helping with the appropriations process—a critical step in securing federal funding.
“Even as someone who struggles with technology, I was able to make a meaningful impact,” she says. “They [the CLA team] walked me through everything, and I felt like I was truly making a difference.”
The Importance of Advocacy
Advocacy efforts like those led by Meghan and Johanne are essential for addressing the funding disparities that plague Lyme disease research. Meghan highlighted the stark contrast in federal funding for Lyme disease compared to other vector-borne illnesses.
“On average, the per-patient funding for Lyme disease research at the NIH was around $107,” Meghan explains. “Compare that to diseases like West Nile and malaria, which receive between $70,000 and $108,000 per patient annually. These are diseases with far fewer cases than Lyme.”
This discrepancy underscores the importance of grassroots advocacy. Over the past five years, the Center for Lyme Action has worked tirelessly to build relationships with policymakers and secure significant gains in funding.
“We’ve been able to triple federal funding during a time when many health programs are facing cuts,” Meghan notes. “This progress is a testament to the power of patient voices and the relationships we’ve built with congressional staffers.”
Breaking Down Barriers
One of the most remarkable aspects of the Fly-In is its accessibility. Participants can join from anywhere, whether they’re at home, in treatment, or taking a break from work.
“When I started, I was tied to an IV pole,” Meghan shares. “The Fly-In allows anyone to participate, regardless of their circumstances. It’s an empowering experience for patients who often feel voiceless.”
Johanne’s advice to first-time advocates is simple: “Never hold back. Lyme disease looks so different on everyone. Even if you’re nervous, just showing up and sharing your story can have a tremendous impact.”
Advocacy as Healing
For many participants, advocacy is not just about driving change but also about reclaiming a sense of control and finding healing.
“Getting involved with patient advocacy helped me feel like I had some power over what was happening to me,” Meghan reflects. “It’s been deeply healing to know that my story can help prevent others from experiencing the same challenges.”
Johanne echoes this sentiment, emphasizing the importance of raising awareness.
“People need to know about Lyme disease,” she says. “I tell people it’s like sunscreen at the beach. You take precautions, but you don’t stop going. Awareness can save lives.”
The Road Ahead
The Center for Lyme Action’s goal for 2025 is ambitious: to have advocates from all 50 states participate in the Fly-In. Historically, advocates from 47 states have joined, but some areas remain underrepresented.
“We’re working hard to fill those gaps and ensure every congressional district hears from a Lyme advocate,” Meghan said. “This year, we’re also focusing on new legislation and authorization bills that have the potential to bring transformative change for our patient community.”
“Advocacy is bold and courageous,” Meghan said. “As Brene Brown says, vulnerability is our greatest measure of courage. By sharing our stories, we’re not only advocating for change but also finding healing and reclaiming what Lyme disease has taken from us.”
To learn more or register for the Fly-In, visit centerforlymeaction.org. Registration deadline is January 31. Together, we can drive change and ensure a brighter future for all Lyme disease patients.
Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.
Fred Diamond is based in Fairfax, Virginia and can be contacted via Facebook. His popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” is available on Amazon. The e-version of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.
On January 21, The Quiet Epidemic‘s impact team, sponsors and allies* launched a 10-day, community-wide outreach campaign, encouraging the new administration to support crucial Lyme disease initiatives and prioritize solving this public health crisis.
In the first 72 hours, individuals in 48 states sent 1,220 letters to President Trump. The goal is to send letters from all 50 states—do you know anyone who lives in Arkansas or Wyoming who you can forward this email to?
Until January 31, the #MakeLymeLoud campaign page is LIVE with a pre-written letter for President Donald Trump. We’re asking you to dedicate 15 minutes this weekend to help double the number of letters sent.
Here is how you can help:
1. Send a letter to President Trump (< 60 seconds)
2. Share the Call to Action by encouraging your family, colleagues, and friends to send a letter. Here is a Dropbox folder with graphics and copy for your social channels. (5 min)
3. Stay Engaged by spending 5 minutes a day, from now until Jan. 31, amplifying the campaign and recruiting your community to do the same (50 min)
2025 marks 50 years since Lyme disease was first recognized in the U.S. Yet people around the world still lack access to an accurate test and cure.
Click here to send your letter
We must change this before another 50 years pass
With a change in administration and momentum from our recent events on Capitol Hill, this opportunity won’t come again!
*The letter is co-signed by 30 of The Quiet Epidemic’s sponsors and allies across the Lyme community: LymeLight Foundation, Global Lyme Alliance, Project Lyme, The National Capital Lyme & Tick-Borne Disease Association, Mothers Against Lyme, LymeLnk, Center for Lyme Action, Bay Area Lyme Foundation, LymeDisease.org, COTBDAA, Patient Centered Care Advocacy Group, PA Lyme, Lyme Action Network, Focus on Lyme, Generation Lyme, Texas Lyme Alliance, Florida Lyme Disease Association, The Leaf Program, Inc., Frederick Branch, Central Mass Lyme Foundation, Inc., Lyme Center of Martha’s Vineyard, TiCK MiTT, Lyme Treatment Foundation, Lyme Association of Greater Kansas City, Lyme Disease Association of Southern Arizona, Tick JEDI Coalition, LymeTV, Michigan Lyme Disease Association, Minnesota Lyme Association, Lyme Fight Foundation, Columbia County Lyme Support Group, and Brookfield/Wolfeboro Lyme Support Group.
The Trump administration has imposed major restrictions on the US National Institutes of Health (NIH) and other federal health officials, instructing them to pause all public communications.
Among events that have been called off: the Tick-Borne Diseases and Associated Illnesses National Community Engagement webinar, previously scheduled for January 28. It was supposed to focus on the unique challenges faced by people of color, outdoor workers, military personnel, children, older adults, and pregnant women.
By Jennifer Meisenbacher-Molzen
In 2006, on the Fourth of July, my friend Kelly handed me a margarita. I remember thinking that the glass was super heavy and that I was more than the usual “chasing a 3- and 5-year-old around” tired.
I woke up the next day utterly exhausted. My head and neck were screaming, I had lumpy lymph nodes, and I noticed a bull’s-eye rash on my skin. I made it to the doctor’s quickly, but that event and the Lyme diagnosis I received would affect my health for the rest of my life.
There are certain times in your life when you simply have to call your mom. The first is when you find out you are having a baby, and the second is when you learn you have Lyme disease. I could not get myself out of bed to take care of my children. I remember thinking that if the house was to burn down, I would burn down with it. Who would save my kids, my pets? The questions terrified me.
Learning everything about ticks
As the days rolled on, I began to improve and eventually became functional. While lying in bed I thought: “This can never happen again, and I must do everything in my power to protect my family from this horrible disease.”
I soon would spend the next two years educating myself about ticks and applying everything I learned to battle them in my own backyard.
I wondered, where were the ticks coming from? What parts of the property were more inviting to ticks than others? Were there any safe places for my children to play and the dog and cats to go?
Since the name of the disease came from the town of Lyme, Connecticut, I got started by diving into reading the “State of Connecticut Tick Management Handbook” and applied their strategies to my backyard.
Because ticks spend most of their lives off their host, I needed to figure out where they were hanging out. At first, my perspective was that of a student. Then I shifted gears and looked at the yard through a different lens. I found that by thinking like a mom, an impulsive toddler, a gardener, a dog, or a cat, I could truly connect the dots and be more impactful.
I contracted Lyme two more times in the next 16 years. And both of those times I learned about new variables that put me in harm’s way. For example, the second time, I confirmed that ticks are active in the winter if temps go above 40 degrees. We had some trees come down and were moving the logs and disrupting the undergrowth in the field…and the ticks.
Time number three, I dismissed the bite as a spider bite on my upper arm after retrieving a rogue soccer ball from the bushes at the park. It was the perfect bull’s-eye to show off to the interns at my doctor’s office! So yes, I have been there, and I truly hope that you find my ignorance helpful in your plight against tick bites.
Sharing what I learned
I can’t believe that it’s been almost 18 years since my first bout of Lyme. Do you remember the questions I struggled with back then? Where were the ticks coming from? What parts of the property were more inviting to ticks than others? Were there any safe places for my children to play and the dog and cats to go? I’ve since figured them out.
My methods worked so well that I created my own tick control company called Tick Tackler. I have conducted over 10,000 residential and commercial pesticide applications AND I have the answers to those questions and so many more. Now, I’ve put what I’ve learned into a book called
My goal? To teach you how to identify the higher risk areas in your own backyard and how to tick-proof your landscaping. I hope this information will help you take back your gardens and lawns, for the enjoyment of you, your family and your pets.
Jennifer Meisenbacher-Molzen founded Tick Tackler, a company focused on organic integrated residential tick control. Her book is available on Amazon.
