On this week’s Love, Hope, Lyme podcast, the hosts of the Tick Boot Camp share the most important things they’ve learned after doing hundreds of interviews.

By Fred Diamond

When you have interviewed as many Lyme disease survivors as Rich Johannesen and Matt Sabatello have, you begin to see patterns.

Rich and Matt are the hosts of the Tick Boot Camp Podcast. They have spent years talking with Lyme survivors, physicians, researchers, advocates and others searching for answers to tick-borne disease. They have recorded more than 600 interviews, and their podcast has generated millions of downloads.

But their connection to Lyme disease is not simply as podcast hosts.

Matt was once so sick that he was bedbound and needed his father to help him shower. Rich became involved in Matt’s journey after being bitten by a tick himself. Their search for information eventually led them to interview people who had successfully navigated Lyme disease, document what they learned and ultimately create the Tick Boot Camp podcast.

This week, I invited Rich and Matt onto the Love, Hope, Lyme Podcast and asked them a question that I thought would be useful for Lyme survivors:

After hearing hundreds of stories, what have you learned that can actually help someone struggling with Lyme disease? Their answers came back to a handful of powerful themes.

Believe that improvement is possible

Matt didn’t hesitate when I asked about the most important lesson he has learned.

“We have to know and truly believe that we can get better and we can improve,” he said.

That statement carries weight because Matt remembers being in a very different place. At one point in his illness, he said, he was about 50% improved but believed that might be as far as he could go. Through conversations with other survivors and advocates, however, he began discovering other possibilities.

That changed his thinking and gave his life new meaning.

“I think that’s the number one thing I’ve learned, is we have to have hope, and we have to know that healing is possible,” he said.

This isn’t about pretending Lyme disease isn’t difficult. Nor does Matt suggest that a patient’s mindset is the cause of their illness. Instead, his point is practical. If you completely stop believing improvement is possible, you may also stop looking for the next physician, treatment, lifestyle change or other option that might help.

As Matt explained later in our conversation, believing that improvement is possible gives you a reason to keep searching.

Don’t just focus on killing the infections

Another lesson Matt has taken from years of interviews is that healing can involve much more than targeting microbes.

“It’s not just about killing the Lyme disease. It’s not just about killing the Bartonella. It’s not just about eradicating the parasites. It’s not just about getting rid of the mold,” he said.

Matt believes patients need to step back and look at their health more broadly. That may include emotional health, sleep, diet, movement and the nervous system. For someone who is severely ill, exercise might mean nothing more than stretching in bed. His point isn’t that everyone needs to follow the same formula. Quite the opposite.

“All of those things together are important,” Matt said.

This theme has come up repeatedly on the Love, Hope, Lyme Podcast as well: Lyme disease can affect many aspects of a person’s life, and recovery may require looking beyond one symptom, one pathogen or one treatment.

Pay attention to your nervous system

One of the most consistent themes I hear from Lyme survivors and practitioners is nervous system regulation. Matt said he didn’t fully appreciate how much of his life had become dominated by fear and fight-or-flight.

“I was living in a complete fear state, and I was paralyzed by fight or flight,” he said. “If your nervous system is regulated, then you can heal better.”

Through his experiences and the people he interviewed, he began learning more about the nervous system and its role in his overall health.

Rich agrees that nervous system regulation is important, although he frames it even more broadly. He told me learning to regulate the central nervous system isn’t simply something for Lyme patients. He views it as part of being a healthy human being because people can become trapped in fight-or-flight responses that leave them feeling paralyzed.

For Lyme survivors who are already dealing with uncertainty, pain and fear, that is an important consideration to discuss with appropriate healthcare professionals.

Find people who understand

Lyme disease can be profoundly isolating, and Matt remembers exactly how that felt.

Before discovering the larger Lyme community, he said, “I felt like an alien.” He believed he had an illness nobody understood and didn’t realize that millions of other people were experiencing their own versions of the same struggle.

That is one reason podcasts and patient communities can be so valuable.

“This podcast at a minimum is validating experiences and letting people know they’re not alone,” Matt said.

That resonates deeply with me after having conducted nearly 100 Love, Hope, Lyme podcasts and having communicated with thousands of Lyme survivors. Although I don’t have Lyme, it’s one of the primary reasons I wrote “Love, Hope, Lyme,” and started the podcast. I’ve heard repeatedly from survivors who say their friends, family members and sometimes even healthcare providers don’t understand what they’re experiencing.

Hearing another person describe something you’ve experienced can be incredibly validating.

You realize you’re not the only one.

Learn from people who have walked the path

Rich has a particularly useful recommendation for someone newly diagnosed with Lyme disease.

Learn the language.

“Learn what a Herxheimer reaction is. Learn what Lyme disease is. Learn what the risks are, and then find a community,” he said.

Rich believes patients can learn from others who have already navigated similar challenges. That doesn’t mean copying someone else’s treatment protocol. Lyme presentations can be very different from one person to another.

Rather, it means finding people whose experiences resemble yours and learning from what worked and didn’t work for them.

Rich described the Lyme community as a “big quilt,” filled with people whose journeys may contain elements that match your own.

That distinction is important. Another survivor’s story is not a prescription. But it can give you questions to ask, possibilities to explore and, perhaps most importantly, evidence that people do find ways forward.

Be willing to pivot when things are not working

Matt’s advice for newly diagnosed patients is equally practical.

“You must know that you can heal, but you also must know that it may not be an easy journey. You must be open-minded and you have to learn how to pivot,” he said.

If you’re working with someone and making no progress, Matt says it may be appropriate to consider another direction. There is no single solution that works for every person dealing with chronic Lyme disease. That’s why self-advocacy becomes so important.

“You have to keep advocating for yourself and you have to pivot when necessary,” Matt said.

That may be one of the hardest parts of Lyme disease. When you’re exhausted, frightened, cognitively impaired or in pain, you’re also being asked to become an advocate for your own health.

That’s where trusted family members, friends, mentors and Lyme communities can become invaluable.

Find a mentor and don’t give up

At the end of every Love, Hope, Lyme Podcast episode, I ask my guests to leave listeners with one final thought.

Matt’s answer may be the simplest and most important advice from our entire conversation.

“Don’t give up,” he said.

He also urged people to find a mentor, someone who can help them navigate the community, healing process and emotional challenges.

“Find a mentor from a community standpoint, a healing standpoint, and never give up.”

Rich offered a complementary message: find a community, learn from people who have traveled the road before you, and when you are able, find a way to give back. He believes service can become part of rebuilding purpose during the healing journey.

Today, Matt says he is working again, participating fully in life and continuing to devote himself to Tick Boot Camp.

“I truly believe that I’m healthier now than I ever was in my life because of this experience,” he said.

For someone reading this from bed, struggling through another setback or wondering whether the next treatment will finally make a difference, Matt’s story doesn’t promise an easy road. It offers something else. A reason to keep going.

After hundreds of interviews, Rich and Matt’s lessons come down to a few basic ideas: educate yourself. Find people who understand. Advocate for yourself. Look at your health broadly. Be willing to change course. Learn from people who have walked the path before you.

And above all, hold onto hope.

Because sometimes the person whose recovery story you need to hear today may become the person who needs to hear your recovery story tomorrow.

Click here to listen to all episodes of the Love, Hope, Lyme Podcast or on YouTube.

Fred Diamond is based in Fairfax, Virginia. He doesn’t have Lyme but wrote his popular book, “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know” to understand what Lyme survivors go through. The book is available on Amazon and the e-version (pdf) of the book is always free to Lyme survivors. PM Fred on Facebook or LinkedIn for your copy.