What We All Need to Know About Lyme Disease with Fred Diamond

• [03:05]Fred Diamond, author of Love, Hope, Lyme, recalls how he began writing his book about Lymes. He also explains why Lyme disease is a nefarious disease.
• [09:38]Fred explains how is chronic Lyme disease diagnosed and the struggle of Lyme disease survivors emotionally and financially.
• [17:27]As someone with a loved one who is a Lyme disease sufferer, how can you support them?
• [20:47]Fred discusses the two ways of treating Lyme disease.
• [24:10]What is the role of alternative methods, such as acupuncture, quantum energy, and essential oils, in treating Lyme disease?
• [28:18]Fred discusses rife machines and hyperbaric oxygen therapy in addressing Lyme disease.
• [32:02]According to Fred, there’s no silver bullet in treating chronic Lyme disease. So, what is the critical stage for healing? What are the food and activities you need to stay away from?
• [41:22]Fred shares his insights on resilience and connecting with a supportive community.

Jump to Links and Resources

Fred, it’s so great to have you on the show.

It’s good to see you, Stephan. Thank you for having me. I appreciate it.

Lyme is a tick-borne illness. It’s transferred from mammals through a tick onto a human being.

You bet. I was excited to have you on to talk about Lyme disease, which I don’t know much about. I know that you have personal experience in your family with it. I’d love for us to start with just the origin story of how you deep-dived into that area and came up with an entire book. You have a powerful story about that.

Yeah, Lyme disease is an epidemic. Lyme is a tick-borne illness. It’s transferred from mammals, typically deer, maybe mice, through a tick onto a human being. A tick is so minuscule I can’t even describe its size. Most people with Lyme disease don’t even realize that a tick bit them.

Luckily, if you see what’s called a bullseye rash the day or two after getting bit, then you’ll see. There are two stages of Lyme disease. Suppose you notice a tick bites you and feel fatigued or have certain symptoms. If you get treated quickly within a couple of weeks, typically with antibiotics, the Lyme should disappear. You may have complications, but in most cases, the antibiotics will take care of the Lyme.

However, millions of people are in the chronic stage, where they were bitten years or decades ago, sometimes twenty or thirty years ago. They didn’t know what they had, and doctors couldn’t diagnose it. They misdiagnosed it as chronic fatigue syndrome, fibromyalgia, or maybe it’s in your head. When you get to the chronic stage, it’s difficult to cure, let alone treat.

Someone in my life had chronic Lyme disease and still does. I needed to understand more about what this particular person was going through. Last summer of 2021, I bought every book on Lyme disease and joined many Facebook groups. There are 1000 Facebook groups. Some have 30,000 to 50,000 participants, some of whom have hundreds. The Utah Lyme Disease Association Facebook group may have 1000 people.

Often, when people find a cure or something that gives them peace in their treatment, they’ll also create their own Facebook page. I just started jumping on these pages, reading these books, listening to webinars, and realizing some things. It’s a nefarious disease and almost impossible to cure when it reaches the chronic stage. It’s possible to treat, but to cure it is very difficult.

Lyme is a bacteria that gets into almost every organ in your body and looks like it’s not. For example, if it gets into your joints, you seem to have arthritis. Many doctors, without knowing, will say, “Oh, you have arthritis. Here’s our protocol for arthritis.” or “There may be some neurological issues or brain fog,” and they’ll say, “Here’s how we treat those types of things. It could be carditis, and it could inflame the brain. The bacteria inflame parts of your body.”

I also realized one thing when I started looking at these Facebook groups: one of the common things people were saying was, “Nobody believes me. My spouse left me. My family and friends don’t believe me.” Last summer, I wrote an article for lymedisease.org called Learning to Be More Supportive When Your Partner Has Chronic Lyme Disease. It got 1000 downloads, and people started reaching out to me. All of a sudden, I have hundreds of new Facebook friends.

I started to do more research into it. I realized there was never a book written to help family members, friends, and spouses, for that matter, understand what their loved one was going through. It led to Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know. We published the book in August 2022.

Lyme disease is an insidious condition that can leave individuals unable to work, anxious, and fatigued. It's crucial to believe and validate the experiences of those affected, as their symptoms are often misunderstood. Share on X

That’s awesome. Congratulations. You’re revealing light in the world, and that’s wonderful. What has come about because of that book? It just came out pretty recently. I’m sure you’ve got some emails, voice memos, and things like that from readers. What jumps out at you as a nice impact from your book?

So many things. I have 1500 new Facebook friends and am slow to Instagram, but I’ve also been ramping up our Instagram presence. Here’s the thing, a lot of people know somebody. People are reaching out to me all the time. I frequently post on Facebook. I take excerpts from the book. I’m also very active on LinkedIn. Yes, I do a lot of stuff on sales as it relates to my day job running the Institute for Excellence in Sales, but I also frequently do posts on Lyme Disease Awareness.

I’ve had hundreds of people reach out and say, “I didn’t even know this existed.” I’ll get somebody who reaches out and says, “I want you to meet my friend, Sue Smith.” A lot of people reach out to me for job help. They’re looking for a new job as a sales professional. I know a lot of companies and how they’re organized.

Sue Smith and I will connect, and she’ll say she’s had Lyme disease for 20 years, or someone will say, “My sister-in-law’s niece has Lyme disease.” They’ll buy the book to understand what they’re going through.

One of my best clients said that his niece had Lyme disease for three years, and she’s been battling it. Most people have a very peripheral understanding. It’s like, “Oh, I think it’s a tick-borne illness.” Ticks definitely transmit it. Usually, it might be another insect. Or they’ll say, “It’s like when you have fatigue, isn’t that mainly it?” That’s fatigue, stress, anxiety, pain, and neurologic issues.

There are many ways in your body and past traumas are important to address to recover from Lyme.

A lot of times, people with chronic Lyme disease can’t work. They’re bedridden. I’ve met many people who’ve been bedridden for months, if not years. They can’t work. The anxiety is too much.

The other thing is if you break an ankle, every orthopedic surgeon on the planet is going to say, “We’re going to put you in a cast for six weeks, you’re going to sit on your butt for two weeks, watch loss, free runs, and then you’re going to be fine so that you recover.” With Lyme, there are so many ways in your body, your life history, and past traumas that are important to address to recover from Lyme. It’s unbelievable that this disease exists on the planet.

How do you diagnose this? How do you get that Lyme diagnosis if you’re dealing with some symptoms and never get to the bottom?

There are a couple of tests. There are three major tests, two of which are only detected if it’s 50% positive. Another test, the IGeneX test, is much higher, but it’s not easy. It’s not like a COVID test, where you swab your tongue. A lot of it is evidential.

There’s a famous questionnaire by Dr. Richard Horowitz, who’s probably the preeminent or Lyme-literate medical doctor on the planet. He created a questionnaire that took about ten minutes to fill out. It rules out things.

A lot of it is evidentiary. It’s like, “Do you remember getting bitten by the tick? Have you had these symptoms?” Many times it looks like arthritis. People are treated for arthritis, but it’s not. Often, the treatment will not work for what it is.

Last thing, one of the big challenges is you try treating it with so many things, but then they won’t work. You try this, and it doesn’t work. You try this, and it works for a day, but the symptoms return the next day. It’s a very anxiety-ridden disease as well. That’s something I learned during the research.

Is the anxiety a direct symptom or indirect because you can’t figure out why you’re having all these other symptoms?

I think it’s both. Maybe you’re anxious because of your makeup, and going through the treatment doesn’t help your anxiety. But I’ve learned that it’s the latter, as you just pointed out. Let’s say you finally see a doctor who tells you to do this.

Here’s another little twist. Lyme, especially in the chronic stage, is not covered by insurance. The insurance will not cover Lyme disease whenever you go to see a Lyme doctor, except for the first thirty days of antibiotics. One of the major reasons is insurance companies don’t want to pay for something that’s never going to be cured, so you keep trying things.

There’s a balance between Western and herbal medicine. You won’t get rid of the Lyme, but you might get rid of the burning and some of the brain fog.

One of the reasons these Facebook groups popped up—I was unfamiliar with the concept of crowd curing—people were struggling with why this was not working. Or my doctor told you to do this, and then you’re not going to see your doctor for thirty or sixty days, so you constantly have new symptoms that appear. You lose energy. You try something else, and you have a burning sensation.

All these people were going to Facebook and maybe Listservs originally. They were typing, “My feet are burning,” and then people would reply, “Well, that’s because you’re detoxing. You should do this.” People will say one of the key things you need to do when you have a disease like this is detoxing the bacteria.

Getting rid of the bacteria is hard, and then there’s another process known as the Herxheimer reaction, which is getting rid of the bacteria he just killed, which is even harder. It’s a double whammy type of thing. It truly is a nefarious disease. It’s not just, “Hey, you go to CVS, and there’s anti-Lyme put out by Pfizer.” There are no pills for Lyme.

There’s a balance between Western medicine and herbal. You can take supplements to eliminate symptoms in a whole world of herbs. You won’t get rid of the Lyme, but you might get rid of the burning and some of the brain fog. It’s quite complex.

I haven’t seen this show, but I’m curious if you have. It’s on Netflix, and it’s called Diagnosis. It’s all about these difficult-to-diagnose diseases, rare issues that they covered, and had these different episodes focused on rare diseases and the journey of trying to figure out what the person had. I’m curious if you saw that show.

No, I haven’t seen the show. Ironically, I just started watching Netflix this weekend, Dead to Me, which I’ve always wanted to see. I’m not a huge TV watcher.

One of the other things, too, is a couple of celebrities who have come out. Tommy Hilfiger’s daughter, Ally Hilfiger, wrote a book on her journey with Lyme. There’s a woman called Yolanda Hadid. She was a star in The Real Housewives of Beverly Hills series and wrote a book on her journey with Lyme disease.

All these people in the Lyme community they’re looking for celebrities. Avril Lavigne, the singer, has come out. Shania Twain recently announced that she had early-stage Lyme in the early 2000s. Elena Delle Donne, the MVP of the WNBA for the Washington Mystics, just announced a brand new shoe with lime green, the color for Lyme, from her sponsor. It’s an insidious disease. People are looking for just ideas to make it through the day.

One of the other things is a lot of times, stress will cause the disease to flare. Has anyone dealt with stress over the last two and a half years? Of course, the whole world has dealt with stress.

It popped up in many places where people suddenly found that because of the stress of the lockdown, financial struggles, and maybe losing someone in their family, wondering if COVID is worse than getting vaccinated was a big topic. You couldn’t even use the word vaccinated on certain Facebook pages because Facebook would come and take down the page, so you had to be very careful. That was a big debate.

A lot of times, stress will cause the disease to flare.

Isn’t it ironic that we even have to think about that?

It’s insane. As I mentioned before about breaking your ankle, everyone will see you in a cast. Everyone’s going to understand what you’re going through. You can’t see somebody with Lyme. It shows up as fatigue. Many people have contacted me and said, “I want to buy your book because nobody believes me.” 

The last thing is that there are also political issues. The CDC does not recognize chronic Lyme disease. They say that you should be treated with 30 days of antibiotics. If you have symptoms after 30 days, they call it post-treatment Lyme disease syndrome. If you search CDC chronic Lyme, it will say that chronic Lyme disease doesn’t exist. A world of doctors will say, “Well, chronic Lyme doesn’t exist.”

Imagine if your wife, sister, niece, or daughter has this disease, and you see her being unable to work and anxious. You want to love her and have her treated. But then you go to the internet and type in ‘chronic Lyme,’ the first thing you see is the CDC says it doesn’t exist. “Sweetheart, I don’t think this disease exists because it says here on the internet that it doesn’t exist.” But then your daughter will say, “Dad, I couldn’t get out of bed for the last two years. My brain doesn’t work the same way yours does.” It’s quite an insidious thing that nature has thrown upon us.

It’s like the establishment is gaslighting all of the Lyme sufferers.

Gaslighting, Merriam-Webster said it’s the number one word of 2022. Not infrequently, we’ll see that.

How does somebody caring for a chronic Lyme sufferer assist their loved one other than just believing them and trying to make them more comfortable, helping them apply for disability? What else is there to do?

Gluten is an inhibitor to block the destruction of bacteria. When you have Lyme disease, your whole purpose is to eliminate the Lyme bacteria in your body.

That’s a great question. I went through this, obviously, in-depth in the book. It was more like an education—for example, gluten. People who have Lyme disease typically will eat a gluten-free diet. One of the reasons is that gluten is an inhibitor to blocking the destruction of the bacteria. When you have Lyme disease, your whole purpose is to eliminate the Lyme bacteria in your body. Gluten inhibits that, and mold inhibits that.

You need to know that moldy situations are sometimes even worse for many who suffer from Lyme. You need to ensure that your person is in a place where there’s no mold, that it’s a real serious thing. The second thing is it’s not taking a pill, and it’s gone. It’s not, “Gee, you’ve been sleeping in bed for the last two days. Let’s get up, and let’s go for a walk.” I’ve heard from people with Lyme disease that fatigue, it’s not just like, “Hey, I’m tired. I’m going to go to bed early tonight. I’m not going to go to bed at 8.” It’s fatigue that you can’t even imagine. That’s such an overwhelming fatigue, people have told me.

It would be best to be sensitive to everything this person could be dealing with. You also need to understand the struggles with treating this disease. As I mentioned before, insurance doesn’t cover it. Many people with Lyme can’t work, so it’s a double-edged sword.

At the end of the book, I say you love this person. You chose to be with this person, or this person is part of your family. Just because this person was bitten by a tick six months or twenty years ago wasn’t their fault. No one chose to get Lyme disease. You don’t put yourself in a position to get Lyme disease, unlike lung cancer. You’ve been smoking for 30 years or have diabetes if all you do is go to McDonald’s and drink Big Gulps all day. You’re going to be obese, and you’re going to have certain diseases related to heart disease because you eat improperly.

You could be the best eater on the planet. You could be in great shape but get bitten by a tick one day. It doesn’t even have to be going into the forest. People in New York City have contracted Lyme disease. There are ticks all over the place wherever there are deers. I’ve read that the average deer has 3000-5000 ticks on them. Ticks are killing the moose in Maine.

I read a stat that said Lyme also happens to animals. 90% of the moose in Maine are getting destroyed because of ticks. Much of it ties back to climate change and all these things, too. Just understand what may make this person struggle, be sensitive to why they’re anxious, and know that often because of the disease. Just try to be helpful.

I say in my book that they don’t want to be a puppy dog. They don’t want to be spoon-fed. It’s not like your three-year-old child with flu or something you have to baby. They want to be understood. They want to be treated with respect.

Are there helpful supplements or other modalities that stuck out to you as, “Wow, this is a non-traditional alternative therapy,” and more people suffering from Lyme need to know about?

Yeah. There are typically two ways to treat it. One is antibiotics. Some people even prescribe antibiotics for years. I see these questions every day on Facebook groups, “Should I start doing antibiotics again?” There are a lot of problems with antibiotics. It can destroy your gut, and it can destroy the lining of your stomach.

There are a lot of problems with antibiotics. It can destroy your gut and the lining of your stomach.

The Western medicine solution to Lyme disease is taking doxycycline. Then there’s this whole world of Eastern medicine herbals. There was a guy named Dr. Stephen Buhner. He was one of the leaders trying to figure out supplements to care for some of the symptoms of Lyme disease. Most Lyme literate doctors will treat with a balance of Western medicine, typically antibiotics,  and Eastern medicine.

As I’m talking about this, one thing I state very clearly in my book is that I get two or three people a week asking me for medical advice. I say, “Hey, I have a history major from Emory University and an MBA from San Jose State. You don’t want me to tell you what you should do. See what the world calls a Lyme literate medical doctor (LLMD).” I didn’t even know that term existed before starting this research about a year ago.

They all are trained to give you treatment. I’ve become good friends with one of the top-line literate medical doctors in the country. I asked him, “How do you treat it?” He says, “It’s a mix between Western and Eastern. A lot of it also is the mindset, and it’s tough. It’s hard to tell somebody constantly tired and stressed about the pain they wake up with daily that you need a mindset of moving forward.”

When I researched the book, there were three types. “How do I get better?” Doctors typically write it. Those were encyclopedic descriptions of the history of Lyme and all these various aspects of sleep. I see this all the time. Getting the right amount of sleep is critical.

The second type of book is ‘my battle with the Tick.’ There are probably twenty to thirty books from people who have overcome the devastation of chronic Lyme and how they have gotten into a place of peace and control.

This third category was mindfulness in Lyme, keto diet in Lyme, herbals and Lyme. There’s plenty of research on which herbals you could use to take care of various symptoms you need to do.

I’ve met people who’ve traveled worldwide and gone to Germany, Peru, and India, seeking cures. The CVS handles any medical issue I’ve ever had across the street or by going to the gym and sitting in the sauna or the steam room for a little bit. Imagine having to go to India on the shot so that you may find something that will put you at peace. It’s literally insane.

I’m curious about acupuncture’s role in helping someone with Lyme disease.

Acupuncture, chiropractic, and various types of modalities like that are frequently used. Many doctors prescribed Yoga, the point being to stretch out the multiple places in your body. One of the things that they talked about, I talked about this in my book is the six stages of healing. It was submitted in my book by Gregg Kirk, who wrote The Gratitude Curve.

This is something I never realized. The top doctors say you need to deal with childhood trauma before your body can cure itself from the physical challenges that Lyme provides. Dr. Horowitz said, “If you don’t deal with your childhood trauma, there’s no way that your body will be able to cure itself from this disease.”

If you don’t deal with your childhood trauma, there’s no way your body can cure itself from this disease.

Sometimes you need to leave your situation. You may be married to somebody, and you have kids, but the stress gets overwhelming, so you need to leave. It would help if you went away hoping to figure out how to cure yourself from the disease.

I can’t even imagine. There’s one modality that I want to talk to you about and see what your thoughts are. My wife, Orion, has a podcast as well, Stellar Life. She had a guest who’s the co-founder of Leela Quantum Tech. Her name is Cru von Holtzendorf-Fehling. She had Lyme disease. She had it for 13 years.

This device that she and her husband created is a quantum box with quantum energy. It’s called a quantum bloc. It’s been quite powerful for me and my wife to have two of them. I have the higher-end model that has seven times more quantum energy than the quantum block. It’s called the infinity block. It sounds fantastical, maybe nonsensical for some listeners, but it is profound.

I’ve gotten a lot of value from it and invite people who come and visit to put something in the infinity bloc. Let’s say a piece of jewelry and then, after a couple of minutes, take it out, wear it, and see if you feel anything. Most people who do that feel something. It’s really cool.

Anyway, she had an impressive recovery from Lyme disease. One thing that strikes me about people I know, who went through this horrible ordeal, is that they’ve come out the other side with some epiphany, some invention, or modality that’s been life-changing.

Another person who comes to mind who was also a guest on Orion’s podcast is Kristin Van Wey. She had Lyme disease for many years. I think it was decades. Anyway, she found that essential oils made a profound impact on her. She’s feeling 100% better now.

The tick also transmutes a few dozen other things known as coinfections. There’s Bartonellosis, Babesiosis, and Rocky Mountain Spotted Fever.

I won’t say this is a cure or anything because we’re not allowed to say that. All disclaimers apply. This is not medical advice.

What she describes as the impact of these different essential oils that she has tried has changed your life. I’m curious to hear any stories that jumped out at you of people who have had impressive recoveries, the modality they came up with that is non-traditional, and something that you might not have even heard of before.

There are two that come to mind. There’s a device known as a Rife machine. What it does is it shoots radio frequencies into your body. I have met people who say that the Rife machine doesn’t cure Lyme, but it keeps your body at a stable level if you will. I’ve met some people who swear by it, tried everything, then tried this Rife machine, and it’s brought them such peace.

I don’t think it kills the bacteria, but it keeps people at peace. You’ll see people on these Facebook groups who say, “What’s a Rife machine that you recommend?” There’s a whole bunch of them out there if you will.

I remember I was interviewing somebody who had “recovered” from Lyme. There’s been a lot of discussion over the last couple of years about ivermectin. Typically, ivermectin is used to kill parasites in horses.

One of the side effects of Lyme is when a tick bites you. It just doesn’t give you Lyme disease. Not every tick will provide you with Lyme disease, but let’s say this tick does give you Lyme disease, and your body is susceptible to it. The tick also transmutes a couple of dozen other things known as coinfections. It’s not just the Lyme. There’s Bartonellosis, Babesiosis, and Rocky Mountain Spotted Fever. These are all gifts given to you by the tick as well.

You may have to treat the Bartonella first, then you got to treat the Babesiosis, and then you treat the Lyme. I’ll see people saying, “I’m still working on treating Bartonella, and then I will start treating some of the things with Lyme. I just thought that was Lyme disease. I didn’t even know about this thing called coinfections.”

When you’re battling that, it’s the term I’ve never heard of before, which is comorbidity. You have one or two multiple diseases inside your body that your body is trying to attack. There’s a very popular telegram show where the guy—I’m not going to give him a plug here, but you can find it—talks about using ivermectin as the cure for Lyme.

You may recall during the COVID situation, people were talking about whether there would be a cure for COVID. There are a lot of people in the Lyme world who are using IV. People repeatedly say, “What’s the best way to get it? Where do you get it? How do you get it?” I’ve written this in my book.

There’s no vaccine for Lyme disease.

One of the first things I say is, “Imagine having this disease, where you have to use a treatment that is usually used to get rid of parasites in horses and then also having to use a machine that’s constantly shooting radio frequencies into your body. That’s the depth that you have to go to to be able to cure this over the years. You don’t have to travel to Mexico or to a clinic in Germany to treat this disease.”

People are searching for any solution. There’s no vaccine for Lyme disease. There was one that was attempted in the early 2000s that was canceled. There’s some discussion that Pfizer may be working on a vaccine for Lyme right now, but there hasn’t been much information.

Since it’s epidemic level, one of the good things is that places like Johns Hopkins and Tufts are working hard to figure out ways because it’s just a devastating disease that destroys lives.

How about hyperbaric oxygen? Is that something that can assist with the symptoms or with folks feeling better who are suffering from Lyme?

Yeah, I see that. Some people say that is what saved them, infrared sauna as well. One of the frequent questions is whether you need to be sweating out. Remember, Lyme is a bacteria that produces all these toxins in your body. One of the goals is to get the bacteria out of the body. Once you kill the bacteria, you must remove the remnants, which causes the Herxheimer effect.

People are looking for anything. Then many people say it comes back to removing stress, it comes back to your diet, and it comes back to being out of a moldy place. Some people say that mold is worse than Lyme.

One of the critical stages in healing is accepting that you have chronic Lyme disease, and then you can have an amazing life.

Here’s the reality: there’s no silver bullet or pill. If you are gifted with chronic Lyme disease, one of the critical stages in healing is accepting that you have chronic Lyme disease, and then you can have an amazing life.

I do the Sales Game Changers Podcast, where I interview sales leaders from around the globe. I’ve done close to 600 shows. We also wrote another book that came out the same day as Love, Hope, Lyme, called Insights for Sales Game Changers. I devote one of every six or seven shows to the convergence of chronic illness and sales success.

I’ve met people who are very successful in sales. People are asking me, “Hey, you should interview my friend. She’s the VP of sales.” When I interview these people, they deal with everything we’ve mentioned before, but they’ve not allowed it to control every aspect of their life.

There’s one woman I met who’s a VP of business development for a very large services company. I said, “Most people can’t get out of bed. How can you be a VP of business development?” She said, “I work till five and don’t work on weekends. I work on my recovery on weekends and have quiet time with my family.

Alcohol, certain foods and activities will put you in a place you need to recover.

Three pieces of pumpkin pie? It’s probably not good, either.

First of all, there’s gluten. Second, people say you need to be totally off of sugar. I’ll see them post the five foods you should avoid if you have chronic Lyme disease. For example, you should avoid cheese because of the mold. It’s just insane how you must be conscious of how you live.

Right. I’ve heard peanuts, and peanut butter is typically full of mold.

Mold is a big problem. It’s insane, Stephan. I see people who live in their cars because they notice mold in their apartments.

You mentioned the word gifted a little bit ago. What do you mean by that? It could be interpreted as a flippant remark but it has a spiritual meaning. I feel that that was what you meant by it, but I’d love to hear more about that.

I’ve added close to 2000 Facebook friends over the last two months since my book came out; most are from the Lyme world. People who run Lyme groups said, “Oh, please join our group.” I said, “Well, I don’t have Lyme. I feel I’m a voyeur.” They said, “No, you wrote something that will help many people. You’re part of our community for whatever led you to write this.”

I added close to 2000 Facebook friends, as you can imagine. When you add 2000 people to your world, there’s a whole spectrum. Some people are right on certain issues, while others are way to the left.

I said, “If they’re going to read my book and repost it, I don’t care if you’re to the right or the left of me.” It’s anybody else who’s just a human being trying to figure out how to make it through day by day.

Assisting a chronic Lyme sufferer goes beyond providing comfort. Educate yourself about the disease, be sensitive to their struggles, and understand their limitations. Share on X

I’ve seen devoutly religious people. I’ve noticed that a certain religious figure from 2000 years ago would save me, and I’m devoting all my energy to this particular being to keep me from this disease. Then I see people on the other side who say, “There ain’t no God. Why would God treat his children this way by giving them this life of pain and suffering?”

The people I’ve seen embark upon quality life, whatever that may look like for them, have gotten to the point where they’ve accepted that they have chronic Lyme disease. It’s not easy. Some are saying, “I’m not going to be the CEO of IBM because of this disease,” or “I’m not going to be able to party like I did before I was bitten, and I’m not going to want to go to social events because I’m going to feel fatigued, and I’m going to have the anxiety in my brain.”

I used the word gifted as I was searching for a word as I brought that up. The people living quality lives have accepted that for whatever reason—and I believe nothing happens for a reason. My whole view on spirituality has shifted since I decided to truly understand this disease and how it affected not just somebody I loved but millions of people—you have to get to that point.

Before starting this research, I’ve met many amazing people over the last year. Now I have hundreds of friends. These people rely on each other.

I’ve seen people saying on Thanksgiving, “I’m so thankful for this community for being here for me when nobody else is.” Were you meant to meet all these amazing people? Were you meant to educate the world because of this disease? Your teacher asked, “What do you want to be when you get older?” No one will say, “I want to be a Lyme survivor.” 

Again, I don’t believe it happened for a reason. How do you want to live your life? You could live it miserably. You could be angry all the time. It’s your choice. Or you could accept that you have it and then live the best possible life possible.

I’ve reevaluated my view on spirituality. It’s getting to the point of acceptance and then living the rest of your life, not up in your bed because you’re bedridden, but with who you want to live. Living where you want to live, doing what you’re capable of, understanding your limits, and then living the best possible life.

Like I said in my book, have hope and be loved with proper medical treatment. It’s still a disease. You still have to figure out how to get rid of and manage it.

I just thought of another past guest who had Lyme disease for probably decades. I think she got it in her childhood. It was diagnosed maybe ten or fifteen years ago. She dealt with it. I won’t say the word cure because we’ve already said vaccine multiple times and ivermectin. This is going to get so buried by the algorithms.

Anyway, her name is Katie Beecher. She wrote the book Heal from Within. I don’t know what your reception will be, but it’s not going to be that keen on it based on what you just said, but she’s a medical intuitive and psychic.

I’ve experienced her gift. My wife has experienced her gift, had her on her podcast as well, and she has been on this podcast. She is the real deal from my perspective. Of course, all disclaimers apply, etc.

Her gift of getting Lyme disease led her to this spiritual discovery and awakening. She has changed a lot of people’s lives. She considers it a gift that she had Lyme disease for such a long period that it led her to work on healing herself, and then it unlocked her healing gifts to heal others. What are your thoughts on that?

I’m Facebook friends with her. I’ve actually downloaded her book. I haven’t read it yet. This is a community that is searching for answers. I see people jump up on these Facebook groups; some of their questions are provocative and thoughtful. “Hey, this is the symptoms that I have. I’ve tried this. Does anyone have any recommendations?”

Healing from Lyme disease may involve addressing childhood trauma and stress. Recognize the importance of emotional well-being in the recovery process. Share on X

I see people who are quite desperate. It’s like, “I did this. I’m at my wit’s end.” One of the moments that changed my life was I decided to write this book because people reached out after I did that original blog post on lymedisease.org, and I said, “This book isn’t out there, and people don’t understand what they’re going through.” Every day, I would see one or two posts where people would say, “I’m not going with my family because no one believes me,” and I would see that all the time.

I saw a post in June of 2022. A woman wrote very clearly, “I can’t take this anymore. Could someone please message me the best way to take my life?” It was succinct, and then there were twenty to thirty comments, “Please don’t, we’re here for you.” People were trying to support her as best they could online.

I made a screenshot of that. Whenever I was questioning, “Should I finish this book? Is it the right thing to do?” I would always look at that photo. People say the number one cause of death with Lyme is suicide, so I decided to keep moving forward.

Someone posted about a month and a half ago, “Hey, does anybody remember that post? I want to let you know that she did take her life. She left two small children. Her husband reached out to me.” Everybody has suicidal thoughts. I don’t know, but to do it because of a disease like this.

To answer your question, you know what, whatever you find. Whatever will keep you going for another day, another month, another year, the rest of your life, however long that is, I don’t care. I hope it’s not hatred. I hope it’s not terrorism. Usually, it’s not going to be something like that. But if it’s a deeper faith in whatever your religion might be, if it’s doing something you’ve never done before, good for you. Find whatever is going to keep you moving forward.

It’s a difficult situation. Hats off to you for sticking through the struggle of writing that book. I know it pales compared to actually suffering from the disease, but it is an important thing you’ve done to help people ameliorate the suffering of loved ones. That’s a beautiful thing.

I appreciate that. Thank you. I’ve got so many people. I see two notifications right here. People are reaching out. I’ve made the ebook free for Lyme survivors. The book is available on Amazon. We’re in the process of getting it up everywhere else that typically needs to be.

I decided that the e-version is free for Lyme survivors. They can contact me via LinkedIn, or Facebook is the easiest way to find me. If it’s going to help some people get some peace, if it’s going to help family members understand how to support their loved ones, then hopefully, it will continue to make a difference

There's no one-size-fits-all approach to Lyme disease treatment. Explore options, find what works for you, and connect with a supportive community. Share on X

Wonderful. Thank you so much for sharing from your heart today, what has been going on for you, and what you found to be some of the most important data points and recommendations from all your research. It’s going to help some more people. Thank you for doing it.

Thank you, and I appreciate you. Your show is great. I was very flattered to have connected with you to Get Yourself Optimized podcasts. You’ve interviewed some amazing people. You’ve done some great things in your life.

It was nice to find out or tie with The Carter Center. I know you did a lot of work with former President Carter. I spent much quality time with him when he was building the library. I cherish those moments. Good job to you for the great work you do and continue to do.

Thank you. All right, listener, I hope you get out there and make a difference in the world. If somebody is tangentially related or connected to you suffering from Lyme disease, I hope you pass this episode on to them and recommend Fred’s book. Thank you, and we’ll catch you on the next episode. I’m your host, Stephan Spencer, signing off.

Important Links