"Maybe I don't have Chronic Lyme." Adam's 8-year journey from a diagnosis of Chronic Lyme to Fibro
Updated: Nov 27, 2022
Click here to listen to the first of the 3 episode series.
This is Dr. Michael Lenz, and we have a special guest. Adam is a patient of mine, and I've known him for almost a year now, and I want to share his story, especially on the topic of Lyme, chronic Lyme, post-Lyme treatment disorder, and related problems. And hearing his story will help other listeners who may have heard of this, maybe wondering about it, and might be going through it right now.
So welcome to the show, Adam. Thank you, Dr. Lenz. It's a pleasure to be here. Awesome. So tell us a little bit about yourself, your background, and then the battle you went through.
Okay. So like you said, my name is Adam. I was a former athlete as a child and up through college as a baseball player and basketball player, and I have been an active person my whole life. It was almost to the comical degree that people would always give me a hard time about my positive attitude. And healthy, a healthy person pretty much my whole life, had some injuries, broke a few bones, and was certainly sick on and off like anybody else, but nothing significant ever.
And then, one day, it's funny. I remember the date was August 11th, 2014. My wife Erin and I were going out of town that day, and I woke up and said I was tired. I remember she was driving, and I was in the passenger seat. And she literally pulled the car over to the shoulder and looked at me, and said, What do you mean you're tired?
Because it was just something, I never said. It was a really interesting moment. I'm like, Man, I'm just really tired today. And she was going out of town later that night. I spiked like a really big fever, like 102 or 103 fever. I had was feeling really sick. I woke up not feeling great and that was the beginning of this crazy journey.
Adam's initial symptoms may be familiar to many of you who have been diagnosed with fibromyalgia or chronic fatigue syndrome. If this is the case, I would love to hear from you. Adam continues his story.
All of a sudden I was tired. I was getting joint pain in some consistent places. I felt cranky, it's interesting to describe it, but that began like this, not being sick all the time. I call, I was speaking with my father who's a physician who would normally, call me in a zpac or something like that, right?
And this time he said, I don't think so. I think you need to go see somebody and see what's going on. Cuz it was. A week. And it's funny when you're sick for years and years, the first time when it started and it was a week old, that seemed like forever to me. So I, wow, I've been sick for a week. I went to an urgent care/emergency room, which was just trying to ensure I was not in trouble.
And that led me down the initial where we'll start going down the western medicine path. And then, as I tell the story a little bit, I veered off into different areas to figure out what to do. But initially, it was all about testing. I had a couple of these just through testing. They found a couple of nodules on
nodules on my lung. So we chased that down, but that turned out to be nothing. I had xiphoid pain, which is that, between below your ribs, you can feel that little kind of button. I didn't know what that was. So they thought maybe it's like something is an esophagus or stomach.
So I had a biopsy there. As I talked about, I had a lung biopsy, but that was nothing. They did stress tests which were normal. They thought maybe it was mold and all these things that they tested for, and everything came back cardio. And I was in really good shape. So I remember going to a neurologist.
I walked in. He did a couple of tests on me and looked at me. So what are you doing here? You, why are you here? You're not supposed to be here. I did very well on the test. So at that point, I wasn't getting better. It was turning into where I was getting a little bit of dizziness in some buzzing, and stuff in my head, hands, and feet
were feeling a little bit. And a friend of mine, we were, living in Madison at the time, said have you thought about Lyme? I saw my doctor in Madison, and the Lyme labs were negative.
But then a friend said you're at the wrong doctor, basically. As this story unfolded, I didn't even know what that person meant. But it turns out that, in the Lyme community, there are these Lyme literate doctors who deal with Lyme on a different level.
Whether or not the way that they dealt with it was right is up open for a tremendous debate depending on which road you go down. But I went down the only available road, the next one, to try to get better.
So I saw this doctor who tested me again through a special lab out in California. And again, I was negative, but with a few of these, they call them like these bands, right?
Adam had been tested at a controversial testing center in California, checking for antibodies to Lyme disease.
So if your body reacts in a certain way, it would be associated with that, the line bacteria, right? So I had these bands that were not associated with what the CDC said, but he said, maybe you still have it. And he and to me, and he gave me like, gosh, you can't swear on this podcast, but I would use a swear word to describe the amount of supplements I got at the same time, right from this original doctor.
And so I came back. I remember throwing this bag on the table. My mom was there at my sister's at the time because the doctor happened to be near Chicago. And I was like, Okay, like boom, you could hear the weight of it. It was probably six or eight bottles of supplements and doxycycline. The doctor said we're going to start at six weeks.
So what was interesting is I started taking the doxy. I don't know what was affecting me at that time. If you had asked me if this was the right path, I would have said I'm a hundred percent because that's the road, and that's the path I took. It was like that Robert Frost poem, the path I took and I went "left."
And I decided that's what it was. So I started taking the supplements. I did the doxy. It's funny. I went back to my email today to remember cause I knew we were going to speak and what I was saying at the time was, hey, my joints feel a bit better, but I'm really dizzy.
I'm still feeling a lot of these things. And then, it was on to the next round of antibiotics. So I think they added, gosh, I can't remember the name of it, but it was another one that really made me feel sick. And I started to feel sick from the antibiotics, but at the time, I was told I was doing something called herxing.
I was told that I needed to get worse to get better. So as bacteria would die off, I would be detoxing. If I get up and feel terrible, it would almost be like I'm on the right track. But I never got around the corner to better with this particular.
Adam was referring to the Herxing, the Jaris Herxheimer reaction that was named after. European dermatologists described it in 1895, in 1902, with syphilis—patients who developed exacerbations of their skin lesions after treatment with mercurial compounds. Mercury, at the time, was one of the attempts to treat syphilis.
After penicillin became the drug of choice for syphilis in the 1940s., the Gerrish Herxheimer reaction during the first 24 hours of treatment in primary and secondary disease. They were manifesting as fever, chills, headaches, myalgias, and intensification of skin rashes.
Other spirochetal infections, the type of bacteria involved with Lyme disease, leptospirosis, and relapsing fever, gave similar reactions after treatment with penicillins, tetracycline, and erythromycin.
One of the important things to pay attention to here is that
this did occur in those with syphilis infections. The patients diagnosed with Chronic Lyme typically have been done non-FDA or CDC-accepted testing.
This conclusion of the attribution of the symptoms to the Herxing reaction was an overreach
Adam continues to share his story
Can I ask you a question?
How long from the first symptoms until you went to this doctor?
So I was sick in August, and I went and saw this doctor in October, like late October. I had been ill for a couple of months before I got on any antibiotics or
They gave me a broad-spectrum antibiotic, but no response. That was one of my first doctors because I had those symptoms when I went right.
But this is October of 2014, and by January, it doesn't seem now that you had been sick for several years like that was a long time. But I've been with this guy from October to January, so I'm writing him off. This isn't working.
I'm not better. I was doing acupuncture at that time. I started to do an infrared sauna. I really scoured the internet, and my personality is also very driven in my professional life. I'm very driven in my personality and was extremely driven to figure this out. I was convinced I could figure it out.
So I did. I moved on from there to complex homeopathy. So there was a doctor in another state that had on, through testimonials and sites, hey I have this treatment for Lyme, right? And it's through complex homeopathy. They treat you from long distance.
And I went back and saw that email, which was very convincing, right? Hey Adam, I'm so glad you came to me. Your symptomology is what we see all the time. Basically, this is where your journey's going to end. And it's a funny thing, Dr.
Lenz, I, this is when I started to say I just want to be someone's testimonial, right? Because you'd walk in and read all these great testimonials, a powerful thing when you're not feeling well is hope. You don't want to distinguish hope, but you get really hopeful. And I'd read them, and then I would not end up being one of those particular testimonials.
I did complex homeopathy for a few months, and what was interesting is, my father, who knew nothing about this at the onset, also was learning with me, right? And he became a champion for me. When I go back, I was really sick. I wasn't feeling well and needed some help
It took me a while to really get in tune with how I felt versus pretending almost I'm going to feel better.
What were the predominant symptoms you were having at the time?
In January, I was dizzy. I had some palpable head pain, almost like pressure in my head. My wrists would be sore intermittently. I had a lot of like rib pain in my chest. I was tired—all of those things. Plus, I was really scared.
Fear was a really big part of what I was dealing with at that time because I had never been sick and not specifically for not something that couldn't be figured out. I'd always thought that you went to the doctor. This is what's wrong with you. Here's how we treat you. You take it for whatever amount of days, and you're fine.
And that was every single time with everything I'd ever dealt with in my life. So I was scared. I was wondering, you start to think, is there something really wrong? Not really. There was something more serious. They tested me for AIDS, they tested me for, gosh, a lot of scary stuff, right?
Where maybe have you this Adam? And I was like, There's no way I could have that, but then you start to, I don't know, get tested and tested, and become a pin cushion.
Many of you listening can likely relate to the fear of not knowing what is causing your problems and not experiencing effective solutions.
And now it's January. I did this complex homeopathy it didn't help me.
And I moved on to, I did some like this gentleman in Alaska was doing this like immunotherapy where they're titrating the "Lyme" down to a millionth or trillions of versions of it. You're basically taking it to get your immune response to work.
For those unfamiliar with the theory behind homeopathy, the thought is that you can take something causing a symptom or disease and dilute it down to a very low level, which works to help build a defense against that problem. A basic belief behind homeopathy is that like cures like. In other words, something that brings on symptoms in a healthy person can, in a very small dose, treat an illness with similar symptoms. This is meant to trigger the body's natural defenses.
And he was a really brilliant guy to talk to. But let's start, while I'm talking to you, adding up the dollars, right? Because every one of these isn't free, and nothing's covered by insurance in this world, right? So even up to this point, we're spending, every time I'm seeing one of these folks, it's at least, not that it's the most important thing, but it's $500, or it's a $1,000, or it's $1,500 to go down each one of these kinds of paths.
And now we were in 2015, and it was in 2015 that there was a second Lyme literate doctor that we've spoken a little bit about that I was recommended to see. And I again was looking at the website, and someone told me they'd heard good things about their protocol out there.
And I went out and saw this practice. My mom went with me this time. This had become a family affair. So we went out, and I remember sitting there and her talking with the doctor. So it's a big practice. There's usually the Lyme literate doctor, and then there are a ton of different protocols that they happen to be doing.
It could be hyperbaric oxygen, IV ozone therapy, supplements, and this is not just this one doctor I went to, but that's sometimes the scope that you run into in a Lyme literate facility. It's throwing a bunch of different things at what you're presumed to have.
Adam made excellent observations. He observed that they were throwing a bunch of different treatment options at what he was presumed to have.
That's a key point because maybe he didn't actually have Chronic Lyme, as he started to realize later on.
Adam continues Now, I got tested again at this time, and the exciting thing is, this is one time I did test positive, or, this sounds so weird to say, at least I was told I did. I was supposedly CDC-positive. I had tested negative three or four times, and we are now months and months and months later.
And I had tested positive, and that allowed me, I think, to go down the road of some antibiotics. So I ended up doing it at this facility. I was there for a couple of years, at least 18 months. And I think we went down this road, and some things would help a little bit.
Ozone was helpful, but not helpful like downstream feeling better, but making me feel better temporarily. It would make me feel, and I don't know if that was just the oxygenating of the blood coming back into my system. They would do ten pass. They'd literally pulled my blood out and then put it back in.
I was doing IV Rocephin, a really heavy antibiotic, and I learned how to do IV Ozone. And I was doing that at the same time. I was doing a bunch of different IV antibiotics or supplements. A lot of supplements, a lot of visits.
And we've discussed this before; the intention there was very positive. The intention was that they were going to help me. I went back and looked at some of the things we wrote back and forth, and I was always hopeful. I often would end the email with, I just wish it was working for me.
So I would say, can I try this or can I try that? And it becomes tremendously expensive. And then all of a sudden, my wife, they said that we, maybe she has it, and then, we have a little boy named Griffin. Perhaps he has it right. And Griffin, my little guy, has a genetic condition, and he is doing great now, but we've had some ups and downs with him early on.
But we were going down the path for a while of that, all of us it turned into that and it became pricey, right? So when it's not working and you're spending what was equivalent to a salary in a year, basically on something like this, you have to eventually say, "uncle," this, isn't it. This is a big thing, too, because now we are into 2017 and 18 and I've spent two and a half or three years chasing this lane. I have Lyme disease, but it was as simple as me saying, But what if I don't? I've seen some of the best people, why aren't I better?
Or why wasn't there any testing saying, hey, this is what's going on. It just became more empirical. It became really based on, how are you feeling? I'm feeling a little bit of this. Okay, let's try that.
So I shifted. First, I shifted and started thinking about mold. Mold was the first step, actually, eventually, to finding you.
I went down the path of mold in 2018/19. I saw a mold specialist doctor, and they had a different protocol, and I did a neuro quant MRI, which was my third MRI throughout this entire process, because, early on, I was like, Do I have MS?
It doesn't make sense that I would have these feelings in my body without reason. But, I'm always, my wife and I laugh like the doctors are always saying to me, wow, you tested great. There's no smoking gun, right?
When I started going down the mold, I remember saying, wait a minute, do I have mold in my basement? I remember Erin, my wife, and I in a hazmat suit. I took everything out of the basement, stuff that I grew up with as a kid.
I got rid of everything. That's what the mold specialists told me I was supposed to do. That's what I did. We did have mold in the house.And I did show to have some allergy to it, but it wasn't black mold but I had been to Western Medicine. I was tested for mold. I'd never come up positive.
But I went down this road and went in with both feet and hands. Like I dove into this thing to see if it was for me. I ended up taking Cholestyramine,
A cholesterol drug, right? Yes. But they said it's a binder that they use for mold. And I'm not promoting it here. I'm just telling you that I took it. So I tried that. That didn't work.
And then, I had something, the first thing that worked for me, and I started thinking about it differently.
I read some books on brain training and on determining whether or not I have pain. Do I have an infection, or do I have an immune system or a brain that is misinterpreting a signal that might make somebody else feel fine but make me feel sick? I started doing these practices and working on them, and I improved for the first time.
That sounds crazy, like legitimate, right? I was better, not better, like all the way better, but my attitude was much better. That was a big thing, and I started to become active again. I began to spend less time thinking about what was wrong with me. It's great to be your advocate, as I have been for years.
But it's not great to be obsessed and to be thinking about it and overanalyzing everything that's going on in your body. I think that can lead to the symptoms I ended up having when I saw you that I had helped with, which are much different than the ones I started with. They're different. I don't know what led me to fibromyalgia. But I think a virus had something to do with it. My body was working on trying to rebalance itself. And I, over time, really started through the mentality of it, and in combination with what I was dealing with, I think it led me down this road. I also had a severe emotional trauma.
Facts don't matter, but in the middle of this, it happened to me about nine months before my first symptom. I never thought about that until I went through the process years later. But it was a significant thing that happened to me that knocked me flat for a long time.
As Adam's story demonstrates, while you are in the middle of the battle, you may not be able to think about everything that was going on that led up to the struggle that you're going through.
Retrospectively, he can recall the impact of major stress on his symptoms. This is likely familiar to many of you with fibromyalgia and related problems, as well as those who have loved ones or patients going through this.
And I don't know if maybe that affected my immune system and made me a little bit more open to getting thrown off. So anyway, I started to read about fibromyalgia. It's funny, going down all these things. It's not something I'd ever considered because I'd always thought it was an infection I had, right?
I thought I could take some antibiotics or supplements I needed to turn around for my body. So I remember I got, gosh, where did I actually learn about fibromyalgia? I was listening to many podcasts at the time and found your podcast.
And it made a lot of sense. I think at the time you were talking about a combination of ADHD; you were talking about the symptoms. You were basically talking to me, and I started returning to the gym. I made this decision. I'd seen this other video of this woman.
She said she had fibromyalgia, so I started to do some research on it. And she was talking about a very similar symptomology to me, and she said, I stopped moving. And it's true; I had stopped. I'd become sedentary. I'd done some things, some running or a little bit of this, but I hadn't gotten moving again like I used to.
And basically, she said emphatically and, with some curse language, get up off your whatever. That's what I did. I just tried it and the next day, I went back to the gym, and I've been going six days since, as I said. It's going to be harder, maybe I'm not going to be able to do it, but I'm going to go.
And it was when I was at the gym, the first day I was there, I was looking at the fibromyalgia podcast, and I saw conquering your fibromyalgia with you. And I listened, and to be honest, I'm never someone that listens to anything in order. Like, I look for something that looks similar, and I, and the first ones I started to look at, I think you were talking about like one of them where you were going into the symptoms of fibro, and a couple of the stories that you had. I called Erin, my wife, from the gym's parking lot at 10 p.m. And I called her and said I just listened to this podcast and then researched you. I couldn't believe that you were in the same state as me.
That's where we will finish this episode. Next week we will continue the conversation. With Adam and his journey from chronic Lyme diagnosis to fibromyalgia, learn more about how he got better.
For those who have enjoyed the podcast and want to help bring this message to others.
Please hit the like or follow button and leave a five-star review
That is the best way others can learn more about how to live better, to lessen and even reverse the symptoms of fibromyalgia and related problems. Until next week go Team Fibro.