Scott is a 47-years old man who was diagnosed with late stage Lyme disease twelve years ago. His story goes back 21 years when he remembers having a tick bite. Several months later he began to experience flu-like symptoms, head-to-toe burning sensations, joint pain and cognitive issues. His search for an answer took him over ten years and forty-five doctors before finally getting a definitive diagnosis of Lyme disease. Like so many Lyme patients he received misdiagnosis after misdiagnosis. He did not test CDC positive, but did test positive for Bartonella, Babesia and Ehrlichia antibodies. Over a number of years he used oral and IV antibiotics. Scott is a huge believer in alternative therapies such as Photon and Ozone treatments. He’s found different antimicrobial oils to be extremely helpful. He also urges patients to check their environment for possible mold exposure. Like another one of our Patient Talk contributors, Scott had an infection brewing in his jaw for over twenty years. Once that infection was eliminated, he began to see progress towards his recovery. Scott is also a fan of naturopathic doctors, as they tend to look at the disease holistically versus “just killing the bug.” He encourages people to make lifestyle changes, particularly as it pertains to stress reduction. He is also a believer in switching to a gluten-free diet. Today, Scott is a life coach helping Lyme patients find a better path towards their recovery.
So my name is Scott. I am 47 years old, and I was diagnosed with Lyme 12 years ago. So, 21 years ago now, I had a tick bite. It was several months after that that the first symptoms really set in. It was like a very significant flu. And when it started, it started with head-to-toe burning sensations. I wasn't sure if I was actually even going to get through it. It literally felt like an alien had invaded my body, and I had no control of anything really. Getting up and walking across the room was difficult. My balance was completely off, so sitting in a chair was really something I had to focus on. Lying in bed at night, I had to prop up pillows on one side, because I always felt like I was leaning or falling. I had muscle pain, joint pain, numbness, tingling sensations. The burning sensations were the worst, because that was really neurological pain, and what it felt like was you had been to the beach the previous day for 12 hours with no sunscreen, from head to toe, and that lasted for several years. I had issues with my cognitive process. Things like parking your car in a garage and coming out at the end of the day, and not even knowing what floor your car was on, but realizing, "Oh my gosh: there's three garages here, and I don't even know which garage the car is parked in." I would say that I spent probably, at that point, 16 hours a day in bed. Heart palpitations, rapid heart rate, night-sweats. I would say, for me, anxiety was probably more of an issue than depression, but the anxiety was the result of not knowing what was happening, not having any kind of diagnosis, and knowing that you were completely out of control of your own body.
I started searching for answers-it took 45 doctors before I finally got to someone that got me close to the diagnosis of Lyme disease. Prior to that, I worked with some fantastic doctors and specialists that thought that it was primarily Epstein-Barr virus, which is also known as mononucleosis. That is also one of the things that people commonly attribute to something called chronic fatigue syndrome. I also had a fibromyalgia diagnosis, because I had widespread muscle pain, joint pain, that was a significant issue. And I did have a practitioner who also had me evaluated for MS as well, and fortunately they didn't see any indications for MS, but that was also suggested by a couple of practitioners along the way.
So after about 45 doctors, I needed to hit the reset button, and so I went to an organization that is more functional medicine practitioners. The medical doctor at that time said, "I have no idea what's wrong with you, but I know this lady who does a system of energetic testing. And so, I would like for you to go work with this person who is an acupuncturist, and used electro acupuncture, which is an energetic testing system." She worked at an outlet mall next to a coffee shop, and I kind of looked around, and I thought, "This can't be the place that I'm going to get answers after eight years of looking." And I had been to some of the best institutions in the country with no answers. And so, I spent about two hours with her, and she said, "I would counsel you to go back to you doctor and have them test you for Borrelia, which is the primary agent in Lyme disease. So, I did get tested with western blot, which at that point was indeterminate, meaning that there were Borrelia-specific indicators, but it was not considered a CDC-positive test. I did test over several months for Bartonella antibodies, for Babesia antibodies, and for Ehrlichia antibodies, which means that my system had seen those things and had had some type of immune reaction to them.
Now when I got the diagnosis of Lyme, my initial response was, "Great. Now I have something to work on to improve my health." Having something that was actionable was very, very important to me, and very helpful. At the same time, it wasn't the answer that I was necessarily hoping for. When my journey first started, I had never heard of a co-infection. And the reality is, that many years ago, Bartonella and Babesia were not commonly known or accepted, even in the Lyme-treating community. So over time, those have become more of a focus, but just as there were things years ago that we didn't know and understand, there probably are things, you know, 10 or 12 years from now that we'll look back and say, "Wow, there was another infection or toxin or something that was also involved in Lyme disease that didn't yet have an awareness of."
At the time that I was diagnosed, I was not aware of the politics that are also involved in Lyme disease. It is a tremendous struggle, physically, for people. It is a tremendous struggle, mentally and emotionally, for people. And what you then don't expect is to find that it's a political struggle, and that people even question the validity of your illness and your diagnosis. There are two different organizations in the medical community that have very different perspectives about Lyme disease. One of them feels that Lyme disease is very difficult to contract and very easy to cure, and the other feels that Lyme disease is very easy to contract and very difficult to cure. The reality is, there's probably some truth in the middle of those two perspectives, and yet those two organizations have not really been able to come to some consensus. Unfortunately, one of the challenges has been that the insurance companies tend to side with the organization that has the most restrictive guidelines around treatment, because that means they then don't have to pay for long-term therapy.
When I first started treatment 12 years ago, the solution for Lyme was antibiotics. There were not a variety of solutions presented at that point in time, and I think that's very different contrasted to what's available today. I took multiple oral antibiotics for a period of about three years, and that normally consisted of three or four different antibiotics multiple times per day. They did benefit me over the course of the first nine to 12 months, meaning that the neurological pain, the burning sensations, did reduce. After about the first year, though, there was a plateau, and I didn't feel as though I was continuing to progress. I still had some symptoms, and so we then went on to IV antibiotics for a period of about nine months. I had a PICC line installed that went directly into my heart to do antibiotics. I drilled a hook into ceiling at home, and I had, uh, bags of antibiotics and other things that I hung that hook for several hours a day. I would, today, choose a different path, but there are certainly people that benefit from antibiotics. We need a broad toolbox, and if that's the direction that a practitioner and their patient choose to go, I'm fully supportive of that, with the understanding that I think there's other things that also need to be in place while someone's going through an antibiotics regime.
I do not hold the opinion that feeling worse is the goal of treatment, and when people feel significantly worse, I would argue they probably are doing something that's either too aggressive for their body at that point in time, or they're not doing enough to support their body's ability to eliminate a lot of the toxins, the die-off, and things that are actually happening. So, supporting the liver, the kidneys, the lymphatic system, doing things to make sure that you're detoxifying is also very, very critical in my experience throughout this entire recovery of Lyme disease. So, my journey with antibiotics ended when I was preparing to go to Germany to do what was called photon therapy for Lyme disease.
So, the photon therapy is using a device that emits light that is then used on different points on the body to activate the energetic systems. And so, it's essentially a way to get the immune system to start interacting with these organisms, to respond to it in a more appropriate way. That therapy was helpful. It was not a miracle. Fortunately, I never went back on antibiotics, and so I have been free of antibiotics now for almost 10 years.
So, some of the other things that I explored were ozone therapy, and I think that ozone can be very helpful, not only for the Lyme infections, the co-infections, but for other organisms as well. So, it is a form of antimicrobial therapy. It can be introduced into the body through either taking out some blood, ozonating it and putting it back in. It is something that I still feel very positive about, and if I were to need it in the future, it's something I would explore again. I also found essential oils to be very, very helpful, primarily, different antimicrobial oils that I would create capsules myself, and take them every week. It is an area that people really need to understand and explore and by informed about and work with their practitioner. Certain oils can be taken internally; certain ones cannot, and really should be just applied topically, for example. But essential oil therapy as another tool to serve as an antimicrobial, that was also very helpful for me.
I think many of us need to do things to support detoxification, and so things like far infrared saunas can be very, very helpful for helping to sweat and detoxify different chemicals and pesticides and heavy metals and things of that nature. Coffee enemas is another tool that many people with Lyme disease have used and benefited from. For me, it was one of the primary tools that helped reduce my pain and inflammation in a very, very clear way, and I had tried everything to reduce the pain. There are a number of other strategies for detoxification: what we call binders, which are taking substances like charcoal or chlorella, that help to bind toxins in the body so that they get excreted as opposed to being reabsorbed in the gut. And the detoxification piece is even more important, because as we're doing the killing, we need the ability for the body to excrete these things from the system. If someone's dealing with Lyme, I urge them absolutely, at the first possible opportunity, to do this exploration for mold. If the find that their environment is safe for their recovery, that's fantastic. However, I would say that many people find that mold is an issue, and it is something that needs to be addressed very, very early on.
So, one of the challenges that I found with Lyme disease is that people often get too focused on Borrelia, Bartonella, and Babesia. The Three Bs, as many people call them. And I think that in order to optimize one's changes of recovery, we really need to step back and look at a number of other factors. Of course, the microbes are important. Mold in the living environment is probably one of the most important things that people need to explore. Dental issues are very commonly things that will hold people back. So, in my case, I had my wisdom teeth removed when I was a teenager. I knew that I had a dry-socket at the time. It was packed, and antibiotics and all that kind of stuff. Never did I know that there could still be an infection brewing there for another 20 years, and I remember the surgeon saying, "Oh my gosh, I can't believe what's coming out." Orange stuff, black stuff, all kinds of-which was later confirmed by one of the university labs to be osteonecrosis, which in fact is infection of the jawbone. And so, I think people should at least think about the dental aspect, and what that might mean for their progress and their recovery.
Another area that's also important is to look at microbes beyond just Bartonella and Babesia and Borrelia. Oftentimes, people have parasites. The immune system has been impacted, in many cases for years, by Lyme, and that gives the opportunity for the body to become host to other things. And so, parasites is a common issue, and in fact it's one of the things that, if present, should be addressed very, very early in the treatment process. And so, people should be working with practitioners that have a broad toolbox, that understand all of these different things. It's one of the reasons that I'm a huge fan of naturopathic doctors, because they tend to be very holistic, and not so much focused just on, "Let's kill the bug," but, "What things are impacting you as a person? Is it your hormonal system? Is it your inability to detoxify? Is it your immune system?"
If we talk about lifestyle, stress-reduction is absolutely a key part of recovering from this whole process. Most people dealing with Lyme have adrenal issues. The adrenals are what produce cortisol, which is a response to a stressor. Most of us are constantly in fight-or-flight, that we're not able to get into a more parasympathetic healing state. And so, it's important to find whatever means of stress-reduction works best. For me, meditation is essentially a torture. I've gotten better at it over the years, but it's not so much that everyone can go meditate, but they need to find the thing that helps them to release their stress. Diet is also very important. I think that eliminating gluten for essentially everyone dealing with Lyme disease is critical. It creates inflammation. It also creates cross-reactions in the immune system that then can affect the brain. So, gluten, from my perspective, is out. And so, a lot of mental, emotional work is also very important to get through something like Lyme disease, but let me tell you: you go through something like Lyme, where you are invalidated over and over and over, and you are told that your entire condition is in your head, and that it is not a physical condition, and if you didn't have some emotional work that needed to be done, you will have some that you need to do after that invalidation. I think, for many people, Lyme disease itself almost creates a post-traumatic stress event, and so it's an important thing to consider what can you do to help balance your own mental and emotional aspects of your recovery as well.
By about seven years into treatment, I was in a very, very good place, and felt like Lyme was not really a part of my thought process anymore. Lyme is something that is, at this point, behind me, but it also led me to a realization that I need to be better to myself; that I need to take better care of myself. I would say, for me, and for many others, that Lyme disease is really a messenger, and the process of going through it is absolutely life-changing. I think it's probably the most difficult thing that those of us that have dealt with Lyme will ever, ever experience. It certainly was for me. It has not been my experience that one practitioner has all the answers. People do get through this condition. People can become largely free of their symptoms, but if they're not getting to that place, I think that they should be open to exploring adding additional people to their medical team, consulting with additional experts to see what perspective they might bring to the table that might actually reveal a very important piece of the puzzle for them.
For me, this has been a 20-year journey now, and even though I've felt pretty good for the last several years, it was a very long, very unexpected series of difficult events. I remember crying myself to sleep at night many, many times, and it was a very difficult experience. Not knowing what was wrong with you, the symptoms that led you to feel as though you couldn't function and get through the day lead to a lot of anxiety and a lot of fear. That's a common thing that people with Lyme experience. And it's not because they have a mental situation. It is because it's Hell. It is really Hell going through something like Lyme. Lyme disease patients are warriors. They're really heroes for me in a lot of ways. When you see the depths to which people can really dig in and reach down to try to better their situations. I have friends today that are so much more meaningful than all of the ones that I lost over the years, because we've had a shared experience that was the biggest thing, probably, we'll ever really face. And so, while the journey was Hell, I've transformed as a person. I think I'm a better person. We always can become even better people, and so I know there's more growth to happen. But I look at myself 20 years ago, and I look at myself now, and there are hints of the same person, but a lot of things are very, very different. And so, the journey itself was painful, but it was a tremendous growth experience for me. It led me to a place of being able to also work with and help other people, which has been really, really beyond rewarding.