Dave is a 29-year old young man that was diagnosed with Lyme disease 8 years ago. While he doesn’t remember getting a tick bite on a family vacation to the east coast he does remember waking up one morning with a large swelling on his face. Five months later he was diagnosed with Lyme disease. He remembers immediately dealing with severe joint pain that migrated between both elbows and knees and being bed-bound for weeks. After receiving initial antibiotic treatments, Dave felt significantly better only to relapse after graduating from college. Again he began experiencing significant cognitive issues and joint pain. Dave talks about the rigorous treatment for the disease including a long list of herbs and supplements along with antibiotics. He talks about the significance of gut disease and how he offset that he with probiotics and diet. He also found alternative therapies like light therapy, hyperbaric chambers, Ozone, and Epson salt baths made a difference in his recovery. David speaks about the significant challenges of brain fog and insomnia that continue today in spite of the fact that he is back in the working world. He is a proponent of the use of CBD to help offset his chronic insomnia. He talks about the emotional rollercoaster of Lyme disease and the significant financial impact of covering the costs to treat it. He emphasizes how important it is to educate yourself about Lyme disease as a way to help navigate this difficult medical journey.
I’m Dave. I’m 29 years old, diagnosed with Lyme about eight years ago. Life before Lyme was very active. I felt cognitively aware. I felt, you know, able to think very clearly, and was definitely a active individual that played a lot of sports, was really into music, playing the guitar, had a few different hobbies on the side, snowboarded, kind of everything in the extreme sports realm. Lyme kind of inhibited that a bit, with the pain and different joint issues that I had after being diagnosed with the disease.
I don’t remember getting a tick bite. I was on Martha’s Vineyard on the East coast, staying in a cabin, kind of in the wooded area there. And I woke up one morning with kind of a large swelling on-on my face. I didn’t get any real noticeable signs, and just thought it was something wrong with my face at the time. Four or five months later, I was actually told that I had Lyme disease.
I had severe joint pains in my elbows. There was a few mornings that I remember I couldn’t even get out of bed. My knees were completely swollen. I was basically bed-bound for a few weeks, which was extremely uncommon for me because of that active, outdoorsy, sports lifestyle that I’d lived previously. I was pretty spellbound, you know, confused. I just didn’t really even understand what was going on.
A doctor gave me a Western blot and I tested positive for Lyme disease. And I, again, was clueless as to what that really meant, and then kind of found out, just, I opened Pandora’s box in many ways, in just how difficult it is to deal with the disease. When the doctor finally diagnosed me with Lyme disease, I think there was some relief, but there was also some uncertainty. And I feel like, within society, within the medical world, it’s still such an unrecognized disease, and there isn’t really a straightforward method to treating it. Even doctors themselves are pretty confused and don’t really know the exact meaning behind the… I mean, for me, they said, “Here, here’s, you know, three weeks of antibiotics. You’ll be all set to go.” And that really is not sufficient in order to heal.
So I graduated from college, and I actually started experiencing some cognitive and joint pains again. I conversed with my mom about it. We talked, you know, about potentially Lyme coming back into the picture. Saw a couple nutritionists who’d run a few blood panels and discovered that there were some abnormalities, and that maybe I should go seek a specialist. And actually ended up seeing a Lyme specialist after that, kind of as a just-in-case, because I was a little bit confused about some of these things coming back. They retested me and found that Lyme was still persistent in my body, and that I needed to go on another protocol.
It was a quite a rigorous treatment, a long list of herbs and supplements, a few other antibiotics that were included there. You really do have to look at all the different levels of Lyme, whether it’s, like, the toxicity levels and how to really clear your body of all the toxins that end up getting stored. And when you’re taking all these drugs, you end up kind of holding on to a lot of them. And so you need, in my opinion, different mechanisms to clear that out. Gut bacteria is a huge thing. I ended up having Candida and yeast overgrowth, a lot of infections in my gut. Probiotics and other kind of beneficial foods, you know, sauerkrauts, other fermented foods, kefirs, that really help to boost the internal flora in my gut, you know, provide me with the beneficial bacteria that I needed.
I look at the, kind of, gut-brain connection, and the importance of healing the gut as being really high on the priority list, in order to overcome any of the symptoms that kind of come about from Lyme disease. So, taking probiotics is a really helpful part of healing from Lyme. I became very curious, started looking into these alternative therapies. There’s light therapy. There’s just different ways to detox. I’ve actually done hyperbaric. It’s like a little chamber that you sit in for about 45 minutes. And the chamber that I was in pumped oxygen, and then also had a sauna effect. So it made you sweat while also oxygenating your blood. And oxygen in the blood immediately helps to kill off viruses and bacteria. So that was definitely a huge help. After doing some of these detox programs and modalities, you’re able to break free, and you feel so much more relief.
The lifestyle changes can be pretty dramatic. I had to become more disciplined, and I had to really devote my time and efforts into healing. I had to appreciate that aspect of kind of being different and wanting to take care of myself at the same time. Chronic fatigue with Lyme disease is a huge issue. It really kind of knocked me down. Again, somebody that was very physically active and used to being on-the-go constantly, I just didn’t feel like-like myself. I felt just like my legs had been take out from under me, unable to function at a normal level as most people.
The pain with Lyme can be excruciating. My elbows ached almost to a point where I couldn’t move them at all. It completely took me out of my normal flow, and where I was bed-bound for many days at a time. It almost felt like people were jabbing a knife into your knees. And it was a pain that, again, I’d never felt before. I had to find, you know, a way to deal with it. And that, again, is why I sought out all these different therapies. There’s some level of, like, wanting… you get used to it at some point. I mean, you almost get desensitized. And I know I currently live with pains and still have some joint pains, but I’ve gotten used to them over the years, which is kind of a interesting element of it as well.
The brain fog aspect of Lyme is really challenging. I look at it, you know, you’re running a race and suddenly you’re caught in molasses. And really you’re just trying to get to the finish line, but you’re stuck. You know, I’d wake up in the morning and feel extremely cloudy. You’re just trying to swim through this haze. For me, it was extremely difficult to deal with, especially in a work environment, when you’re expected to perform at a high level and people don’t really understand what you’re dealing with. And I think the cognitive side can be very debilitating and one of the hardest challenging aspects of the disease.
The sleep impact is probably one of the hardest challenges to deal with. It wears you out. I did go through many periods with insomnia, waking up in the middle of the night, kind of the anxiety or anxiousness that you deal with that you can’t fall asleep, you’re sleeping three hours at a time, and that really has a long term, not only short term, but long term effect on your health. And the sleep deprived state that you end up being in, you know, has downstream effects, whether that’s, you know, anger or you end up getting upset easier. I use some THC supplements, which were some cannabis-related, that helped me kind of deal with the sleep side and allowed me to sleep the full six to eight hours that were needed in order to kind of keep me rested for the following day. So that was a huge kind of remedy on my end.
I do think that, for some Lyme patients, there is a usefulness behind cannabis. I think that it can actually be a huge benefit, especially cognitively. And, you know, those dealing with the anxiety and the anxiousness that may come at the nighttime, when you’re supposed to be sleeping, it can be an incredible sleep aid. So that really helped me out and, again, I’ve done what-what’s been best for me.
Lyme disease does present a myriad of symptoms. You have to really understand, you know, just the different components, and how the body operates. Like, healing my gut will help to heal the cognitive aspect. I think going after the joint pains helped with a lot of other areas of my body. I was taking so many different supplements and so many different herbs that it’s the combination and kind of the coalescence of all of those that helped to fully heal my body.
Yeah, I think the mental and emotional parts of Lyme disease are incredibly draining and difficult to deal with. For me, I look to other therapies. Meditation was a huge one for me. I do that, you know, for 20 minutes every single day, and have found profound results from it. Yoga, um, and being able to, again, figure out a way to connect with my body and kind of connect with my s-more spiritual self. I think there’s a way to kind of create this space of clarity within your mind that you can almost deal with the depression and anxiety and let those things go. I think it takes a while for many people to get to a place where they can do that effectively. My ability to get back into movement and get out and work out and be able to run was really important for me to deal with these other effects of the anxiety and depression that do creep in at some point.
I think the hardest element, just with any of the healing process that I’ve dealt with, is the social aspect. For me, it was the choice of, like, do I fit in with everybody and feel sick still? Or do I have to, you know, step outside the box and become this individual that seeks alternative methods of healing and is very dissimilar from everybody else and what they’re doing? That’s how I feel kind of in a social event. You know, I eat differently. I’m constantly carrying around a mason jar with, uh, green smoothie. But having to live kind of this separate life of healing and, you know, taking care of myself wasn’t always the easiest.
Lyme is an enigma, and many people don’t really know how to even have a conversation about it. You have something like cancer or AIDS that is well known and, in some ways, marketed in society as terrible diseases that we need to go after and get rid of. Lyme disease has a whole different approach, and it hasn’t gotten the platform that many people can gravitate towards or even learn more about, which for me is hard, because I am constantly trying to educate people. It can be tough. It definitely is something that I haven’t figured out yet, and how to explain succinctly enough to people to really tell them what Lyme disease is. There’s so many different components to it. You don’t want to go too far down the rabbit hole with people. It then confuses them even more. And they’re like, “Oh yeah, well I have joint pains as well. Does that mean I have Lyme disease?”
It’s a tough subject to discuss. People generally think Lyme disease is not a chronic disease. That is kind of the societal understanding of Lyme. I deal with chronic Lyme, and I know that that’s something that is pervasive in my body and is something I’m continually dealing with.
The financial impact of Lyme disease is severe. It can be an extreme financial burden: all the drugs, everything that you have to buy, seeing all these doctors that aren’t a part of the insurance plans that you have. For me, thankfully, you know, I’ve had a family that was very supportive, and I was able to get through that hard part of dealing with the finance side. It took me about four to five months to be diagnosed with Lyme disease, which, I’m lucky. I’m thankful for that, and actually came a lot sooner than most people who end up finding out about it way later in life.
Lyme disease to me has been a blessing in many ways. It’s allowed me for this opening up of my consciousness, and actually made me more of, I guess, who I am today. It really has molded my paradigm, and how I believe in the world, and just what I’ve been able to find out about health and wellness. And I wouldn’t have otherwise traveled down this path of trying to educate myself and learn more about how, uh, everything functions, the stresses, the pressures, the anxieties, all these different elements that are hurting human health. I now have somewhat of an idea of how I can navigate through this.
Dealing with this disease is… it’s a journey. You figure out this level of homeostasis where you can kind of manage it effectively and live a regular lifestyle. I think that getting Lyme disease was a blessing and a curse. But it’s also provided me with this whole new perspective on how to heal. Everybody’s dealing with something, and I think that Lyme kind of opened my eyes to that aspect of it.