Laura is a 36-year old professional woman who was diagnosed with Lyme disease three years ago. She grew up in the mountains worrying about rattlesnakes and having absolutely no knowledge about ticks and Lyme disease. As a young adult, Laura traveled extensively serving in the Peace Corps for two years. She was very athletic and loved the outdoors. About eight years ago she began to experience a decline in her health. She went through periods of severe fatigue to a point where it was just hard for her to get out of bed. In her search for answers she met with many doctors. She was diagnosed with chronic fatigue and a neurologist even had a biopsy done at the base of her brain thinking that it was a tumor causing her dizziness. Just before she went on disability from work she found a Lyme literate doctor who thought she might have parasites from traveling all over the world. Unlike many after receiving thorough blood testing her parasite panel came back clean but she actually tested CDC positive for Lyme disease. Laura speaks to how emotional that moment was for her when she was finally able to say to her boyfriend and family “that there was actually something wrong with me.” In addition to Lyme, she also suffered from mold exposure. Like other Lyme patients her initial treatments were not positive. At one point her doctor thought they were missing something and sent Laura to a biologic dentist who discovered that she had a severe infection in her jaw from a number of root canals done in her early twenties. After clearing up that infection her Lyme treatments began to take hold. She goes into detail about the many symptoms she experienced along this medical journey and how alternative therapies like Ozone produce positive results. Laura talks about the financial impact have been significant and have definitely been one of the hardest things about this disease. She also talks about how Lyme decimated her social life and how difficult it was to rebuild your social circle after being sick for so many years. Laura stresses the importance of finding a team of support. Today she is back at work, but admits that her new normal is significantly different from where she hoped she would be.
My name is Laura, I’m 36 years old and I was diagnosed with Lyme disease three years ago. I’m a project manager, I manage clinical trials, I’ve got two dogs, I’m a yoga teacher. I just got engaged last weekend to a really great guy who's supported me through the whole Lyme journey. I was a very active person. I would wake up, I would go to yoga, I would meet my friends after yoga class, we would go to the climbing gym, we would climb for a couple hours, so, very active social life.
I travelled a lot. I served in the Peace Corp for two years in Kyrgyzstan, very, very active person before my diagnosis. My story is a little bit different than most Lyme patients. I think a lot of people have a very clear tick interaction, tick bite and then a timeline for it. With me, I actually think that I was bitten, probably as a child. I grew up in the mountains, they told us to look out for rattlesnakes but nobody knew anything about ticks. So, I can track some of my symptoms back to like the age of 12, I started getting insomnia.
And then just over the years I had waves of feeling good and feeling bad. And then I would say about eight years ago was when I really started to have a decline in my health. I would go through periods of severe fatigue but then would come out of it. So, I just thought, you know, regular 20 year old going out, staying up late, burning the candle at both ends. And then it sort of progressively got worse and it got to the point where it was just hard for me to get out of bed. And I spent probably three years going to different doctors and really pushing to try to get some help because it wasn’t normal. I had seen neurologists, I had had biopsies done. I was told I had a tumor at the base of my brain and that’s what was causing my dizziness.
I would get in the car and I would forget where I was going or where I was. Even at work, I would get back to my desk and I didn’t know where I was. I got shingles twice in one year. And was kind of the end of the road for me. My regular primary care health practitioner had put me on a two week disability. She called it, “Chronic Viral Issues.” And at the end of the two weeks I was completely unable to care for myself and there was mold in my house. And it was those final two weeks of being in the house 24/7 were like the nail in the coffin. Before I went out on disability I had found a Lyme doctor in the area who actually thought that maybe I had parasites from travelling all over the world and he said, “Well, let’s just do a Lyme test to be sure.”
And parasite panel came back clean and the Lyme test lit up like a Christmas tree and I’m actually CDC positive which is somewhat uncommon. I remember exactly where I was standing when the doctor called me, he called me himself and he told me what the diagnosis was. And I didn’t even really know what Lyme disease was at the time. But, after eight years of searching to try to figure out what was wrong with me it was like, “Finally, I have something, somebody believes me.” Who-you know, there’s light at the end of the tunnel. There’s something I’m gonna be able to do.
And I sat down and I called my boyfriend and I said, “They know what’s wrong with me.” Like, “There’s-there is something wrong with me.” And having so many people tell you there’s nothing wrong with you to finally have that moment was really, I mean, it was one of the highlights, I think, of all of it, you know? You don’t totally know what you’re up against yet but, just knowing that there’s a name for it, a treatment and something that you can finally fight, um, was great.
So, my Lyme literate doctor does a little bit of Eastern and Western medicine. And so he had given me the option to go the antibiotic route or to go the herbal tincture route. I can’t remember now why we decided to go the way that we did, but with the mold I had to move out of where I was living, re-mediate everything, get on mold detox treatment. And I had to do all of that before I started the actual Lyme treatment itself. And It was about a month and a half, I think before I actually started the Lyme treatment. And then I started on the antibiotics. I didn’t feel good. You just feel so bad all the time. I didn’t know what was what.
Was it the mold detox, was it the Lyme? Was it the antibiotics? It was really hard to tease out what was what. You just have this constellation of symptoms, you’re confused, you’re tired, everything hurts. You feel like you’re coming down with the flu. It basically went on like that for almost a year. And they didn’t really know what it was. And finally at one point my doctor said, “We’re missing something, there’s a piece of this puzzle that we’re not understanding. The only thing we haven’t explored yet is your dental work. Have you ever had any dental work done?”
And I said, “Yeah, I had some root canals in my 20’s but, you know, no pain, no nothing.” So, I ended up going to a biologic dentist who did like a 3-D x-ray. And I ended up having an infection the size of a dime in my jaw bone. Um, and as I understand it you’re not supposed to have dental work done when you’ve got an active Lyme infection. And I had active Lyme in my 20’s when I had the root canals. And so they went in and I ended up having to have a series of surgeries in my jaw bone to clear the infections out. And within two weeks of recovering from the surgery all Lyme treatment started to work. It was really the turning point for everything, a year into everything.
My day to day medicine protocol, you know, you wake up in the morning, on an empty stomach, you put a certain number of tinctures into a glass of water then you take four drops of one thing, wait five minutes, take four drops of another thing, wait five minutes. It’s a 20 minute process of taking all of the tinctures. then you have to drink some binders that help with the mold toxins in your body. And you can’t eat for 45 minutes after that. And then after that you have to eat a fatty meal that helps the binder bind with the toxins on the way out. It’s just your entire schedule revolves around the medication. You are on so many things over the course of a day and they all have to be taken within certain amounts of time before and after food.
And then you’re just sleeping the rest of the time, which is ironic because insomnia is one of the worst [LAUGH] side effects. Sometimes I had good days and my friends would come over and we would go for a walk. And, you know, other days I wouldn’t get out of bed for four or five days at a time, you know? Taking a shower, the hot water actually raises your body temperature and creates die off. And then you’re exhausted and you don’t feel good and it’s another three days before you can get out of bed or do anything again.
It’s really, really difficult. It-it’s hard on you. It’s hard on your partner. It was challenging. So, I had changed my diet years before my diagnosis. I noticed that gluten really bothered me a lot. Within five or six hours, I lose feeling in my finger tips and I get vertigo and I get disoriented. So, I had gone completely gluten and grain free early on and when I got diagnosed my doctor actually said basically you need to be on a ketosis diet. So, I went completely organic, Paleo, ketosis basically. I was eating meat, green vegetables, nuts and coconut oil all the time.
And beyond that there wasn’t a lot to change in my life style because I didn’t have much of a life. I was home bound and bed bound and then only thing I had control over was what I was eating and the meds that I was taking, you know? If they told me to paint my face blue and walk backwards, I would try it. [LAUGH] So, we looked into Ozone, it seemed harmless enough and I was doing a combination of tinctures and Ozone when I went in for all the surgeries in my jaw. And, I’ve got to say, to this day, the Ozone has been the one most effective, least expensive treatment that I’ve had. And I bought an at-home ozone machine and I use it every day. I’ve been using it every day for two years.
And, I’m in remission as far as the Lyme goes, which is great. And I absolutely attribute that to the Ozone. Now, I went back to work 25 hours a week, kind of after the first year. And then I did that for about six months before going back full time and I think it’s really difficult ‘cause people at work see you and you look normal, right? Like my smile is still my smile and I had enough energy. But, you don’t have any energy to do anything else, you know? It takes everything you have to get up in the morning, forget taking a shower, right? Just getting yourself ready, taking all of your meds, it takes two and a half hours to do your medications.
And then you’ve got to go to the office and be on and awake and social and not come across as a cranky angry person. And then you go home and you’re completely exhausted, you’ve got no energy and no desire to do anything but lay down and rest ‘cause your whole body hurts. It’s challenging to get to work every single day. And I’m not sick enough to be on disability, right? Like I can work. So, you know, I get up and I go to work, but everything else suffers. I have no life outside of the office. And so you have to be really smart about what you take on and what you don’t take on and you have to learn to say, “No,” and understand what something is going to cost you in terms of energy.
There’s no magic pill that makes the fatigue better. I mean, the fatigue is a combination of toxicity and bacteria and all this crazy stuff going on in your body. And you just have to be diligent about taking your medication and just commit to getting better. There’s no-there’s no easy way around the fatigue. As an active person, you feel like you’re being lazy. And I had an acupuncturist who said to me, “You’re not being lazy, it’s active healing.” And so, there’s moments where I have to think, “Okay, I’m not being lazy, this is active healing, I’m just gonna take the day on the couch and be nice to myself about it, be kind.”
More recently I have been struggling with more muscle pain. It feels like my skin is on fire sometimes. And for years going through treatment, like my clothes hurt my body. I couldn’t wear anything scratchy; I had to wear really soft clothing. Sometimes wearing a bra hurt. My-even my boyfriend couldn’t touch my back, he couldn’t touch my skin. He would have to ask me, you know, “Is it it okay?” Lyme doesn’t come on its own. When a tick bites you, you get Lyme plus some number of co-infections and you can’t treat all of them at once. And so the symptoms change over time because you’ll target one co-infection and the symptoms for that are hot flashes and sweating and muscle achiness. So, am I dealing with symptoms or am I dealing with toxicity from the die off from the treatment? And it becomes clear over time, as you treat things and you just sort of manage them as they go.
I’ve learned over the years to listen to my doctor and do exactly what he says because every time I’ve gone off protocol or off reservation it’s never worked out well for me. [LAUGH] So, you know, ramp up the detoxing agents, take a salt bath and lay down is [LAUGH] the best answer. [LAUGH] I think I was really fortunate to find my doctor and he made some pretty good referrals along the way. M-I found a doctor in Nevada who has an Ozone clinic, through him I found a fantastic biologic dentist who understands Lyme disease. He had some good referrals. I found a great acupuncturist along the way. You build not only your system of care takers around you, but you build your medical team and you listen to what they say. If I didn’t have my Lyme doctor I would not be here today.
Oh, God the financial impact on all of this. The first year, when I was on disability, I was fortunate enough to keep my job. I was working for a big corporation. I spent 30,000 dollars out of pocket, you know? And this is someone who’s CDC positive and that’s rare. So, they covered my six weeks of Doxycycline, but beyond that everything is paid for out of pocket. All the tinctures, the acupuncture appointments, none of that is covered. That’s definitely one of-one of the harder things. I could have a house [LAUGH] with the amount of money that I’ve sunk into treatment. But, you know, if you want good medical care you have to pay for it. I really believe my doctor is great and he’s worth every dollar I pay for him.
The social impact of Lyme, it’s hard to talk about the social impact, I think because I’m just now getting my social life back, it decimated my social life. You think that you have good friends in your life, and you do, but I think a lot of times when people are healthy they don’t really know how to approach you and they feel guilty inviting you to events that you can’t make it to so then they don’t invite you. And so, you feel like people have forgotten about you. Now that I’m coming out of it on the other side, I understand that a little bit more. I think while I was going through it, it was really tough. But, you know, I have people that have stood by my side and been there and showed up even when I couldn’t get out of bed to spend time with them.
It’s hard, you have to rebuild your social circle and you’re a different person on the other side of it. I’m not the same person I was three years ago. And that’s hard because as you’re rebuilding some of those friendships that you had just aren’t the same, and that’s okay. But, you have to be able to let go of that and find people in your life that support who you are now and the new journey that you’re on and the new path that you’re on. I’ve met a lot of great people along the way. I’ve-but it’s different, my social life is different now than it was before.
If I could say one thing to every newly Lyme diagnosed patient, it’s-do not go to your doctor’s appointments by yourself. Your brain fog is probably worse than you think it is. There’s gonna be so much information coming at you that you don’t understand that you’ve got to track, the medication protocols, all of that, you’ve got to have somebody with you in those appointments. If I didn’t have my boyfriend and my aunt or a family member come with me… they’re talking to you and the information is just bouncing off, you’re not absorbing it. They took notes for me for every single medication that I had to take; they drove me to and from appointments. If I didn’t have my caregivers, I don’t know what I would’ve done. I wouldn’t have gotten through the doctor’s appointments; I wouldn’t have gotten the medication straight. My boyfriend is a saint. He literally helped me get in and out of bed.
Somebody just to go grocery shopping for you, to bring the food home. You can’t drive some days you’re so sick. So, having a team of caregivers, if you can find one person, great, if you can spread it across multiple people, it’s even better. It’s really, really important to have a circle of people surrounding you, you can’t do it alone. Listen to your doctor and do not listen to all of the advice on the internet. Everybody has an opinion, everybody has a recommendation and what I say to most people is, “There is no cookie cutter answer to your treatment.” Your genetics are different, the amount of damage that’s been done to your system is different, the number of co-infections that you have is different than everyone else. So, what worked for one person, that worked for another person may not work for you.
Some people do great on oral Doxycycline, some people need a year of IV antibiotics. Other people can do completely natural treatment. So, just be patient, understand that the road is not always linear and just be nice to yourself. It’s hard when you get into that deep, dark place of isolation and not feeling good, but there is light at the end of the tunnel, you know? Just listen to what your health care practitioners are telling you. If you get to a place where you feel like you’re not getting better, maybe you’re missing something. Maybe your Lyme literate doctor is missing something, get a second opinion. If you’ve been doing the same exact thing for a year and a half and nothing has changed, chances are something else is going on. Push for it, advocate for yourself and just keep pushing, don’t give up; there’s hope.