Ali is a 30-year old woman that has lived with her boyfriend of a number of years. Ali struggled with “learning disabilities” from an early age. She was an out-going and athletic teenager, but school was always a challenge. She does not remember ever getting a tick bite. Her symptoms gradually increased during college to the point she had to take a semester off to figure out what was going on. Soon after, she was misdiagnosed with Lupus and began an eight-year medical journey receiving treatment that was antithetical to the treatment a Lyme disease patient should receive. Ali speaks to the emotional rollercoaster of her life-long medical journey… the pitfalls to her antibiotic treatments and determination to take the naturopathic path towards recovery. She emphasizes how difficult a path this journey has been financially and how she could not have made it without the support of her parents, siblings and boyfriend.
My name is Ali, I am 30 years old and I was diagnosed with Lyme in January of 2016. I’m one of three. I am very blessed to have two very happily married parents. They’ve been together for I think 36 years and have been amazing role models and what a strong marriage looks like. I am lucky to have found the love of my life, Alex, who has been a big piece in this journey. I played soccer, basketball, swimming, water polo, tennis. We did a lot of family activities and vacations. I never remember getting a tick bite. I remember growing up getting sick a little bit more frequently compared to my friends. My symptoms became more prevalent as I continued getting older. So, in middle school, I started developing some cognitive problems and in high school, I was diagnosed with unknown memory disability. I started developing anxiety and depression. I developed an eating disorder, which I believe is… part of the Lyme Disease. I had started freshman year at University of Oregon. I was starting to experience some pain in my joints. I was developing what they later identified as Raynaud’s Circulation Disease in my hands and my feet. There was clearly something that was off and something was not quite right. I ended up moving into my sorority house. A part of something that the Greek system does at Oregon is we go to Lake Shasta for Memorial Day weekend. On our way back up, I started feeling really sick. I came home, immediately went to bed and felt like I just had the worst hangover ever and that hangover just kind of continued for the next two or three weeks. I was sleeping at least 15 hours a day. I was not even able to do any type of school work. They did some blood tests and I got a call from the nurse saying “Hi, you have Lupus.” I had never even heard of Lupus before. I called my mom and she almost started crying and was really upset and it was at that point that I realized I have something serious here and we need to figure out what this actually is. So, immediately, we went into game-time mode. My dad drove up to pick me up from school.
We drove back down home and we had booked three different appointments with the top Rheumatologists and Autoimmune doctors in the area. All of them had come back with confirmations that yes, this is indeed Lupus. I immediately went on Prednisone, which is the exact opposite of what you want to take for Lyme Disease. One of the issues with an Autoimmune disease, especially with Lupus is it’s similar to Lyme in that it’s a clinical diagnosis and they look at your symptoms. And I continued to be on Prednisone over the course of the next eight years. My health became really predictable. My body would be able to function for about a month and then I would start feeling sick again and so, we go on another dose of Prednisone and then we’d start feeling better again and then sick again. So, just imagine kind of that repeating for the next eight years. Grieving wasn’t really an option and so I learned to deal with not feeling well and realizing “Okay, I’m still here. I need to make the best of this situation.” And so, I became a really good actor and I started just having to figure out how to live a normal life while still feeling really icky. I hid a lot of my symptoms. A lot of my friends didn’t realize that I was as sick as I was. In hindsight, I probably would have preferred to share a little bit more with them. My breaking point was when I went into my Rheumatologist that I had been seeing for eight years and he said “Okay, well, the only other option is to put you on Methotrexate, which is a form of chemotherapy.” And, I think I was 27 at the time and I left that doctor’s appointment feeling infuriated and just angry. I was seeing a therapist at that time because there’s a lot of emotional battles that you go through when you are-have a chronic illness. She offered up another alternative and said “Have you thought about doing functional medicine before?” And functional medicine is essentially viewing the body as a whole instead of just looking at symptoms. So, I made an appointment with a functional medicine doctor and I worked with him on changing up my diet, trying to make a couple of lifestyle changes and found immediate relief. I noticed that my hands were becoming more immobile. There was less pain that was going through my body. At that point, I completely kind of disregarded my Rheumatologist and was really set and committed on getting off of all of my drugs and starting to approach my health in a different way.
Then, I went and pursued a Naturopathic doctor who was helping me get off of all of my drugs that I had been on for eight years. I had to quit my job because I was so sick and had started to pursue a different career path. I was working, doing a part-time gig at a yoga studio and I was introduced to this woman who had Lupus for 20 years and found out that she was diagnosed with Lyme Disease and as she was telling me her story and her symptoms, it was like a weird switch happened where I no longer identified with Lupus and I completely identified with Lyme and the symptoms that she was explaining. I immediately went online, did a full, deep dive into Chronic Lyme Disease and became set on “I need to get tested for this.” Being tested for Lyme is very expensive, so I waited probably about three months until I approached my family about it. I was nervous to hear what they had to say and what they would think about it, but they were extremely supportive and, um, were like “Okay, let’s do this. Let’s get you tested.” I was a nervous wreck and, uh, very curious to hear what the diagnosis was going to be. I went in and he said “Well, good news is we have your results for the co-infections. Bad news is we have to do another test for Lyme Disease. It came back non-conclusive.” We’re like “Okay, let’s do this. Let’s get you tested.” It wasn’t positive, but it also wasn’t negative. And the way that my doctor explained it was a lot of the Lyme tests will test for a certain number of strains of Lyme and so, what I needed to do was do another test that had a different set of strains. So, once again, went back to the drawing board, took some blood out, got the test done a month later, came back and that’s when I got diagnosed with Lyme. The test results came back positive. When my doctor said “You have Lyme Disease”, I thought that I was going to feel a lot of anger, but I was really happy to finally have a concrete answer and it was a different type of relief than when I diagnosed with Lupus. It felt like “Okay, this makes sense.” So, the final diagnosis was I had Chronic Lyme Disease and a handful of other co-infections. A co-infection is essentially another infection that either exacerbates Lyme or Lyme exacerbates that. But, I had Mycoplasma Pneumonia, Chlamydia Pneumonia, Epstein-Barr Virus, HHV6. Those four I had actually contracted as a newborn. When I was born, my mom got Mono and that’s actually pretty common, apparently. And being the good mother that she was, she was listening to the doctors that said, you know, breastfeed.
So, I ended up contracting these infections and they just continued being left untreated. So, by the time that I had Lyme, my immune system was just completely shot and that’s something that a lot of Lyme patients suffer from is having a really large toxic load. I was seeing a Naturopathic doctor, but he was adamant about starting out with antibiotics, that this was the best route to go. And so, I had decided to go against my gut feeling and was like “Okay, let’s start out with the antibiotics.” I left that appointment with four different prescriptions for antibiotics. Two weeks later, I started developing a rash on my legs and this rash just continued to grow all over my body and get really angry and it was really red, really blistery. Over the next day, the rash continued to get worse and worse. It spread all over from my head to my toes, it was worsening. So, I then went to the hospital the next day and there I was admitted. So, I was diagnosed at that point with toxic overload, had IVs pumped and lots of fluids, huge doses of Prednisone. What we now know is that part of the problem was so many of the co-infections and the Lyme were living in my detox pathways and over the years had really clogged up. And so, when I was taking the antibiotics, they were doing their job in killing off the bacteria, but it was working so quickly that I wasn’t able to, um, detox fast enough and so, it caused a lot of chaos. So, leaving that hospital, uh, was a big “Aha” moment. That conventional medicine and conventional treatment for me was not the option and that was really the start of my natural and alternative treatment to Lyme. Biontology is a form of light therapy and essentially, it’s been proven that all of our cells and our DNA communicate through light. And the way I explain it is that ideally, in a healthy body, our light waves are very balanced and so our cells are able to communicate back and forth. When there’s an ailment, whether it’s Lyme or strep throat, it causes our light waves to be very chaotic and so our body isn’t able to communicate and heal itself. So, essentially what this therapy does is really gets to the root of the issue and correcting the light waves so that your body is able to heal itself. I immediately went in, had my first session and felt instantly a sense of relief. My family was really skeptical about that and so, we talked a lot about this and I decided to go see a doctor who was not only a Naturopath but also an MD and she had done a lot of work with different Lyme patients and a lot of work with various co-infections.
I booked an appointment with her, admittedly just thinking “Okay, I’m going to do this to make mom and dad happy.” But, she ended up being a really critical member of my team and her treatment, as well as the Biontology were completely synergistic. I was working a lot with her on the herbal side of things and she also wrote me a prescription for ozone therapy. Ozone therapy is essentially when they extract blood, your own blood, pump it with oxygen, pure oxygen and then put it back into your body. Oxygen is kind of like a super charge for your blood and for your body. Ozone, for me, was beneficial but I also found that my detox pathways were not in a great place for it and so my hair started falling out. I had skin rashes all over my body again and we realized that it was a little bit too intense for where my body was at that time. So, we pressed pause on doing those. Once I was in a better place to pick it back up, I started developing a passion for nutrition. My diet was strict, but at the same time, I felt so much better from it that I didn’t view it as a restrictive diet. It consisted mainly of healthy fats and really clean proteins and vegetables and I found that to be energizing. It helped with swelling. It helped with brain clarity. Using food and nutrition just laid the ground work for a really quick-in perspective, a really quick healing. One of the things that I did was I purchased this book, it’s called “Finding Freedom in Illness.” It goes through kind of all of the emotions and how you can heal from that and along the way, I think the biggest thing that I learned was I was finally challenging the doctors and part of my building my and part of who I learned to trust was the doctors that would challenge me back, that would answer my questions. The financial impact of Lyme is a real thing. I am still and probably will continue to be in debt for quite a while. My credit cards are maxed out and it is not a comfortable place to be. I feel fortunate that I still have a roof over my head. There’s a lot of Lyme families that have to sell their homes and whatnot to get treatment. It’s extremely expensive, no matter if you treat it conventionally with antibiotics or if you treat it alternatively. Naturally, I am an extrovert. I enjoy being around people. When I was diagnosed with Lyme, I became an introvert and was more comfortable being by myself than I was with other people. I think it is hard to explain that you’re constantly not feeling. I ended up having to say “No” to a lot of events. I missed a lot of weddings.
I missed a lot of bachelorette parties. You know, simple dinners with girlfriends. I would commit one minute and then would be feeling really icky the next minute and would have to say “Sorry, I can’t make it.” I lived in my apartment for a year. I didn’t see my friends for very long. In fact, my 30th birthday, I decided to have a big birthday party simply because I wanted to s-see all of my friends. I hadn’t seen them for a while. I found I was more comfortable being by myself while I was healing. I wish that I could clone my caregiver and give him to every single person that suffers from Lyme. He was very patient and he rode alongside with me. He wanted to genuinely take care of me and we fought this fight together because we knew that it was going to be possible for me to live a healthy life. I think that it was also important for him to have his own life. That was really important for me for him to understand that “Yes, I’m sick and yes I need you to take care of me, but I also really need you to have a life and continue living.” According to my doctors, I no longer have active Lyme in my system right now. So, I am living life with a whole new lens and a whole new perspective, which has been really exciting. It’s been a little scary. I am realizing what it feels like to be limitless and to make a decision one day and not have to think about the consequences that it will have. That’s really liberating and I didn’t really realize what that would feel like until I actually got to that point. I am so motivated to start helping other people and I want other people suffering from Lyme Disease or co-infections or chronic illness, autoimmune disease to know that good health is possible and to know that the fight is worth it and if something is not working, there might be an alternative for you to try. So, get curious. Start exploring other options that might be out there. I recently just graduated. Fortunately, my brain’s working again, so I was able to accelerate and I’m now a certified nutritional consultant and I just actually launched a-a consulting practice for nutrition and for Lyme Disease to help other people navigate Lyme and to help them sort through all of the controversy and all the different treatments. I’m really, really happy to say that what could have been a negative thing in my life turned out to be really positive and set me towards my passion and towards what I believe I’m meant to be doing.