Aimee is 30 years old, a mother to a two-year old son and married to the love of her life for four years. Before she got sick she lived a very active life, enjoying time with her friends and family and being active outdoors, hiking and exercising. At 20 years old her health took a turn for the worse, beginning with horrible insomnia that turned into night terrors and extreme fatigue. She developed neuropathy and joint pain. Over the course of the next few years she was misdiagnosed with MS, fibromyalgia and rheumatoid arthritis. As a healthcare specialist, she finally turned to a doctor she worked with at the hospital. He suggested she see a naturopathic doctor who tested her and diagnosed her with late stage Lyme disease. She tested positive for a number of co-infections. Her treatment phase was difficult and presented many complications. She is a believer in combining western medicine with a holistic approach. Aimee talks about the pressures Lyme disease put on her financially as well as socially. She is lucky to have had an understanding and helpful husband as her key caregiver. Today, for the first time in a very long time, Aimee can see her life through positive eyes. She is changing her healthcare to specifically work with patients that are going through the same Lyme disease journey she did!
My name is Aimee and I am 30 years old. I have been married for four years to the love of my life. We’ve known each other since we were kids and we have a beautiful baby boy who is two years old and he is just the best thing in my world. I was diagnosed with Lyme Disease, Babesia and Bartonella about a year and a half ago. Before my diagnosis, life was good. You know, enjoyed spending a lot of quality family time with my mom and dad, sister, hanging out with my friends, hiking and exercising. I remembered distinctly when I got bit by a tick because I had ended up in the urgent care with a bite. The tick was not attached at the time, but I had, uh, just a ring around the inside of my leg and a really nasty looking bite. I felt like I had the flu. I had a really high fever and I had let them know that I had tick exposure and the doctor said “No, this isn’t a tick. We don’t see that here on the West Coast. This looks more like a Brown Recluse bite.” And I said “Are you sure? Should I be tested for this?” And he said “Oh, no. This is definitely a Brown Recluse bite.” So, he treated me with steroids at the time, which we now know is something that a tick bite would thrive off because it weakens your immune system and I really just started not quite feeling like myself. It started off with having really bad insomnia and then turned into where I was extremely fatigued, um, and having night terrors. You get into a panic state of sleep where something scary is happening, whether that be, like, a clown chasing you or just-it’s something very random. The insomnia nights bothered me less than sleeping because I was so scared I was going to have one of those nightmares. I began to develop Neuropathy in my feet to the point where I was always a running joke at the hospital that I could run around in high heels all day because I couldn’t feel my feet, which kind of started causing me to have a little bit of anxiety because I had always just been so active that I started to feel like slowly, but surely that was being taken away from me. I was turning into somebody that I didn’t know.
So, I initially got told “Oh, well, you’re, you know, probably not getting enough sleep. You have a stressful jobs. You’re used to being really active. Maybe you’re just kind of starting to slow down.” Which at the time, for me, I was still in my 20s and thought that that was crazy that I should already be slowing down. After seeing my primary care doctor a few times and saying “You know, this just isn’t making sense. Things are getting worse.” I was developing joint pain. I felt like I had the flu every day. I started having problems with, like, my nails falling off. I was gaining weight and losing weight, but nothing as far as my diet was changing. My vision started to change. I was getting shaky feelings, getting faint feelings. I had actually passed out a few times. I started seeing just a cycle of different specialists. I saw anyone that I could get my hands on to take a look at my chart. In the process, got diagnosed with Fibromyalgia, Rheumatoid Arthritis, Peripheral Nerve Damage, chronic migraines, night terrors. I got diagnosed with MS. I got diagnosed with Lupus. I got diagnosed with Chronic Fatigue Syndrome. So, at a certain point, I felt like I had just hit a wall and was at wits end. Being in my, you know, late 20s saying “Okay, there’s no way I have 10 diagnosises. Something is wrong. We’re, like, missing the big picture.” Nine years into this journey, I had reached out to a surgeon that I worked with who was somebody that I had a lot of respect for and just, you know, begged for help because I was at a loss for what was actually going on with me. And at that point, he had referred me to a Naturopathic to take a look at my chart and that was when I finally got to the point where I really started getting some answers. As soon as I walked into the Naturopathic, I sat down and she let me know right away “You have Lyme Disease.” So, my initial part of my treatment protocol until I could get to somebody who specifically worked with Lyme patients was to start antibiotics and some supplements. I had also test positive for Babesia, so they had started me on a very small antiparasitic because my heart was having such bad issues at the time. I was told about the fact that there could be herxing involved once I started this. I could get a fever and chills and achy bones and headaches and vomiting and to me, I’m sitting here thinking “Well, I already have all of these.” I couldn’t believe that the pain could actually in fact get worse from taking an antibiotic.
So, I started taking oral antibiotics and those just became very tough on my body in general. Lifting my head off my pillow was ultimately painful. Living with fevers every day. Nothing I did made me feel comfortable. I ultimately ended up switching over to doing IV infusion treatments mixed with a combination of different vitamins and things that my body truly, severely lacking at that time. I got to the point where I was really kind of starting to see progress with these IV infusions, um, that I was able to start what I call “The Miracle Drug”, which was the-a form of antibiotic that comes in an injection. When I was doing an-an-an injection myself three times a week, but the herxing from that antibiotic in particular was far less than any treatment, any other antibiotic that I had tried. I herx really, which has been a struggle throughout my treatment. I know I have to do it. I know I have to get through it, but it was also very difficult and that was my turning point. When I really started to kind of feel like my old self a little bit again. Not every day, not all day, but parts of me were coming back and that was a huge moment for me. Detoxification was something that was mentioned to me pretty much immediately as soon as I started my treatment for Lyme. I didn’t think it was as big of a deal at first, but then quickly realized when I herxed as bad as I did how big of a part of a treatment that this actually was. I got a little cycle machine and I would just kind of do what my body was able to do at that time. I did a lot of Epsom salt baths and I noticed out of everything, I would say by far, that helped me the most. I also did seaweed baths and I noticed that those helped me quite a bit. I changed my whole household cleaning products, like, everything just so that nothing toxic was around. Something that my Naturopathic had mentioned to me was doing some research on the whole 30 diet, which was initially made for patients doing chemotherapy. It talks about cutting out sugars and particular grains and wheats. It was about eating clean, about sticking away from things that were going to make the inflammatory response in my body get really triggered. And for me, that made a huge difference as far as my gut and how I was feeling. I was getting massage and going to a Chiropractor to help with some of my shoulder and head pain. I would do different oils and, like, a humidifier in my room to kind of breathe in for energy or my headaches or whatever it was that was bothering me. Chronic fatigue, for me, was a major problem.
I started giving myself B12 shots, um, to try and just get a little bit more energy, but those were hit and miss on whether or not they worked. But, the only way I can describe it is I would start work at eight o’clock in the morning and I would ask for a 10:30 lunch so I could go and sleep in my car for an hour so that I could come back in and function for the rest of the day at work. It was debilitating. When I would get home at night, I was in the shower and in bed within 15 minutes of walking in the door and I’d either pass out in, like, the heaviest sleep, I’d have a night terror, or I would be suddenly awake all night long. For my joint and muscle pain, I would wear heat packs when I was at work to kind of help relieve pain and I would take ibuprofen like it was going out of style because I was just so miserable and so swollen by the end of the day, every one of my joints felt like the peak of what a flu feels like for somebody. I threw myself into work when my pain got really bad. I felt like I needed a distraction, but the second work was over and I was driving home, I would have a crash and burn moment when I realized just how miserable I actually was and I could not get home quick enough. I had always had brain fog. I was always teased at as like “Oh, it’s just-she’s having a blonde moment.” But, for me, inside my head, I would think “No, I’m actually, like, having a moment, like, I don’t remember that” or “I really can’t think of the word”. But, once I started treatment, it actually got really bad to the point where I, physically, had a hard time talking and that went on for months and I would sit and cry because I could not get words out or I would stutter. My speech was slow. I think that was probably one of the hardest things for the people around me in my life to see. I was so self-conscious that I would not let anybody come around me because it was not who I was. I could face time my mom who didn’t live here and I could see her tearing up. My husband would tear up, you know, trying to have a conversation with me. Dealing with as many symptoms that come along with Lyme disease and the co-infections that come with it sometimes is a full-time job. It is… something that will make or break you. I have a two year old son, so giving up wasn’t an option for me. Had I not had my son, I probably, realistically, I would have probably gone in the other direction at points because it was just-it was really hard. I think there’s a lot of frustration with “Why is every part of my body breaking down on me?”
You know, and I’ve sat and thought, like “How can a little bug bite make somebody so sick?” I went to counseling and I found that to be very helpful. It was a safe place for me to express how I was feeling. I could share and I could also get feedback on, maybe, different techniques that I could try to feel better. I kind of almost had to, like, forgive myself and just realize, you know, it is a part of me now, so what can I do moving forward to make it better? And then, I started to get a lot of gratification out of helping people and sharing my story on social media. And I started just getting a lot of love and a lot of support from people that I didn’t even know that they were on this journey or a family member was on this journey. That’s what-was my turning point, for me. I’ve got people that are doing the same thing as me and I’ve got to put a smile on my face and I’m going to make it through this. The financial impact of Lyme Disease has been a tremendous one. I spent every dollar that I have ever worked hard to save in my life to be financially stable at a young age on treatments that were not covered by insurance. I had to sell my first house that I bought very proudly from working hard so that I could cover treatment costs. I’ve taken money from, like, my 401K to, you know, pay for treatments. When you’re given the choice of “I can make you feel better, but it’s going to cost this amount” or “Don’t do anything and just keep letting it get worse”. What are you supposed to do? Moving my son and my husband to sell my house so that I can pay for my treatments, I mean, that’s just-there aren’t words to describe that. I am a very bubbly, outgoing, outspoken person. So, when I was at home and getting IV treatments three times a week, you know, and then the car six hours a day to get to the treatments and get home, I lost my social aspect. It was hard because I felt like a lot of the people in my life didn’t take the time to ask questions or educate themselves about what my husband and I were going through and that became something that was not only hard on myself, but hard on my husband. I felt guilty for that. We’re just now starting to go back out and do little things here or there, but it’s not like what it used to be at. My life has to be a little bit slower paced now and that just is the reality and it will set me back a week to go out for a day. Being a mom to a two year old while dealing with all of this was… difficult. I never wanted him to know I was sick. He saw me get a shot one time and he bawled his eyes out.
And so, I’ve always thrown a smile on my face, even in, like, the darkest moments of, like, not feeling good because I just didn’t want him to know. I sent him to daycare at a really young age, even though I was home or getting my treatments just because I didn’t want him to be around that and I didn’t want that to become his life because it was mine. It was about getting unique with my situation and finding ways that my son could still develop correctly and have fun and get the things that he needed out of life and find a way to be a good mom. But, I wanted him to still have a good childhood and not remember mama was being sick. My husband, he was just always by my side and very supportive, even though I could tell, internally, he was really struggling bad. My very best friend, Vanessa, who’s been my childhood best friend was there for me day or night. She put a smile on my face and she would make sure that, like, I got a smile somehow every day. And my mom, she lives out of state, but she made sure and face timed me every single day to see how I was feeling and was doing research and, you know, just really tried to involve herself every way she could. Anytime I’d go to the hospital, she made sure to take time off of work to come down and help me with my son. The pressure that it’s put everyone under, I wish I could take away from them. Because I’ve seen my mom cry tears at my house privately. I’ve seen my husband cry when I’ve been in the hospital. I feel like it’s taken a lot from them as well too. My husband, I commend him for being a strong enough man to, you know, stay and want to take care of me. Our life has changed dramatically and that’s no one else’s fault. But, I will never be able to say that I love him enough for everything that he’s done for me. I, for the first time in a long time, have felt very hopeful. I can see the future through positive eyes and not the negative ones that I once saw it through. I have felt like I’m okay with having gone through my experience because I feel as though it’s my calling to help other get through theirs. I now want to do a little bit of re-training and re-structuring with my career so that I can specifically work with patients going through what I’ve been through. I want to be their “Aha” moment. I want to be their doctor that they finally come and see and they get an answer and they, you know, get help from. Working towards is being a Nurse Practitioner with a really good group of doctors and Naturopathic doctors so that I can help somebody that’s sitting in my shoes.
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