Hi everyone! This episode was a rough rundown of my journey thus far with my Lyme disease. I know I forgot a few things (and mixed up some numbers) but hey, it's been nine years what do you expect? To learn more about my story, check out the previous blog posts and our instagram for some pictures and videos.
Below are some helpful links on Lyme disease and the episode transcript.
*This is not a perfectly edited transcript*
What is up everybody welcome to the It Goes Without Saying Podcast. It is me Cass, your host here for Episode One: my story. So as the world's grandmother, Julie Andrews once said, "Let's start at the very beginning." So I was always a sick little kid. I had strep throat when I was in elementary school for like six months at a time had to have my tonsils removed. In middle school. I was always walking around in boots and cast because I had tendinitis and sprained ankles and all kinds of things. Flash forward to May of my freshman year of high school, I had just come off of my softball season, I was always an active kid, always playing softball, basketball, any other sports hanging out with my friends. And that May I started getting a headache. And this headache did not go away for about seven years. I can remember waking up one day in tears, telling my mom that it hurt me to put my head on the pillow. I would be wanting to just lay there and rip my hair out of my head because I thought my hair hurt my body. I physically couldn't actually put my hair up because it hurt to have my hair in a ponytail.
So that is where our story began with Lyme disease. But we didn't know it was Lyme at the time. No, no, no. It took us nine months to find out what was really going on. So the headache began. My mom took me to the doctor, they sent me to a neurologist sent me to another neurologist had a bunch of MRIs, CAT scans, they told me that I was depressed. We didn't accept it because my mom is a superhero. And so she kept taking me to other doctors trying to find out what was going on with me. I called her Dr. Google and joked about it. But in hindsight, I am so grateful that she did not give up this fight for me. I went to an ear, nose and throat doctor, they said that there was nothing going on in there and he said, hey, let's go to an orthopedist and at the orthopedist. They said that I had arthritis all over my scans. Remember, I was 14 years old. So we got home. My mom was like, What the heck, how does a 14 year old have arthritis. They sent me to an orthopedic doctor for kids. And he told us that I had this autoimmune disease called Ankylosing Spondylitis, which then led us to Georgetown Hospital in DC. We live in Maryland, not that far of a drive. So we thought we were lucky.
In the meantime, I was being pumped full of pills, pumped full of pain medicines pump full of all kinds of other medicines. I don't even remember what they all were or what they were for. But as we were going through this nine month journey, more symptoms besides the headache began, I started having stiffness in my neck. I could not turn my head to the side, I started getting pain in my knees, my knees would swell up and I couldn't walk sometimes. But the most debilitating symptom was the fatigue. I would literally sleep for about 20 hours a day sometimes. And when I woke up, I was exhausted. I could not do anything. I started missing out on school, I was missing out on hanging out with friends because I physically could not get out of my bed. I was so exhausted. So my mom took me to another neurologist In the meantime, while we were waiting to go to Georgetown, because if you've ever been to a big hospital, they have long wait lists. And this doctor said that I had chronic fatigue syndrome. My mom was so excited. She was like "oh my gosh, we finally have an answer." And then the tremors started.
My hands would shake uncontrollably. It looked as if I had Parkinson's disease, which ironically, my grandmother had Parkinson's disease and got diagnosed at the same time. So we would both just be sitting there shaking. I also started getting heart palpitations, I would be laying down and my heart rate would skyrocket like over 100 for no apparent reason whatsoever, it would get a little bit hard to breathe at the same time to where I would walk up the steps and be out of breath. I would have to pause and catch my breath. Remember, I am a healthy ish 14 year old girl we thought. While we were still waiting to get into Georgetown I had a break down one day. I was just so upset because I was in so much pain. I just didn't understand why this was happening to me why my summer was being destroyed and I wasn't able to hang out with friends and so my parents have a friend who worked as an ER doctor and she got us in to run a whole bunch of tests. So here I am in the ER and I'm having my blood drawn like crazy and they come in and decide to do a spinal tap so there I am lying on my side they had my sister and my dad leave the room and they closed the door and told them that I was probably going to scream and cry and here they come in with the needle and the nurses talking to me and my little Cassidy self looks at this woman and says "so tell me what really goes on in the on call rooms? Is it like Grey's Anatomy in here ?"and I didn't even cry. So that's my little haha sucker moment. Just kidding but I had the spinal tap done. And guess what they found? Absolutely nothing.
So finally it comes around to the time to go to Georgetown, this doctor starts talking about this ankylosing spondylitis. And in the meantime, my mom, Dr. Google had done a ton of research. And it turns out to find out definitively if you have this horrible autoimmune disease, there is a MRI they can do of your sacroiliac joint in your lower back area. So when I had had x rays done, they told me that that was fused together. And that is how they know if you have this disease. So in order to find out for sure, they do an MRI, but for some reason, the doctor at Georgetown just wanted to keep pumping me with pills and didn't want to do the definitive test. So my mom had to basically beg the doctor to give me this test. And what do you know, I get the test done. And I do not have my SI joint fused together. So I do not have Ankylosing Spondylitis. When we got that result back, the doctor marked off on my paperwork, why I was there as Fibromyalgia. So my mom had been doing her research once again before we went here, because as we looked more at the Ankylosing Spondylitis and the chronic fatigue syndrome, we just realized I did not fit into those categories. There was always "Oh, why does I have this symptom?" Or "that doesn't really say that this can cause that" there was always something else out there that I just didn't fit into. So when we left there, she looked at me and said, "Do you see this?" And I said, "What?" And she said "they said you have fibromyalgia? I think you have Lyme disease."
So being in rural Maryland, if you will, I have known Lyme disease my whole life. I have heard of people who have had it. I just didn't know Lyme disease. I had a cousin who had it when we were younger, and she got over it right away. So I was like, oh, Lyme disease, okay, let's get me those meds. I'll be back to myself in just a few weeks. I was very, very wrong. So once again, our amazing friend at the ER got me in, she ran some tests on me. And she herself actually has chronic Lyme disease. So she knew what was going on. She started me on my treatment plan and sent us to a Lyme literate doctor. So I'm going to do a whole episode on Lyme disease and the Lyme controversy. But a quick little rundown. The mainstream medical world says there's no such thing as chronic Lyme disease. And so we have to go to get this treatment done at these people called Lyme literate doctors and luckily being in the DMV area. That's DC, Maryland and Virginia. For those of you that don't know, we actually have some of the best Lyme doctors right in our area. So it was really lucky to get into this first doctor.
Here I am once again. Now it is October of 2012. I am a sophomore in high school, and I walk in and this doctor we're going to call him doctor one starts just telling me all these horrible things about Lyme disease. He actually sends me my mom home with homework to watch this movie, which I will probably mention a million times on this podcast, but listen to me, go watch it. It's on Amazon. It's called Under Our Skin. It is a documentary following some people with chronic Lyme and it really just explains Lyme and the controversy in such a great way. So my mom and I went home, we watched this movie and I just remember feeling this sense of utter, holy shit. This is going to be my life and I was scared. So he gives me a chart with all these medications I have to start taking and here I am at 14 years old and we had to go to Rite Aid and get me the giant pillbox because the normal seven day pillbox didn't fit. So now I had a breakfast lunch afternoon and evening pillbox all seven days. And throughout these last nine years, I will tell you that thing has been filled to the top so I started taking all these medicines. I am missing so much school, so much school, and I am a straight A student. I love school actually, I am a nerd. I love learning. I think it's super awesome. And I'm missing it. I had to stop doing volleyball which I had done my freshman year and it's sophomore year here towards the Christmas time and everything and I am just not getting better. At this point. I had been on medicine for about three months now and we just haven't seen much improvement. So my mom decides that we are going to stop seeing doctor one and move on to doctor to who was a homeopathic doctor.
We go to the homeopathic doctor dropped a whopping $1,100 on the first appointment. I do that for about another three months with absolutely no improvement whatsoever. At this point, literally I don't know if I even made it to school for the third quarter, it was that bad. I was just out of school so much and that's when the depression really started to sink in for the first time. Spring of 2013. I was just about to have softball try out. And for the first time that I could remember in my life, I was not going to be playing softball. And that is when I remember just lying in my room in the dark, because the lights would hurt my eyes, crying into my body pillow. His name was Fred, shout out to Fred and watching Nicholas Sparks movies all the time, because I just was crying and Nicholas Sparks makes you cry. And that is how I spent my sophomore year, I was so sick at times that my dad would literally have to come into my room and pull me out of my bed. Because I could not get up, my sister would have to wash my hair and braid my hair because my arms hurt so bad and I was in so much pain and just so fatigued that I could not do it. The best part though, was that when I would go to school, I would start getting tremors. It was like every day or on a certain time my body was like "tremor time" and these kids in my class we made it a game like who can stop Cassidy from shaking. And people have to squeeze my hands and stuff like that. So I became the weird girl who shakes and hey, let's make her not shake. That was my sophomore year of high school experience.
So from here ,in about I want to say March of 2013, I told my mom I was done with the homeopathics. I was not getting any better, and I was sick and tired of this. So we found another doctor. And this guy was a regular primary care doctor but he knew a lot about Lyme, we heard he also took insurance. So we were in for it. And at this point, I was just so desperate that we were like go for it. Whatever you want to do, we will try I just want to get better. So he was on more antibiotics had a ton of bloodwork done and everything. And I saw some improvement here. But flash forward a couple more months, and I started getting more neurological symptoms. So neurological symptoms, let me explain. I would have some memory issues. So like, I'd be in the middle of conversation. And I would pause mid sentence and not remember what I was just talking about. Or this is the best one I was in the shower, I would forget that I had already shampooed my hair and I would shampoo my hair like three times. So at least my hair was clean, but not very good for my brain. So we started having some concerns about that. But the real issue didn't happen until one day I was with my mom and sister and we were clothes shopping, and my pants fell down when I was trying on a pair of jeans. And my sister started freaking out. She said, "What is that? What is that on your butt?" I had what we call my tiger stripes all across my butt. So my mom was like, What the heck is that. So they look like stretch marks, but they're in places where stretch marks wouldn't be in they are red and raised. And they actually get kind of painful. So we went to the doctor and we showed him the picture. And he literally while we were sitting there like googled it and we came to find out that that is called Bartonnella.
So not only can you get Lyme disease from ticks, but there are a bunch of other tick borne illnesses that ticks can give you—one of them being Bartonella. So before when I mentioned that I had the tremors and the heart palpitations, we found out that that is actually Babesia another tick borne illness causing that. So now I had Lyme, Babesia and this is now bartonella. Along with Bartonella can come more neurological symptoms that I talked about earlier. So doctor number four was not really comfortable treating the neurological symptoms because he was not a Lyme literate doctor. So he actually helped us find a Lyme literate doctor and passed us off to doctor number five. So doctor number five I was here from I want to say fall of 2013 through fall of 2015. So about two years here, and this place was pretty awesome. My favorite part about this doctor was they had a symptom questionnaire. So before every time I went for an appointment, I had to go and mark off my symptoms on a scale and it would tally it up at the end. So like the higher the number, the worse off you are doing. So sometimes I get up there with like sixty or something. By the time I left this doctor, I was at a three.
At doctor number five, we were doing more antibiotics and hardcore antibiotics but we would kind of titer them off. So I'd be on one for like every other day in between that we do a different one because we didn't want my body to get too used to certain antibiotics. This is really when the stomach issues began. So about a year into my treatment. I started being gluten free. We had heard from a lot of people that you need to be gluten free with Lyme. You have to be sugar free, dairy free all these things. But once again, remember, I am a kid still. I am 15 years old. I like to eat pizza with my friends when we hang out and it's rare that we do get to hang out so I want to have the pizza with them. So I was really really hesitant to do the gluten free so I was off and on with it. But it wasn't until I got to doctor five and she looked me in the face and said "when you eat gluten, you are feeding the bacteria. So the Lyme that we are trying to kill you just keep giving it more. So there's no point in taking antibiotics if you're going to keep eating the gluten to feed it back up." So that's what turned the switch and I went fully gluten free. And I have not looked back since.
But alas, the stomach issues began. So I started having more pain, I would get mouth sores as well. So I had a lot of yeast issues going on. And we went through this for a long time, I started feeling a little bit better. In the summer of 2014. Right before my senior year of high school, I think I was feeling pretty good. I had been able to nanny my cousin's all summer, I got my license, I still would have the fatigue. That was my biggest symptom so my senior year of high school, I also had an abbreviated schedule. So we made it so I actually didn't have to go into school until I think like 10:30. But there was still days when I physically couldn't make it to school, my dad would have to, once again wake me up. And I would say, "Nope, it's not gonna happen today. I can't get out of bed." And I would have to miss school. But my senior year was definitely better than the previous years of high school, Lyme wise, until the winter of my senior year.
So at the beginning of December in 2014, I was just at a plateau, we had been doing these medicines for so long, and I just wasn't feeling any different. And I felt like no matter what we did, I couldn't get over the hump. I was just stuck. Nothing was getting me there. And at this point, I had been pretty big in the Lyme community now for a few years. And I knew a lot of people who had had PICC lines. So it's a peripherally inserted central catheter, it is an IV that stays in you. So I was pushing for it. I was pushing for it, pushing for it, asking my mom asking the doctors, I just want the PICC line, I just knew in my gut that I would get this PICC line and that would be my key, I would get where I needed to be. So finally, I remember this one so vividly. In December, my family was at PF changs—Shout out to PF changs for being one of the only places that had gluten free back then. And my doctor called us my mom and I went on into the hallway, she said," We are scheduling your PICC line appointment for January. here we go." And I think I might have even like cried a little bit tears of joy because I just I had this feeling that this was going to be the ticket for me. So flash forward, January 18, 2015. I got Pete the PICC line. So me and Pete were together for about nine months. And in that nine month period, I had tremendous improvements. So remember that symptom questionnaire I was telling you about before within the first month of being on the IV, my numbers dropped by 20. By the end of my nine months, my number was a three and the only symptom was a little bit of fatigue. So that was with being on the IV for nine months with IV rocephin.
So August 2015, I am getting ready to go to college. I got into Salisbury University on the eastern shore in Maryland where my mom went, my sister went, my brother-in-law went my brother was there at the time, and I was going to get my Communications degree. And I felt good. So we called the Doctor she actually told us on the phone that she called in order to get my PICC line removed. And she was also leaving her practice. So it was kind of like a bittersweet moment, like I had reached the end kind of we felt of my journey. And so I was ready. I packed up my stuff. And I went to school. So for about the first two weeks of school, I was awesome. I was thriving. I was working out every day with my roommates loving my classes. And then I fell off a cliff I say, it was just all of a sudden and everything came tumbling down around me. I was super tired all the time again, I was so nauseous that literally the only thing I was eating was clementines and baked potatoes. Those were the only thing that I could eat. Every single weekend that first semester I went home, my brother would either drive me home, my dad would come and pick me up because I was just so sick that I couldn't do it at that point. The only thing that made me feel better was Epsom salt baths. And I didn't have a bath in the dorm room. So I literally would go home so I could take baths for the weekend feel well enough to be able to tackle the next week of classes. So it was not a good first semester.
During this time. I started seeing doctor number five. So this was my first time doing an integrative doctor. So here we did a mixture of antibiotics but also some herbal remedies as well. So I would also go in and have IV infusions, which was also why I went home every weekend. I would have doctor's appointments every Friday and I would get IV infusions of Glutathione and some other things to try to make me feel better. Flash forward to November of 2015 and it started getting so bad that I was unable to read. I was reading a book for school and I had to put the book down because I got so dizzy and lightheaded that I actually felt like I was going to faint. So I don't know about you guys or if you ever read books for school or gone to school, you kinda need to be able to read to go to school. So then I started panicking. Flash forward to December of 2015, I came home for the state championship football game for my high school, I was not feeling well, still having all these issues. And it was really, really cold that night, our family took a bus down with a bunch of our friends to the game. And on the way home on the bus, I was sitting next to my mom and I looked at her and I said, "Mom, I can't move my legs." She was really confused. I started crying. I said, "I can't move my arms." This was the first time that I ever got paralyzed. So here we are on this bus with a bunch of people from the town we grew up in with a bunch of people that we know and are friends with. And my brother-in-law literally had to carry me off the bus, I could not move my body. He got me home carried me to my mom's bed where we both just laid and cried for a couple hours. Because I was just everything was tumbling around me. This is when I officially looked at my mom and I told her, "I'm not going back to school, I can't do it." And she said, "Okay," so I did not finish my freshman year at Salisbury. I went back to pick up my dorm room and I had to take one exam. Luckily my teachers were really understanding. And so the other classes, they didn't even make me take my exam because I had such a high A in the class. So I packed up my dorm room said bye to my roommates. And December, I want to say 20th of 2015. I got Petunia, the PICC line.
So when all this was going on, my doctor was running some more tests. And we found out that while at Salisbury, I had been exposed to mold and the mold exposure, the mold toxicity is what brought me down the cliff. So I had to get another PICC line for us to aggressively treat the mold via the IV. I had Petunia for another nine months. And the most disheartening thing about that experience was I was expecting it to be like my first PICC line and it was not . It was not dropping 20 points on the symptom questionnaire in a month, it took me a long time to start feeling better again. And I never really got back to where I was after my first PICC line. So I took that whole spring semester off and just focused on trying to get better. And I was doing okay, I had signed up to start classes in the fall at our community college. And at the beginning of August, I still had Petunia the PICC and I just really wasn't feeling well. I was having this chest pain and felt like an elephant was sitting on my chest and it would get really hard to breathe sometimes. And I actually had to go to the ER a couple times because I was like I just can't breathe like I don't know what's going on and went there one time, they didn't find anything. They took my PICC line out said I had it in for too long. Two days later, I had to go back to the hospital, get the PICC line put back in because I was still doing treatment. And then a week after that I was back in the ER, and they told me that I had a blood clot and it had landed up in my left lung. So now it was called a Pulmonary Embolism. So at the ripe old age of I got to do math 20 16?17?. Yeah, at the ripe old age of 17, I had a blood clot and I was put on blood thinners The best part I was on the same blood thinners that my grandmother was taking. So we would have our Xarelto dates of taking our blood thinners every day.
The blood clot really threw me for a loop, I didn't really think it was going to affect me as much as it did. But I actually had to get a handicap sticker for my car because I couldn't walk long distances. So when I started at school because I still was able to begin at community college, I couldn't walk from the student parking lot to the classrooms without being out of breath and feeling exhausted and stuff because of the blood clot. So I had to get a handicap sticker to walk the distance and be okay, because I was still having troubles breathing and everything. So I was dealing with all that. And yet I still was able to start a community college I was part time only took two classes, but I was able to do it. So a little bit of progress. And we always celebrate the little things here. So after that I kind of stopped treatment for a little bit after have been in treatment for four years now. I was done. I was mentally done. I was emotionally done. Physically. I literally couldn't swallow any more pills, like my body would reject them. I would choke on them. I would spit them out. It was just a no we needed a break. So I took a break and I felt okay for a while.
Then in the Spring Summer of 2017. I started feeling a little bit sluggish again. So my mom said, you know what you had been attacking your body so much with all these pharmaceuticals. Let's start working on healing your body. So I went to this Wellness Center where we started doing some acupuncture, some chiropractors and really I started taking a whole bunch of multivitamins and things like that, and it actually helped—this chiropractor was actually the first time throughout this whole entire journey that I I did not have the headache. So shout out to that amazing. But everything came tumbling down in the fall of 2017.
Beginning of November 2017, I got paralyzed again. And this time, I got paralyzed every single day for the next nine months. So I was getting acupuncture at the time, that was the only form of treatment I had been doing. And it was helping, but I started with the paralysis. So I would feel this weakness come on, and it would be my left side. And when I say paralyzed, sometimes I would just not be able to move like my legs, sometimes it would be just my like, left leg and my left arm. And then sometimes it was my entire body so bad to the point that I could not open my mouth. I could not speak, I would literally talk to my mom like "mmm" that is how I would have to communicate with other people. I had to once again finish the semester of school online, I was not able to go in to take my exams, professors were amazing, gave them to me online finish that way had to take another semester off, and I could no longer drive. Coming home from school one day, I got paralyzed, driving on the way home. Luckily, I was able to like coast into my driveway, and my dad was there. And he had to put my car in park and carry me inside. And that is how I decided I was not going back to school. So I wasn't doing any treatment besides acupuncture. At this point, I wasn't seeing a Lyme doctor. And my mom was convinced that there was something neurological going on—deep down I knew it was Lyme But she was Dr. Google, I let her do this. So I started seeing some neurologists. And they did a bunch of tests, some painful ones, not painful ones, and they could not find anything. They said I had conversion disorder. And so conversion disorder is basically my understanding disclaimer, I am not a doctor. So this is how regular old Cassidy thinks this went down. Conversion disorder is when your body manifests your anxiety and your stress into a physical form because it just can't process it. So my body essentially, what they are saying was taking my anxiety and turning it into me just shutting down. So needless to say, I started going back to therapy. This was like my six therapist at this point, I had been seeing a therapist all throughout this journey off and on, but this one specifically worked in conversion disorder. So I finally talked my mom into going back to see a Lyme doctor.
So we decided to go with Dr. Six, who was also an integrative medicine doctor, she also did acupuncture herself. So I was getting the medicine and I was getting the acupuncture from the same person. This all started in around February 2018, I started showing some improvements. And I was actually not paralyzed anymore by the end of my time seeing her because she left her practice in June of 2018. So that summer in 2018, I was feeling awesome. That is my first time when I started working with the LEAF program, which I will be talking about in another podcast down the road. I was able to drive across the country. So going from being paralyzed on the way home from school in the winter of 2017 to driving across the country in the summer of 2018. But alas, after my summer of feeling good, you know it I started crashing again. I was just really tired, started showing some more symptoms. And we went back to the integrative doc. So we started treating here again, but Dr. Six was gone. And this is where I met Dr. Seven who I'm still with today. We were treating with herbs and Chinese medicine. I was getting acupuncture done, we do some Gua Sha and I love it. So I started feeling good. And I ended up not going there starting probably in like February of 2019 because I just was like, "Hey, I'm good. I don't need any medicine anymore. I think I'm there. I think I'm doing it." Then in the summer of 2019, my stomach issues were just really, really bad.
So I started with the stomach issues a couple years prior as I said, but my stomach issues were bloating—my stomach would bloat to looking to the point where when my sister was pregnant that I would sit next to her and our bellies look the same. I was constipated all of the time. I literally had an enema station set up in my bathroom where I would have to go and do enemas probably like once a week or every other week because it was the only way and I don't know if you've ever been super constipated before but that is painful. It hurts. Also, the toxins are just releasing into your body so that's not good for you so I was not doing the best. So we had a bunch of tests done and they of course could not find anything with my endoscopy and my colonoscopy at the ripe age of twenty and I had to do another test. So this time they had me swallow a camera super cool actually. Swallowed the camera then we got the footage back. Then inside my intestines, I had all of these they kind of look like scabs, just like all these red marks and stuff. And it turns out that I have what they were calling Pre-Crohns disease. So you can go from like Irritable Bowel Disease, and then Crohn's disease now is somewhere like past IBD. Not full blown Crohns yet, so we call it Pre-Crohns. And the way to treat that was an anti inflammatory medicine but for your gut. See, I had been on anti inflammatories before for the pain with the Arthritis and the lLyme, but they never worked. So it was not really hopeful for this anti inflammatory gut medicine but I took it. About two weeks later, I was in excruciating pain. I remember being in class one day, and I literally had to leave early because I was sweating because I was in so much pain. My stomach was bloated, I could barely walk my stomach hurt so bad. I called the doctor's office and they said, "Yeah, some people have an allergic reaction to this. And if you do, you're going to have an allergic reaction to all the medicines we try." So I was like, awesome, can you give me another option, and the only other option that they had was an antibiotics or steroids.
And at this point, I was very anti Western medicine. I just had a lot of negative things that happened to me when I was on antibiotics. And the last PICC line experience, the blood clot, I just had not felt as good as I did when I was on the integrative herbs and the Chinese medicine. So I was really scared that if I went on to these antibiotics, I was going to tumble down the hill again. And I really didn't want that. So I didn't do anything for a couple months, tried a whole bunch of new diets cut out a bunch of foods, but the pain was still there. The bloating was still there. So I bit the bullet. I took the antibiotics for a week. I did okay for the week that I was on them. And the week after that, I literally felt like I was dying. I flew down to South Carolina to see my best friend. And I was only there for a couple days. And the time I was there was spent laying in her bed shaking, freezing because I basically felt like I had a fever. And then I was sweating taking off everything. So I was sweating through everything I was running to her bathroom because I was dry heaving for hours. The only thing I could eat was an orange or gluten free pretzels. I literally was so tired that when my other friend from South Carolina came to see me I had a four hour conversation with them with my eyes closed because I was physically too tired to open my eyes. So when I got home, I was a mess. Mentally, I was just gone. I felt like this was like I didn't know what was happening. I thought I had been doing so well. And here I was literally just becoming an invalid again, it kind of felt like and I just didn't know where to go. So I called one of my Lyme friends up and she kind of talked me down and told me about this new diet that she had been trying. And so there's this Lyme doctor named Dr. Rawls, and he has this thing called the Dr. Rawls Lyme diet guide.
So basically, it's an elimination diet in a couple of phases. And phase one, you pretty much cut out everything except for a few things on this list. You're supposed to do that for a couple of months. And slowly you start integrating things back in. So I started January 2020 off on the Dr. Rawls diet, I and started seeing improvement. I was not having as much as the stabbing stomach pain, I was not having as much bloating however, I was still having the constipation. So one night in February of 2020, I was working I was a DJ, I was working at a bar and I got such bad stomach pain and stomach bloat that I literally could not stand up straight, I had to be hunched over that was the only way the pain was bearable. If you don't know the stomach bloat. And I know some of you do, but if you don't, the best way I can try to explain it is your skin feeling like it can't expand anymore, but yet it's trying to pull apart and there is a bowling ball just hanging in your stomach. And you just can't really do anything with it. And so I luckily like the people that I was working with there, they kind of knew me. So they helped me pack up my stuff I got in my car as soon as it was over, called my parents, cried the entire way home on the phone with my mom, my dad once again had to get me out of the car when I pulled home. They brought me upstairs, put on my essential oils and my heating pad and I cried. I could not go and nanny my nephew the next day, I just had to have a "Why me" day. And along this journey, I've had plenty of those. And we'll definitely be talking about why me days and another podcast. But this one was just a little different. I called up my friend again. And she told me about retraining your brain.
So basically, when you have a chronic illness, your body kind of gets stuck into the fight or flight response and you have to kind of maneuver your brain around to teach it that it's okay, we can rest, we can heal now and I wasn't there yet. So I started doing more research into this and that is when I started with my gratitude journey. I started practicing some more meditation, I got into yoga. And I also went back to Dr. Seven. By the time I got to see Dr. Seven, I remember getting on the table, and my mom was with me. And I was just in my sports bra because we were going to do some acupuncture. And they both just like looked at each other, looked at me and I was like, "what?!" and they were like, "Cassidy, you are, you're just skin and bones." And I was like what, and I hadn't realized that at the time but like I had dropped 20 pounds or so I was around 120. And that was not healthy. And it was pretty much just because I hadn't been eating for the last Lord, couple of years I couldn't eat, I went through phases of surviving off of the Clementine surviving off of brussel sprouts, it was always healthy things I guess I survived off of these homemade nut bars, I made protein shakes, but like I physically could not eat food. And I was still having the constipation issues.
So after some treatments, she determined that I was suffering from parasites and started me on a parasite protocol. Within a month of that I was feeling so much better. My bowel movements were regular, whoop, whoop, let me just say guys, the day that that happened, we actually celebrated like I called it my best friend, she was excited, my mom was excited. It's a big deal. So I was regular, I was starting to feel a little bit better then COVID hit. So I think we all know the COVID stuff. And while a lot of people really have been struggling with it, me, my health journey, I think I needed COVID. I think I needed this time to be able to focus on me and not have to worry about driving to school or like not being able to make my own food because now I have to make all of my food and just all these other little things that you don't even think about. I was able to be at home, comfortable hopping on the zoom call for a class with my heating pad attached and nobody can tell. I was able to practice my gratitude, get my exercise in started doing yoga, also keeping up with the parasite protocol. And I was really feeling really, really good. And I got a real job. I am now a certified fitness instructor. So just take a second, think about what I've told you so far, I went from being paralyzed, literally not able to hold my head up at times to now being a fitness instructor to like I literally help other people get strong and get into their fitness goals and things like that. Like it's just mind blowing.
When I kind of think about that, like that's where I came from and where I am now. I am now in my third semester at the University of Maryland right now, almost, almost getting my bachelor's degree, I will get there someday. And I've been doing pretty well. It's, it's weird for me to say it. And like I don't I don't like to say the R word. So the R word for me is remission. With Lyme, it never goes away. So you always have Lyme disease. It goes into remission, though. So you can have active Lyme, or you can have remission Lyme. But things can always bring it back out again. And like so for example, when I went away to Salisbury, I was in remission, I just have a really hard time saying it. But the mold caused the Lyme to become active again. So I think I have a hard time saying I'm in remission, because I'm afraid something's going to come back again. And I'm not saying I'm in remission, because I have not been feeling good again.
I started getting exhausted again, I'm just pretty much always tired. And my sleep is not good. I do not have restful sleep. I still am getting the bloating, but it's not the same bloating that I had before. So in this journey as well, I at one point started having menstrual issues. And I came to believe that I have Endometriosis. So we have not had the official diagnosis. We've just been treating it basically with birth control. But now the doctors are thinking we need to get the definitive diagnosis and see if that is what is causing a lot of my issues right now. And I get the shooting pain is still in the upper part of my stomach. The nausea still comes every once in a while. My bowel movements are still regular though. So it's been a year of that. Whoop, yeah, but all around just sometimes. Sometimes I feel blah. Sometimes I get the *breath* I can't breathe and that's my air hunger. So that's what I have to do. And it just sometimes I feel like I can't get the breath in. Sometimes I get the weakness, and I feel like I'm gonna get paralyzed, but it doesn't happen. The last time I was paralyzed was this past summer so it hasn't happened since then. That was me knocking on wood. That doesn't happen.
But yeah I am nowhere near where I was, at my lowest, I am pretty much going to say even though I'm having the issues that I am having, I am better than I have ever been. And I think a lot of that has to do with my mentality. I have grown so much on this journey. And I have learned so much about myself, about society, about the medical system, and I am grateful for my Lyme journey. Which is, people are probably like "How are you grateful? You were paralyzed? You missed out on so much of your life." But without this, I wouldn't be where I am today. I wouldn't be doing this podcast today. I wouldn't. I just I don't know where I would be, who I would be as a person. And I kind of, I kind of like myself. I don't know, what do you guys think? But that is where we are now. So I'm getting some tests done. We'll see what the next steps are. But we're here. This is where we are. This is me. This is real. This is me. I'm exactly where I'm supposed to be. Yeah. Oh, Camp Rock. Okay, but yeah, so that is the very condensed version of my story. And don't worry, we're gonna get into some of that a lot more as we move through.
Thanks for listening. I hope you guys learned a little bit about me. So that is my Lyme journey thus far. It's pretty crazy. I probably, definitely forgot a few things. I actually had to call my mom before because I literally could not remember some things about my story, and she had to fill in the blanks for me. So thanks, mom for helping me make this podcast. Shout out to Jesse Westerich for our theme song. Oh, yeah. Also shout out to my beautiful sister for letting me use the name "It goes without saying"— if you didn't know my sister is a wonderful author, Taylor Danae Colbert check her out on Amazon. And her first book was actually kind of about me and my life journey titled It Goes Without Saying so check it out. And make sure you guys are following us on our Instagram @igwspodcast. Check out our Facebook page. It goes without saying podcast and our website for some show notes. And before we go, I have decided that at the end of every episode, I'm going to give you guys a song recommendation. If you didn't know I am a part time DJ as well. My family owns entertainment company. I have been DJing since I was 15. I've got a few songs up my sleeve. So week one song is Hold On Forever by Rob Thomas. This one has been an anthem of mine over the past nine years. Rob's wife actually has chronic Lyme and he wrote this for her for her bad days to let her know that he is there and he is going to help her through the journey. And that is the message I want to give to you guys. I am here for you. We are in this together and we're going to hold on forever. So give the song a listen. Let me know what you think. And we will be back on episode number two. Bye.
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