My Lyme Story

I’m finally ready to share my Lyme story and my own personal experience with Lyme disease and chronic illness. I’ve avoided this for far too long. I’m ready to share in hopes that it may help anyone who’s struggling with Lyme, autoimmune conditions, or other chronic illness that they’re not alone, and help inform those who just can’t relate (or any of you who are just curious to learn a little more about me). I may forget a few details since it’s been quite a few years, but I’ll write everything I remember as accurately as possible. One thing I regret is not keeping a journal through this whole process, so if you’re reading this and have Lyme or are struggling with chronic illness, I suggest you keep a journal! Not just for your own sanity, but so you can look back and see how far you’ve come and maybe, just maybe you can even help someone else in the process.

This story is just my story. It may be long, but it all felt relevant. To the normal human it may not be so fascinating, but it’s not meant to be fascinating— it is just my reality and a huge part of my life I wanted to share in hopes of helping other people.

This is my own personal experience. This is not medical advice and should not be taken as so. I have seen many doctors, specialists, and healers and am just telling you my side of the story.

With Love,

Lily

… … …

It’s interesting to be at this point, sitting here writing about my experience with Lyme disease. I’m luckily at a point in my life where I feel like a completely different person. Sometimes it’s hard to even look back and think about how far I’ve come. Sometimes it’s even hard to think about that dark place filled with hopelessness, depression, frustration, exhaustion and more. I really can’t believe how far I’ve come. I know now that I ultimately went through this awful illness so I could help other people and it has led me to pursue a career in wellness where I can use all the knowledge I’ve gained to help others.

If you’re reading this and you’re in a dark place right now, I feel for you. I can’t even begin to understand your pain or fatigue or whatever symptoms you’re experiencing. Nobody can truly understand your own personal experience, but I will say that I understand it’s not fun. You may feel alone, but don’t loose hope. That’s the one key important thing I never fully lost—hope. Deep down I knew one day I would wake up feeling energetic again, no aches, no pains and clear-minded. I knew I would one day reach that other side I almost didn’t believe existed anymore and almost forgot what feeling normal felt like. I did have my hopeless, this will never end, days but I still pushed through and I can say I made it to the other side.

My story starts just after my college graduation and post spinal fusion surgery in June 2013. Prior to my spinal fusion surgery, I had been experiencing symptoms for several years to what I now believe were related to Lyme disease, but I didn’t think much of it. Plus, I was more focused on getting rid of my severe back pain I had for over 2 years. So yes, I had a spinal fusion, but that’s a story for another time. Two months after my spinal fusion surgery, I was experiencing a lot of burning in my stomach, and of course went to a gastroenterologist who did an endoscopy, claimed I had gastritis (inflammation of the stomach lining) most likely due to all the medications they had put me on following the surgery. Nothing really came of that and I kind of dealt with it and moved on with my life a bit (although still uncomfortable but tolerable). As a side note, I tend to have a very high pain tolerance.

Six months post surgery I was exhausted all the time and having terrible gut issues, Raynaud’s phenomena and started gaining a lot of weight, but figured hey I’m still recovering from surgery and needed more time to recover. Fast forward 3 months I moved to New York, and started noticing I was really fatigued and tired all the time and thought maybe I had mono. I knew now at this point something wasn’t right so I visited a doctor in New York who ran some tests. The results came back and she was concerned with my elevated ANA as well as a few other things and sent me to a rheumatologist. The rheumatologist did a few specialized blood tests and told me I had scleroderma as well as certain other autoimmune risk factors. I was shocked and confused and didn’t fully comprehend. She pretty much told me there wasn’t much they could do and to avoid certain things like echinacea and any supplements to boost the immune system. Honestly, it’s a little bit of a blur. I’m sure I was freaking out, but I don’t really remember. About 5 weeks later I went to my now mentor who practices Biomeridian Testing, which is now what I offer my clients. I have been going to her on and off for 14 years but throughout my Lyme disease issues, she is the main person who supported my efforts in pursuing the holistic/natural route to treatment. From day one she showed me how Lyme Diseases came up on my scans, even before I had major symptoms, but I was resistant and didn’t listen. So instead we worked on just building up my immune system with a natural immune modulator, as well as address gut issues, etc. This was what I believe the key to my success in getting to where I am now. By building up my immune system and gut beforehand, I was better able to push through treatments and protocols.

The reason I chose to pursue the more holistic/natural route to treating Lyme disease was due to the fact that I had yet to see a successful case treated through antibiotics. Everyone I had spoken to still had Lyme symptoms and had essentially gotten worse instead of better. Plus I had a close family friend who had just been diagnosed and got a port of antibiotics put in and got worse and never fully recovered. So in my mind, it was just not an option for me.

By May 2014, I was doing okay, still fatigued easily, but tolerated. I started law school in May 2014 and was fine. I was excited, doing well in class and doing okay overall. I went back to that rheumatologist I believe that same month but can’t recall much. I started going to a registered dietitian that month too because I was having a lot of trouble losing weight. I was working out but I wasn’t eating great—Honestly, I didn’t know much better back then, especially because I would have stomach flare ups and would get frustrated with eating and just didn’t know what to eat. I was just so sensitive to so many foods I couldn’t keep up. I just gave up and ate whatever I wanted in that moment. The dietician honestly made it worse. She didn’t know what she was doing in my opinion and I decided not to waste my money anymore. 4-5 months later I started getting extreme fatigue which was affecting my work ethic in classes, I started developing brain fog which then started affecting my studying and in-class participation. I believe the stress of law school definitely brought out my symptoms faster and made them much worse. My integrative doctor in Florida had me do some blood tests, indicating high ANA, some hormonal imbalances and a few other things. He started me on IV drips like glutathione and other vitamins, which I continued to do once a month in New York. I was struggling and I pushed through it, but I was getting to a point where the fatigue, brain fog, and joint pain were unbearable. There were days where I was perfectly fine. Other days I was stuck in bed all day like a vegetable unable to think. I then visited an endocrinologist because I was having a lot of hormonal issues and also believed maybe the brain fog, fatigue and weight gain was a hormonal imbalance. The endocrinologist pretty much told me there’s nothing wrong with me. So I was back to square one, confused, thinking maybe it’s in my head, maybe I’m crazy.

Throughout this process, I was very fortunate to have such supportive parents. Not only financially, but emotionally my parents were there me every step and I’m so grateful for that. I was very lucky that I can afford the kind of healthcare and realize so many people do not have access to that kind of healthcare.

In January 2015, I went to a radiologist who to get an MRI of my brain because Lyme had been circling our radar since we started learning about it and my symptoms seemed to match up. Still unsure, he requested an encephalomyelitis scan, which came back negative and that my brain had no lesions on it and thus that means I likely didn’t have Lyme. I then went on a cruise and post cruise I started experiencing vertigo and severe nausea. I had never experienced vertigo before and it lasted about 3 straight weeks. Growing up in Miami I was on boats and on the water almost every day and I never experienced vertigo before in my life. My first week back to classes in my first year of law school and I was literally sitting there spinning in constitutional law not because the material was hard, but because I was actually feeling like I was on a rollercoaster continuously tilting. Of course I went to a Audiologist and got an auditory/vertigo test and they claimed again nothing they could do and told me in the meantime I should start using a cane to maintain my balance. I remember laughing not because it was funny that as a 23-year old I was being told that I need to walk with a cane, but because they weren’t even sure why. Luckily my vertigo went away, but I was still exhausted, in pain, and foggy. And then I also learned every time I would get in a cab or get on a plane my vertigo would come back for the day. It really was terrible. Eventually, I discovered these vertigo patches I would use right before I went on a plane, or after I started feeling nauseous and dizzy and they really helped.

From February to June 2015, these months feel like a blur. I honestly can’t remember much but when I think back it was probably my darkest moments. The moments where I felt hopeless, depressed, frustrated, angry, alone and any emotion you can think of. I’m sure I had a protocol at this point that helped but I was still stuck in bed with brain fog, joint pain, stomach upset, and major fatigue. I scheduled a Doctor’s appointment months in advance with several doctors and finally in June 2015, my appointment came with a well-known rheumatologist who ultimately diagnosed me with a “mixed tissue disorder.” I asked him what that meant and he told me that it describes the symptoms I was feeling, there was no exact diagnosis and ultimately not much he could do. I remember hysterically crying in his office begging him to help me and him just starting at me saying sorry I don’t know what else to tell you. At that point I was desperate to figure out why I felt the way and did and I honestly felt like I was going crazy. [This wasn’t the first time I had experienced little to no answers with illness before. For my back pain, it took 2 years for a doctor to figure out. Ultimately what I had wasn’t something difficult to figure out with the symptoms I had, but now I know better. These experiences have led me to realize how important second opinions and even multiple opinions are in finding out more about your health.]

I was so discouraged. I was working a summer job during the week but I couldn’t hang out with people the way 24-year-olds normally would on the weekends or after work. I was just so tired, and if I went to lunch with someone the rest of the day I was exhausted so I spent a lot of days at home, in bed glued to the TV or sleeping.

Before I move on with the rest of my story, I want to explain moments in time of what I was feeling. The frustration of not knowing, not understanding why you’re not feeling well. I went into deep depressions and the thoughts I had honestly scared me. Every doctor appointment I would cry. When someone would ask me how I was feeling, I would be on the edge of tears but still manage to say I’m doing okay or I’m fine. It was all so hard, and hard for people to relate. I mostly kept to myself and didn’t really let people know what was going on. Even the people who did know I wasn’t feeling great, they didn’t truly know nor could they understand what I was going through. People would say “oh well you look good.” Just because I looked okay, or not their definition of sick meant that I must be fine then.

 I was lucky enough to have a support system of my parents and my boyfriend at the time. But even they didn’t understand, they didn’t know what to say and it was very isolating. I later found people who I could confide in that had Lyme disease or had some chronic illness who could relate. Hearing their stories really helped, so if you have a chronic illness, talk to other people about it and share your stories with each other. Especially people who have healed their Lyme and are on the other side. It gives you hope and know there is another side and there will come a day where you will wake up energized, ready to take on the day and you will forget what it’s like to wake up feeling horrible.

It’s like climbing one of the biggest mountains of your life. You’re halfway there but you’re ready to turn around and go back down. You can’t possibly reach the top. You can’t breathe, you’re exhausted. Then you get a glimpse of the beautiful view and start to see the sunrise. But then you’re brought back to the pain of having another couple miles to go. You keep questioning whether you’ll be able to make it. You think to yourself “I can’t possibly push through this and reach the top. I just don’t care anymore.” You’re not sure you can make it, but you keep going, you persevere… and FINALLY you reach the top and see that gorgeous beautiful view with the most beautiful pink sky. You may be scared in the beginning waking up every morning wondering am I going to feel okay today, but one day you will. This is a time to get in tune with your body, love your body and really give it credit for going through this with you. I know that I hated my body, I felt my body was failing me. But I grew to accept that my body was actually helping me get through everything and truly listened to what it really needed. So hang in there. And if you’re someone who’s watching someone struggle just be there for them the best you can. No you don’t know what they’re going through but just help them when they need it, know that there will be frustrating, angry moments and just be there and don’t blame them. It’s tough.

Another thing I wanted to add is that everybody experiences Lyme symptoms differently and furthermore Lyme creates other issues, including more susceptibilities to other pathogens and autoimmune tendencies. So when you get Lyme, you end up getting everything. It sucks.

At this point I was starting to believe I had Lyme, but still no official diagnosis from a doctor. I had Biomeridian Testing done and Lyme disease as well as other co-infectors continued to show up. I wasn’t sure what to do and wanted to find a Lyme literate doctor, but it took months sometimes up to a year to get an appointment with these doctors. In August I visited a rheumatologist in Florida who told me she really respected the opinion of the previous rheumatologist I had seen and she agreed with him. That I just had some autoimmune tendencies, and there was nothing she could do. She did say that she was not really familiar with Lyme so she didn’t really have much to say. I then revisited my Florida integrative doctor who ran tests for Lyme. The results were mixed remaining that I had some indicator for co-infectors, but had to retest for other indeterminable areas. I got a re-test which turned out positive.  I also had a high CD-57 which my doctor wanted to test me further for other random viruses like Chikungunya (which came back negative). So it looks like I had Lyme. Now what? I wasn’t exactly thrilled about this because I had recently had people I knew with Lyme and they had already gone through years of struggle with antibiotics and ports put in with zero success. So I didn’t want to take that route. Plus, I already had such struggles with gut issues that more antibiotics I knew would just make everything worse for me. Whenever I had taken antibiotics in the past I would always get worse gut issues. So I was definitely a bit lost. My doctor also ran an LRA by ELISA/ACT test at some point to discover any food related sensitivities. At this point I continued my own specialized protocols with my Biomeridian Testing Homeopath and tweaked some things for symptoms I was feeling while we explored more natural Lyme based treatments.

In the end of October 2015 we finally had an appointment with a specialized Lyme literate Chinese medicine doctor in New York who wanted to put me on all his products. I wasn’t really interested since I already had my own protocol and he claimed I would be up and feeling great within weeks and his protocol just seemed too good to be true. It just all didn’t feel right. At this point I was just addressing my auto-immune related symptoms, and trying to build up my immune system, focus on gut healing and also addressing a lot of adrenal fatigue and still working on my hormones and thyroid. I was still working with my mentor on Biomeridian Testing to help me find the exact things that worked for my body.

I was introduced to a woman who was a Lyme expert/advocate and had Lyme herself. This woman really changed my life. First, she had me get genetic testing done and had my genetics analyzed, which brought to my attention my issues with detoxing and methylation issues as well as potential estrogen dominance and more. I also found a Lyme-survivor Chef who had claimed she healed her Lyme with food and a Rife Machine. She helped me discover the AIP protocol and just overall made me even more aware of food related autoimmune intolerances and things I should be avoiding while healing from Lyme. The Lyme expert also spoke of the Rife machine which I bought a few months later and used daily for months. I also started using a an infrared sauna daily. [For those reading and curious about my personal protocol, I will later post resources and other Lyme tools I found helpful, so stay tuned!].

By December 2015 I started my Lyme protocol which included Cowden’s Lyme protocol combined with other supplements. Wow did things get shitty (sorry for the language, but if you know what it’s like to Herx, you’ll accept my language—you may even think it’s not enough). I started herxing like crazy—for those who don’t know what herxing is, it’s pretty much when your symptoms get MUCH worse. What you’re experiencing is a die-off reaction of pathogens and the toxins are being released by those pathogens into your body. It’s pretty much a situation of things getting WAY worse before they get better. There were temporary little “fixes” or “relief” I got through herxing but I knew herxing was my body’s beginning process to getting better. Along with the rife machine, vitamin IV’s, and daily infrared saunas, I was able to better detox. I was even more exhausted all the time and sometimes felt like my skin was crawling. I had terrible joint pain and brain fog. I was going nuts. I would sometimes walk around forgetting what I was doing. This honestly was happening months before. I remember one specific time a few months before starting the protocol I was walking out of my apartment in New York City. I got to the street and as I’m standing in the middle of 6th Avenue and 15th street I completely forgot where I was going or what I was doing. I had enough capacity to walk back to my apartment, but as soon as I walked in I started crying and remember saying to myself what’s wrong with me. Sometimes I would pace around the apartment not knowing I got up to get something only to completely forget why. It happened very frequently. You might be saying oh that happens to me all the time and I don’t have Lyme. But the way it was happening with such frequency was abnormal.

Throughout these months I was also travelling to Florida at least every 3 months to see my mentor who would scan me using Biomeridian Testing to update and dose out all my supplements and protocols. At this point I was on over 23 different supplements and remember looking at them laid out on the table and thinking how crazy it all seemed. But little by little I started getting a taste of what feeling better felt like and I knew I was moving in the right direction. I honestly also think the rife machine and infrared saunas were also huge parts in my healing process.  

By February 2016 I was definitely making progress and I’d have my days. Some days I was fine, others I was definitely not. At this point I don’t really remember much and even have trouble remembering those months. I feel like I did start turning a corner and would be great for like a week and then worse the next week. It was usually a gamble in the mornings, I’d wake up and see how I felt. What I didn’t realize was I needed to start pulse and rotating all the supplements (meaning I had to take some supplements and then rotate to different ones), which I eventually started doing.

By May 2016, I started another protocol. I noticed I was having a lot of better days at that point. I was working, and seemed to be able to get through the days, but weekends and nights I definitely noticed I was exhausted. Too exhausted to really socialize as much as I probably would’ve liked. I feel like I remember at some point here feeling a lot better but I don’t fully recall. I know my mom had reached out to Lyme Alliance and started getting involved and asked for doctor recommendations earlier on. We had gotten an appointment with a Lyme literate doctor 6 months prior. And when the date finally came, I honestly feel as though Lyme was not my big issue anymore, it was all the destruction it had caused the rest of my body including making me more susceptible to bacteria, hormonal issues and autoimmune tendencies. The doctor introduced me to a bunch of things that helped me feel even better. I wish I had met him sooner, but I was glad to finally have him. He referred me to another doctor to check if I had any bacteria in my stomach to be concerned about. Of course I did, and that was the only antibiotic I went on during this process (and probably the last one I was on up to today). Of course after the antibiotic I had a whole bunch of candida overgrowth, thrush and a lot of yeast build up that took a few months to fix, but my excessive bloating and stomach issues subsided. He also did mold testing as well as several other blood tests. I had mold toxicity which I started a medication for but shortly after I noticed I didn’t feel great on it and was so over not feeling well. Later, I know I did another protocol for Lyme, but don’t remember exactly when.

I remember at some point taking a turn fully for the better. I can’t exactly remember when it happened, but I do remember by January 2017, I was starting to feel normal. Like something lifted from me and started feeling good again. Like I was functioning, I could socialize more often and had less and less days where I was stuck in bed all day and night in pain, and exhausted. I remember feeling so much more normal and it’s almost like it had all never happened. It was as if I was a new person and got to start over and woke up with energy again and no joint pain or brain fog.

I graduated Law school and moved back to Florida. By the summer I was feeling great, but I noticed I was lost and really my heart wasn’t in law anymore. I was noticing all the knowledge I gained over the years and I wanted to take my knowledge and help others but I didn’t know where to start. I also felt so committed to law school and as I failed the bar I finally dug deep, and started to connect with myself again and really tune in to what I loved and felt passionate about. So I got my certification in Holistic nutrition, certified in Biomeridian Testing and started studying under my mentor. I knew so much about it and always asked a million questions during my sessions over the 14 years I had been seeing her that I already knew the machine so well. I then got certified with the company of the machine and then practiced on many people before I opened my own business.

Today, I am the founder of Biosoul Balancing and I help people on their wellness journey’s, wherever that may be. I believe food is your ultimate healer and you can’t out supplement bad nutrition, but sometimes it goes further than that. I’m here to help those, who like me, needed guidance and someone on their side. I understand it’s not an easy process but the journey to healing and feeling great never really is. I hope you found my story insightful and helpful. I’m available to answer any questions you may have. Whether you’d like to schedule a consultation for a session with me or you just want to know more about my Lyme story, I’m here. You can email me at lily@biosoulbalaning.com.

If you’ve made it this far to the end of my story, thanks for reading! It’s taken me a long time to finally write out my story. And I’m grateful I could share my experience with you. I hope you found it helpful/enlightening.