My Lyme Story
Updated: Mar 13, 2022
Like many others, I cannot be certain when exactly I got sick. I can only do my best to go back and give you the details that I recall as things started to fall into place. My life seemed mostly unremarkable health-wise up until 2005 when I was pregnant with my daughter. I ended up extremely sick with a condition called hydronephrosis which typically isn’t all that uncommon in pregnancy, however, my case was severe. I spent eight weeks in the hospital and away from my son. Prior to my eight-week admission, I spent a few weeks in and out of the hospital related to the same condition. By the time I was released from the hospital, it was only about four weeks out from my due date. I left the hospital with bed sores in the middle of summer and had to stay with my parents until I was ready to deliver my daughter because I couldn’t be alone at the time. August came and went, I delivered a healthy, happy baby and the hydronephrosis and hospital stay were soon a distant memory.
Fast forward about four years to 2009…. I had just dropped my son off to school, he was in kindergarten and my daughter was still in pre-school. I was on my way to drop her off at daycare when we were t-boned by another car. The accident was pretty significant, and my life has been changed since that day. I remember the details like it was yesterday; it was a clear day; the sun was shining, and I was headed west on four lane road. I was driving in the far-right lane and had the green light, as I approached the intersection, I see a vehicle headed north on the intersecting street, I could tell he wasn’t stopping. I slammed on my brakes as hard as I could and attempted to stop my car, it was too late, he crashed right into the driver’s side of my vehicle. His blue Volvo station wagon smashed into the driver’s side door of my Toyota Highlander and then his vehicle spun around and hit the driver’s side of my vehicle again, pushing us head on into a telephone pole. I cannot even describe to you the feelings of fear, panic, and pure adrenaline that rushed over me in that moment. It is amazing how you lose all sense of awareness to your own physical pain when you know your child is in danger. My daughter was in her car seat in the back, directly behind me, so also on the driver’s side of the vehicle. She was three so she could definitely talk at the time, yet I heard nothing but silence, a very eerie silence I must add. Every single airbag in the vehicle deployed, weird gasses and dust filled the car, my horn was honking non-stop from being smashed into the telephone pole. I tried to turn around, but the dashboard was pushed in, and my knees were trapped, the electric seats wouldn’t budge, the door wouldn’t open, I had burns on my arms from the airbags, it was the worst feeling of my entire life. I just needed to see my baby. The accident happened in front of the police station, and I remember an officer coming out to disconnect my horn. The paramedics arrived quickly and were yelling at me to stay still inside the car, but there was not a chance in hell that was happening. Somehow, I wiggled my way out from beneath the dashboard and climbed over the seat to the back where my daughter was- and there she was… clearly in shock because her eyes were just staring back at me, but she was okay. I felt the adrenaline rushing slowing and the injuries slowly starting to make their presence known. Still, not really feeling much of anything I sat in the backseat holding onto my daughter while the police and paramedics worked to get us out of the car. I vaguely remember calling my dad who was at work about fifteen minutes away. It felt like only seconds passed and he was at the scene with us. We were transported to the hospital, treated, and released. We came to my parents’ house so they could help with the kids because I was a single mom. The following day the actual pain set in; I woke up feeling like I was literally beat up from head to toe. Basically, everything on my body was sore, but my neck was an entirely different level of pain. In fact, at this very moment, twelve years later, I still have neck pain and issues that are indescribable. The pain is relentless and like nothing I have ever felt before. The accident was a definite turning point in my life with regard to my health and I haven’t been the same since that day.
Prior to 2009 I just recall having stomach issues (IBS) and having the most awful menstrual periods ever! I would often miss school because I would be doubled over in so much pain. Aside from the pain, my periods were irregular and abnormal; I seemed to be on my period more than I was off it. I suffered for many years and tried all of the typical treatments: birth control, D&C, and ablation. I thought the ablation was a Godsend for many years because I didn’t bleed again after I had it. Several years later, I began having intense pain and issues on and off with cysts on my ovaries. I had a few trips to the ER due to severe pain in my abdomen which ended up being uterine fibroids. They decided that I needed to have a hysterectomy, which was one of the easiest, yet most difficult decisions I ever had to make. In the moment I would have done anything to rid my body of the years of pain I felt as I was tortured by my female parts for too many years. But then once I had a minute to reflect on what I had to give up for that pain to go away, I was devastated. I experienced a whole new level of emotional pain and sadness. The thought of giving up my ability to bring children into this world sickened me. Though I had two children already, I still wasn’t married when I had to make the decision to move ahead with the surgery. I decided it was best for my overall health to proceed, though to this day I wonder if I made the right decision, you would probably hear more about this later on.
Back to 2009, after the car accident I feel like my body went through a series of changes and I was never quite the same. Initially it was the pain from the injuries sustained in the accident and as I mentioned before the neck pain was prominent. There was also this overall achiness in my body. The days went by, and the pain changed, it never really went away. I could tell that something was off because plenty of time had passed, and my body should have healed and returned to how it felt prior to the accident except that never happened. For a long time, I just dealt with the pain, but before I knew it days became months, and months became years. My pain grew more intense with each year that passed. I saw countless specialists because I was experiencing widespread pain throughout my body, fatigue, and an array of other symptoms that seemed to worsen by the day. I sought out some of the best specialists at the top hospitals near my hometown. I remember how hopeful I felt before each appointment; I felt like they would finally help me; they would finally figure out what’s wrong with me once and for all. I held onto that hope before each of those appointments despite leaving most of them feeling defeated and dismissed. It seemed like the specialists at these big fancy hospitals were just there to rack up revenue for the hospital system. I left feeling like I was just another number, like I had wasted another day and spent more money on another trip for another pointless appointment.
I received a diagnosis of fibromyalgia which I thought was a bullshit excuse for they had no idea what was wrong with me. At the time that I received the diagnosis, fibromyalgia was still slightly controversial. I did a ton of research and continued seeking treatment for my pain, eventually I realized how incredibly real fibromyalgia is and that I would never wish it on my worst enemy. The harsh reality didn’t come easy for me and if not for one particular provider who sat me down, put her hand on my leg, looked in my eyes, and said: “Fibromyalgia IS real, it is NOT in your head, and you DO have it,” I would likely still be skeptical. It was something about her tone and her words that day that changed my thinking entirely when it came to fibro. I’ve had to explain my fibromyalgia pain over the years and in a nutshell, it is best described as follows; it feels like someone beat the hell out of me with a bag of bricks and then lit me on fire. This has become my standard response as it’s accurate and easy. That is exactly how fibromyalgia feels for me. I usually follow that with; “I have bad days and days that are worse.” I have found that fibro is a relentless assault on the body. After I accepted the diagnosis and learned to live with pain, I decided that prescription medication was just not for me. I view fibro meds as a temporary fix for a permanent problem. It is my opinion that medications used for fibro are only for symptom relief, which is an important piece of the puzzle, but by no means a fix. I feel that the long-term use of these medications only further complicate things down the road. Most medications do not come without risk and more often than not there are other implications involved whether that be side effects, drug interactions, or potential harm to other organs in your body. By no means do I intend for this to be viewed as medical advice or to replace the advice of your medical provider, this is my personal view on medication as it pertains to fibromyalgia treatment. Always consult a medical provider when you are in need of medical advice. My opinions are based on my experience with medication, and I have learned that my body does not tolerate medication well. Aside from medication, I feel the best treatment for fibromyalgia is more of a therapeutic approach. For me, I have chosen things like acupuncture, massage, meditation, and light activity over medications. Truth be told, most days I struggle, so do what work for you! It’s possible I am missing out by not taking those feel-good meds!
Moving on, even after adjusting to the fibro, I still didn’t feel right, I felt like they were missing “something.” I went back to that same “world-renowned” hospital that often left me feeling defeated so many times in the past. I don’t have a good reason as to what kept drawing me back there because I wrote that place off every single time before that, yet there I was back in the same hospital. It was October 2014 I scheduled with an internal medicine doctor. We spent a lot of time together and went over extensive medical history and the reason for my visit with him. He ordered tons of bloodwork and we scheduled a follow up visit to discuss results. There were minor issues with bloodwork, but none that were out of the ordinary for me except for the Lyme Disease test which came back as equivocal. I’ll never forget the doctor saying: “Your Lyme test came back equivocal, but that’s a rabbit hole you don’t want to go down.” I asked why and he said: “You will spend a lot of time and money and you won’t get anywhere.” That statement maddened me. I didn’t know it at the time, but that was the beginning of a very long road for me. Of course, I had heard about Lyme Disease prior to that appointment, but like many others, I had no clue as to what Lyme Disease really was, but I was about to learn.
I began my research immediately. The more I learned, the angrier I became both with that doctor and many doctors before him. From a clinical standpoint I had almost every single symptom of Lyme Disease why we would not “go down that rabbit hole?” And beyond that, why the hell are you referring to a medical diagnosis as a rabbit hole? My entire mindset changed. I quickly realized the incredible and unbelievable controversy surrounding this medical condition.
Several more months passed, I was still experiencing incredible pain daily, fatigue that no amount of sleep could cure, and a host of other random symptoms. It was summer 2015 when my face began to swell on one side, and I had vertigo which persists to this day. Something was going on with my hormones because the amount of facial hair that seemed to appear overnight was enough to put the manliest of men to shame. My family doctor sent me to a place that specializes in hormones. The provider ran a number of tests and countless labs. We found out that my hormones were all over the place, my adrenals had tanked, and my Lyme test had “some” bands light up. At that point the testing showed I was in second stage adrenal fatigue, so we treated hormones and supported my adrenals. The hormone levels explained the facial hair, which worsened with treatment initially.
I really took a liking to this provider because she was different. She listened, she took time to hear me, to understand me, and most importantly she was an outside of the box thinker which was what I felt I needed given that I had been sick for so long. Part of her treatment protocol was IV infusions. The infusions were high dose methylated vitamins and high dose glutathione; all things vital for maintaining good health. Sometimes I would get a headache initially and be extremely tired. However, the following three days, I felt renewed and full of energy. I continued to travel two hours away to see this provider once a month and she continued to coordinate care on my behalf with my PCP. Ironically one day while in Pittsburgh for treatment I had an encounter with another patient who shared the same primary care physician as I did which was great because it gave me a weird sense of home even though I was a couple hours away in this doctor’s office receiving treatment. Each appointment I truly learned something new and left feeling hopeful and confident in the treatment plan. * Note *(I will not list the full names of my personal providers, but the Lyme specific doctor’s will be named for your reference.)
Dr. L worked tirelessly on the hormone imbalances and diagnosed my hypothyroidism. I was feeling slightly better over time in terms of energy and what not, but I still did not feel good. The symptoms persisted and I even developed some new symptoms. It seemed like for every one symptom that improved, three more would appear. It got old fast! Without fail at every appointment Dr. L mentioned the Lyme Disease. It also seemed like doctors were hesitant to diagnose and they weren’t quite sure what to do if they did diagnose Lyme. Dr. L would often say to me: “I really think there is something here with this Lyme thing and I think we should treat it. I am not a Lyme doctor, but I have several other patients with Lyme, and I am learning so I am willing to help you.” Her honesty in that moment meant so much more to me than she will ever know. I left her office knowing that we were in this together, that she was going to fight for me, that she would at least try her best to help me and so it began my diagnosis and treatment of Lyme Disease.
I didn’t have the slightest clue as to when or where or even how I could have contracted Lyme Disease. I have no recollection of a tick bite and definitely no classic bullseye rash. I grew up in the country and cell phones and social media weren’t a thing yet, so we spent a lot of time outside. We rolled around in the grass, took walks through the woods, rode four-wheelers, walked through creeks, and buried ourselves in giant mud holes. Summers were spent outside by the pool lathered in baby oil with too much peroxide in my hair. I know now how idiotic and dangerous that can be, but back then you couldn’t tell me nothing! As wonderful as our pool was, there were these pain in the ass horse flies that were always biting. They were anything but ordinary flies and their bites hurt! Summer nights and into fall we often spent outside gathered around a bonfire still haunted by those damn horse flies. I tell you these things because after doing years of research, I now know that you can contract Lyme Disease from more than just ticks.
I don’t remember a specific time during my childhood that I felt sick despite all those damn mosquitoes and horse flies that just loved to feast on my flesh. The one thing worth mentioning is my reaction to any kind of bite was significant. I had immediate swelling, pain, irritation, and itching. But still, I never experienced any prolonged illness as a child or teenager, and I never dealt with lingering symptoms. Sighhhhh, how it would be nice to go back to those days when I was “normal;” the days that were spent living and enjoying life, the days spent pain free.
We had a family had a camp that was nestled away in the woods, and we would spend time there on four-wheelers and in the woods as well, so again, opportunity was there. I can tell you that other than internet pictures, I don’t know that I’ve ever even seen a tick up close until this past summer when my mother pulled one off of her dog. I have always been aware of the dangers of ticks but at the same time ignorant to the true danger of Lyme. I took all the precautions and then some; I would go outside with long pants tucked into my socks and as little skin exposed as possible. I have never been a fan of chemicals, so it was a hard no for me on the bug spray. I would check my hair, behind my ears, knees, and under my arms for ticks when I came inside and would shower right away. I never pulled a tick off of me.
Dr. L proceeded with treatment which consisted of doxycycline. I remember immediately getting dizzy and afraid to push through it, so I stopped taking it. I was switched to another antibiotic amoxicillin. Again, we were kind of flying blind here and there was no set plan, just trial and error at this point. I finished the amoxicillin and returned to Pittsburgh for follow-up feeling a little better but not much. Over the next several months and up until probably mid 2016 I continued to follow up with my primary care doctor as well as my Pittsburgh doctor monthly. At both visits we would discuss what one wanted the other to do and vice versa. I really respected my Pittsburgh doctor because she was open and honest and entirely respectful of my primary care doctor. I wish more doctors would communicate either directly or through their patients as I feel the patient can benefit by having more than one set of eyes when it comes to medical issues.
The only downfall to Pittsburgh, aside from the two-hour drive was the cost. The appointments alone cost between $225-$675, usually closer to the $675 range which would include the appointment, IV infusion, and supplements I needed for the month. That is a lot of money to pay every single month, so I started to feel like I was a strain on my family and like my medical costs were taking away from them. I felt like I was a burden to them and that I should probably hold off on at least the IV infusions. I continued to do the appointments over the phone because I was too sick to drive to Pittsburgh. I was now spending $225 for a twenty-thirty-minute phone call with the doctor. We treated with supplements but none that I recall being specific to Lyme. Dr. L continued to mention that she still felt the Lyme was playing a big role in me not feeling well and she thought that we needed to continue to treat it. Honestly, I didn’t know what to think or feel. I guess there was a part of me that didn’t want to believe in the Lyme diagnosis or was still slightly skeptical.
at first it seemed like everything I was already experiencing was amplified, but then I started having new symptoms. I had severe sciatica and issues with back pain that landed me in the hospital more times than I can count. the pain was so bad I literally could not stand up and I mean literally! I went to my PCP and got steroid shots to help manage the back pain. it would help temporarily but looking back I think it was doing far more harm than good given that I now know how dangerous steroids and Lyme disease are. I received several steroid shots, a combination of Decadron and Kenalog which made the back pain somewhat manageable.
by the end of 2016 I was bed bound. I could barely move my legs off the bed and would scream in pain if anyone came near them. talk about humility when you find yourself relying on someone else to care for your basic needs like daily hygiene, going to the bathroom, preparing meals, and cleaning the house. I thank God for my kids and my family who really pulled me through one of the darkest times in my life because without them I am not sure how I would have survived that hell.
I had a home healthcare nurse who became one of my very best friends, she was a true angel on earth and made some of those dark days brighter. We spent a lot of time together because she was there three days a week to do my IV infusions and check vitals. I felt a little better just knowing she would be coming to check on me because I was terrified and felt alone.
I lost a bunch of weight because I couldn't really eat and when I did eat, I had to force myself. I felt frail and disgusting.
I was put on IV Rocephin and it was only then that I started to slowly turn the corner. After a week on the antibiotics my legs started to feel a little better and I was able to get up and around.
throughout all of this my husband and I had really been struggling in our marriage, we stopped communicating and were living as roommates for the most part. I blame myself for how we got to that point because I was absolutely miserable and shut almost everyone out. Chronic illness is complicated like that- you want and need people, but you also feel so shitty you just want to be left alone. I didn't want the man I loved so much to see me so weak and so vulnerable, I didn't want to become unattractive to him, I didn't want him to view me as a crazy person. To be fair, I will say that this was all in my head because he would have never thought any of those things, I am sure, but I made myself believe that he would so that I could push him away and it wouldn't hurt as bad. It really was hell for everyone, and I regret so much about how all of that went down but I was in survival mode, you live and learn is all I can say about that. Read more about my growth in all of that on my blog: "Dirty Laundry."
The beginning of 2017 I decided I could no longer work and needed to file for disability. I filed in January, and it was a very long and nerve-wracking process. I felt I was risking everything. Given that I couldn't work, and I was told it was a two-year process, I liquidated my retirement to keep my kids in private school and maxed out my credit cards just so I could get by. It was a very scary time because things were so up in the air; I knew I couldn't work because my body just couldn't do it. I also knew the odds of getting disability at my age were very slim simply because of my age alone. I hired an attorney and continued through the process.
My husband and I separated in January of 2017, and I moved on to another relationship. My new relationship has been filled with ups and downs and lots of chaos as I am sure happens in relationships once the newness wears off. It's also difficult when you try to blend families, so we have had our fair share of struggles....
Back to the Lyme....I started to experiment with testing and supplements as well as different protocols. I remember I had my doctor order every test I would read about because I was constantly researching and learning. The testing for Lyme disease is F*CKED up to say the least! It maddens me because most other illnesses you can have blood drawn, receive a result, and be confident with the diagnosis. Lyme is all over the place, so much so that I requested my doctor draw labs one a day for a week, then once a week for a month because I wanted to see how different the results would come back across the board. You can probably guess where this is going, but if you can't let's just say that no two of those results were the same! That blows my mind to this day, so please do not rely solely on lab results, Lyme is a clinical diagnosis. Now I am not a doctor, but I will say that I believe the discrepancies in the lab results may be due to the fact that Lyme is super sneaky, tricky, smart, whatever you want to call it- think of Lyme as the biggest mindF*CK ever! If you think you, have it figured out, it will come out of nowhere and throw you a curveball, so stay diligent. Listen to your body, trust your gut, and advocate for your medical care always!
CD57 was another test that I had my doctor order, and I will say I felt lost with this in the beginning because I knew what the test was supposed to indicate based on what I had researched but I didn't know there were so many different CD57 levels on the blood draw. if you haven't heard of CD57 it is supposed to be an indication of where you are in treatment, if numbers are low then it is believed treatment is not working or you are in late stage of the infection. It is believed that once the numbers start to come up that you are getting better. I don't believe this is an accurate way to gauge where you are at in your journey, because I think many things can affect these levels.
I searched high and low for supplements and herbs to help me feel better and felt frustrated and overwhelmed. Ultimately, I settled on The Cowden Protocol only because they had everything put together already which is what I wanted and what I needed for my brain. The Cowden Protocol came with a booklet, and you just had to order each month as you move through the protocol. It was a nine-month protocol, and they had the tinctures separated into exactly what you needed each month as you progressed through the protocol. My personal experience with it was different and my overall opinion is I am not sure I benefitted from it. To be fair I will say that I got most of the way through the protocol, but the G.I. upset became too much to and I was advised to stop. During the time I was on it, I experienced increased anxiety, like more than anything I had ever experienced in my life. I was panicky all the time and all my nervous system felt like it was hypersensitive to everything. I struggled with horrible dizziness, I was having hallucinations, and my head felt so heavy. It was a very scary time for me, and I want to be clear that I am in no way implying that all of these things happened specifically because of the protocol, this is just the truth of where I was at in my journey at that time.
I took a break from everything for a while just to give my body some time to recover. I continued my research into supplements and herbs and with the help of Stephen Buhner's (Master Herbalist) books, I started to build my own stash based on my specific needs. I started with basic immune support, then added inflammatory support. Once I had a simple base for those things, I switched my focus to trying to heal specific symptoms. Remember that there is no one size fits all approach with Lyme and chronic illness. We are all different and therefore respond differently to different treatments. It's truly a marathon and not a sprint, so remember to be patient with yourself.
I started to find ways to manage symptoms holistically and decided I wanted to consult with Dr. Marty Ross, MD, a Lyme Literate doctor. I really liked Dr. Ross and I feel like he gave me great advice and treatment guidance. I did virtual visits with Dr. Ross because we are on opposite sides of the country, and I also did only the consults because I didn't need him to order labs or write for meds, so I was simply picking his brain and following his treatment plan. I had a good experience with Dr. Ross, and I would highly recommend him to anyone who is able to get out there to see him. I think he stopped offering virtual visits sadly. Dr. ross has an incredible website www.treatlyme.net so if you cannot afford to see him but still seek his guidance, I would encourage you to check out his "Online Lyme Guide" on his site! He is very generous with the information he shares and it's very organized and easy to follow, he also does videos that you can find on his website as well.
Things have settled with me to the point that I have learned what my body needs and when. I can tell when things are flared, and I can tell the difference between the fibromyalgia and the Lyme. I know they are very similar, but the pain is very different, it's hard to put into words but if you have both I am sure you can relate.
I would ask you to check out my "Advice" section on my Lyme page for my advice and to see what helped me- There's lots of good info there!
Thank you for taking the time to read my journey and I pray that we all find peace and comfort in knowing that while this walk may be a lonely one at times, we are not alone because we have each other.
The information shared on this page is for informational purposes only, it is my opinion and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.