Lady of Lyme
It was a crisp day in the summer of 2006. I had just recently graduated high school and was making the most of spending all the time I could with my friends before we had to part ways. I come from a small town, and our choices of activities were limited. One of our favorite games to play however was called Spotlight. It was a game of hiding and seek tag that was played outside at night. The person who was “it” used a flashlight to go searching for the others who were hiding, and when they found someone they would shine the light on them and yell “Spotlight!” Then it was that persons turn to be “it.” It seems like a really trivial game to play at 17-18, but it was a big group of us and we loved it.
The day after one of these riveting games of Spotlight I felt myself coming down with a cold of some sort. I experienced general flu-like pains, fever, sore throat, and exhaustion. I remember thinking “No, not now! I can’t be sick!” I tried to take some DayQuil and move on, but I got more and more sick until I had to succumb to antibiotics. My doctor thought it was strep throat so she gave me a 7-day round of antibiotics. By the end of the 7 days, I felt amazing and was ready to get back to my friends. No more then a day later the symptoms came back just as strong and fast. This time my doctor said we must not have done enough antibiotics and ordered me a 10-day dose to take again. The same general scenario happened: I took the 10 days, felt better, then almost immediately got sick again. This third time my doctor said it must not be correct antibiotic so she tried a different one for 14 days. That month felt like the absolutely longest most miserable time. I wanted so badly to go outside and enjoy the sunshine, but the light coming through my windows just hurt. I was the sickest I had ever been at the time and slept through most of the summer month. Much to my pleasure and surprise after the last dose of antibiotics, I felt great. I was back to my old self and really thought nothing of the ordeal.
Months passed by and the time came to leave for college. Being on my own was stressful. I never realized how much I depended on my parents until I had to take care of every meal for myself, do my own laundry, and keep up with classes which were extremely tough. I managed to get through my first semester thankfully, but when I came home from Christmas break my body was so exhausted I fell ill again. Same symptoms as I had in the summertime, so my Doctor gave me a 14-day round of the antibiotics, which worked. When it came time to return to school for the Spring semester I was ready, but I didn’t feel right. I started having lots of GI problems I had never experienced before. Stomach cramps, nausea, loss of appetite, feeling full when I wasn’t, IBS symptoms, and exhaustion. It got increasingly worse so my mother got me in with a few different Gastroenterologists who all ran a battery of exams which all came back fine.
Now, let me mention that until this point I was a very healthy child. I NEVER got sick. I would honestly get a cold once every 3 years. My immune system was impeccable and the only real complaint I ever had was migraines, which I inherited from my father’s side of the family. Otherwise, I was an active girl who did Dance (tap, point, ballet, jazz, contemporary) since the age of 6, I played tennis, I played the piano, and I loved to be active. So having these terrible stomach issues and every doctor looking at me like I was a nut was extremely frustrating. I was angry, very angry that the people I trusted were treating me like I was crazy. My mother is a physician herself, so I grew up trusting doctors. This belief was slowly getting shattered when Doctor after Doctor failed to help me with the pain I knew I was experiencing. One of my GI doctors went as far as telling me he would refer me to a Psychiatrist. As my stomach got increasingly worse with burning pain, sharp pains, and other pains I couldn’t even describe, I felt my grades slipping & my hope to get better slipping. One doctor gave me a motility drug that worked for about a week and then actually made me worse. My parents never gave up though; they fought on until we finally found a doctor who took me a bit more seriously. She said she believed that I had what was called Small Intestinal Bacterial Overgrowth (SIBO). This can happen from taking too many antibiotics. “BINGO!” I thought. This had to be it. The irony of this diagnosis is that it calls for more antibiotics to treat it…different antibiotics. This made 0 sense to me, but I followed the orders as I was told. I took these new antibiotics, and for a while, I was improving. Things looked up for me after almost a year of pain and suffering.
My joy was rather quickly fleeting though, because my stomach issues came back not long after, and lingered. On top of that, I also began having lots of exhaustion. Almost every time I stood up I nearly fainted. I remembered thinking how weird this was. Maybe I was just standing up too quickly? These symptoms also got worse so it was back to the drawing board with doctors. My B12 levels were low so they decided I would receive weekly B12 injections and be fine in no time. Months went by doing this and I was not getting better.
Ever so slowly more and more symptoms came about. Each time I went to a specialist for the symptom I was having, and they diagnosed me as something in their field, or they would send me away. I spent more time in doctor’s offices (often times traveling out of state) then I spent being a normal young adult. My heart started having very abnormal arrhythmias and I was getting out of breath easily, so we saw a cardiologist. She was a kind and caring woman who ran many tests and finally diagnosed me with Postural Orthostatic Tachycardia Syndrome (POTS). The symptoms all lined up, and since this was a disorder of the autonomic nervous system it had an explanation for all my stomach pain as well. My nervous system was not firing properly and therefore giving me gut motility issues. This same system controls your heart rate and blood pressure so those issues were covered. I finally felt like I had an answer. I began taking Florinef (asteroid of sorts), which helped me retain water and salt to raise my blood pressure.
I wish I could say this was the final stop on the journey, but from this point on things got horribly bad. I came down with migraines, stomachaches, exhaustion, pain near my liver, nausea, and had lots of weight loss. I barely completed my last semester of college from being so ill. My mother had to take time off work to come to my school and move in temporarily to assist me. Finally, I graduated and one day just broke down and collapsed from the sheer pain I had in my stomach. My parents rushed me to the doctor where we found out my gallbladder had all but stopped functioning and needed to be removed immediately. A few days later I was in surgery and had it taken out. This surgery brought me great relief and we felt as though this was the answer to all my pain and suffering.
After the surgery, I felt well enough to move clear across the country to Los Angeles to pursue my dreams in Fashion. I got accepted into the world-renowned school, FIDM. I could hardly wait to finally start to live my dream. However, my body was not ready for me to put this kind of stress on it, because shortly after my move things started to fall apart again. More stomach problems, crippling fatigue, migraines, and worst of all I had developed extreme motion sensitivity and sound sensitivity. I could not be a passenger in a car for longer than 15 minutes without getting carsick. This went for all things that moved like elevators, escalators, boats, etc. I got very ill from all of these. This got worse as well as time went on and I could tolerate less and less. Every day I would come home from class and my body would crash from sheer exhaustion. My parents flew out to California and we went to a huge list of specialists including the renowned House Ear Clinic in Los Angeles. I saw 3 different doctors there, who were all 3 specialists in different fields of inner ear disorders. None of them could find anything wrong with me (go figure). The only thing they could tell me was that my eye tracking was abnormal, but he had no idea what that meant or what to do about it. 0 help. We moved on to endocrinologists, more GI doctors, and ended up at yet another cardiologist. This man was the only doctor who was of any help. I told him about my POTS diagnosis years ago and he gave me more medicine & tips to help. I was put on a medicine to raise my blood pressure and was given compression stockings. To be honest this gave me the most relief out of everything else I had tried.
I was still very ill and I knew I could not finish up school, so I moved back home to Kentucky to continue on my search for a diagnosis. My neurological symptoms got worse every single day. I felt like I had electrical shocks going through my head, I could only travel by car if I drove myself (short distances), and my migraines were a staple of daily life. By now it was January of 2011, and we drove up the New York City to see a well-known neurologist who was going to examine my MRI’s and brain scans to check for a Chiari 1 Malformation. I prayed that brain surgery could relieve all my issues. I never thought that at 22 years old I would be praying to get bad news. I just wanted ANY news, and to know that I would get relief. Unfortunately, this doctor said due to certain issues with low spinal cord fluid, and other issues with my health that surgery would only do more harm than good. He could not help me any further. So back we went to Kentucky to the drawing board. My weight had plummeted from 110 pounds to a mere 89 pounds. I knew I needed help desperately and quickly. Many trips to the ER were mixed in all of this from fainting, to pain, to other issues that I had to rush in for. I worked hard on gaining weight & pushing through the pain the best I could.
Months passed by, and I ended up getting a part-time job working with special needs children. We would do hands-on exercises with them as a sort of “rehab,” but it was made fun with gym exercises and balance games, etc. One day my manager took me into the computer room to train me on some of the exams they run on the children. She thought the best way to teach me would be for me to play the role of one of the children and have her do the test on me. As I did the visual test I failed miserably. At the time I thought nothing of it, however the next day when I saw Autistic children and those with other developmental issues pass the same test, I became worried. I printed out my results and called up my mother to tell her the news. She immediately got on the Internet to research and found a doctor in Tennessee who specializes in disorders of the eye and brain.
I obviously put no hope into the visit because the last 5 years were nothing but letdowns. However, when I met Dr. Clopton there was a different vibe to him. I told him my symptoms and my story and he listened deeply. He reviewed my odd tests results and immediately knew where to go from there. He ran test after test on me and they each made me really visually sick. I actually had to come back the next day to complete all the exams because I could not handle it all in one sitting. By the end of the second day, he sat me down and had a serious discussion with me. The tests revealed that I had brain damage; the kind you see on someone who had been in a severe car accident. I had never been in such an accident, so it was concluded that the brain damage was happening from the inside. The damage was also located in the area of my brain responsible for all my senses. That was why my eye tracking was so unusual; I had very over-stimulated senses. Driving and other movement-based activities were things that caused me great pain because the connection between my eye to my brain was damaged, and the signal was not properly sent. Dr. Clopton was an absolute angel, and to this day I will forever be grateful to him. He knew we must get to the bottom of this so he referred me to a doctor who specializes in these hard to treat mystery cases. And from this point on is where my life takes a change for the better, and I began my journey to a diagnosis.
A month after seeing Dr. Clopton my family and & I walked into the office of Dr. B. The waiting room was warm with a fire and lots of big fluffy couches. I felt immediately at ease from the second I walked in & spoke with the nurse. She took my vital signs and then took me into a separate room that had another big couch, and was set up more like a living room then a doctors office. It was so cozy, filled with pictures of Dr. B and his family. That’s when the doctor himself came into the room, introduced himself, and shook our hands. I could tell this was a kind man and the man who would help me. That day he spent 2 hours getting my entire health history. He asked so many questions and really dug deep for clues. He lined up a number of blood tests for the next morning and said he would call us as soon as he got some answers. The next day I spent 45 minutes getting blood drawn into about 30 different tubes. I knew at that moment that Dr. B was not messing around. He was going to figure it out, even if that meant running every test in the book.
A few weeks went by and we got a call to return to him to talk about my results. I took a deep breath as I waited to hear the verdict. “You have Lyme disease.” He spoke in a calm and collected manner as he told me about my co-infections (Bartonella & Protomyxzoa) and explained how it’s transmitted, what happens when it turns chronic, and my treatment options. It was a lot to take in at once, but I was so grateful to see my tests results show up highly abnormal. I have been waiting for 5 years to figure this out, and finally, I got an answer. The relief was the first feeling, following by tears of joy. He had a very specific plan to spend months first preparing my body for treatment by detoxing heavily (I learned what a herx was), and taking probiotics and other supplements. I followed his orders diligently and moved home to live with my parents full time in January of 2012.
Giving up my independence when I was 23 was so hard. I learned what all Lyme treatment entailed and I just knew I could not handle it on my own. I had mentally prepared myself for giving up school, my job, and my foreseeable future to get better. The timing of diagnosis, however, could not have gotten any better, because by the time I moved home I was unable to tolerate car rides what so ever. I moved home knowing I would be 100% housebound until I was finally cured. This was something I had to be at peace with because I knew in my heart it would be worth it in the end.
I am still currently treating this disease as of March 2016. There have been many ups and downs as well as a major relapse just as I began to gain my independence back. Needless to say, it has been a long journey and one that I continue to learn so much about. I still have many months to go, and at this point, I don’t have a timetable set. I am simply looking to take each day at a time, be gentle with myself, and continue to uncover the mysteries of this complex disease. I have been treated strictly herbally, homeopathically & energetically with no antibiotics. I am a very little girl with a fragile body and I just could not tolerate antibiotics when I tried. I first treated the Bartonella and am happy to say I am now Bart free after testing negative on multiple cultures, smears, and PCR tests! I am no longer experiencing those typical “Bartonella” symptoms and have not seen a Bart rash in months. That to me gives me hope. My CD57 levels began at the bottom of the barrel at 14 and over the course of 4 years of treatment has reached 126 and staying strong. These are all just huge milestones in my journey, and I continue now to uncover other co-infections, autoimmune issues, hormonal issues and brain damage which is keeping me from healing. It’s a complex mystery & I’ve come too far that giving up is not an option. I am determined to find a way out of this fully healed! I am in the midst of the rest of the treatment currently and it is easily the toughest fight of my life. I know if you are reading this you are no stranger to the difficulties of treatment.
Overall I feel blessed and thankful. I have connected with so many amazing people through my blog/website LadyofLyme.com as I have charted my journey to find health again. It has been therapeutic for me and has helped me be a Lyme advocate in my hometown. At the time of my diagnosis I was so uneducated about Lyme that I did not know I could even catch it here in small town Kentucky. Now I know and I hope my story can help anyone battling similar symptoms. God Bless