I’ve been putting off writing this story for a long time now. For the past two years I have lived, eaten and breathed an illness and to share it with the masses only makes it feel all the more real. However, it is May and thus Lyme Awareness Month. I have been blessed with a wonderful platform here on The Conversation and feel it would be remiss for me not to share my experience to help educate others. I’m taking a deep breath. I’m starting at the beginning.
It was March 19, 2010. I won’t ever forget the day. It will forever remain a dividing line, bold and clear, a before and an after. I woke up feeling like I might be coming down with a simple cold, just your normal rundown, scratchy throat experience. I went about my day, had dinner with a friend, went to the Lakers’ game with great courtside seats and called it a night. The next day it was evident. I definitely had been hit with some kind of bug.
One day stretched into two which stretched into three which stretched into four. Normally, I can power through most any illness. It takes a significant amount to knock me off my feet so when I was still down for the count, I knew it was probably time to see the doctor. My lymph nodes were swollen, I could barely get out of bed, I ached all over, I was experiencing a bone crushing fatigue but I wasn’t yet worried. I assumed my body was just taking a hit. I had just finished an independent feature film in Los Angeles, working six days a week, coming off the tails of a larger feature film in Atlanta straight before that. I probably had just worn myself to a nub and was paying for it in the way of a mean flu. I am notorious for not setting boundaries for myself and not knowing when to quit.
After seeing my General Practitioner, I was treated for Strep and Tonsillitis. I informed her that something felt a bit off about it. It was different than other Strep experiences I’d had in my lifetime. I felt very zoned out, very outside myself. I could stare at a wall for hours. Zombie-like. It was off putting. I was barely there. I was put on a course of antibiotics and a week later, with a bit of a better feeling throat but a heightening in fatigue and energy loss, went back to the doctor. This go round I was told they realized the Strep and Tonsillitis had been a symptom of what the real issue was. It was, in fact, a re-occurrence of Mononucleosis. Great, at 29 years old I was getting a teenager’s kissing disease. For a girl who wasn’t in the habit of lots of kissing at the time, it felt like irony at it’s finest. I was told to rest an enormous amount and take care of myself. I just had to let it run its course. It could take a month or two. A month or two?! Who has that kind of time? Certainly not me! It didn’t matter though. My body was downright forbidding me to keep going.
After a couple weeks, I became so ill, I knew I needed extra help. My friends were chipping in here and there but I have always been terrible at asking for assistance. I pride myself on my independence and this was truly a first. I boarded a plane (don’t ask me how) and flew to my parent’s so my mom could help care for me. She was my nurse, day in and day out. Four weeks of being so sick I barely spoke a word, the fog finally started lifting. I decided it was time to go back home. Thank God, I was finally coming out of it. Or so I thought.
After a few weeks of being home in LA, I began gradually building up to one or two small activities a day. Yet, I was still struggling with my energy, my aching lymph nodes and an overall flu-like feeling. How had I gone from this healthy, active, energetic 29 year old to struggling to even maintain daily functions? Something was not right. My GP ordered a brain scan and a soft tissue neck scan. At this point, two months had passed. My lymph nodes were a serious source of concern. I had little control over my voice and the doctor wanted to cancel out the idea of a tumor somewhere that could be causing something like this for such a length of time. We ordered more blood tests on top of more blood tests.
My tests came back clean and the doctor fell back on the idea that I really just had a severe case of Mono. I had to let it run its course. It could take anywhere from 6 months to a year for an adult to recover. I could possibly be in this for the long haul, I just needed to be patient. Well, listen, patience is most assuredly NOT my strong suit. I like to do what I want, when I want with who I want. I began trying to build up my endurance. I started seeing improvement. On good days, I could even get in a mild hike. I felt like I was progressing slowly but surely.
I was offered another feature film shooting down in Atlanta. They needed me there in 36 hours. I was to be there for 6 months. I’m used to these kinds of calls. Short notice, picking up and leaving for months on end while you work your tail off to get a movie made. It’s all part of my career. I accepted the offer against my better judgement. (I told you I don’t know when to quit!) In all fairness, I thought I was going to get better, I thought I just needed time. I would do the best I could to take care of myself while working. I had already been off of work for 2-3 months. It was time for life to start up again. I would just have to keep up.
After 3 months of working on the project, struggling to get through my days, while completely crashing on the weekends, it was becoming more and more apparent that something was severely wrong. I was not getting better. I was barely able to function. I was JUST getting by. By the end of each day, I felt like I was getting the flu all over again. I was incredibly fatigued and aching all over. My voice would go easily. I would wake up feeling like I had not even slept. Exhaustion is not even the word to describe what I was feeling.
It was at this point, I started seeking more answers and seeing doctors while in Atlanta. I was sent to the Infectious Disease Specialist, the Rheumatologist, the ENT, the Neurologist, all to no avail. Blood test after blood test, appointment after appointment. Each of my doctors was able to acknowledge how ill I was but none of them were able to figure out why. When he or she couldn’t help me any further, they sent me to another doctor who they thought could. I was beginning to get scared. Why could no one help me? Where was I supposed to go from here? I was barely hanging on. Do they have any idea who I used to be, how strongly I used to live and work? In spite of all of this, I was getting my job done. I was making sure of it. I don’t even know how I got through my 12-15hr days. Looking back it was fairly miraculous.
And, then I hit a wall so big, it was all too evident to everyone how very sick I truly was. The producer I was working with at the time sat me down. ‘You can barely speak, you are so incredibly ill, you have to take the time and figure out what is going on. Take a few days off work, no arguments.’ It was embarrassing to realize that other people had to step in to force me to take care of myself. I took the time. It didn’t help. I knew the decision I had to make. I had to leave the job. And, apparently, I was the last person who had come to this conclusion. When I sat my bosses down to discuss my leaving, they were relieved. They knew how much I had been struggling, how sick I was. They were all worried and wanted me to get the care I needed, to figure out what this was. If they needed to call in personal favors for topnotch doctors, they would. If they needed to take me to specialists, they would. They were calling someone else in to take on my job responsibilities but were going to continue paying me for the rest of the project. They knew how serious this was because they knew ME. They knew I never would have gone down without a fight, never would have let this beat me if I could help it.
At 29 years of age, I had to go on disability. I can’t explain how pride swallowing and heart wrenching that was for me. My family was worried sick. My doctors were baffled but trying. And in the meantime, I was getting sicker and sicker. My symptoms were in a flared state, I was gasping for air, barely able to breathe. I could barely hold my head up, my eyes could barely stay open. My body was simply shutting down. The feeling of being so ill and knowing not one soul can help you is a frightening reality. I was living at my brother’s so my family could help care for me. My life had come to a grinding halt. It had been turned upside down and was frozen in midair.
My Neurologist, at his wit’s end, decided it was time to refer me to The Mayo Clinic. We would have to wait a couple months to get in but we were going. Come January 2011 (almost a year after falling ill), my brother and I went to Mayo. After a week of more tests than you can imagine, we walked away with an unsatisfying diagnosis of Chronic Fatigue Syndrome. I was heartbroken. I knew this wasn’t CFS. I knew myself. I knew what had happened to me, who I was previously, what my body had been capable of, how suddenly this had all come on. It wasn’t an acceptable answer. We weren’t done looking. I wasn’t giving up. I was fighting for my life.
After Mayo, I started improving a small amount. We thought things were looking up. But, as usual, the cycle of falling incredibly ill happened all over again. I hit another big wall and it came crashing down on me. We went to Florida to see another Neurologist. After a month and a half under his care and on his treatment, I was worse than when I had started. He was trying his darndest and finally admitted to not knowing what else to do to help me. He did not want to let me go though. He wanted me well and would stand by me until he found someone who could help me, in the country or outside of. He felt strongly there was an underlying infectious agent that was causing my illness. I wasn’t like other CFS patients he had, I was incredibly sick and it seemed to worsen in a cyclical nature. He thought Lyme may be a possibility.
During this time, my symptoms were just as bad and I was acquiring new ones. My eyes became very problematic. They would ache so intensely, I could barely focus. I was sensitive to light and motion. My limbs would be so heavy, I could barely move. There were days when I could not get out of bed. It felt like an elephant was standing on my chest. I had muscle twitches, drooping eyelids, tingling/numb legs, cognitive issues and the list goes on. Looking back it is clear these were all neurological symptoms. I was a whisper of my former self, a shadow of the person I used to be. I had lost her and was beginning to forget who she even was.
At the hand of my suspecting Neurologist, I was referred to a Lyme & Co-Infection specialist in upstate New York. He had a 6-8 month waiting list. So, we waited. We waited for 3 months. I began seeing an alternative medicine doctor during that period. Unaware of my Neurologist’s suspicion, after reviewing my enormous binder of medical files, my alternative medicine doctor indicated he felt Lyme was the culprit. He started me on an herbal program. We were making very small shuffles forward. I was willing to do anything. I needed some kind of relief. Time was passing me by. I was so sick and everything I had ever worked for or wanted had completely been ripped out of my grasp. It was horrific on levels that many will never understand. I was losing my life. Nothing was in my control.
Then, we finally got in to see the Lyme Specialist. August 8, 2011. After a little under one and a half years of hell and no answers, I was officially diagnosed with Lyme Disease. What every other doctor had missed and two had suspected, this doctor knew. I tested positive. I absolutely, unequivocally had Lyme Disease. I was relieved but it was short lived.
The Lyme Disease that you have most likely learned about involves a tick bite and a bulls eye rash. The part that most do not know is that fewer than 50% of individuals do not acquire a bulls eye rash or recall a tick bite. (I was one of them) If caught very early, a 2-4 week course of antibiotics should clear you right up. This is the Lyme most people know about. Catching it early is key. It infinitely improves your chances. These ticks hang out in wooded or grassy areas. They are the size of the period at the end of this sentence. Please protect yourself.
As a Lyme patient, you quickly learn that this illness is a vast sea of murkiness. It is an evolution in shades of grey. It is heavily debated in the medical community. There are two camps split right down the middle: those who believe in Chronic Lyme Disease and those who do not, those who abide solely by CDC guidelines and those who recognize the high number of missed positives in common Lyme blood tests so they clinically diagnose, those who only treat with short-term antibiotics and those who treat with long-term.
My Infectious Disease Specialist never tested me for Lyme because I lived on the West Coast. The misinformed idea that Lyme is only prevalent in the Northeast is far from true. With air travel and human/industrial encroachment into natural habitats, the idea of it being localized is absolutely false. Lyme is an epidemic and spreading all over the United States.
The two tests used for Lyme Disease are both unreliable, the ELISA (65% reliability) and the Western Blot (with 20-30% remaining seronegative who are actually positive). As stated, I tested positive for the Western Blot and have been clinically diagnosed with the co-infection, Babesia. Certain doctors argue that long- term antibiotic therapy is harmful, while others feel it is what presents the best chance at recovery. In the form of treatment options, there are no definitives. It is trial by fire. For people that have gone undiagnosed as long as I did (and believe me I am far from the only one), Chronic Lyme Disease is a reality. There are thousands of people who have been misdiagnosed or who have gone undiagnosed for years. Lyme is called The Great Imitator because it masks itself as so many other illnesses and can be very hard to detect.
I’ve been on oral antibiotics for 9 months (accompanied by herbs and supplements) and just recently had to have a PICC line implanted for daily IV antibiotics. I can have my PICC line for anywhere from 6 months to 2 years. It takes a warrior to deal with Lyme. In many ways, the medications break you down to build you back up. It is a constant battle but I will do whatever it takes to regain my health. Insurance has been great up until recently. We are now beginning to get the denials that so many Lyme patients talk about. The bills will begin adding up. I am still unable to work but am trying to stay positive and seek new, alternative routes for my future. Writing is one of them. My family is my rock and I would not be here if it wasn’t for them.
I also want to mention that many Lyme patients choose to go an alternative route. Some had have success using herbal protocol, naturopaths, alternative medicine doctors and the like. Ultimately, as a patient of Lyme, you have to try to find the ‘cocktail’ that works for you. For me, it’s been a combination of the herbal and antibiotics. We are seeing some improvement but not nearly as much as I would like. However, I am in a better place now than I was a year ago and for that, I am thankful. I am working on my patience and my positivity. Those things make an important difference.
My every day can be tough. Some days are better than others. I have to accept the reality that some people recover and some people do not. This can be a battle I am fighting for the rest of my life. I would like to think otherwise. I am fighting for it to BE otherwise. I want the quality of life that I deserve. I won’t stop until I get it.
I’ve lost A LOT along the way but I have to remind myself I have gained in many ways as well. I am a different person than I ever would have been if this hadn’t happened. There are some days I feel well enough to catch a glimpse of the girl I used to know. I’d like more than anything to see her every day of my life, from now until my last. I am using all the strength I’ve ever owned to battle an illness that has a lot of missing answers. My amazing and wonderful doctors are puzzle piecing the best treatment for me. It takes time, it takes effort and I am the guinea pig. No one Lyme patient is the same. Both symptoms and treatment can range vastly. Add a heaping tablespoon of controversy and it’s very easy to get overwhelmed. It’s easy to feel lost. My support system reels me back in.
Finally, I want to say how emotionally devastating an illness such as this can be. It’s isolating. It’s misunderstood. Your body is ravaged. The medical community is still searching for answers and solutions. You feel like no one can possibly know what you are going through and, in many ways, this is absolutely true. The open ended-ness is difficult to grasp, the unknown is terrifying. I quite simply have to have faith. And, I do. I have faith I have more to give, more to accomplish and more to achieve. I will fight, no matter how long the war. I will truly live again. Although it’s hard to see the light at the end of the tunnel, I know it is there.
I want to commend anyone struggling with an illness, acute or chronic. It takes a strength you never knew existed within you. I am grateful to now know it does. On the days you feel you cannot take one more step forward, you do and eventually you look back and realize how far you’ve come.
To learn more about Lyme Disease, please go to http://www.ilads.org/
Also, a very informative documentary, Under Our Skin, can be found on Hulu (free) or Netflix for viewing.
Please educate yourself so we can shed light on this growing disease.