I’ve had several people ask me recently where my full story is. I suppose I’ve kind of been avoiding it because it’s difficult to know where it begins, and it certainly hasn’t ended. See, I’ve come to the realization that Lyme disease is not just the process of being infected, being properly diagnosed (or not), and being treated. It is much more complex than that. It is a stealthy and highly evolved bacterium that affects every person differently and to different degrees.
The severity of the infection is dependent on the presence of other co-infections or other underlying conditions such as genetics, the strength of your immune system, your diet, your mindset, your social and emotional well-being, stress levels, companionship, the list goes on. It is dependent on each individual person and their overall health. How it affects one person can be completely different from the next. Some people can harbor Lyme and not have symptoms for years, until the circumstances are just right. That’s what happened to me.
I suppose my story begins as a young child. I was always small, pale, and I got sick a lot. Not an extremely large amount, but if there was something going around, I was sure to catch it. I had a few unexplained illnesses when I was young that resolved themselves. Fast forward to my teens, and the thing that sticks out to me is all I ate was sugar and bread. All I drank was sugar. I was an angry youth. I was depressed. And I generally walked around with a chip on my shoulder.
When I was 18 I decided to become a vegetarian. I read all the veggie books, cookbooks, studied nutrition; thought I was eating healthy. And I kind of was. I was eating organic food and whole grains, at least. But I smoked, I drank, I drank an insane amount of coffee with an even more insane amount of sugar. Sweets….couldn’t stay away from them. I always felt tired, somewhat out of control, out of my body. 15 years later I went back to eating meat because my body was screaming for it.
What does all of this have to do with Lyme disease? Well, it sets up the stage for where I was physically, emotionally, mentally. I wasn’t that bad….but I wasn’t in a good place either. I wasn’t taking care of myself. Eating was something I did to make my stomach shut up. Sleeping was something I did when I couldn’t stay awake anymore.
I worked as a theatrical electrician, lighting designer, technical director, and stage manager for years. Working long hours for not a lot of pay. Loved that aspect of my life. It was my passion. Then I transitioned into working as an electrician in construction. Quickly moved up as a working foreman, estimator, project manager. Eventually I joined the IBEW electrical union.
I had a pretty good life aside from my ex-jerk who I wasted 9 miserable years on. I had a good career. I loved to go back-country hiking. I was in good shape. I started taking classes to learn how to meditate, do Clairvoyant readings and healings. I was finally coming into my own, learning to look within and heal, find personal growth. I decided to go on a Vision Quest in New Mexico in 2001 which turned out to be the most amazing life changing experience I’ve ever had. Unfortunately or fortunately, this is also where I believe I was infected with Lyme disease.
I don’t know for sure when, where, or how I was infected. I never saw a tick. I never developed a bulls-eye rash. The only thing I remember is being attacked by at least 50 deer flies while getting water out on my quest. I had bites all over my body. So after that first day I wore my rain gear to go get water. It was plastic, covered my body, and didn’t allow them in as easily. It was not long after this quest that my symptoms began to surface.
Most of them I just chalked up to getting older, having beat up my body as a kid and in my field of work. Aches and pains, joints cracking didn’t seem unreasonable. Headaches I just assumed were because of stress. When I started to raise an eyebrow was when the twitching began. I would kick so violently in my sleep it would wake me. My whole body would jerk from the force. I just ignored it.
At one point, I had developed bursitis in my knee for no apparent reason, even doctors thought I was a little young for that. Then, I started to notice that I was dropping things. I always had good mechanical ability and strong hands from being an electrician for so long. At times, it was as if my hand just randomly decided it didn’t want to continue holding what had been placed in it. A coffee cup. A tool. My keys.
Then, I started to have recurring vertigo where I couldn’t drive because the whole world would spin. It would be bad for a few days, and then take about two weeks to completely go away. I would walk into walls. My balance was off. I was very fatigued. I couldn’t seem to get a good night sleep between the twitching and the unbearable night sweats where I would wake up soaked and freezing.
Then I started having poor memory and moments of just feeling lost and stupid. I thought it was just because I hadn’t been sleeping. I just kept ignoring all of it thinking it had obvious reasons. I started getting sick a lot, my ears would ring, my muscles would twitch. I’d get random pains. I had many more symptoms, tests, surgeries, and illness than what I list here.
Then, I developed a sort of rash on my arms in 2005. It was just little red bumps. Nothing I could recognize. And the lymph nodes under my arms and in my pelvis swelled and hurt. I didn’t have a fever, but I felt something systemic was going on. I just didn’t feel right. I looked up my symptoms online and saw Lyme disease. I thought, “I doubt it, I haven’t had any ticks on me, but I’ll ask the doc.” So I went to my doctor about the rash and lymph nodes and asked him to test me for Lyme. He refused, telling me there is no way it could be Lyme. I didn’t have a tick or the bulls-eye rash, and there isn’t any Lyme in California. He tested me for tuberculosis instead.
I went on with my life until I had an injury at work. I had somehow pulled my sternum and knocked my back out of whack, or so I was told by the doctors. Nothing they could do, nothing showed on the MRI and they told me to go back to work. But, I couldn’t work for more than a couple hours without having the sharp pains radiating from my back around my ribcage, which always scared me and made me think I was having a heart attack. I couldn’t work as an electrician anymore. Now I think it probably had to do with Lyme, but there’s no way to definitively know.
Meanwhile, during all of this I had left my ex-jerk, gotten my own apartment, and was swept off my feet by the love of my life, my husband. He swept me right to Connecticut, where I began to work as an estimator/project manager for an electrical contractor. A few years later we were married. Hindsight, I realize that right before the wedding I had taken antibiotics for a sinus infection. By the time the wedding came around, I felt better than I had in years. I thought it was just because I was getting married!
About 6 months after our wedding my normal symptoms that I had been ignoring for years started to get worse. My knee swelled and hurt to walk on it, yet I hadn’t done anything to hurt it. I was working overtime, and I was home…sitting on my tail the whole time. How could I have hurt my knee? It got to the point where I couldn’t drive my truck anymore because I couldn’t push the clutch in.
I went to the doctor, and she sent me to an orthopedic surgeon. The first one I saw immediately gave me a cortisone shot, without X-rays or an MRI. Little did I know this would prove to be detrimental for Lyme. He arrogantly said, “You will walk out of here like you never had pain.” As I was limping out, he saw me and said, “Feels better, right?” I winced in pain, and said, “No, it’s actually worse.” He gave me a disapproving look and said, “Give it time, you’ll be fine in a couple hours.”
Well, that didn’t happen. It got much worse. I went to another orthopedic surgeon, who took an MRI and found there was a “chip” missing out of the bone on the side of my knee. He insisted I must have stepped hard or fell or did something to injure it. I insisted that wasn’t possible. He dismissed it and said I must not remember. He said all he could do was surgery to try to clean it out and induce healing. So, I scheduled the surgery. Little did I know at the time that both Lyme and Candida are capable of causing that type of damage.
A few weeks before the surgery, an accident happened at my workplace stopping all work, and I didn’t know if I was going to keep my job or what was going to happen. So I cancelled the surgery. Meanwhile, I had made an appointment with a new general practitioner. I went for my normal first appointment physical. I’ll never forget this day. It was in February 2010. Almost 10 years had passed without any answers. I went with a list of symptoms.
My new doctor, without ever doing a blood test, knew the moment she met me that I had Lyme disease, and suspected Erlichiosis. She had suffered herself with Lyme, and had to be on IV antibiotics to treat it for an extended period of time. She knew the ugly face of this disease first hand. She tested me, and it came back positive. She immediately started me on Doxycycline, and I started to have the Herxheimer Reaction.
I’ll never forget seeing the PA at that doctor’s office when I went for a follow up a month later and she said, “You must be feeling better now that you’ve been treated for Lyme disease.” I just looked at her. I didn’t know what to say. I was actually at my worst moment in treatment and I felt like I was going to die.
I was on antibiotics for 11 months. During that time I can’t even begin to tell you the pain that I endured. The twitching, cramping, brain fog, loss of words, no sleep, anxiety, heart palpitations…..it just didn’t end. I had to continue to work, and often I was working 50 hours a week at a job that required me to be detail oriented and on point.
Probably the worst day I had was when I drove home from work, drove past my exit and kept driving to my last job. I got halfway there before I “woke up” and realized where I was. Then, I went to order Chinese food and I’m on the phone, staring at the menu, and I couldn’t read, think, or speak. I had to hang up the phone. It was terrifying.
There were many times during treatment that I didn’t know if I was going to make it; if I had it in me to keep fighting. And I did not have it anywhere near as bad as most do that encounter this disease. I have a high tolerance for pain. I didn’t have the paralysis and complete disability that many endure. For that I am grateful.
But I did have my husband, my Mom, and a few friends (not all of them) that stood closely by me and cheered me on. They would not let me give up. They kept reminding me of how courageous I was, and how strong I was, and that they knew I could beat this thing. They kept my hope alive.
After 11 months, I started to feel worse, not better. I began to become concerned that the treatment wasn’t working. I started doing some research and found some information on Candida (yeast). I found that symptoms are almost identical to Lyme symptoms, and that if not treated, it can kill you. My doctor had told me to cut out sugar and take probiotics while on antibiotics, and gave me Fluconozole to keep it in check. But, I don’t think I ever realized how crucial it was to eat a strict diet during treatment. I just didn’t listen.
I went for a follow-up and talked to her about it. She agreed, and told me to stop antibiotics; even though I had not gone 2 months symptom free. It saved my life. She did some tests and found that my Lyme test was now showing negative, and a Candida culture showed that I did have an infection. She put me on Fluconozole daily, and told me to adhere to a strict diet. This was probably the hardest part of treatment for me. Everything I knew had to change. No more sugar, no more bread, no more alcohol, no more grains, no more milk or cheese. I thought I was going to starve.
But, after a couple weeks, I started to feel so much better, and I had already lost over 10 lbs. After 2 months, almost all of my symptoms had vanished and I felt better than I had in years. After 4 months, I had lost 30 lbs., my weight had stabilized, I was symptom free, energetic, and I had my life back. I was amazed. It came out of nowhere. I wasn’t even expecting it, I had been sick for so long.
I decided to share my success on the forums, and found it was met with great resistance. Not only was I told that it would only be a matter of time before my “remission” would cease and Lyme would return, but the whole idea of Candida being an issue was completely dismissed. I was shocked. Appalled. Here I wanted to share what seemed to me to be a pretty important key to the puzzle, and I was told I didn’t know what I was talking about. My own Lyme community was not supportive of me and my experience.
So, I decided to make my website, www.LivingLyme.com . I realized there was a voice that needed to be heard. Not only did I believe in and experience Hope and Success, but I knew that there were many people out there suffering with Candida and being treated for Lyme. I knew that this information could help a lot of people get their lives back as much as possible.
I thought I was cured. So, I went off the diet. Within a week I started to feel sick again. This was when I realized that just because your symptoms are gone, does not mean that your body has completely healed. It takes a significant amount of time to completely restore your health. I was at the beginning, not the end.
For the next 6 months I struggled with diet, fighting Candida, diet, diet, diet, diet. This was my biggest struggle! Give me a pill or herb to take and I’ll do it. But stick to a strict diet? I didn’t have the time, the energy, or the will power to do that. And the most ridiculous part of it all is that I knew that when I stuck to the diet, I felt fantastic. And when I went off of it, I went way off of it, and got sick again.
It took me another 10 months of research and writing to finish the website. It evolved into much more than I could have ever anticipated. During that time, I learned more about this disease and about myself than I could have ever imagined. I learned so much more about Nutrition than I had in the 20 years of studying food and nutrition and alternative healing methods. I gained a much deeper understanding of the human body, and the mind-body connection. I learned what it means to surround yourself with allies.
The most valuable lesson I have learned is the importance of taking care of myself, inside and out. I am still grasping this, and embracing it. I still have much more to learn. But what I do know is that no matter what treatment you choose, whether it be conventional or alternative, it can only do so much to fight this persistent disease.
Success is completely dependent on the individual person. On how well they take care of themselves. Mind, body, spirit, emotion, social, environmental, every aspect comes into play. If you are not healthy overall, you will not succeed.
There is no guarantee for some that the Lyme spirochete can be completely eradicated. There is no magic bullet or quick cure. There is no ONE WAY that works for everyone. And until we have more accurate testing, there is no way to know for sure whether the Lyme spirochete still inhabits our bodies once symptoms and treatment have ended. There is no guarantee that you will beat it without some permanent damage. I have some, my knee and my back will always hurt me to some degree.
Yet, even with permanent damage, I am a success story. Even with all of the pain and suffering, the misdiagnosis, the abandonment and fear that I endured. I would not take it back for anything. The valuable lessons and gifts that I received from my experience are worth every bit of struggle.
The important thing to realize is the incredible opportunity to learn what it means to take care of you. To eliminate the toxins from your life whether it be physical, mental, emotional, social, environmental. To heal yourself from the inside out. To recognize that you are courageous, you are strong, and you can get through this.
Your experience will not be like mine, or the next person. It is unique to you. But I guarantee if you are up for the challenge, you will come out of it a better person. A more compassionate, understanding, and patient person. You always have the choice to wallow in misery, resentment, and the victim mindset. To scream at the world, “Why me?” But, you won’t beat this disease that way.
Currently, I am learning on a very deep level just what it means to take care of me. I believe that the key to success with beating this disease, keeping it away, and preventing other chronic diseases is to take care of yourself every day. Not just in between when you’re busy or when you feel like it. But every day. Your first priority should be your own health and well-being. Only from that place can you truly benefit anyone else around you.
There is life before, during, and after Lyme disease. Hope is where it all begins.