My Lyme Disease is Not the IDSA’s Lyme Disease – Kim Trick

Last week The Chicago Tribune published a piece entitled “Chronic Lyme Disease: Dubious Diagnosis.” I interrupt today’s regularly scheduled programming (and it was a good one – a story about my new love affair with curry!) to take a quick moment to respond.

You guys have read my reasons for writing this blog. I didn’t need to get into the nitty gritty for you to know it’s true. But there are a lot of things that I left unsaid for the sake of time, for the sake of my own pride (seriously… do you really want to know what life with chronic illness was like?), and for the sake of simplicity. This blog is about feeling better, not about how I fell apart.

However, when it comes to “dubious” information, I cannot stand idly by. So I’m jumping into this conversation to clear a few things up. For starters, my Lyme Disease is not the IDSA’s Lyme Disease.

My Lyme Disease Didn’t Play By the Rules

I contracted Lyme Disease as a child – the daughter of a deer-hunting daddy who spent more time outside in the dandelions than I did in front of the TV. It was the 80s, Nintendo was still around the corner, and my Barbies wanted nothing more than to ride grasshoppers and collect lightning bugs in a rural Ohio backyard. Deer would stop by at twilight for a quick snack. My father spent his weekends collecting their hides. We knew there were ticks, but no one worried about Lyme Disease. Besides, even if we had, my Lyme Disease did not play by the rules.

It never announced itself with a telltale bullseye rash or swollen joints or inflamed nerves, the symptoms The Chicago Tribune has listed as most common. If it did, I was too young to understand these things and my doctors were too misinformed to notice. Instead, it swapped these symptoms for ones I’ve since learned are equally as common but far less understood – an overactive bladder and a temperamental digestive system that left me with the emotional scars of a youth spent running to the nearest bathroom.

My creaky limbs didn’t come into play until my early twenties. By that time I’d developed a slew of additional symptoms – food intolerances, crushing chest pain, extreme exhaustion, panic attacks, general anxiety, chronic sinus and kidney infections, and of course constant searing pain in all of my joints and limbs. The headache had also set in. It started as a steady dull pain punctuated by sharp sensations of lightning bolts and within months progressed to the feeling of fire ants in my skull. I was unable to stand for more than a couple minutes at a time. I couldn’t sleep through the night. I struggled to carry a gallon of milk home from the corner store. No matter how much I ate I’d still lose weight, and at 26 years old I weighed just above 90 pounds. I’d undergone a colonoscopy and a battery of tests with a cardiologist with inconclusive results. By the time my tremors, drooping eyelid, difficulty swallowing, and problems with word recognition became apparent to family members, it was clear something was very, very wrong.

I had standing monthly appointments with my general practitioners. I was on several weeks of antibiotics each month for the sinus infections, kidney infections, mysterious infections with no known source that I just couldn’t seem to keep at bay. I was on prescription medications for irritable bowel syndrome and hormonal imbalances, and I had a wallet full of additional prescription scripts for anti-anxiety medications, painkillers, ulcer medications, and more that I refused to fill. I was a walking pharmacy, yet I was told “there’s nothing wrong.” It didn’t make sense, and I knew that there was a better solution than this.

I searched for years to find the cause of my progressing illness. I encourage you to read my full story here for the details as to how it was that dozens of doctors missed what should have been so clear and how it was that I was finally diagnosed with chronic Lyme Disease, probably close to 20 years after I’d contracted it. If the full story seems long to you, well… it seems long to me, too. But it wasn’t until after a long and exhausting search for clues that I even knew what Lyme Disease was. And it wasn’t until after months of wrangling with infectious disease doctors and general practitioners that I discovered the world of Lyme Literate Medical Doctors.

Making the Decision to Heal

As a patient, I never wanted to be on the controversial side of medicine. I wanted an easy diagnosis with an easy cure. I wanted a life without the presence of illness constantly looming above me. But the more I learned about Lyme Disease, the more I learned it was a controversial disease. And I realized my experience reflected the experiences of so many other patients out there. We are the ones who fell through the cracks and who were allowed to develop chronic Lyme.

Dr. Bernard Raxlen, the doctor inaccurately portrayed in the Chicago Tribune piece, is my Lyme Literate Medical Doctor. I began seeing him in January of 2008, after reading dozens of testimonies from happy patients. I received a positive Lyme Disease diagnosis, as well as diagnoses for two additional tick borne infections Bartonella and Babesiosis, only after blood work results came back positive from several different independent laboratories. My results met the Center for Disease Control’s standards for a positive diagnosis. My general practitioner, as well as a team of 5 additional specialists at two of New York City’s top hospitals, agreed it must be true.

My treatment consisted of two years of antibiotics for the Lyme and Bartonella and Mepron for the Babesiosis as well as antifungals for the intestinal fungal infection that I’d developed as a result of my weakened immune system, and high quality probiotics so that I could maintain the proper balance of good bacteria in my gut even while on antibiotic treatment. I was given recommendations for vitamin and nutritional supplements like vitamins C and B, omega 3 fatty acid, and digestive enzymes to ensure that my body was getting the nutrients it needed to fight the infections.

Dr. Raxlen and his physician’s assistant took my phone calls day and night, helping me to determine how I was doing on my prescriptions and when to push forward or when to lay off. Every few months we would reassess my regimen and switch antibiotics to keep my body or the disease from developing a resistance to the drugs.

And slowly but surely I began to see improvements. My symptoms didn’t go away overnight. In fact, it took nearly the full two years until the Lyme was gone, and working with my LLMD was only one piece of it. I spent just as much time praying and adopting healthy lifestyle changes that God was showing me outside of the doctor’s office, such as a better diet, a fuller vitamin regimen, and exercise.  I worked with physical therapists, massage therapists, and a chiropractor to help nurture my wounded muscles and joints, as well as a family practitioner and a team of five specialists at two major hospitals to monitor my individual symptoms such as the constant headaches, the chest pain, thinning hair, and hormonal imbalances. I was making progress and my other doctors could see it. Often I was told “This symptom seem to be improving as well. Keep doing what you’re doing and we’ll see how it goes.”

After one month of treatment, my left eyelid stopped drooping. After one year of treatment, the pins and needles were subsiding. After 18 months of treatment, my headache went away as quickly as it had come. For the first time in nearly 20 years, I had a glimpse of a pain free life ahead. After nearly two years of treatment, I developed more energy and stamina. I could stand up for longer periods of time without feeling weak. I was sleeping through the night for the first time since I was a child. And I was finally seeing the number on the scale climb above 97 pounds.

I would not have shown improvement in a clinical trial based on only several months of treatment. My case had been allowed to develop for far too long for that. Neither would I have shown improvement in a clinical trial that treated only for Lyme. My ticks had carried Bartonella and Babesiosis as well. Instead, it took me two years of antibiotic therapy, vitamin supplementation, dietary changes, exercise, and additional lifestyle improvements to finally reach a state of health.

As I write this, it’s been nearly one year since the antibiotics and my strengthened immune system killed enough of the Lyme Disease, Bartonella, and Babesiosis infections for me to quit my treatment and finally live in health. Since that time I’ve maintained the healthy lifestyle habits that I learned about on my path to health, which has helped me stay sinus infection and kidney infection free. The constant headache is also gone, I sleep through the night, and I’m finally able to stay above 100 pounds. It was a long slow climb, but I’m grateful that God showed me the steps to take to feel the way I do today, including leading me to a physician that was able to identify my condition and play a part in my road back to health.

I don’t doubt that it’s possible for an infection to become chronic if it’s not identified and treated within a reasonable amount of time. I don’t doubt that after so many years such an infection can make its way into tissue and bones and evade detection in the blood stream. And I agree that antibiotics should be reserved only for those patients who need them instead of injected into our genetically modified foods or used in meat, poultry, and dairy like it frequently is today. I also believe the experiences of myself and others show that Lyme Disease can be a chronic and debilitating illness that requires more than just a short run of prescription pills to cure, and it’s because of that that my heart breaks more for those who are suffering and searching for a cure and less for those who would approach their pain with skepticism and hate.