My Lyme Story

Hello all! My name is Megan Hanson and I would love to share the experience of my battle with Neuro-stage Lyme Disease to expand awareness and knowledge of this disease. Here is a shortened summary of my story.

I was diagnosed with Lyme Disease in December of 2016 after three years of unexplainable symptoms and misdiagnoses. During my freshman year of high school, I began to experience achy spinal pain and extreme fatigue. When I was so tired I constantly slept through the day after making it home from school, my mom insisted on bringing me to our Primary Care Physician at Evergreen. The doc found my Red Blood Cell Count was extremely low and told us if my Hemoglobin levels didn't come up in a month of supplementing with iron, she'd be ordering a blood transfusion. Although my levels improved with iron supplementing, I felt extraordinarily worse afterward, missing school and sleeping all day. Throughout my sophomore year, my immune system became depleted for reasons unknown. I was always sick with something, whether it be Epstein-Barre, Walking Pneumonia, Strep throat, or your common cold. I ran for about a month longer until I physically couldn’t. Extreme dizziness, lightheadedness, heart palpitations, skipped beats, and numbness in my feet would occur while I was on the treadmill and hours after. Sharp spinal bone pain and landed me in the ER too many times to count as I slowly became bedridden; if I was to get a fever at any point, GBS and Leukemia would be under immediate suspicion. In April, the pain became so severe I experienced a loss of consciousness and was later put on a morphine drip.

In the first week of June I was admitted to Children's so I could be monitored; nothing was found in the four days I stayed there. When we told the adolescent hospitalist and two main hospitalists handling my care that my osteoporosis couldn't be from inactivity, they then blamed it on my mild scoliosis since they couldn't find any other medical explanation. The only tests they ran there were CBC's, which we were constantly told were completely normal. When I was being discharged, we had to push to get copies of the labs, and when we received them there were several large abnormalities. My white blood cell counts had a pattern in the labs of being high - we weren't told any of that.

Once it was time to begin my senior year, I missed a chunk of school in early September to participate in Children's Pain Rehabilitation Program (PReP). Their slogan was ‘Fake It ’Till You Make It’; in other words, pretend you’re not in pain until you actually aren’t. They believed I had Chronic Pain of no cause. Being constantly told I was in pristine health, me and my parents always knew there was something wrong and we'd eventually find it. It wasn't until a couple months later when I was finally diagnosed with Lyme Disease. Out of the smartest, most famous specialists in the greater Seattle area, a Naturopath inside a small Private-Practice in Bellevue was the one to eventually suspect Lyme after months of working tirelessly to figure out my case – he suspected things such as Wilson's Disease, HPP, autoimmune diseases, Guillain-Barre, and Celiac. He said to us, "This is the only thing left I can think of that it could possibly be at this point." He gave me a symptom checklist and ran an Immunology Lyme test called iSpot. It works by tracking your body's T-Cell response to antigens commonly seen in Borrelia burgdorferi (the main bacteria of Lyme), which has 300 different strands. The ND explained the positive result and said to me and my mom, "I believe you may have Lyme Disease. Now, people are commonly misdiagnosed with this, so I don't feel comfortable giving you a diagnosis. I've never diagnosed anyone with Lyme. I prefer not to get political." At the time, we were deeply confused as to how a diagnosis for something I'd just tested positive for could possibly become political; little did we know the CDC actually strictly forbids treating Lyme for more than 28 days even though they admit on their own database that their treatment does not cure Lyme, or even kill the primary bacteria involved in it.

So, after that, we had much learning to do; having never been bitten by a tick nor living in a tick-infested area, I was extremely skeptical at first. In our research, we'd later find out fewer than 50% of Lyme patients recall a tick bite and 50% recall no rash. At our next appointment with a Naturopathic Lyme Specialist, I was given a clinical diagnosis and after some labs, an official one. She told us the reason she acquired her Naturopathic Doctorate was to treat Lyme patients by working around the CDC, giving hope to late-stage patients. We spent upwards of two grand a month on her treatment while constantly fighting for coverage with our insurance company. Loads of other expenses for testing, imaging, and immune support stacked up. Some months, I was put on a medication that costs 3 grand a month that also had completely no coverage.We learned Borrelia burgdorferi bacteria (the primary culprit of Lyme) can consume bone tissue, muscle tissue, and Red Blood Cells, landing the patient severely weak, anemic and osteoporotic. The bacteria survive by taking your nutrients derived by certain foods. Of all things, that resonated the worst with me – having to go on a goddamn diet! After leaving her office that day, it was easy to believe nothing we had just heard was true, however after much research we found all of it was. What we discovered in the midst of this was absolutely horrifying. Patients described being treated for years on end, some decades or their whole lives. In the East Coast, many reported their whole family was sick (in tick-infested areas) and oftentimes all had different manifestations of the disease. Depending on the patient and specifically the sequence of their DNA, the Lyme can choose any organ/bodily system to primarily attack since it is a multisystem disease; within two weeks, it’s everywhere in your body. Other diseases can be triggered by this – we have been told I would have developed Multiple Sclerosis if I hadn’t begun treatment when I did.

Within a few months of being treated by the Naturopathic Lyme Specialist with antibiotics, antifungals, and dozens of probiotics, I was feeling so much better, however on my 7th or 8th month in I hit a plateau. In early June, I woke up just a mere week before prom and found myself with short and long-term memory loss, extreme trouble interpreting words, completing tasks in the correct order, double vision 24/7, extreme brain fog, head pain, and a completely warped sense of time. We called the doc, who immediately told us I needed IV antibiotics STAT; the bacteria were attacking my brain, where the oral meds couldn’t get to. We found a promising treatment in California with a Lyme-famous doctor named Stephen Harris. Immediately after our first appointment in his office with another doctor on his medical team, I was put on intramuscular shots of Rocephin - a very safe drug commonly used to combat meningitis - for one month. All of it had to be done from home since once again, no hospital-practitioner can aid in my treatment. My mom received a teaching and gave me the shots herself.After that, I had a Peripherally Inserted Central Catheter (PICC) Line put in on the inside of my left arm to begin Intravenous treatment, which began with IV Rocephin. Things only went upward from there; my treatment of both IV Rocephin and Azithromycin have given me so many aspects of my life back. We truly believe my doctor is the best doc we could have possibly chosen to treat my Lyme - almost two decades of experience in the specialty go without saying. He has battled the CDC in court with hundreds of patients to prove how he’s saved lives with this safe and effective treatment.Although I still have persistent symptoms, my neurological health is no longer deteriorating before my eyes and I am slowly recovering and seeing my body improve. When I was about to go on my third PICC line, we finally got me a port, which is all healed-up and accessed now. I am slowly getting back to all my hobbies and beginning to see there is an end in sight of this disease; although I will never technically go in 'remission' since no doctor has fully killed off Lyme yet, my symptoms will and have become less and less severe and my ups will only get higher and higher.