****Trigger Warning: Medical photo attached****
Hi everyone, I’m Carrie. I’m a 42 year old small animal veterinarian living in the heart of the Rocky Mountains of Colorado. I live with my two Bernese Mountain Dogs and a mustached cat, aptly named Stache. I’m originally from Northeastern Indiana, where I grew up on a small lake with my parents, older sister, and younger brother.
I never remember being fully well. I was a colicky child, always getting the flu and strep throat but oddly never ran a fever, which meant I always got to go to school. Coming from an athletic family, I was an athlete as a kid but my joints couldn’t handle it. I am super flexible and had a habit of breaking bones, 15 to date. I have had bouts of anemia since high school and the anemia was always chalked up to heavy menstrual cycles despite me explaining that I really wasn’t having menstrual cycles. I have always been more lethargic than my friends and siblings and my family always labeled me as lazy. Sounds and smells have always bothered me and I was diagnosed with anxiety and depression in my 20’s.
Despite all of that, I was still very active. I enjoyed playing tennis, hiking, biking, wakeboarding, horseback riding, and a variety of other sports. I have always been heat-adverse, making sure that my activities were planned in the cool of the morning/night or involved water. I moved to the mountains of Lake Tahoe after undergraduate school and realized that mountain living suited me well. It was cool all day long no matter the time of year and people there generally ate better foods. I thrived there; hiking, white water rafting, and sitting on the beach with friends.
When the economy turned in 2008, I left Tahoe and moved back to Indiana to attend veterinary school at Purdue University. I was notably more lethargic, had severe gastrointestinal issues, and became more of an introvert. I gained a fair amount of weight and struggled with my mental health. The stress of veterinary school coupled with a poor diet and a lot of heat and humidity really got to me. Again, I was just diagnosed with anxiety and depression and given more medications.
After I graduated, I moved to Colorado, where I once again thrived. I immediately became more active and my diet changed for the better. I lost all the weight that I had gained in Indiana and instead gained friends and confidence. I was very engaged in physical and social activities. All of that changed abruptly when I started my own clinic in 2015. I began having weird neurological symptoms in my hands and feet. Most of it included painful purple swelling in my toes and weird pinpoint burning and/or itchy sensations coupled with lethargy. I had days where climbing the 8 stairs in my house had me winded. My doctors sent me for a battery of tests, thinking I had Multiple Sclerosis (MS), which my mom was diagnosed with in her early 60s. My test results came back with a lot of things including neuritis, Hashimoto’s disease, a syrinx in my cervical spine, and Ehler’s-Danlos Syndrome. However, I didn’t have the plaques in my brain that were consistent with MS, so I was not diagnosed with that. I was told that there was nothing they could do for me, so they again prescribed me anti-depressants and sent me on my way. I just kind of lived with these worsening symptoms for another 5 years. By 2020, I was having about 12 urinary tract infections a year and a pretty consistent sinus infection that never really went away. I bounced around doctors trying to find someone who could help me figure out why I couldn’t seem to fight off any infection without an antibiotic. I went to general practice doctors, specialists, chiropractors, mind body therapists, nutritionists, and psychologists, none of whom had a solution for me.
In 2020, I went to an Ear Nose and Throat specialist who said I had severe narrowing of my left sinus cavity and proposed surgery, which I jumped at hoping it would get rid of the chronic sinus infections. After my sinus surgery all of my symptoms got worse. I became very dizzy much of the time. My ears ring constantly. I started having word recall issues and cognitive dysfunction. I was very tired all of the time and my gastrointestinal system started rejecting much of what it was fed. I felt like I was spiraling. I became irritable, pushed all my friends away, and resented having to go to work every day. I would come home and cry after work. Again, I was worked up for MS and not finding that as a diagnosis, I was told that I was just having depression issues and was put on anti-depressants.
I am sensitive to medications, so I continued to wean myself off of the anti-depressants because they make it hard for me to sleep and ruin my appetite. I am averse to most medications, feeling more of the side effects than the intent of the medications. I do not drink alcohol or caffeine well and vomit from pain killers. I would rather deal with the pain than take a pain killer.
In 2021, I started dating a new man who had a colleague that worked for a concierge medical practice in Denver. He recommended that I go there to see if they could figure out what was wrong. There, I received a battery of tests and was diagnosed with 4 species of the Borrelia bacteria (Lyme disease), Babesia, Anaplasma, Asperguillus, and chronic Epstein Barre Virus (EBV). If you aren’t familiar, that is 3 tick borne diseases, a fungal infection, and a viral infection.
I think you should know that I told EVERY SINGLE DOCTOR I had seen since my 20s that I had ticks on me as a child and that my mother was diagnosed with MS. Not one doctor until 2021 tested me for tick disease. Not one. I asked, but none of the doctors thought that tick disease was significant. After my diagnosis, I called Mayo Clinic to set up an appointment and was told that they would work up MS and not Lyme disease because they didn’t believe in chronic Lyme disease.
Since my diagnosis and treatment, my symptoms are worse. I believe that I “poked the bear” that had been happily living in my body for over 30 years. I changed my diet to a very restricted paleo, then a mast cell diet after developing Mast Cell Activation Syndrome. After that subsided, then I changed to a carnivore diet. I bought an infrared sauna and took all of the supplements recommended by my doctors. I tried really hard and made no progress. In October 2021, I started losing sensation in my hands and feet intermittently. At that point, I made the decision to go to Sanoviv Medical Institute in Mexico for their hyperthermia treatment.
I went to Sanoviv in January 2022 and since then am seeing small improvements in almost everything. They helped me figure out a diet that works for me, a modified paleo diet. I have more energy, my dizziness and ear ringing have subsided but are still present, and I feel like my brain is finally starting to function as it used to. I am happier and less angry all of the time. It is now 6 weeks after returning from Sanoviv and I’ve had a few setbacks, but most of them are related to the coinfections (Babesia) and not specifically the Lyme disease.
In 2021 alone, I spent just over $42,000 on doctors, treatments, and hospital bills, none of which were covered by my insurance. This doesn’t include the countless doctors, pharmaceuticals, and supplements that I paid for in the years prior to being diagnosed. My concierge doctor in Denver who finally made my diagnosis is not covered by my insurance. I took out a second mortgage on my home to help pay for my medical expenses. Currently, my medical expenses are about $1600 per month, which includes IV therapy, vitamin B12 injections, bee venom therapy, chiropractic care, and supplements. This doesn’t include food expense, which is strikingly costly since I have to eat such a specific diet.
My diagnosis has helped me define the important things in my life. It has made me more grateful of the good days and more mindful of my body. It has helped me to focus on living in the moment and not for the next weekend. It has brought me to meditation and self reflection. I have learned my true friends and have weeded out non-supportive friends and family members. I still struggle with wanting everyone to like me, but I have better boundaries for myself. I have realized just how strong I am as a person and that I will NEVER GIVE UP.
My advice? Spend the money on a Lyme literate doctor right away. Don’t waste your precious time and money trying to get expenses covered by insurance because those doctors don’t know what they’re doing and won’t help you. Start a Go Fund Me account if you can’t afford treatments. Stick to your diet. Ask others for help. Use the Lyme forums on social media. You are not crazy and you are not alone. Love yourself and listen to your body. And, GOOD LUCK! I’m rooting for you.
The information shared on this page is for informational purposes only, it is strictly opinion based on personal experience and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.