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Story 68

© Illustration by TML.
How has Lyme Disease affected your life? What inspires you?

This is me at age 7. Based on symptoms and my medical history, this is the age when we suspect I was first infected. I did not receive a diagnosis until I was 24, almost 20 years later. I got sick the way Hemingway says you go broke; “gradually and then suddenly”. My symptoms started with psoriasis, severe anxiety and panic attacks, severe acid reflux and gerd, hallucinations, insomnia, chronic sinusitis, chronic sinus infections, chronic strep and chronic daily migraines.

By my junior year in high school, my health was unrelenting with no apparent cause and my symptoms were only becoming more serious. I had some OCD behavior, was anorexic and the anxiety and panic attacks were through the roof. I never slept and I mean never. I was at the doctor’s constantly and every single time they told me I was fine. I was just “anxious or stressed or both”. I knew they were missing something huge, but there was no one who would investigate past the normal 15-minute appointment.

The next wave of symptoms were even scarier. Neurological and cognitive symptoms all mimicking diseases like; MS and ALS. I was stuttering, couldn’t remember words, or people’s names, couldn’t remember how to get to places I’ve been driving to my entire life. I developed facial palsy on my left side. Couldn’t use my hands, or grip anything and after a lifetime of being an athlete, I could barely make it up a flight of stairs.

The fatigue was unreal. I was barely functioning, barely human. If it wasn’t for a friend who suggested Lyme disease to me and to look into seeing a Lyme literate doctor, I am certain that I would still be searching and would likely be disabled by now. I was diagnosed with and tested positive for the tick and vector borne diseases; Anaplasma, Babesia, and Bartonella. Because the bacteria had been running rampant and unchecked for 20 years, I had also developed Candida, which is systemic yeast, small intestinal bacterial overgrowth, hypothyroid Mast Cell Activation, small vessel disease and 22 food allergies. Mainstream medicine missed all of this for two decades.

By the time I saw a Lyme literate MD I had had three negative Lyme tests and been tested for everything else under the sun. In their minds I was making it up. I never got the bullseye rash, I never got the flu like symptoms after a tick bite, that the CDC and mainstream medicine says you have to have. I wasn’t even tested for Lyme disease until I was 23 and I was never tested for other tick and vector-borne diseases.

Ticks are not the only things that carry these diseases; ticks, mosquitoes, fleas, lice, mites and cats for Bartonella specifically all can transmit. They can be passed down in utero, potentially sexually transmitted and through blood transfusions. If you do not treat within a month of being infected and do not treat long enough in the beginning, you’re considered chronic. There is no cure for these chronic infections, you will have them for the rest of your life. You are then fighting for remission and once reached, have to keep your immune system in check to try and prevent a relapse.

I am three and a half years into treatment, by the time I’ve reached remission, it will have been 4 consecutive years of treatment. I completely lost the ability to skate, or really do any kind of exercise, something I’ve been doing since I was 4 years old. I have spent the majority of the last 6 years completely sedentary. I take 80 pills a day, as well as, two spray medications, multiple powders I have to drink and I have a rigorous detoxing schedule which includes; drinking lemon water and aloe, Epsom salt baths and an infrared sauna.

My eyelashes go through cycles of falling out due to the treatment. I haven’t had eyebrows in years, thanks to doctors missing my hypothyroid for over a decade. My hair has thinned and I was forced to chop off several inches and due to having chunks of hair just break off in random selections.

I have gained 25 lbs in inflammation in 4 months and I’ve gone up four pant sizes since I started treatment. The number one thing I hear from people when I tell them I’ve been sick, is how good I look. What you see is layers of literally false pretense; layers of makeup, false eyelashes, fake eyebrows, and my interim clothes. Please don’t forget – Behind the makeup and my happy pictures on Facebook, I have been fighting for my life for the past 4 years.

I have contemplated taking my own life many times during this treatment journey. As it often felt like there was no end in sight, that I would never be well again and that the pain didn’t seem worth the possible outcome. I am now closing in on remission for the first time in 6 years, I am back out on the ice. I am no longer the same person, and I’m not sure how you could be after going through something like this. I haven’t recognized myself in the mirror in a really long time, but I realized that I have to keep fighting to get better and that everything else will come after that.

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