Living With Lyme

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Of course, as a child, it was hard for me to verbalize what I was feeling and put the puzzle pieces together. One day it would be lack of focus, another day an upset stomach, then overall body aches and pains. It was hard for the adults in my life to take me seriously. At school it started with learning difficulties and struggling to focus on my schoolwork. My teachers complained “I was in the clouds.” Physicians used obvious and common diagnoses such as Dyslexia and attention disorder. At the same time, I would catch every cold or flu that would circulate our school, resulting in me missing many days of class and having a hard time catching up to my peers.

In high school I fought through the discomfort in an attempt to be a normal teenager and live a normal life, that’s all I wanted. I was very active, playing volleyball, on cheer and dance, and my body was always aching and I was always fatigued. Was it growing pains? Not if you asked me; it was worse and more widespread, but what did I know? The constant fatigue during the day and restlessness at night made sleeping a daily challenge. The feeling of being “wired & tired” was always a real thing for me around midnight. It would increase my anxiety and depression and weaken my immune system overall. I would constantly complain to my mother about not wanting to get out of bed, feeling unbearably tired. She took me to see a specialist who diagnosed me as a “dramatic teenager.” Yep… seriously!

The fatigue and lack of proper care led to serious depression, generalized anxiety, and mood disorders. I was sensitive to everything and everyone. I started getting weird allergies to food, serious stomach issues, I didn’t have a normal menses, loss of color in my skin left me looking pale. The constant joint pain and body aches, fatigue, and lack of sleep made me irritated and unhappy. The brain fog continued to worsen; I felt stupid and incompetent. I couldn’t for the life of me remember anything important, not even my locker combo.

Finally, I went to see another specialist who told me I had a gluten allergy, so for the next 13 years I went gluten free. At this time no one knew what gluten was. There were no alternatives on the market, making my options limited. I started self-educating and healing myself with food and supplements. Simplifying my diet seemed to help my gut, but everything felt impossible. I became more and more of a hermit. I didn’t have the energy to socialize, hang out with friends, even talk to people. I just wanted to disappear and die. Truly, it got very dark.

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In 2009, my mother brought me to one of her work events where the speaker was Dr. Dino Prato, founder of Envita Medical Center in Scottsdale, AZ. Dr. Prato was a leader in Lyme research and treatment. Being from Southern California, Lyme disease essentially didn’t exist and was totally foreign to my physicians; never truly on their radar. Dr. Prato started to explain more about Lyme disease and the wide variety of symptoms and their evolution. Everything he said was exactly what I was experiencing. It was like he was talking directly to me. I turned to my mother and told her this is it this is what I have; Lyme disease. We flew to Arizona the next week and I underwent vigorous testing. A few months later my results came back and I was positive for active Borrelia Burgdorferi Lyme and multiple co-infections. While the news was frightening, it was also a huge relief. We knew what was wrong, and now we could treat it.

But 10 years ago, Lyme treatment was just being researched. They had an idea of what would eradicate the bacteria, but it was also a very sneaky and difficult bacteria to kill. It is not your basic cold bacteria that could be knocked out with a Zpack. The spirochaete bacterium looks like a cork screw that burrows into the cell wall. At the time, antibiotics could not penetrate the cell wall so they had to breakdown the biofilm (or cell wall protection) to kill what would be hiding underneath the surface.

During those three months in Arizona, I underwent daily IV treatments Monday through Friday from 8 am to 5 pm. We started with Oxybosh in the morning, where they would take blood out of my body oxygenize (using Ozone to clean the blood) then put in back into the body, helping to fight the infection and also help to transfer the medication to the cells. I would have two different IV antibiotics, one of which I would have to take after I eat and take a Zofran just so I wouldn’t throw up. Then a high dose Vitamin C bag, hydrogen peroxide bag, and a remineralization bag. In addition, I was on a stick diet, taking more than 40 supplements and three powders a day (which I gagged up because honestly, that stuff was nasty). I barely had energy to do anything since one of my arms would be cold or ache or hot or itchy or sore from treatment. My mom would have to assist me to the bathroom since I could barely walk or push my IV pole. My body would have spasms at night, night sweats, nerve pain, nausea, dizziness, weakness, lack of taste, interest, focus. To be clear, I was 100 percent out of it. By Sunday I would start to get a tad bit of energy to walk outside for five min and some hope I could eat a meal, then Monday would come too quickly, bringing me back to ground zero of physical and mental inefficiency.

I underwent treatment two more times after my first round. Luckily, I was able to do treatment closer to home and one time even at home on my own–that was a blessing! Lyme will be something I always have to be aware of. The choices I make on a daily basis effect my ongoing symptoms. But today, I am doing so much better. I have found what works for me and what keeps my symptoms at bay.

Yes, of course I could do better–most of us could. Life is busy, but I’m doing my best in this space right now.

Despite the hardships both my family and I have faced due to my Lyme disease and co-infections, I am forever grateful for the opportunities it has afforded me. Without Lyme, I would have never connected with so many amazing folks and began my journey as a health advocate without my diagnoses.

And of course, I would not have started Holistic Umbrella without having gone through my particular health journey. Learning that I not only needed to but could also enjoy living holistically with Lyme disease has become a purpose in my life I never expected to have. And though my journey is far from over, I hope my experience can enlighten others as they embark on theirs.

Here’s to living happy and healthily under the Holistic Umbrella…