The trouble with Lyme disease…

I caught Lyme disease when I was ten years old.

My family had just moved from Upper East Side in New York City to a small town in the heart of Connecticut – one that was bucolic and picturesque, but within whose dappled woods and nature preserve, lay a hidden epidemic of ticks.

There is so much debate about Lyme disease, whether in the media or even amongst doctors. No one can seem to agree on what treatments are best, for what length of time, or even whether Chronic Lyme disease even exists. I can only speak from my own experience with Lyme Disease – I got very sick and for a very long time.

How I caught Lyme disease

Lyme disease is caught from ticks – a very nasty little thing called a spirochete, a type of bacterium that can affect any organ of the body. That tiny little monster caused me a huge amount of pain for almost a decade of my life as a child.

I caught Lyme at ten, was finally diagnosed at eleven, and didn’t really re-join the world as a “healthy” individual until I was eighteen.

Lyme disease symptoms and treatment

Most people get a bull’s-eye rash when they get bitten: a clear sign of Lyme that makes it easy to catch early and treat successfully with a short course of antibiotics.

But if like me, it goes undetected and untreated, the results will be deep and long lasting. I began with the traditional antibiotics, but when we realized they were not working and my migraines, fatigue, and muscular pain was getting worse, I missed increasingly more school and saw increasingly more doctors as my poor parents tried desperately to seek a cure.

Trying the strongest antibiotic treatment possible, I had an IV inserted and underwent daily IV antibiotics for 6 months. The treatments were exhausting and unfortunately, unsuccessful, and having an IV made having any sort of normal life pretty impossible. I missed so much school that I had to be homeschooled with a tutor and was unable to continue any of my favorite activities, like gymnastics or tennis.

Unfortunately, the IV and traditional treatments weren’t helping and I was taken completely out of school to undergo hyperbaric oxygen therapy for six months. That means for an hour every day, somewhere deep in the Berkshires in Massachusetts, I would sit in a chamber that would simulate the high pressure environment of well below sea level and I would be pumped full of oxygen.  This is normally something done by super athletes, scuba divers with the bends or firemen suffering from severe smoke inhalation …I was a fifteen year old kid. It was definitely one of the more surreal experiences of my life to say the least.

Discovering cooking

The one light in this dark period was that in spending so much time sick at home with none of my usual hobbies, I discovered my new hobby – cooking. It started with watching the Food Network every day and turned into being inspired to try and recreate these delicious recipes on my own.

While I didn’t have the energy for athletic endeavors any more, I found that on my good days I was up to baking a cake or even cooking a chicken dish for dinner. Cooking, especially baking, became my favorite distraction from the daily realities of Lyme disease and gave me a sense of satisfaction, of accomplishment on days that I wasn’t able to do much else.

Going gluten-free

Eventually I went to see a Lyme disease doctor who also practiced Naturopathic therapy. It was he that suggested going gluten-free, along with prescribing weekly antibiotic injections (again) and a fully sugar-free diet to boot, pretty much eliminating everything I wanted to eat as teenager and crippling my hobby of baking.

Back then, following a gluten-free diet was not easy. There were very few GF brands like there are now and no Whole Foods that stocked GF foods or ingredients. I remember making the same batch of gluten-free and sugar-free brownies over and over, because there was nothing else I could find to make. But I stuck to it and after about six months, started to feel better.

Being an impatient and shortsighted teenager, once I started to feel better, I figured I could lapse back to my “normal” diet and stop being so restrictive. Which led to another return of symptoms. Luckily, at this point, I had finally found the right mixture of medicines that worked for me and was on a program of antibiotics that would lead to finally being cured of Lyme Disease. So despite returning to eating gluten and sugar, I felt better.

It would take the better part of another decade for my health to again deteriorate so badly that I was forced to completely eliminate gluten from my diet. But despite my return to a “normal” diet for so many years, that first brush with gluten-free eating and the effect it had on my health taught me a lesson that I always have carried with me. It planted the seed for my later interest in the relationship between diet and overall health that is one of my passions to this day.

As my diet changed so did my health, and ultimately my relationship with food.  Even though being sick for so long was definitely not an ideal adolescence, in the midst of my worst times I discovered my passion for cooking, which is something I will always be grateful for.

I know that many people come to a gluten-free diet because of illness, seeking some relief, whether that is celiac, Lyme disease, arthritis, or any of the many many other autoimmune diseases that are so crippling.  I hope that my journey might inspire you. Things will get better; I am testament to that very fact!