The Gift of Lyme Disease 15 Years Later

the many gifts of Lyme

In the year 2000, two things happened:

  1. I moved to Canada.
  2. I got married.

But first — I got Lyme disease. May 2015 marks 15 years for me of living with Lyme. As it turns out, my Lyme disease was a gift.

In 1998, I moved from Vermont to Dutchess County, New York to continue my work as a horse trainer. I lived in the trainer’s cottage on a private estate surrounded by pasture, hay fields and forest. My job was to train the estate’s horses during the day and then I free–lanced around the country side during my off hours. I worked with an average of 10 horses per day. My specialty was starting the youngsters and re–habbing the criminals. An equine criminal was one whose killer instinct dominated over their superior talent (e.g. criminals were worth saving if they could learn to rally and play by the rules, meaning — stop hurting humans or in most cases, stop the humans from hurting the horse). My work was straight forward: quell the killer; shine light on the talent.

The value of my work as a horse trainer was the reward of helping the animals. The price of the work was the toll it took on my body.

To manage stress and stay fit, I ran three to five miles, three or four days a week and lifted weights in my living room. Because I was still in my 20’s, I was able to live on peas and rice and chardonnay and stay very fit. I had not yet learned the balancing act of thoughtful self–care. At 28 years old, I was not curious about my health; I just wanted to work and play hard and fit into my custom riding boots.

And then, in the early spring of 2000, out of nowhere, I went flat.

Night sweats and horrific dreams interrupted my sleep. I woke up between three and four o’clock every morning. My menstrual cycles were all over the map and my skin was dull and dry. Brain fog left me sluggish and killed my reaction time — this was not desirable in my line of work and the dizziness I suffered from daily didn’t help either. My tongue swelled, my speech slurred, my vision blurred and all at random intervals. I lost muscle tone; I felt doughy — a feeling I did not like.

Wholly unpredictable and, at times incapacitating, my digestion sucked.

The joint pain in my left hip was intolerable. To compensate, I mounted every horse from the “off–side”. Thankfully, getting on and off horses from both sides was a regular part of my practice as a trainer. The young horses didn’t care — they didn’t know the difference. But, the “made” horse and the criminals, who had never had anyone put a foot in the right stirrup to climb on, weren’t sold on the idea. This often put me in precarious positions for which I no longer had the strength.

My work was suffering from my physical and mental inadequacies brought on by some kind of flu?

One day, while shopping with a friend, I dropped to my knees from pain that consumed my whole body. I begged the woman not to call the ambulance, “Just get me home,” I said.

Later that same week, a horse vet, whom I worked with regularly and who knew me well, recommended a visit to the doctor’s office for a Lyme disease test. “Cait!” he said to me after I finished jogging out a young horse for a pre–purchase exam. “What’s up with you? You look like hell and you’re winded from jogging this youngster around the riding arena? One time?” The vet was also an acupuncturist. He came over to me, passed the colt to the groom and said, “Give me your hand.” I limply extended my wrist.

He took his thumb and forefinger and pressed the webbed space between my thumb and forefinger. Again I dropped to my knees.

“Get yourself to the specialist,” he said. “You’ve got Lyme.”

“No,” I said gathering myself off the sand floor. Completely out of breath, I added, “No bullseye. Been tested—don’t have it.”

“Trust me,” he said. “Get to the specialist in Hyde Park and tell him I sent you.”

I did trust him and I did go to the special and, I did have Lyme. And, two other tick–borne diseases:  ehrlichiosis and babesiosis. It turned out, I was as sick as I seemed.

And, just so you know, there was never any bullseye.

I will never forget sitting in the waiting room for my first appointment. A woman around my age, came into the clinic with a walker. Next to me sat a man whose face had melted on one side (Bell’s Palsy). A boy (maybe eight years old?) slumped across his mother’s lap with his head lolled off to the side in an unnatural position. The boy’s eyes had an under–worldly, glossy gaze.

Scanning the other patients in the room, some looked catatonic while others had pinched and parched mouths. Family members propped up some, while others, like me, waited alone.

Sitting full of half–facts and fear, my biggest concern wasn’t that Lyme disease would kill me. My overwhelming concern was that it would not.

I had zero interest in becoming one of these people. These folks who had seemingly succumbed to this disease I’d never even heard of until I moved to the area. The town I lived in New York was a one hour and 45 minutes drive on the Taconic State Parkway to New York City. And, it was a 10 minute drive to the Connecticut border. On the other side of the border was the town of Lyme, Connecticut — the namesake for my soon to be diagnosed disease.

Once I arrived in New York, I learned about Lyme disease fast. It seemed that most people had a horse or two (or ten) with Lyme. And, our first summer in town, even my German Shepherd puppy had to have a round of anti–biotics, “Just to be safe,” the vet explained, because I was too new to know that, “You have to bring the tick in with you — not flush it down the toilet.”

[Note: This is also true for humans. If you are ever bitten by a tick, save the tick and demand it be tested.]

At the end of May 2000, I started a Lyme disease protocol — a cocktail — from Dr. Richard Horowitz. I sat in that doctor’s office weekly for test after test and prescription after prescription. I put my horse training business on hold, my bills piled up, I gave my notice at the main estate that I worked for that I was “Getting married and moving to Ontario, Canada for a while”, and they cut my insurance. I could not sleep, I could not ride my horse (or any other), nor could I take my puppy for a walk.

I could not sit outside in the sun because the medications I took made me susceptible to sun burn — in an instant! — regardless of the men’s long-sleeved, dress shirts and the jeans and boots I donned, or the big straw hats I jammed on my now, constantly, pounding head. Copious amounts of sunscreen proved futile.

Plus, terrified of the grass, the woods, and the fields that surrounded my cottage, I was sure there were ticks everywhere. And, there were…

In late August 2000, with my dog and horse in tow, I packed up my stuff, hustled–up some goodbyes and surrendered myself to Canada.

Crossing the border to start my new life all I could think was: This is not my beautiful life.

Once I landed in Canada, I went to bed for six months. I endured the nightmare of the Lyme disease cocktail: prescriptions and herbs that offered up a two-part riddle of

  1. violent reactions as my body worked to purge itself of the Lyme (et al)
  2.  and hope

I jockeyed back and forth to the States to see the specialist until my limited, US insurance ran out December 31st.

In January, 2001, just when I thought I was on the other side and getting better, I suffered from a Lyme flare. I could hardly walk from the pain in my left hip. Again. I went to the local day clinic here in Ontario for help. The doctor on call had no idea how to help me. She suggested, based on my story and her lack of understanding of Lyme disease, antidepressants.

Realizing I was completely alone on my Lyme journey, I left the clinic depressed and scared. I was seven hours away from help that I could not afford; I had no idea what the future would hold for me.

It was time to get serious about my health.

To do this, I tapped into the my innate drive and greatest motivator — my curiosity. I relentlessly pursued the answers to these questions:

What if…?

and,

Why not…?

My curiosity drove me to leave the horse world behind in 2004. I took my coaching skills and delved deeper into the fitness industry. Ironically, my love for my work and my clients and my seemingly endless amount of hard-wired energy, sparked Lyme flare after Lyme flare including vision issues, constant digestive distress, vertigo, night sweats, muscle and joint pain and insomnia.

In 2007, I “flatlined” (again). To keep going, I became an expert at faking it.

In 2012, god, the universe, the force — whomever or whatever — tired of my work–a–holic choices and slapped me down. Again. Three years ago this June, I subluxated both shoulders at the same time — my right shoulder worse than my left. As a fitness coach (who is right-handed) this was like mounting suspicious horses from the off–side. This was not good…

I could not exercise. Anatomically, our shoulders function with our core and our breath to rule all. With zero options physically to handle my stress, I turned my focus on something I could do. Nutrition.

As a fitness coach, I had studied and thought a lot about nutrition. Since 2009, I coached clients both privately and in groups, large and small, on nutrition. But, the truth was the standard North American diet dogma didn’t work for me or my clients. Or, diets would work for a while and then…fade.

Any diet will work but is it healthy and will it last?

In late summer 2012, I completely revamped my thinking about food, stress management and exercise. I experimented on myself for one year. I took the reins in on my sleep. I stayed curious about my water, my food, and exercise. And, I garnered a deeper respect for recovery days. I tapped back into what I knew and then, left behind much of my work and studies from the previous decade.

I learned — really learned — that I had to manage my stress levels including stress brought on by improperly hydrating myself, poor nutritional choices (that I thought were healthy) and over exercising. I also finally accepted that even good stress — like loving your work — affects the body and the mind too.

Then, I embraced my learning by living it.

This may seem obvious but it was not. It was work. Only by staying curious and doing the work did I develop self–care systems that finally served me. I practice them daily. They include tracking my nutrients to stay on top of my own nutritional tipping points. As my daily compass, I assess the quality of these key elements of my health: my digestion, my sleep, my mood and my energy levels.

Other (required) daily gems for me include:

  • meditation to practice stillness
  • journaling for mental de–cluttering
  • stretching with yin yoga
  • getting outside daily
  • more recovery days than working out days

In 2013, I rethought the model of what my fitness business offered and we stopped running.

In the fall of 2013, I offered my redesigned nutrition coaching course to a select group of my clients to practice the theories I developed through trial and error on myself. I fleshed out my work in 2014 by offering more nutritional coaching to the general public, including men and women from ages tween to 70+. I poured all of my research into my writing and distilled my work down into a manuscript. My goal for 2015, that I announced to my clients in January when I asked them to share their own goals, is to get the manuscript published…

The point of this post about Lyme disease is for me to reflect on an anniversary. An anniversary that, 15 years ago, I never would have imagined I’d be grateful for or celebrate.

I still worry about lying in the grass with my dog. At our daughter Lila’s class birthday party at our farm a couple of years ago, all I could think about — as the kids roared around the property and ventured into the edge of the farmer’s fields and slithered through the tall grasses by the pond to catch tadpoles — was, I hope their parents check them for ticks tonight…

Every year, from April to October, someone locally calls me terrified that they found a tick on their kid, their dog, themselves. I reassure them that, yes, they should go to the doctor, yes, they should bring the tick with them to be tested, and yes, they should ask for antibiotics.

I also, remind them that I never had signs of a bullseye.

Just this morning, I thought about my horses as I put them out in the paddock, full-time now, to graze — with the ticks….

But, mostly I focus on what’s great about all of this. My curiosity and commitment to myself have kept my Lyme Disease in check. I’ve been flare–free for over three years. This is my expectation moving forward.

I always encourage my clients to focus on what they can do rather than what they cannot. When we focus on the negative, we get more negatives. When we look for the gift(s) in disappointments and failures and things that get blown apart in life — or, forsaken — we never know what opportunities will show up.

For me, the key is to stay curious and continue to ask:

What if?

and

Why not?

Thank you for reading. Please share this post if you found it useful. It just might offer someone who is suffering a chance to think about two essential ingredients for healing and living: curiosity and hope.

Here are some more links on Lyme disease:

Under Our Skin This is an amazingly powerful documentary about some people with Lyme disease. I found it painful but important to watch. The take away for me at the end was just how lucky I was to live in an area that took Lyme seriously and had a world renown specialist a town away. Early detection and treatment is absolutely key with Lyme disease.

Lyme MD This is a research foundation and a good resource.

Lyme Disease Association This is a volunteer, nonprofit organization.

The Canadian Lyme Disease Foundation Canadians, take note.

You Can Get Better This is Dr. Richard Horowitz’s official site. He wrote a book called Why Can’t I Get Better? published November, 2013 by St. Martin’s Press. His practice is located in Hyde Park, New York.

Dr. Horowitz saved my life and for that I am forever grateful.

Please note: I reserve the right to delete comments that are offensive or off-topic.

5 thoughts on “The Gift of Lyme Disease 15 Years Later

  1. I’ve heard about a new ultraviolet machine called the UVLRx that’s being used for Lyme patients. It uses a fiber optic thread which is inserted directly into the vein and the treatment lasts for an hour, so all the blood is treated. Has anyone tried this?

  2. oh Cait. Your a fit as ever. I never would have pictured u as being sick. U sure do hide it well. So sorry for the Lyme disease. Would be nice to chat about our “pains” sometime. As I am worse than ever. I’m so proud of u for becoming a writer. How awesome is that. Good girl for keeping the fight going. You are such a strong strong lady. A real mentor for women like me. But mostly women with Lyme.
    Be Well Cait.

  3. That is a well researched and detailed account of your experience with a life-changing disease Cait.

    Having lived in Africa most of my life and been exposed to a huge range of tick species and tick-borne diseases, I never imagined that a similar disease could be so serious in a temperate region.

    As farmers and horse riders in Rhodesia, finding one or more ticks stuck on our bodies was at times a daily occurrence. I did contract “Tick Fever” in Rhodesia, a generic name for a range of symptoms that included very high fevers and wicked, pounding headaches. One of my sons got it as a baby of a few months and went into convulsions. Treated with a harsh antibiotic, he was back to normal within a few days.

    Apart from huge abscesses caused by one species of ticks that were happy to use horses, cattle, dogs and humans as hosts, most experiences of tick borne disease did not have long term consequences for humans.

    Other tick species transmitted diseases to dogs and cattle that could cause large numbers of deaths. Fortunately, one of theses diseases, Biliary, that killed dogs, was rare in horses.

    I have only been bitten by one tick in Canada, I did not even think about it when removing the parasite.

    Now that I have read your post, I will pay more attention.

    Thanks Cait.

  4. OMG! Cait, what an amazing journey!! It’s amazing to read your story about how you broke through on this debilitating illness, and what you learned from it!!

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