Doing Time with Lyme

I am a prisoner of my body.

Yesterday, I was invincible and strong.  I walked two miles and did Pilates.  I felt twenty-something instead of my real age of forty-um, something. I had a kick in my step while running errands, almost dancing through the aisles of Shop Rite-embarrased to say- to Madonna. Yesterday I felt like the world was at my fingertips and anything was possible.

But that was yesterday.

Today, I awoke abruptly at 4:15 am to a racing mind and dancing feet.  The dancing feet are a product of Lyme and it’s called restless leg syndrome. Usually it passes once I massage my legs but this morning, I was a Rockette.  I spent two hours in bed planning the events of the day while flexing my feet and calves for relief.  Later, I would call clients. Pay bills. Tackle the house and the state of disaster claimed here from the recent flooding. Now that my kids are back to school living their lives, I am excited about getting back to mine and based on yesterday’s energy, I assumed enormous success.

But when I got out of bed after 6am, my legs were cement.  My lithe body of yesterday, replaced by one plagued with aches and stiffness.  My back hurts.  My neck too. I recall reading an article about what it feels like to be old.  A journalist likened the experience to having bags of flour mounted to the back, knees, hips and neck.  My first steps this morning exposed each bag.  My mind demanded me to move, my body refused. Yesterday’s flexibility felt foreign and unobtainable.

After a few steps, I gained my balance and the flow returned so that I was able to move with less difficulty.  Still, my hands dropped my cup of coffee and are making typos as I write this- every other word for the most part. Thank God for internal corrections!

It would be great if I could live without Lyme, but it turns out that I probably have chronic Lyme, a term that many physicians and scientists argue doesn’t exist.  My body doesn’t care about Lyme controversies, or the Latin name given to the spirochete that invades me (Borrelia burgdorferi), or who determines the validity of a disease. My body simply responds to the bacterium that is a parasite.  I have proof of the existence of those bacteria in my body- ten tests worth of proof. Actually I need no test to know when the disease is active.  Aside from feeling older, my face looks older too.  I have circles under my eyes.

This imprisonment began in 2008 when I found a bull’s-eye rash the size of a grapefruit on my left thigh.  I wasn’t sure immediately that it was a bull’s-eye, the universal sign of a tick infection, but as a resident of Hunterdon County, New Jersey, I was suspicious. I love to be out doors, and unfortunately, so do deer and deer ticks.

Having some knowledge of Lyme’s Disease, I circled the ring on my leg with a permanent black marker then cringed with disbelieve as it grew before my eyes.  By the time the ring expanded to a cantaloupe, I couldn’t walk five feet without gasping for air. My body was exhausted, my mind foggy, and I had chills. I was 42 years old and an exercise enthusiast.  As a massage therapist and personal trainer, never had I gasped for air like a fish out of water while sitting! Pathetic.

My husband rushed me to the ER where I tested positive for Lyme disease and was placed on intravenous antibiotics. At the hospital, I received overnight treatment, a prescription for additional Doxycycline (oral antibiotics) and was told to follow up with an Infectious Disease doctor, right away.

And so I did.  I went as soon as possible to the Infection Disease Associates of Hunterdon County and saw a female doctor who took a quick glance at my blood work (from the ER) and said she wanted me retested.  I was retested and came back a second time with a positive Lyme titer and she dismissed me in a matter of five minutes, saying that I did not have Lyme but that I most likely had Chronic Fatigue or Fibromyalgia and to find another specialist.

I was exhausted and had driven one hour each way to see the ID doctor, practically falling asleep at the wheel- only to be denied my rights as a human being to be treated with respect.  My doctor did not believe in Lyme Disease!

Dejected and angry, I decided that day to get informed.  I researched all aspects of Lyme disease and wrote and published an article in the May issue of NJ Monthly magazine (http://njmonthly.com/articles/lifestyle/lyme-time.html) which explains the controversies surrounding the relentless pest, as well as general information and resources.

The countless interviews I conducted to write my article fueled the unsettling truth behind my doctor’s quick dismissal of me and my disease.  Not all doctors, not even infectious disease doctors, believe in Lyme and the destruction it causes. And Lyme is not alone; many doctors dismiss Chronic Fatigue and Fibromyalgia with similar ease.

Soon after my infectious disease doctor said there was nothing she could do for me, I found relief on additional antibiotics prescribed by my general practitioner.  And after three years on and off Doxycycline, I was treated by a Lyme Literate doctor in Medford who placed me on homebound intravenous medication. That intervention granted me three Lyme free months!  What relief!

My symptoms are timely.  In the mail today I received black and white pages that tell me a lot about my body’s chemistry.  Mostly, it shouts that I have tested positive for Lyme once again.  These results further explain my ongoing battle. Back to Doxycycline and an irritated stomach.

I have a dear friend who lives with Multiple Sclerosis.  Four years ago, I was making meals for her to assist her on her tired days.  Last week, we had lunch together and walked the same- with balance issues and fatigue, leaning on each other like grateful octogenarians.  Tomorrow, I might be able to pick her up and twirl her around!  I never know what each day will bring- though I know, none of us do.

Now that I am informed, I can live with Lyme disease. There are new treatments to explore. Through massage, acupuncture and healthy eating, I can find some relief on my bad days. The adage what doesn’t kill you– you  know the rest, will make me stronger.… I’ve learned the importance of being an advocate for my body.  I will never let a doctor dictate my health because of his or her beliefs.  I know my body and my normal better than anyone else.  What might be normal for me could be a sign of impending doom for another. I will always follow my intuition when it comes to my health and the health of those I love.

While Lyme might feel like a life sentence today, tomorrow, I might be dancing and singing in the rain with the neighborhood kids.  And with this non-stop flooding, I might just be doing so in my basement. I’ll be optimistic- so where’d I throw those galoshes now?

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Author: joames

Writer, massage therapist, personal trainer, advocate

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