Lyme Disease: A National Health Crisis

By: Jenna Smith

"No pain, no gain!" is a grim, but popular maxim for the dressage competitor- indeed, for any competitive athlete. But especially for the dressage enthusiast who suffer not only muscle soreness and joint strain, but blisters and calluses on hands - and much worse!

Yes, we equestrians are all gluttons for punishment in our passionate pursuit for the elusive mastery of subtle aids and powerful performance.

"It's not trail-riding!" quips Sue Jaccoma to students who dare to whine about the physical demands in following her directions. As a successful instructor and top national competitor herself, she leads by example and manages to inject humor into the gruesome reality of callused crotches, back problems and bruises of all shapes and sizes, never complaining (actually relishing) the challenge of riding 5 to 6 horses per day without complaint.

And yet it is this iron-will and blind determination that makes dressage riders so vulnerable to Lyme disease.

Lyme Disease is now thought to be the fastest growing infectious disease in the world having finally surpassed AIDS in the US (Source: International Lyme and Associated Diseases Society.)

According to a Harvard medical study, there are believed to be at least 200,000 new cases each year in the U.S, and some experts think that as many as one in every 15 Americans is currently infected (20 million persons).

The truly frightening aspect of this disease is that most victims never see the tick or the bulls-eye rash, and with an enormous capacity for pushing through pain, many dressage riders don't recognize the onset of symptoms (which for many feels like a flu), and ignore the sporadic pain that occurs as the spirochetes burrow deeper and deeper into the tissue causing joint pain (especially neck and back), abdominal pain, fatigue and a whole host of other symptoms that can mimic everything from MS, fibromyalgia, chronic-fatigue syndrome, and rheumatoid arthritis just to name a few.

Lyme affects each person in a very unique way depending upon immune strength. Additionally, it can hide in a healthy person for years in a cystic form, and then become virulent at the first sign of weakness.

To make matters even worse, there is no reliable test available to determine the presence of Lyme in a person, you need a Lyme-literate doctors who can put the puzzling symptoms together with a full health history and a test for antibodies (the western blot) to determine the diagnosis and design a treatment protocol which varies greatly from person to person.

Johanna Husta lives in Ulster County, New York, where she has ridden her whole life. First competing in hunter-jumper, then eventing, she fell in love with dressage after a single lesson with Meri Straz (now sadly deceased). Before that, in 1996, Johanna (known as Jiffy) started feeling sick. She remembers, It felt like someone pulled the plug on my life-force.

It began with unusual fatigue and achiness, along with joint pain, migraines, depression and night sweats. Eventually, the symptoms became so troubling that Johanna went to the doctor. "I never go to the doctor maybe once a year for my annual physical but this was beginning to scare me." Says Johanna of that long-ago visit.

"He (the doctor) attributed all of my symptoms to depression and sent me home with anti-depressants. To his credit he ordered a Lyme test, but it came back negative."

Johanna's Lyme test was the ELISA test which looks for your bodies antibodies to the infection. Unfortunately the test misses 40% 80% of the time (depending upon your source,) but it is especially ineffective once the bacteria has disseminated and invaded more deeply into the tissue.

For seven more years, Johanna went from doctor to doctor, diagnosed with depression, rheumatoid arthritis and fibromyalgia. Each year the ELISA test was repeated with negative results and Johanna, still riding several horses per day and working a full-time corporate job, continued to suffer.

Finally, in the spring of 2004, an allergist sent her to Dr. Horowitz, a premier Lyme-literate doctor who has been treating all forms of Lyme for over 20 years. At last she was given the western blot which showed positive results 8 years after her first symptoms.

Relieved and undaunted, Johanna took mega-doses of oral antibiotics for 18 months during which time she continued to ride, but had marginal improvement. Dr. Horowitz decided to treat her more aggressively and placed her on IV antibiotics for 6 months.

Another less dedicated rider might have canceled their ambitious Florida plans, but Johanna was determined. She had been rehabbing an older competitive horse, and was eager to spend the winter in Wellington, Florida training with Sue Jaccoma.

"I covered my IV-line with an arm-band, and most people didn't even know I was sick. But Sue knew, and tried to accommodate my good day/bad day roller-coaster recovery. She was very understanding!" Johanna recalls,

"The excitement I felt as my riding improved actually helped me feel better faster." And by the end of the season, Johanna was starting to feel some semblance of physical and mental normalcy.

Unfortunately, like so many others, Johanna had a full relapse six months later, and this time she had to cancel her Florida plans. But she isn't bitter.

"Everything happens for a reason." She says softly. "You've got to have faith." And Johanna's faith encompasses her plans to compete at the highest level.

Unlike Johanna, I started riding as an adult, taking my first dressage lesson in 1995. I spent 8 years at Training Level and then in 2003 - at age 42 - I purchased a school-master from gold-medalist Susanne Hamilton (CSF Imports), and began training with her in earnest.

Undaunted by the physical challenge of daily schooling and frequent showing, by the end of 2005 I had earned my bronze medal, and by May of 2006, I had earned my silver medal as well.

Looking back, I remember fighting incredible fatigue and a long list of aching muscles and joints that I ascribed to the physical cost of competitive dressage.

In September of 2006 - ignorant of any possible illness I loaded up my Holsteiner mare and 3 month old filly to Region 8 Championships in Saugerties, New York for the breed show, along with my Hanoverian schoolmaster and won 3rd place in Prix St. Georges (adult amateur class).

Ten days later I had to cancel my lesson with Sue Jaccoma due to a mysterious flu-like illness.

During the next several months, my health rapidly deteriorated with no evident cause. Specialists from Portland Maine to Boston, Mass performed every test imaginable (including a negative ELISA titer for Lyme Disease), and still no answers.

By this time my symptoms included severe neurological involvement and relentless abdominal pain which confined me to constant bed rest in a dark room which is an unimaginable nightmare for anyone but especially an active equestrian.

Finally, Sue put me in touch with Johanna, and after comparing symptoms, I felt certain I was suffering from Lyme Disease. Thanks to Johanna's knowledge and encouragement it took only 2 more months for a diagnosis (most Lyme-literate doctors have waiting lists between 3 and 8 months due to the massive swell of new infection cases.)

Unfortunately, after months of mega-doses of 4 different antibiotics and penicillin shots three times per week, I was still not improving. Finally, my doctors put me on IV antibiotics, but when I still seemed to be worsening, the doctors ordered a CD-57 test.

The CD-57 test, a major medical break-through in the treatment and diagnosis of Lyme, which measures a subset of killer cells (also used for AIDS and other immune system related illnesses), and will show abnormally low results for Lyme Disease (The range is from 60 to 360 with most people maintaining a level around 200.

In fact, Dr. Burrascano, a Lyme Specialist who treated over 12 thousand Lyme cases before retiring, wanted to see the CD-57 over 200 before ending antibiotic treatment. He found that anything lower resulted in relapse of symptoms.)

When my test returned a 28, my specialist gently prepared me for the lengthy and difficult recovery plan I could expect over the next several years. I didn't think it could get worse, but I think that may have been the lowest moment, realizing I wouldn't be riding any time soon.

Over the next two months, my husband and I wrestled with the right course of action for our three horses.
My Grand Prix schoolmaster at 17 was not ready for retirement, but had been out of work during my illness, and I finally broke down and realized that it was selfish to keep such a wonderful teacher and friend out in a field, waiting for me, not understanding why he didn't get the pampering and daily riding.

So, instead of riding FEI tests all summer and going to Florida in the winter, I have been isolated and bed-ridden for over 18 months, sometimes in a basement room with no windows, afraid of the pain generated by light and sound.

Daily infusions of IV antibiotics through a port installed in my chest, and a dozen supplements along with the multiple prescription medications finally stopped the downward spiral, but then began the long battle back to health.

It is still a major accomplishment to do a load of laundry, but the dream of getting back on my horses someday keeps my spirits up.

To avoid such a frightening disease common-sense protection for you and your animals cannot be under-stated. But the hardest thing for dressage riders is to re-train your mind to pay attention to every ache and pain, especially in the spring and fall when the ticks are most active.

Another helpful preventative according to Stephen Buhner, author of "Healing Lyme", is taking 1000 mg of the herb Astragalus - 2 times per day, which is effective for resisting infection and/or lessening the disease impact.

Maintaining a strong immune system is also critical. A healthy diet and adequate rest are important, but equestrians need supplements just like our horses do.
Ticks are a part of the dressage rider's life, and with the spread of the disease, it becomes increasingly likely that you too could contract Lyme disease.

It is critical to get medical attention at the first sign of Lyme symptoms (especially flu-like symptoms from early summer through the fall.) The infamous bulls-eye rash is a definitive symptom, however less than 305 ever see the tick or any rash.

If you do see the rash, a three to four week course of antibiotics will completely eradicate Lyme in most people. However, the frightening truth is that the longer you have Lyme disease the harder it is to get rid of.

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