A real-life story of a Lyme disease patient

By Charise P.Ott

I remember waking up on Saturday morning, October 21, 1995. My 6-month-old son had successfully slept through the night, allowing me seven hours of undisturbed sleep. It was going to be a good day. My husband John and I were going to a friend's wedding. We would spend the evening dancing and celebrating with friends.

As my thoughts were focused on what I was going to wear, I experienced a sharp deep pain in my back. I never had any back problems before this. Throughout my pregnancy I was fortunate to escape the typical back complaints. As I got out of bed the pain was unbearable. I couldn't walk. I was stiff as a board. I tried stretching but that only made it worse. I got into the shower hoping to get some relief, but there was no improvement. I remember thinking, "something seriously is wrong."

Over the next 3 years I developed heart problems, neurological difficulties such as, short-term memory loss, vertigo, visual disturbances, chronic headaches, sore throats, persistent coughing and joint pain. It seemed unusual for a perfectly healthy female at 33 years of age to have so many unexplainable ailments. I had no previous history of health problems. I didn't drink or smoke. I was in good physical condition. I sought the help of numerous doctors to find out what was wrong with me. I consulted with orthopedics, rheumatologists, cardiologists, cardio-surgeons, infectious disease specialists, and internists. I went to physical therapy, chiropractic, and acupuncture for relief from the pain.

On the advice of many of the doctors and therapists, I spent endless hours at home exercising and stretching. None of it helped. I had numerous and expensive diagnostic tests’ ranging from CAT scans, bone scans, MRIs EKGs, treadmill tests, nuclear scan, and an angiogram. The results were all positive for some sort of abnormality. The good news was that I had evidence that my complaints were justified. Several doctors ordered extensive blood tests. Each time, I tested positive for Lyme disease. I was advised by these doctors that a positive test was nothing to be concerned about. They explained that thousands of people test positive for Lyme disease without having the illness.

But I was sick, had classic symptoms and consistently positive Lyme tests. "Shouldn't Lyme be considered?" I thought, "instead of spending thousands of dollars on diagnostic tests and surgeries, wouldn't antibiotics be worth a try?" I didn't know enough at the time. The doctors acknowledged something was contributing to my declining health. However, they all ignored the possibility of Lyme disease.

My orthopedic specialist advised me I would need a double fusion back surgery to relieve my back pain. I was not convinced that major lumbar surgery was going to resolve all my medical issues. The other symptoms didn't seem to have any relation to a back problem. The positive Lyme test results stuck in my head.

I learned about Lyme disease during my three-year stay in Virginia in my mid 20's. I was aware that Lyme disease is transmitted by the bite of an infected tick. I remember Virginians talking about the seriousness of the disease and the importance of early intervention with proper antibiotics. I began doing my own research about the disease.

I couldn't remember being bitten by a tick. Nor did I have a bull's eye rash, which is commonly thought to signify a bite by a Lyme-infected tick. I have since learned it is common not to have a rash. Fortunately, I have a family member who is an orthopedic surgeon. I sought his opinion regarding my back ailments. He reviewed my diagnostic test results and advised against any back surgery. He shared with me a recent article from a medical journal about the relation between joint pain and Lyme disease. The article discussed how performing arthroscopic surgery on a patient did not resolve the problem of joint pain because the primary cause of the arthritis was the Lyme bacteria. (Borrelia burgdorfer).

I began my search to find a doctor. I wanted one who would have the knowledge and experience to treat what appeared to be an under-diagnosed and misunderstood disease in the medical community. As I was searching for a doctor, my heart problems were getting worse. I had numerous EKGs, all were abnormal. One particular cardiologist told me that the EKGs indicated I had suffered a heart attack. He asked me if I remembered ever having any symptoms that resembled a heart attack. I explained that I had three separate incidents in the past two months. He immediately referred me to a cardio-surgeon who ordered an angiogram. I authorized him to perform the angiogram. Before the procedure, I gave the surgeon the information I had learned about cardiac involvement in Lyme patients and how the bacterium attacks the heart. He was not convinced this was my problem. He explained to me the possibility of heart disease and the need to have stents or an angioplasty performed.

As I suspected, the angiogram was clear and there was no heart disease. I knew I needed to find a doctor who would seriously consider that my symptoms were a result from Lyme disease. If I continued with the doctors I had been seeing, I would never get well. I found a doctor who had experience treating Lyme patients. Several lab tests for tick-borne diseases were performed. The results were again positive for Lyme but also for a co-infection, ehrlichiosis. Ehrlichiosis is a bacterium that infects and invades the white blood cells. It can be treated with the same drugs used for treating Lyme.

I began an aggressive antibiotic treatment for Lyme and ehrlichiosis and showed significant signs of improvement. This gave me hope and I regained some of my life back. In January 2001, I began experiencing drenching night sweats, chills, and a chronic low-grade fever. These symptoms continued for several months. Over a six-week period I lost 25 pounds, 20 percent of my body weight. I went from size five to size zero. Even size zero was too big. My doctor suspected Babesiosis, a third tick-borne illness. Babesia is a parasite similar to malaria, and attacks the red blood cells. It requires a different form of drug treatment than Lyme and ehrlichiosis. I tested positive. My illness suddenly became more complicated.

I started a new regimen of powerful drugs immediately. Since beginning an appropriate treatment plan for all three illnesses, I have been able to reduce or eliminate some of my symptoms. I believe I have made progress in attacking the diseases. Whether I will ever be free from the diseases is unknown. Medical science is not conclusive on whether late-stage Lyme,

along with co-infections can be cured. In fact, most in the medical community refuse to acknowledge the prevalence and the seriousness of tick-borne illnesses. These illnesses imitate many diseases, making a diagnosis difficult. Diseases such as Crohn's, ulcerative colitis, multiple sclerosis, rheumatoid arthritis, lupus and chronic fatigue syndrome are just a

few of the mis-diagnoses.

More research on Lyme disease and the effect of co-infections needs to be completed. Another critical area in need of research is the effect of tick-borne diseases on children. Unfortunately, may become infected in more ways than adults. Like adults, the most common way is to be bitten by an infected tick. Children, however, are also at risk through in-utero transmission or from breast milk. Children who suffer from tick-borne illnesses are plagued with symptoms similar to adults.

They may also have difficulty learning, impaired concentration, inability to pay attention, reading problems, overwhelmed by school work, confusion, uncharacteristic behavior outbursts, mood swings, fevers, chills, joint pain, stomach aches, headaches, nausea, asthma and allergies. We learned of these risks the hard way. In March 2002, our son was diagnosed with congenital Lyme and has since begun treatment.

The devastating affects of Lyme disease and other tick-borne illnesses plague an increasing number of people in our country. No matter where you live, you should be aware of the risks of a tick bite. Ticks and the diseases they carry do not distinguish between race and gender, rich and poor, young and old. Awareness and education is necessary.

If you are bitten by an infected tick, early intervention (in most cases) provides a successful recovery. When a delay in treatment occurs it becomes more difficult to eradicate, leaving long term consequences. It is important for doctors to make a clinical diagnosis, confirmed with laboratory data to determine if a person has Lyme disease.

Educated doctors are crucial for a successful diagnosis and treatment. In my case, the clinical evidence was present, along with repeated positive blood tests. Looking back, it appears to me that my doctors missed the obvious signs and failed to diagnose my illness correctly. It has been six years since that October morning.

I often wonder if my story would read differently if I had received prompt treatment. For now, my journey continues, along with my son. Tick season will soon be here again. I hope by sharing our story, it will help others protect themselves and their families from experiencing the debilitating and devastating effects of this disease. Websites, recommended reading and laboratories for tick analysis and testing.

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