Quest for a Diagnosis

by Laura Zeller

Before I got Lyme disease, I was a mountain climber, and an athlete full of energy! I had an exiting career planned in the environmental field. Helping nature and animals was always my dream. My dreams motivated my life, and I had a passionate interest for the outdoors. As a teenager, my love for the outdoors led me to work blazing new hiking trails, and camping in dense wooded areas. Ticks were always crawling all over me, and I did not think it was anything to worry about. At lunchtime, I would take off my work gloves, and flick ticks off my arms and scratch them out of my hair. When I got home at night, I used tweezers to pull the ticks out by the dozens. Back then, what was Lyme disease?

When I was growing up in the 1980's, Lyme disease was a new discovery, and thought to be easily treated with antibiotics. It seemed I had no reason to fear ticks, so I continued doing what I loved, being outdoors. Even if I had known about the dangers of ticks, what was I supposed to do? Should I have avoided the woods and spent my summers indoors? The outdoors was my life!

I began to experience fatigue in my early teens, and questioned the possibility that I might have Lyme disease. My pediatrician tested my blood, which came back negative. Eventually, I returned to him and was prescribed ten days worth of Doxycycline, just in case it was Lyme. The medication made me feel worse, and the doctor told me to stop taking it after only three days, despite the fact that I had two bullseye rashes on my back. I was nauseated, exhausted, my joints hurt and I had pain in my eyes. All I wanted to do was sleep. I grew so weak I had to drop out of my high school sports teams. I tested positive for mononucleosis, and was instructed to rest and it would go away by itself.

After another couple of doctors, I was told that my mononucleosis had progressed to chronic fatigue syndrome (CFS), and there was no cure. Months turned into years, and the overwhelming fatigue continued. I struggled my way through college with a limited course load. In addition to the exhaustion, I began to exhibit new symptoms, including muscle and joint pain, swollen glands, fever, upset stomach, confusion, tingling sensations and sensitivity to light and sound. I was heartbroken that I could not do anything fun, and all my friends abandoned me.

As my symptoms increased, I sought the help of over 40 doctors. I was diagnosed with chronic fatigue syndrome (CFS), fibromyalgia (FMS), multiple sclerosis (MS), rheumatoid arthritis (RA), Lupus, chronic mononucleosis, and Addison's disease. Most of the doctors I saw referred me to specialists because they had no idea what was wrong with me. My symptoms progressed to the point of complete exhaustion. I was too weak to brush my hair, or even sit up to drink some water without assistance. If I did get up to go to another “hopeful” doctor, I would be wiped out for days afterwards from the exertion.

I spent weeks in the hospital for CFS, still untreated for Lyme. I was given painkillers, anti-inflammatory drugs, and diagnostic tests. Even while lying in a hospital bed, and my Lyme tests were positive, I was never treated. The doctors determined that my positive Epstein-Barr virus titer was the cause of my complaints, and diagnosed me with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

I was released and sent home with antidepressants and rheumatoid arthritis drugs, and yet another diagnosis of CFS/CFIDS. Countless frantic visits to the emergency room solved nothing. Sick and petrified, I would lie in a hospital bed dripping with sweat, high fever, my whole body numb, and tingling nerve pains shooting down my arms, legs, and back. My face drooped, I had facial flushing, and my body ached down to the bone with intense pain. The doctors would dismiss me as healthy on paper, and discharge me with orders to find a chronic fatigue support group and see a shrink.

Lucky for me, I do not give up without a fight. My determined personality kept searching for help and answers. I spent hours researching medical literature and educating myself on the complex nature of tick-borne diseases. After arming myself with as much information as I needed, I found that my symptoms matched up closely with those of neurological Lyme disease. It all made sense to me, the years of tick exposure, hundreds of bites, the rashes, the exhaustion, all of it just “clicked.”

With extreme luck, I ended up finding an amazing Lyme disease physician affiliated with the International Lyme and Associated Diseases Society (ILADS). He read over my folder full of lab tests, and my twenty pages of typed personal history of the previous ten years. He said I had been grossly under-treated and mis-diagnosed. He said that although my health history was bad, that it was not unusual to him. Working on the front lines of tick-borne disease, he had seen thousands patients in his practice, many of whom had been turned away by previous physicians who lacked comprehensive knowledge of tick-borne disease.

He examined me, discussed my diagnosis, and what treatment I would need. He said my case was severe, and that I may get over this all together but it would take a long time. All of my Lyme disease tests, plus a myriad of co-infections including babesia, Bartonella, and Ehrlichiosis came back positive.

Finding my Lyme doctor finally ended my quest for a diagnosis. Personally, it brought an end to ten years of emotional suffering, misunderstanding and downright neglect from the medical community. My treatment protocol included IV and oral antibiotics, malaria medications for babesia, and a combination of medicine for Bartonella, and monoplace hyperbaric oxygen therapy (HBOT). Combined with nutritional support and physical rehabilitation, my protocol made an enormous positive impact on my health. I went from being bedridden to being independent and functional again. I could do everything anybody else could; I just had to pace myself.

It took three years of antibiotic therapy for me to feel back to my old self again. After 4 years of treatment, my symptoms lessened significantly. I have been off antibiotics for nearly two years now. Although not cured, my stamina and endurance have improved enough to get me back enjoying life once again.

I have since discovered the reason why it was such a battle for me, and countless others to receive a correct diagnosis. Based on my personal experience, I estimate that an alarming percentage of primary care physicians and family doctors have no idea what they are doing concerning diagnosis and treatment of tick-borne disease.

The reason for this is that the Infectious Disease Society of America (IDSA) has written guidelines for treating Lyme disease that in my opinion are inaccurate, outdated, and fatally flawed. The doctors I saw during my quest for diagnosis likely followed these guidelines, and therefore concluded that I did not have Lyme disease. Many Lyme patients fail to receive a conclusive diagnosis because the testing is poor and there is a serious lack of Lyme literate medical doctors (LLMD’s). In my experience, what many patients need to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases.

If you go to the doctor, and complain of being tired all the time, for six months or more, you are probably going to be diagnosed with chronic fatigue syndrome. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense to me! I think you always need to find the cause. Patients will join chronic fatigue support groups, go on disability, and tell their family "I know what's wrong with me now, and I have chronic fatigue syndrome." I still find it amazing just how many people get sucked into what I believe is a giant conspiracy and illogical train of thought. None of it makes any sense to me, and yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with a strong possibility of undiagnosed and untreated infection.

Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. In my opinion, normal, healthy people do not just suddenly come down with arthritis, or become exhausted all the time for no apparent reason; there is always a cause. The term “syndrome” bothers me to no end; it is just a word for a cluster of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you.

The same thing is true for treatment of diseases. Sick people seek out a cure for arthritis, for example, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is antiinflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated.

The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. You have to become your own medical detective when faced with a chronic illness. It is your responsibility to arm yourself with the information you need to fully educate yourselves.

My best advice is to remember my story and always fight to seek out the cause.