Rarely Fatal Disease


By Lucy Barnes

Star Democrat, Easton, Maryland- Lyme disease is caused by a spiral shaped bacterium (spirochete Borrelia burgdorferi). It is most commonly transmitted to humans through the bite of an infected tick. Lyme disease has recently topped AIDS as the fasting growing infectious disease in the nation. The disease has been misdiagnosed as Multiple Sclerosis, Parkinson’s Disease, Lupus, Alzheimer’s, Arthritis, Lou Gehrig’s Disease (ALS), Fibromyalgia, Guillian-Barre, Chronic Fatigue Syndrome, and a number of other illnesses due to the variety of symptoms found in those with the disease. Over 15,000 new cases a year are reported in the United States and many researchers believe the disease has been grossly under reported. Maryland and Delaware are on a list of the ten states with the most reported cases of Lyme disease.

Many factors have contributed to the devastating effects caused by Lyme disease, including the belief that it is either a rare disorder or it is not considered to be endemic in the region where the patient resides. To complicate matters, many of the current testing methods produce a high percentage of false negatives, leading doctors to come to the erroneous conclusion that the disease is not the cause of patients’ recurring or ongoing symptomology. These problems are compounded when patients are treated with an antibiotic that is not effective for the strain or strains of Borrelia they have contracted (over 185 different strains identified to date). Many physicians refuse to believe the disease is still active after a short course of antibiotics, and patients are suffering the consequences as a result.

Although Lyme disease has the chance of being cleared from the system if detected in the very early stages, physicians often insist that patients who have been bitten by a tick, "wait and see" if symptoms develop before they approve treatment (in which case it is often too late). While many physicians familiar with the disease advise their colleagues to take swift action when a person is bitten, many doctors still refuse to treat at all without a positive blood test, a bulls-eye rash, and multiple symptoms.

The doctors delayed actions, along with the refusal by insurance companies and HMO’s to promptly approve treatments, allows the Borrelia spirochetes to remain active and continue to invade tissues and organ systems. This may lead to more severe, permanent, irreversible damage, or death. The insurance companies policies, coupled with lengthy appeal processes, denies patients' prompt care, and often, after a drawn out paperwork battle, no care at all. To make matters worse, loop holes in the laws continue to exempt insurance companies from liability in the event of disability or death of an insured patient.

It appears that Lyme disease patients are not alone in their struggle to get quality care through their insurance companies. The results of the 1999 Survey of Physicians and Nurses (a national random survey concerning non-elderly patients) reports 87% of doctors report their patients have been denied coverage for health services on a regular basis. The most frequent denial was for prescription drugs, with 61% reporting it was at least a weekly occurrence. Medications for the Lyme patient, and many other patients, are not a luxury, they are a life saving tool. In many instances, medications are needed immediately to prevent death or permanent damage.

The survey also shows repeated denials for diagnostic tests (42%), overnight hospital stays (31%), and referrals to specialists (29%), which are reported to occur at least weekly. Close to one-half of the medical profession surveyed reported a decline in the patients’ health due to the denials. In addition, increased paperwork and the decline in "quality care" were concerns shared by both doctors and nurses.

A growing number of people who have Lyme disease and have negative blood test results, have been found to harbor live spirochetes in their tissues, even after extensive antibiotic therapy. During the 13th Annual International Scientific Conference on Lyme Disease and Other Spirochetal & Tick-Borne Disorders, Dr. H.W. Horowitz reported that 80 patients who had been diagnosed with Lyme disease, and or Babesiosis/Ehrlichiosis, were reviewed. All patients continued to show signs of infection after so-called, "appropriate treatment". Testing on these patients (after treatment had been discontinued) showed serum PCR positivity of Lyme Borrelia, despite the extended courses of antibiotics. Although the patients were treated for an average of 13 months (1 month to 53 months) the results indicated that "no single antibiotic or combination of antibiotics used was able to completely eradicate the infection, although significant clinical improvement was seen with chronic antibiotic therapy."

Lyme disease has taken the life of many, and the life out of so many more. Those who have lost their battle to a disease the CDC reports is, "rarely fatal" includes an actress who was nominated for an Academy Award, a highly respected cancer surgeon, and a dedicated research scientist. The battle has been lost by the father of two children who was forced to seek treatment from over 100 doctors, spent time in 7 different hospitals, and accumulated over 2.5 million dollars in medical bills.

The disease has no preference over who it claims as a victim. It has claimed the life of a local mother and grandmother, a Vietnam War Veteran, several doctors, and a number of Lyme disease advocates. It has also taken the life of a nurse who was misdiagnosed with Alzheimer’s for nine years. The list continues with a man who became partially deaf and was denied treatment by his insurance company for Lyme disease, a 38 year old farmer who slipped into a comma 3 days after a tick bite and died a month later, and a 37 year old man who was an avid deer hunter. A tick bite also ended the life of a 19 year old student who was attending the University of Delaware. This teenager’s entire family was infected with Lyme disease.

Lyme disease recently took the life of a young girl who contracted the disease while in her early teens. She passed away at the age of twenty-one. Her doctor had insisted she was not physically ill but that her symptoms were psychosomatic. The doctor’s response to the girls continuing illness and complaints was to lash out and slap her in the face, telling her to "grow up". Another youngster, a seven year old girl, had a tick removed by a physician who refused to provide antibiotics, and she lost her life to the disease. Complications stemming from the disease eventually claimed the life of a little five year old boy who was born with Lyme disease after his mother was infected by a tick.

Lyme disease must be treated early and completely in order to have the greatest success in reducing the number of repeated treatments, disability, and death. Patients who were not treated properly in the beginning are now forced to spend the rest of their lives fighting to get medications to help reduce the progressively degenerating neurological and arthritic conditions they continue to deal with on a daily basis. If Lyme patients are not treated until all of the symptoms have been resolved, the spirochete has been proven to be able to reproduce and regenerate, often changing forms, and returning with a vengeance.