This is a letter that I emailed to our representatives in the North Carolina General Assembly. Bill McGee is our State House Representative. Pete Brunstetter is our State Senate Representative.
Dear Mr. McGee and Mr. Brunstetter:
I am writing to you to express concern about diagnosis and treatment of Lyme disease in North Carolina. Lyme disease is an increasing threat to the citizens of North Carolina. North Carolina ranks among the top 20 states in reported cases of Lyme disease. The Centers for Disease Control (CDC) says that Lyme disease is under reported and that only about 10% of cases that meet CDC surveillance criteria are actually reported to the CDC.
There are two schools of thought on diagnosis and treatment of Lyme disease. The Infections Disease Society of America (IDSA) has authored Lyme guidelines for the Clinical Assessment, Treatment and Prevention of Lyme disease. This document is the accepted guideline for Lyme care conformed to by the general medical community. The treatment guidelines dictate 10-28 days of antibiotic therapy as the cure for this ailment. The IDSA denies that a chronic form of Lyme disease exists, and that those who do not respond to short term antibiotic treatment must be suffering from some other malady. For many Lyme sufferers, short term antibiotic therapy has proven to be ineffective, especially for those people who have suffered from Lyme disease for extended periods of time. There is real proof that short term treatment is not effective in case after case, and some patients have required months of IV and oral antibiotic treatment to be cured.
The Connecticut Attorney General’s office filed suit against the IDSA in 2006 sighting numerous conflicts of interest among the IDSA’s board members. These conflicts included members who were stockholders in pharmaceutical companies and members who held patents for specific Lyme treatments. The IDSA expunged one of its board members when the board member argued that chronic and persistent Lyme disease exists. The board member failed to conform and was removed.
The other school of thought on the treatment and diagnosis of Lyme disease is represented by the International Lyme and Associated Diseases Society (ILADS). The ILADS contends that there is no definitive test for Lyme disease and that a diagnosis should be made based on the patient’s symptoms, a viewpoint supported by the CDC. Furthermore the ILADS states that duration of therapy should be guided by clinical response rather than some arbitrary treatment course (ie 10-28 days)
This issue is very near to me as my wife is currently suffering debilitating symptoms related to Lyme infection. This is a person who was running 3 miles several days a week, six months ago. She is no longer able to walk or use her right arm. She is stricken with horrible muscle spasms, fatigue, and significant weight loss. My 11 year old daughter has also tested positive and is beginning to show symptoms.
My wife attempted to get an appointment with an infectious disease specialist. She was denied because she did not have a positive Lyme test. My wife’s Lyme test results were equivocal, but given her condition and the equivocal test results, an out of state Lyme specialist diagnosed her as having Lyme disease and is treating her with antibiotics. She is currently experiencing measureable improvement.
We took my daughter to another infectious disease doctor, with her positive tests in hand. This doctor disputed her test results and refused to treat here. So we have a person with obvious Lyme disease who can’t get treated because she doesn’t have an unequivocal positive test and we also have a person with an unequivocal positive Lyme test who also cannot get treated. Where are sufferers of this disease supposed to go for treatment?
The primary issue is that the general medical community will not treat this disease aggressively due to reluctance of insurance companies to cover long term Lyme treatment. Treatment beyond the IDSA guidelines garners increased scrutiny that doctors prefer to avoid. Doctors who have treated outside the IDSA guidelines have been called before the North Carolina Medical Board and had their licenses suspended.
Without proper treatment there are many extremely ill people with nowhere to turn. Only those with adequate financial resources and strong support at home have the resources to battle this. In order to get appropriate care, patients are forced to see doctors who operate out of the medical mainstream and do not deal with insurance companies, so called Lyme Literate Medical Doctors (LLMD). There is case after case of people who have been treated by LLMDs who have been cured by long term antibiotic therapy. Their treatment is very effective, but it is a huge financial burden to the infected person since medical insurance pays for very little of the cost.
North Carolina needs legislation that will protect medical providers from punitive actions for treating Lyme sufferers in a manner that is appropriate to their condition. Insurance companies need to be compelled to cover treatment appropriate to cure people of this horrible disease. Finally funding needs to be appropriated for research into more accurate testing methods.
I am requesting your assistance in this manner. Trends show that this issue is only going to get worse. It is extremely unfortunate that innocent people have to suffer when effective treatment is available. Regrettably, doctors who are shackled by insurance companies and inappropriate treatment guidelines are unwilling to help for fear of negative repercussions.
Thanks for your time.