I did a mail merge and ended up with 174 pages for all of the letters. I had to print 58 individual envelopes, sign the letters, fold the letters, seal the envelopes and apply postage. I hope all my efforts stir up some interest in the recipients.
The letter is a modified version of the letter I sent to my state representation. I made some changes to show my support for the bill that has been proposed. Here is the text of the letter:
Representative Mike Ross
2436 Rayburn House Office Building
Washington, DC 20515
Dear Members of the House Energy and Commerce Committee and Members of the Subcommittee on Health:
I am writing you to express my concerns about the state of Lyme disease diagnosis and treatment in our country. Currently available testing is grossly inaccurate. Doctors are afraid to properly treat victims of this disease because of scrutiny of medical associations who conform to guidelines that are antiquated, inaccurate, and insufficient. The health care industry is crippled by insurance companies’ reluctance to pay for adequate treatment for sufferers of Lyme disease.
Lyme disease is contracted from the bite of an infected tick. Symptoms include fatigue, fever, numbness and tingling in hands and feet, joint pain, and cognitive problems. Lyme disease is frequently misdiagnosed as Chronic Fatigue Syndrome, Fibromyalgia, ALS, and Multiple Sclerosis.
HR 1179 has been introduced by Representative Christopher Smith of New Jersey. The legislation is entitled Lyme and Tick-Borne Diseases Prevention, Education, and Research Act of 2009. The bill is currently in committee. The purpose of the bill is to increase awareness of Lyme disease and support proper diagnosis and treatment of this malady. This bill has died in committee in the last two congresses.
Lyme disease is a real and growing problem in our nation. 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. According to the CDC, reported cases of Lyme disease increased nearly 35% between 2006 and 2007.
There are two schools of thought on diagnosis and treatment of Lyme disease. The Infectious 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 condition. 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 undeniable proof that short term treatment is not effective in a large number of cases. Some patients have required months of IV and oral antibiotic treatment to achieve a successful cure.
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 another member who held a Lyme treatment patent. 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 to the dictated philosophy of the IDSA and was removed.
The IDSA is currently executing an underground pressure blitz to coerce doctors to sign on in opposition to HR1179. The IDSA is most likely motivated to save face in light of their insufficient Lyme guidelines. These guidelines were issued prematurely with protest by and skepticism from some of their board members. The wording in HR1179 goes directly against the foundations of the IDSA guidelines.
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 (i.e. 10-28 days). The wording of HR 1179 is in agreement with the diagnosis and treatment philosophy of the ILADS guidelines.
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. Now 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 has been denied treatment by several doctors including 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 and ILADS member was able to make a clinical diagnosis of Lyme disease. She is currently being treated with antibiotics. Her condition has improved since she has started treatment. Meanwhile we are preparing for denial of benefits from insurance companies as my wife’s therapy continues beyond the covered treatment duration.
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 state medical boards and been stripped of their licenses.
Without proper treatment there are many extremely ill people with nowhere to turn. 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. Unfortunately insurance companies are unwilling to support treatment of these patients by LLMDs.
This country 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. Funding needs to be appropriated for research into more accurate testing methods.
An independent documentary has recently been released called Under Our Skin. The film chronicles the plight of many Lyme sufferers and the state of Lyme treatment and diagnosis in the United States. Please take the time to watch this film. You will be overwhelmed and horrified at what is transpiring in this country with regard to Lyme disease.
Thanks for your time.
5205 Bridge Pointe Dr
Clemmons, NC 27012