Pennsylvania Public Lyme Hearing 2011

Pennsylvania Public Lyme Hearing August 30th, 2011

You may also read If Long-Term Antibiotics Is Not The Answer. “Tell Us What’s Better.”

Joy Burdge, Victim, Advocate

…Lyme Disease is one hell of a battle, the battle to get a diagnosis, a battle to fight the disease, a battle to get your insurance to pay for your treatment, a battle to get the medical establishment to recognize and treat this disease as a very serious disease that it is….stories like mine are repeated over and over….

…1984 two of my children were diagnosed with Lyme Disease….seven-year old son woke up one morning unable to walk…I am a victim of Lyme Disease…victim of a medical establishment that is reluctant to test or treat these diseases…..excruciating….pain…it became a myriad of symptoms affecting one part of my body one day….learned that it is a multi-system disease….I saw over 20 doctors, speicalists, …. I endured test after test…MRI’s, catscans, EKG’s, EGG’s….I was poked, prodded, analyzed, I began to feel …. I was everything but dissected….tests revealed absolutely nothing….told… need psychological help…if you were sick as I was he would not be sitting behind his desk at work…top hospitals, over five top hospitals….to no avail…no diagnosis….prescription of choice seemed to be antidepressants….went to Mayo Clinic…twice…two weeks…that too, revealed nothing…went home believing that I was going home to die…a retired …nurse … Lyme Disease….had every symptom of Lyme Disease….how did they not know that I had Lyme Disease? …. Was told had Fibromyalgia…. Mayo Clinic states that Lyme is…over-diagnosed….Lyme Disease is one hell of a battle, the battle to get a diagnosis, a battle to fight the disease, a battle to get your insurance to pay for your treatment, a battle to get the medical establishment to recognize and treat this disease as a very serious disease that it is….stories like mine are repeated over and over….

Dr. Robert Bransfield, President, International Lyme and Associated Diseases Society

you never treat statistics…you treat the individual patient

… If we look basically at the controversy over Lyme Disease as a simple disease then we look at a risk benefit…then you wouldn’t give a very aggressive treatment ….complex… has significant risk… more aggressive treatment….would be appropriate… risk versus benefit…can’t just look at statistics you never treat statistics… treat the individual patient… every case has to be individualized…there are two standards of care….short term easy to treat…minimal treatment…look at all evidence and look at in proper weighted matter there is clear evidence for … persistent infection…quite significant amount of evidence…one opinion, is Lyme is difficult to catch, easy to treat never chronic and tests are very reliable…not an opinion that I find and experience….the fact that some people feel this is why I … see so many of these cases….if you look at the evidence…proper implementation of the evidence-based medicine…current guidelines….I challenged the guidelines…number of physicians…often based on opinion…the author quoted their own research….

… If we look at IDSA panel that made these recommendations….the more restrictive definition….we in our minds… that group of people received a significant amount …most of the research funding… based on the antiquated definition…we have to re-think the hypothesis…Dr. Benjamin Rush….signer of the declaration, personal of President George Washington unless we put medical freedom in the constitution the time will come when medical freedom will burden upon us … in an undercover dictatorship … deny equal privilege to others…. Medical freedom as well as religious freedom in ….

Dr. Edwin Yost, Anesthesiologist’s Testimony, Victim

Had the means as a doctor to see doctors in all types of specialties and travel around the world and was dismissed when Lyme Disease was presented

Traveled throughout the world for treatment…physician in-training…saw over 35 doctors, Internal Medicine, Infectious Disease, Chronic fatigue, rheumatologist, cardiologist, neurologist, etc. including members of the IDSA and Panel members of the Lyme Treatment guidelines…. Went all over the world to receive treatment and find answers…through his experience he has learned a lot and now has lingering symptoms because of the delay in diagnosis and treatment.

Dr. Harold Smith, International Lyme and Associated Disease Society

…tremendous evidence given that short-term is not effective, there many studies that show that long-term are effective…(slides shown)

What is the evidence? Evidence-based medicine…chronic Lyme Disease…ten reasons why to support Bill 272 from physician’s point of view as a physician worked in PA for 35 years, last 10 years with Lyme and tick-borne diseases, I’ve seen…1,000 Lyme disease patients, either because treated short term and got sick again, inad treated inadequately were never diagnosed….co-author of original ILADS guidelines…Lyme Disease…5,000 patients each year or could be 50,000 or more….in every county of PA…death in quality of life is very real…costs in pain and suffering…equal to heart disease….our present approach is not working…major problem delay in diagnosis…when late it is a totally different disease..later disease is much more serious…lack of education…physician education…reliance of testing…test is negative…don’t have Lyme disease….this tests doesn’t even test for Lyme Disease…result is open to interpretation…it is never …diagnostic of Lyme Disease…major fault, relying on very limitations…those are the tip of the iceberg…heart block…bell’s palsy…just the tip of the iceberg…care isn’t available for patients, have to struggle for someone to give them an option…healthcare…vested interests in Lyme Disease…sheds light on reasons for persistence (slide)…it can dormant…small number of these germs can make you terribly ill…if you can’t get rid of the germ, you have the flu every day, only difference some days are more hell than another day…coinfections…support each other…why would an external source of antibiotics work in 30 days, you make your own antibiotics and they aren’t working…so short term treatment of any kind is highly questionable…should at least offer them an option…do you want to go short term or long term? … what’s the evidence we hear…cured in 2-4 wks, serology is accurate…two really bad things that I have to deal with in my office, there is no proof that long term abx work and that they are dangerous…IDSA guidelines…based on very inadequate evidence. There are two different schools of thought on this disease…tremendous evidence given that short-term is not effective, there many studies that show that long-term are effective (slide shown 9:30 min)… evidence in my office, diagnose by patterns…Lyme Disease presents horrible fatigue, horrible pain and broad neurologic problems…individual variations…everybody has poor energy lack and …neurologic problems…pattern of improvement is the opposite of normal…sicker first…272 can do for PA recognize that the diagnosis is on a broad criteria, that negative test don’t exclude it….if you stop too soon, it comes back…the benefits of treating long term…far outweighs the risk…patient choice is essential…patient has to be given options of what to do…it is treatable, preventable, and we can do that…they slowly steadily get better…

Michael Yantis, Blue Cross Northeastern Pennsylvania Testimony

His testimony addressed the impact of Federal Health Care Reform and how this may affect the state budgets of health care mandates by states. It was also stated the “no evidence-based” treatment or trials supporting long-term treatment. He also stated the State would have to flip the bill to pay for state mandated health care treatment, where the government would not, was a bit underhanded but did present a point worth pondering.

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