Testimony on House Bill 272

Chairman DiGirolamo and members of the House Human Services Committee, I am John Goldman, MD, an Infectious Disease Specialist practicing here in Harrisburg, Pennsylvania. In addition, I also oversee the internal medical residency program at Harrisburg’s Pinnacle Hospital.

I wish to thank you for the opportunity to testify before you today on a topic that I believe merits your careful consideration. To begin, I should tell you that the Pennsylvania Medical Society opposes House Bill 272.

In a nutshell, House Bill 272 attempts to come to the aid of those with Lyme disease. If passed, this bill would create the Lyme and Related Tick-Borne Disease Education, Prevention, and Treatment Act. While the desire to help these patients is laudable, the bill as written may actually be harmful to those with the disease. As a result, the Pennsylvania Medical Society opposes it.

Within the bill is language that would statutorily endorse the use of long-term antibiotic therapy for the treatment of Lyme disease by mandating that health insurance policies cover that treatment. Unfortunately, research on this type of treatment is not proven and the overwhelming consensus of the medical community does not agree with it. Ironically, more and more physicians are significantly curbing the unnecessary use of antibiotics given the serious and growing problem of antimicrobial resistance.

The Centers for Disease Control (CDC) is an excellent resource for information regarding the prevention, symptoms, diagnosis and treatment of Lyme disease. Similarly, the National Institutes of Health (NIH) and the Infectious Disease Society of America (ISDA) have done a great deal of research on Lyme disease and should be referenced when considering the merits of House Bill 272. All three of these respected organizations continue to recommend treating Lyme disease with a relatively short course of antibiotics such as doxycycline, amoxicillin or cefuroxime axetil. Nowhere do these organizations endorse the long term use of these medications for treating Lyme disease.

Please consider the following two excerpts from an article entitled “Inaccurate Information About Lyme Disease On The Internet,” published in The Pediatric Infectious Disease Journal, Volume 23, Number 12, December 2004:

Persistent B. burgdorferi infection in patients with chronic Lyme encephalitis has not been demonstrated. Chronic subjective problems such as fatigue, headache, irritability, poor concentration, poor memory, arthralgias or myalgias do not indicate chronic Lyme disease. Some of these subjective symptoms may occur after Lyme disease and may be termed “post-Lyme syndrome.” These symptoms may be unrelated to Lyme disease and have not been shown to respond to antibiotic treatment.

The Infectious Diseases Society of America practice guidelines do not include treatment options for chronic Lyme disease because persistent infection has not been demonstrated. Combinations of antibiotics, prolonged courses of antibiotics or unusually high antibiotic doses should not be used to treat Lyme disease, because they may be harmful and have not been shown to be more effective than standard therapy.

Information from the CDC’s Prevention’s Division of Vector-Borne Infectious Diseases indicates that while patients treated with antibiotics in the early stages of the infection usually recover and a few patients may benefit from a second 4-week course of therapy, “longer courses of antibiotic treatment have not been shown to be beneficial and have been linked to serious complications, including death.”

So, up front, if we want to do what’s best for the patient, we better be sure that we prescribe the right treatment that’s been clearly proven. Until then, this bill holds great potential of putting patients at risk.

Equally important, legislative attempts to practice medicine should be avoided. Endorsing questionable medical treatment plans, even indirectly as in House Bill 272, through legislation for Lyme disease or any other disease sets a bad precedent.

Let’s not put a wedge between patients and physicians through legislation encouraging medical procedures that are scientifically unproven. Physicians need to act in the best interest of their patients without this kind of statutory guidance.

On a more positive note, there is one element within House Bill 272 that the Pennsylvania Medical Society would support with some changes. The bill calls for the establishment of a task force focused on education and prevention of Lyme disease. The Pennsylvania Medical Society applauds that section and would welcome being a resource to help educate both the public and physicians about Lyme disease.

However, we are concerned with the provision that requires the panel’s two physicians to be members of the International Lyme and Associated Diseases Society (ILADS). To our knowledge, this is the only group that supports the use of long-term antibiotic therapy for the treatment of Lyme disease. It is also an organization that, according to the above-cited article in The Pediatric Infectious Disease Journal, provides inaccurate information about Lyme disease. In order to assure that the majority viewpoint is adequately represented, we recommend that the task force include at least three physicians, with no more than one affiliated with ILADS.

Thank you again for the opportunity to share with you our concerns about House Bill 272. To the best of my ability, I would be happy to take any questions that you may have.

Add Your Comments


The Pennsylvania Medical Society encourages lively debate, but please behave courteously and responsibly. Comments that include profanity, personal attacks (including language that could potentially identify an individual), or any other inappropriate, offensive, or illegal material will be removed. For more information, please see our Terms of Use. We do not answer legal questions on line. Members seeking general information about laws and regulations affecting medical practice may call our member resource line, (800) 228-7823.

Display name as (optional):

Comments (max 2000 characters):




Comments: 48


You refer to prescribing the right treatment which is? You mention serious complications, including death. Death would be welcome as Lyme disease has robbed me of my life. Until the medical practitioners (self/family) are devasitated by this disease, we who suffer will not be considered.

MMcC at 1/21/2012 3:51:28 AM


I have been Married to Joy Mandrell Burdge for 38 years and i have seen her get sick and almost die to be able to at least go back to taking care of our home and walking 3 mles at a time. Her problem is because the testing is SO bad that they missed her Babesia and her other infections. THE INFECTIONS WENT TO HER BRAIN ! The Brain fog was going away until the Insurance Company stopped treatment by means of stopping payments for her treatment. No doctor stopped treatment the insurance companys did. This set her treatment back real bad she was doing GOOD! Question ? Whipple's Disease is treated long term with antibotics is that treatment good for the patient and long term for tick borne illnesses not good I DON'T UNDERSTAND WHAT THE IDSA AND YOU GUYS ARE SAYING. YOU MAKE NO SENSE ! IT ALL BS FROM YOU GUYS . Watch my wifes testimony in front of the human services committee in Harrisburg. Please tell me what we should have done? mainstream Medical missed my wifes illnesses and she almost DIED! WHAT SHOULD WE HAVE DONE???????????? burdge52@gmail.com Link Below. http://www.youtube.com/watch?v=r0lwBuFAI20

Alan Burdge at 1/8/2012 12:18:43 PM


I know that treatment according to my individual needs did indeed help me and not the treatment that the IDSA states are sufficient. My final note to all of you is that most doctors follow the stated guidelines used by the CDC which are the ones that the IDSA has outlined for them. After reading and hearing several of these types of stories, are you confident that you will be treated appropriately? Are you confident that someone you love will get the appropriate treatment? Are you willing to risk the well-being of those that you love to the shoddy IDSA treatment plans that are being used now?

Lydia N. at 11/26/2011 2:11:05 PM


Within the 6 wks of the initial treatment of 10 days, I was completely disabled and bedridden. There was no mistaking when my symptoms all began because I had the tick attached to me. My doctors used the standard “rubber stamp” “one size fits all” treatment which the IDSA says is sufficient.It took me two years to recover not 10 days or 28 days. I ask: Would you be able to control your feelings when your life has changed drastically? Would you be able to remain dignified when you became so ill that you had to be bathed and clothed by someone because you could not do it yourself? Would you be happy that you became so ill that you were unable to control your motor functions? Would you be able to enjoy life if everything that touched your body burned like it was on fire? Or, would you be able to remain calm when you are so ill that you can’t walk? When you were known for your great speeches and all you can do is slur or stutter? (President George W. Bush is a good example of this.)When you were known for your perfect audits and now you are lucky if you remember how to add two and two? When you used to work 45 hours or more a week and still be full of energy and now you are lucky if you can stay awake for an hour? There are many more examples including having to be assisted to just use the restroom or take a bath? Worst of all, would you want to continue to go on living if every breath you took felt like an electric current coursed throughout your entire body? Once I went through the horrible nightmare battling Lyme Disease, I was very careful and vigilant in my efforts to prevent another tick bite. However, the reason for my relapse or reinfection was Babesiosis and then further tests also showed Lyme and Bartonella. Once again, I had to go the long-term treatment, after a year, I once again am better than ever. So, I know that treatment according to my individual needs did indeed help me and NOT the treatment that the the IDSA states is sufficient.After readi

Lydia N. at 11/26/2011 2:08:26 PM


After endless trips to the ER and multiple doctors with tests that cost a fortune and treatments that either made no difference or made me sicker my primary care doc tested me positive for Rocky Mountain Spotted Fever only. Nevermind that I had all the symptoms of Lyme and multiple other co-infections. He refused to do the Western Blot due to the negative Elisa. He was insistent I must have some cancer and told us if he didn't find this cancer I would die. I got 30 days treatments of antibiotics, he said I was cured. After finding a Lyme doc that cost hundreds more and paying for a western blot there was no more doubt and I was diagnosed with Lyme and multiple co-infections after 6yrs of "baffling" doctors. My primary care doc (who was a caring person until finding out I had lyme disease) doesn't even want me in his office, says I don't have lyme disease and a yr later I haven't died from some non-existent cancer he said would kill me. Relapse after relapse I have gone through... Had they treated me when I first got sick I would still be healthy today. Now, no insurance and stacks of dr bills keeps me trying to seek out the right vitamins, supplements and herbs to stay as healthy as possible. 6 months worth of antibiotics was all my body could take because I was so very sick. As much as I am struggling through each relapse I am a lot better than I was this time last year. Chronic pain and many other symptoms has hindered my mobility and quality of life. I can no longer jump on a 4-wheeler, jog, ride horses or even jump out out of bed in the morning too quickly as my body won't allow it. Why is it if my dog came down with Lyme disease I could get her diagnosed and treated on the spot but I was some kind of medical mystery? This is so very wrong. I should be able to get tests to prevent the complications of this disease and get a good treatment plan here with my primary care doctor and not drive 3 hours to pay hundreds. Something needs to be done!

Christy at 11/22/2011 10:46:27 AM


I have suffered with CHRONIC Lyme Disease for several years now. It is a very complex disease. Education for the average PA resident to our physicians AND hospitals is needed. There is not one cure for this disease, yet one is desperately needed. People are dying from this disease, I almost died. I have been researching this disease for several years now and have found there is no one size fits all answer. Most Lyme Disease patients must do their own research to make the best decision for themselves because most in the medical field don't seem to have a clue. I have tried most of the medically available forms of treatment including IV. I was able to reach remission with my doctors help using an herbal protocol. But, that does not mean I am against IV treatment because I am not. It didn't work for me, but I know of patients that went totally herbal and that didn't work for them. It all depends on the individual. Its time the Medical Society and the Pennsylvania government as a whole realizes that each patient and their doctor must be allowed to choose which treatment is right for them. The patient should have the right to choose his or her medical treatment.

Bambi L Albert at 11/22/2011 10:45:45 AM


I suggest that anyone who opposes this bill be allowed to be bitten by a tick carrying lyme disease and other tick-borne diseases and then be denied ANY care for at least one year. Then try and seek treatment. That is what has happened to many since our testing process is useless. I will guarantee every single person will change their tune and support this bill. If you haven't been there you wouldn't know. My husband, I, and both my children have suffered through years of pain and loss of productivity due to this disease and our ignorance of proper treatment and diagnosis. I pray that those who listen will really HEAR!

s.k. at 11/22/2011 9:24:58 AM


I live in York Co. and was refused treatment by a MD. in York due to my cronic lyme..and personal MD said he could treat me due to the rules of treatment and if he continued to treat me with more antibiotics he would get in trouble..So I had to go to a LLMD in MARYLAND. That ment money out of pocket, My labs were covered under BCBS but nothing else, so I went through a lot of money out of pocket. I am single and 58 years old and I needed that money for retirement. So please see it in your heart to pass a bill that could help us..Thanks.

Bonnie Glick at 11/9/2011 4:41:40 PM


One must certainly question Dr Golman's motives. Why would he and the PA Medical Society refuse to acknowledge the ever increasing amount of science based research on Lyme and related tick borne diseases? Why would he be so entrenched in antiquated doctrine? What exactly would the basis be in protecting such outdated sacred cows? Isn't it time to remove the Lobbyists and Special Interest groups that are currently preventing good science and medical research from reaching sick patients? As a once healthy, vibrant individual I am now sick with Lyme and must go out of state to get the level of care I deserve. All I want is a PA based Dr who is permitted to inform me of my treatment options. Freedom of choice, not a legislative wedge, is all I ask.

2 year Lyme Sufferer at 11/1/2011 9:39:46 AM


I was diagnosed with Lyme in 2005, in 2006 during IV treatment I suffered a complete brain stroke. Although the hospital insisted the stroke was not from the lyme disease, my current doctors beg to differ. You would think, after suffering a complete brain stroke while on long term IV treatment that I would be totally against it, I am not. I have researched lyme disease daily since 2005 and know one thing is definite, 3rd phase lyme is not easy to treat and what may work for one patient may not work for another. Long term IV therapy did not work for me, I got to remission using a completely herbal therapy, BUT, that does not mean I am against IV treatment for lyme disease. Being a very complex disease, IV treatment may work for some and not work for others. Sometimes both IV and Herbal treatments are needed to get to remission. You, perhaps should have consulted a few long term lyme victims before making your judgement.

Bambi L Albert at 10/31/2011 6:25:33 AM


http://www.ilads.org/lyme_programs/lyme_events_video.html#page=page-2 Watch the conference stream OCT 28-30 for science based information on Lyme Disease DX and TX. You can't say the evidence isn't there - you can only say that you refuse to acknowledge it. Take what you will, but how can you decide if you refuse to listen with an open mind and/or participate in the debate? Being a lemming never solved anything for anyone, ESPECIALLY SICK PATIENTS! Taking PA Med's word for this, without investigating for yourselves, is irresponsible. Want to be a hero? Open your eyes and see what is right in front of you every single day, and then DO something about it.

Getting Better thanks to Heroic MD at 10/29/2011 6:28:54 AM


ILADS Conference: Scientific Evidence presented over the next three days, starting today Friday Oct 28; SOLD OUT in Toronto and offering FREE LIVE STREAM: http://www.ilads.org/lyme_programs/lyme_events_video.html#page=page-1 What a wonderful opportunity to learn about the current findings and treatments for Lyme Disease and Associated Illnesses.

Donna at 10/28/2011 6:32:31 AM


Lymer disease is real and its here and if we dont adress it properly it will take a huge toll on the American society. I am saying this becuase I am living a hellish reality. I was undiagnosed for almot 5 years, one and a half of those years I became severly sick and bed bound. The way I see it is this disease stole years of my life, but it also stole from society, I had to stop working, had to stop voluntering, could not shop for anything (physically), could not take public transport (I was having so many neurological issues that I was affraid I would collapse at any moment). All in all the cost both for me and for my social surroundings has been to high. By IDSA and CDC standars I didn t have lyme, I was tested with the ELISA test, which I now know is absolete if infeceted for a very long period of time. Yet I had all the typical sysmptoms of Lyme (Borrelia B.) according to the list of both CDC and IDSA, like fevers, low grade fevers, joint pain, tiredness, headaches and the like but as time and disease progressed more sysmotoms added on and mosst of these were neurulogical, like loosing my balance, going numb and not been able to move, having constant flashes and eye disturbances. What really gets me and what I find scary is the fact that 'scientis' from boht CDC and IDSA, negate the fact of chronic lyme. One thing science has shown many times is the constant evolution of the species, well bacterias are species and they get to evolve and learn. At the end it is the survival of the strongest, right? So why are these docotors not open to the fact that this bacteria has learned, has evolved, knows how to hide and survive. Its almost like they are not true scientist! Come on!!! Comes down to this, do they really have to go through my living hell to understand?

Ira Gerard at 10/25/2011 1:30:26 AM


Who decided the ILADS doctors provided inaccurate information? You? Infectious disease doctors who are paid by the insurance companies not to treat or even diagnose Lyme and its coinfections. Or the insurance companies who are fighting this bill and trying to put the drs out of business. The drs who are putting the lives of thier patients ahead of thier own. Maybe you or someone you love needs to get infected with this horrendous disease. Making it imposible to work with the horrible pain we suffer with on a daily basis. As well as other symptoms such as cognitive issues, hearing loss, vision dificulties and loss. What I'd like to know is how my dogs could be easily diagnosed in the vets office, my 15 lb. dog with lyme and my 20 lb. dog with Ehrlichia. Keeping these weights in mind, both dogs were treated with 100 mg of doxycycline for 30 days. I on the other hand weighing 180 lb. was treated for 14 days of 100 mg. of doxycycline and at the end of that treatment I was bitten again and had the bull's eye rash but my dr did not feel it "necessary" to treat me with more doxy since I was on it when reinfected. Needless to say I started having severe symptoms only a short time later. Muscle pain, cognitive issues, swollen glands, a headache worse than any migraine that lasted 2 1/2 months, etc, ect. My dr sent me to an infectious disease dr who would not run any tests because the Elisa test I had earlier had come back negative. There are 3 possibilities that test came back negative. I was on antibiotics or done too early or unreliable. But she did charge me for the office visit which was a whole 5 minutes of her time. I suffered for 5 years. I finally found a dr who diagnosed me with lyme, babesia and bartonella. The Western Blot which he had done came back positive for both the IGG and IGM. So DR.Goldman maybe you should be a little more open minded and really do more research on your own or read some of the results of testing other than those that you agree with.

Deb at 10/24/2011 11:36:47 PM


In response to Dr. Goldman's letter to the House Human Services Committee regarding HB 272, I respectfully disagree. As a patient, living with chronic lyme disease, I would ask that he invest some of his time to actually review the literature. As a scientist, I have done so. My review, which includes research coming from Columbia's Lyme and Tick-Borne Disease Research Center, has prompted me to seek out the help of a member of ILADS. Thank God there are doctors who are willing to go against the grain in order to meet their patients needs rather than the needs of special interest groups. For the first time in 20 + years I am feeling like I have my life back. I have been relatively symptoms free after being treated with IV rocephin for three months. Being an advocate for informed consent, as we all should be, why is it so frightening that patients be given the opportunity to become fully aware of what the medical community can provide rather than be offered just one treatment option? You, sir, have taken the hypocratic oath to do no harm. I can personally say that each and every doctor that has treated me for "fibromyalgia" over the past 20 years has done just that. I have been mistreated and harmed as a result of ignorance and bad science. In this technological age we the patient no longer need to rely solely on what our doctors tell us. We can become better informed and we are doing so. It is time for us to advocate for ourselves and as a patient with chronic lyme I say to you, Dr. Goldman, we do not need your help in advocating for us if this is what you offer. Your argument is one-sided, outdated, and harmful!

Tiffany Griffiths, Psy.D. at 10/16/2011 11:28:54 AM


My wife has spent her life as a professional and a person loving and caring for and about people. The very profession she respected/supported disappointed her! Pain, suffering, sleep deprivation, endless joint surgeries due to Lyme Arthritis, history of innumerable tick infestations, classic symptoms, rashes, neurological problems, to include speech, gait, assimilating thoughts and words, tremors,tics, fasiculations,cardiac irregularities, episcleritis,blurred vision, neuropathic pain and much much more. Yes- I am also a medical professional who developed similar symptoms my wife was experiencing.(6 mo later) Doctors told us we were puzzling."You have us stumped." WE kept telling them WE HAD LYME DISEASE. Finally on our last visit, the Dr. actually said: I think the two of you do have LYME. DA!!!!! It is time for the truth to be told. We have experienced long-suffering, and no one listened. Why then do we listen to Doctors? We expect and desevere much more. You took an oath to "First do no harm", yet you do with intention in this particular matter of life and death. You prescribe medications for your patients that hold far graver consequences than antibiotics. If your Mother, Father, Sister, Brother, child was diagnosed with Lyme and other tick borne diseases and experienced NO improvement of symptoms after 28 days of antibiotics, would you stop treating them?? Of course you would not. Different strokes for different folks. My wife was labeled with a disease that she did not have and was never confirmed by any testing, but yet was treated with harsh, toxic drugs that in actuality hastened the infectious diseases. We would both be enjoying the best possible life without Lyme and TBD's. The improper diagnosis and treatment delay (20 plus years) cost us our quality of life. When will you take the time and get "up to snuff" on research!!! YOU owe us that! You owe it to yourself, DR.

Devastated husband of a lyme patient: My wife at 10/13/2011 11:58:03 PM


People can also suffer from the effects of cancer treatment. Does that mean they shouldn't have the option to try it? Of course not! This is such an illogical line of thought. What on EARTH is going on? It is nothing short of criminal negligence now. It cannot be said any longer that "we didn't know"... "we didn't realize"... "we had no idea about the debilitating effects of lyme diseas and coinfections". "We never knew there was another treatment option." It's only a matter of time before doctors like Dr Goldman are all called before judges to defend their foolish and cowardly actions against patients who only want what every OTHER patient has the right to: viable options, and the right to make an informed decision.

anonymous at 10/13/2011 9:22:28 PM


People can also suffer from the effects of cancer treatment. Does that mean they shouldn't have the option to try it? Of course not! This is such an illogical line of thought. What on EARTH is going on? It is nothing short of criminal negligence now. It cannot be said any longer that "we didn't know"... "we didn't realize"... "we had no idea about the debilitating effects of lyme diseas and coinfections". "We never knew there was another treatment option." It's only a matter of time before doctors like Dr Goldman are all called before judges to defend their foolish and cowardly actions against patients who only want what every OTHER patient has the right to: viable options, and the right to make an informed decision.

anonymous at 10/13/2011 7:54:55 PM


People can also suffer from the effects of cancer treatment. Does that mean they shouldn't have the option to try it? Of course not! This is such an illogical line of thought. What on EARTH is going on? It is nothing short of criminal negligence now. It cannot be said any longer that "we didn't know"... "we didn't realize"... "we had no idea about the debilitating effects of lyme diseas and coinfections". "We never knew there was another treatment option." It's only a matter of time before doctors like Dr Goldman are all called before judges to defend their foolish and cowardly actions against patients who only want what every OTHER patient has the right to: viable options, and the right to make an informed decision.

anonymous at 10/13/2011 7:27:38 PM


Endorsing the doctors RIGHT to prescribe long term antibiotics is not the same thing as requiring the doctor do so. The bill, if passed, will allow doctors to use reasonable means to help their patients. It allows doctors to make choices based on their professional experience and training. It allows patients an alternative on day 29 when the 28 day course of antibiotics fails to solve the complex problems of lyme disease. The bill, if passed, will provide doctors with the professional freedom to actually abide by their oath, to first do no harm. Many illnesses are treated with long term antibiotics and those patients are not blamed for participating in creating dangerous drug resistant bacterial infections. Even ACNE is seen to be serious enough to warrant YEARS of antibiotic treatment (the same one used to treat lyme, by the way). The truth will out. It always does. To the doctors of the state of Pennsylvania, I urge you to read the document for yourself, as once again it is misrepresented by your Medical Society. Please consider the language of the document as it is written, not as it is reported here. How can a physician, in good conscience, refuse to even try to treat a patient having heard ALL of the evidence that support long term antibiotics as an effective approach for many? It is beyond me. ANY treatment carries risk, but I'd be dead today with out the treatment I had to go out of state to receive. We all know the risks. The risk of failure to treat is far greater than the risk of trying. The PA Med Society creates one of our greatest risks by continuing to hold it's collective head under the sand.

Fully Informed in PA at 10/13/2011 4:01:16 PM


Two former IDSA members sumbitted written testimonies at the House Bill Hearing- in support of HB 272. Even after listening to compelling, heart wrenching stories of over 7,000 people known/suspected to be infected in PA, including a 13 year old girl from Mechanicsburg (now in a wheelchair) you said the PMS would not support the long-term use of antibiotics, frequently needed as part of the treatment plan for those who do not respond to short term antibiotics. LD is often mis-diganosed, under-treated, or not treated at all because of the inaccuarcy of current testing and rigid guidelines, intended to be just that- guidelines- not for diagostic purposes. Would you deny a terminally ill cancer patient the right to receive chemotherapy? A friend received 5 years of chemotherapy (paid for by her insurance company) following diagnosis of Ovarian Cancer. And- she had five more years of LIFE- her right. What about treatment for breast cancer, AIDS, bacterial mengigitis, acne, cellulitis? Please site when prudent practices changed based on opinion, instead of scientific evidence!!! (The IDSA Guidelines) Is this then how the future of healthcare will be established- on opinons- the weakest form of evidence? At what cost and to whom? If you answered the patients, you have a yes. A travesty of injustice indeed. Health care RAPE. My own costs for health care involving advanced CNS LD would have been significantly reduced, had I been diagnosed earlier and treated. Your denial to treat is inducing additional costs for care, not only patients, but insurance companies(not reducing costs),while superimposing deleterious risks for patients. There is injury. There is harm. There is violation of the Patient Bill of Rights to be informed, and thus make a choice.

Lyme Literate Professional at 10/13/2011 2:30:30 PM


ALL patients who manage challenges related to chronic illness/disease have a right to informed consent! The choice to fight for life and improved quality of life IS an inalienable human RIGHT! This is being violated by Dr.'s like you! Other conditions, which you well know, are being treated with long-term antibitics without question, but not LYME! I view this not only as a conflict of interest, but a double standard of care which is discriminatory and manipulative. It is imperative to stop the control of insurance and pharmaceutical companies gaining momentum/control involving the practice of medicine. You are supporting this dictatorship, and patients are being HARMED with lives at risk! This could one day be YOU- what would you do??? By law: There is a duty owed, there is breach of that duty, there is injury, and there is a cause related to the injury. As a professional, that speaks malpractice through willful concealment of the truth and is a health care DISASTER proliferating human suffering. Patients have a right to know the two standards of care, and the right to choose. This is clearly abuse of a system not considering the PATIENTS RIGHT to informed choice. The focus is on COST, not maintaining/preserving the gift of LIFE. What will it take to end this debate? This is a huge mistake, and Dr- you are contributing to this disaster by not reviewing the research. The wake up call is God's megaphone for CHANGE. May you and the PMS rise to the occasion before you or a family member/friend become ill from an infected tick!!! Only takes one infected tick to do the nasty trick.

Lyme/TBD infected RN at 10/13/2011 11:09:58 AM


It was my blind faith in my doctor that left my family members and myself with less than satisfactory treatment and years of ill health. I fell for the scare tactics that doctors use that all lyme specialists are only out to make money and put everyone on IV antibiotics. Now I know that first-hand that that is not true and any care from a lyme specialist would have far exceeded the non-care that I received from uneducated medical practitioners. The complexity of symptoms has doctors refer patients to neurologists, rheumatologists, endocrinologists, infectious disease doctors, psychiatrists, etc. The problem is that these doctors look only at their area of specialty and not the patient as a whole. A quick search PubMed reveals 176 studies on lyme disease and arrhythmia: http://www.ncbi.nlm.nih.gov/pubmed?term=lyme%20arrhythmia Pubmed also has 35 studies on lyme disease and anxiety and several on bartonella and anxiety: http://www.ncbi.nlm.nih.gov/pubmed?term=lyme%20anxiety How many new studies have you read? The IDSA’s narrow parameters in the treatment of lyme and associated diseases seems to only apply to recent infection. The guidelines did not include any of the research by top lyme researchers. CT Attorney General Richard Blumenthal stated that, as a result of his antitrust investigation of the IDSA and its 2006 Lyme Disease Practice Guideline authors, he found numerous conflicts of interest held by those authors: http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284 It’s time for PA doctors to get educated with all the available studies out there and become familiar with ILADS guidelines and think for themselves instead of following the current flawed guidelines of IDSA.

Linda at 10/12/2011 11:07:51 PM


Everyone in my family has had lyme over the years, as we live in an endemic area, but we were fortunate enough to eventually get educated and seek better testing and treatment. Let’s compare the outcomes of treatment of their symptoms using IDSA guidelines vs ILADS: Patient 1 Symptoms: joint pain, monthly recurring low-grade fever, headache, stomach pain, swollen glands, anxiety. Tested negative using Quest labs. Treated by traditional doctors with 7 days of antibiotics and psychiatric counseling. Symptoms worsened over a period of one year and then included fatigue, neck pain, exercise asthma and cognitive difficulties resulting in more sick days and needing to be home schooled. Patient 1 took the Bowen Q-RIBb test which came back positive. Patient 1 then saw a lyme specialist. IGeneX testing came back positive for lyme and bartonella. Treatment with two rounds of 4 months each of Ceftin and Bactrim DS completely resolved all symptoms. Patient 1 returned back to healthy self again and returned to school. Patient 2 presented with recurring low-grade fever, headache, stomach pains, swollen glands. Treated with normal round of antibiotics by family doctor. Symptoms worsened over the course of one year to include: fatigue, chest pain, chronic cough, cognitive difficulty and trouble with word recall resulting in many sick days and needing to be home schooled. Patient 2 then saw a lyme specialist. IGeneX testing came back positive for lyme. Treament with 4 months of Ceftin completely eradicated all symptoms and Patient 2 was able to resume all sports and excelled at school. Patient 3 had monthly recurring headaches and joint pain, pain behind eye, panic attacks and fatigue. Local clinic offered no help. Lyme specialist tested using IGeneX and found lyme and bartonella. Patient 3 fully recovered with 2 months of antibiotics

Linda at 10/12/2011 11:06:18 PM


I was sick for one year before being properly diagnosed and treated. I tested negative with all the lyme tests at the local labs and MDLabs. The first western blot test I had was actually positive but not CDC positive. One doctor said I had the symptoms of lyme but would only treat me with one month of 100 mg. doxy. I noticed improvement over that month but the following month my symptoms slowly returned and increased in number as well as severity, including a low grade fever (maybe a sign of infection and not depression?) I waited three months to see an infectious disease doc who told me that “Everyone thinks they have lyme but they don’t.” It is this narrow mindedness that causes much suffering for lyme patients. If I had been treated correctly at the beginning, I would not have gone on to develop arrhythmia, pain down my arms and legs, numbness and tingling in hands and feet, swollen joints, migraines, neck pain, tinnitus, cognitive difficulty, memory loss and fatigue. Mainstream doctors said maybe I had fibromyalgia or chronic fatigue and would offer me antidepressants, pain killers and sleeping pills which would only mask some of my symptoms. It was not until a friend encouraged me to get better testing and see a lyme knowledgeable doctor that I was finally diagnosed and treated. The only labs I tested positive for lyme were the Bowen Q-RIBb test and IGeneX labs. I had to have a picc line inserted and receive 10 weeks of IV Rocephin. At the end of my treatment, I was back to my previous self. Eventually, a few remaining symptoms surfaced which turned out to be bartonella which I also tested negative for but was clinically diagnosed. I needed a different antibiotic to treat the bartonella after which I got my life back.

Linda at 10/12/2011 11:05:10 PM


The false presentation of many infection physicians is the unreal notion they actually STUDY IMMENSE HOURS MANY TYPES of tick infections. Lyme? What is Lyme alone? If you were up to date and had read 5,000 plus articles, you would not have to pretend that you know so much. I treat IDSA’S immense failures that have clear damage, at times irreversible because the one infection treated in the highly diverse infection clusters in I. scap. tick stomach is never merely Lyme. One or more strains have no test. Other new species of Babesia and Bartonella in Genetic public banks have no test and infect humans. YOU DO GREAT WORK treating very complex HIV, Hepatitis A--Z, TB, MRSA, Pneumonias, Sepsis and the real things in your practice. Your group are like shoulder surgeon experts that say they know all surgeries, and pathetically offer Babesia dosing that fails--if you know from read 1,000 articles how to spot, and does not even mention the top immune suppression vector born infection in the world, Bartonella. I am glad older physicians, with such loyalty to organizations, allow them to control them and do the work for them. When my family was dying in PA and all the big names and centers were worthless, more open minded non-protocol physicians saved their lives. By this physician’s comments, he is filtering away the worst patients who will cause him to stay naive. Stick to AIDS and Hepatitis and get out of the way.

REAL RESEARCH MD/NOT HIV MD at 10/12/2011 8:57:26 PM


The lie about infection physicians is the absurd notion they actually study tick infections. Lyme? What is Lyme alone? If you were up to date and had read 5,000 plus articles Sir, and not merely treating very complex HIV, Hepa A--Z, TB, MRSA, Pneumo, Sepsis and the real things in your practice, you would not have to pretend that you know so much when I treat your immense failures Your group are like shoulder surgeon experts that say they know all surguries, and pathetically offer Babesia dosing that fails--if you know from read 1,000 articles how to spot, and does not even mention the top immune suppression vector born infection in the world, Bartonella. I am glad older physicians, with such loyalty to organizations, allow them to control them and do the work for them. When my family was dying in PA and all the big names and centers were worthless, more open minded non-protocol physicians saved thier lives. By this physicians comments, he is filtering away the worst patients who will cause him to stay niave. Stick to AIDS and Hepatitis and get out of the way.

REAL RESEARCH MD/NOT HIV MD at 10/12/2011 8:40:35 PM


The House Bill 272 as proposed does not say that long term antibiotics must be used in every case, only that when the treatment is warranted and ordered by a physician, that the insurance company must pay. The usually "recommended" short term antibiotic therapy treatment may be adequate for acute cases caught early. Other cases may require longer term therapy. As a patient at NIH, I was treated for approximately 6 months total with IV antibiotics and for an additional year with oral antibiotics. This was outright treatment in a natural history study. The illness itself and the required treatment vary from person to person. There are a variety of infectious illnesses which for some cases short term antibiotic therapy may be adequate, but for other cases longer term treatment is necessary. The debate as posed by Dr. Goldman, long term treatment v. short term treatment is a false debate, and should not be put in the way of a Bill that would insure that particularized therapy for certain patients be covered by insurance. It is important, also, to insure that many points of view are represented, so having at least one ILADS physician on the panel does seem to make sense. Categorically embracing the most conservative views as to treatment in the blind, without considering the particular patient involved, seems short sighted and far short of the responsibility a physician must undertake in treating a patient. Do reconsider you views Dr. Goldman, and see this Bill as a means to require insurance to cover what may very well be appropriate therapy for certain types of patients. My own insurance would not have covered the treatment I recieved at NIH. This Bill would require the insurance company to pay. Please do not stymie passage of this Bill by putting a false debate in its path.

Former resident of Hershey PA, S. Terry Schubert at 10/12/2011 8:34:17 PM


as a physician who had a tick bite and a bull's eye rash,and because theElisa test was negative was told I do not have a tick-borne infection,I disagree with this position.Because I was not treated,I developed symptoms 3 years later.A short course of antibiotics was insufficient to cure these symptoms.There are many cases like mine that are suffering from a chronic TBI and require support and clinical judgment.

anonymous at 10/12/2011 8:17:15 PM


Lyme is a very bad disease, it makes you fell like you have the flu all the time, body, joints and mussels hurt like no other pain you have ever felt. There needs to be some kind of support for this disease. most people that do have insurance arn't covered with this disease.Some have even just been left to die. Need to do something to help all these people.

LML from ocala, Fl at 10/12/2011 7:37:42 PM


There are a handful of individuals who have controlled the Lyme disease research/funding for decades and ultimately the data published. Why is it that we all know someone who has been severely debilitated by Lyme disease when the IDSA/CDC claim that Lyme is easily diagnosed and treated with a short course of antibiotics? There are now seven states which have passed legislation to protect clinicians who treat late stage Lyme with long term antibiotics CT, RI, MA, MN, NY, NH, and TX and there are support groups in nearly every state with nineteen in Pennsylvania alone. The first line screening test for Lyme (Elisa) is producing false negatives and patients are told they do not have Lyme disease. A follow-up Western blot test which is much more sensitive is forbidden when the Elisa is negative. The Western blot is only allowed after a positive Elisa to rule out a false positive. How do we rule out a false negative? We don’t! This is criminal.. Those who treat Lyme exclusively no longer use the Elisa. Misinterpretation of laboratory results is the main reason why the medical community is dismissive of Lyme patients and their symptoms. Faulty diagnostic tests create confusion within the medical community causing the physician to miss the narrow window of opportunity for successful short term treatment which is now creating a backlog of late stage Lyme disease patients. Since we only test for antibodies against the infection and not the bacteria itself there are no tests to rule out active ongoing infection. If the IDSA and CDC got it right with their “one size fits all” treatment approach for all stages of Lyme disease and two tier test method why then do we have this much legislation involving Lyme disease? The German Borreliosis Society has recognized that the two tier system we are currently using to test for Lyme disease is inadequate. http://www.borreliose-gesellschaft.de/Texte/guidelines.pdf Carl Tuttle Website: New Hampshire Lyme Misdiagnosis http://h

Carl Tuttle at 10/12/2011 7:32:45 PM


I have been in bed for over a Decade at the hand of Lyme. I have no Support system, few cognitive time where Im able to express myself. No support in any way, left to die alone. Ive tried to get help, but found none. Takes for self advocacy requiring Cognitive fluency over time has been lost, so anything I do try is lost. Lyme is in part, but severely cognitively disabling .. yet is not considered to be a Mental Impairment where help might be available for this symptom alone. This alone would be very helpful, most do not understand why an individual does not act on their own behalf. Its simple, Mental Impairment .. they are Cognitively unable to act on their own behalf even though they know what is best for them, they dont have the cognitive ability to follow through.

Denise Young at 10/12/2011 6:57:35 PM


With the New Testing Available "New Borrelia Culture Test" there is no dispute that there is Chronic Late Stage and other infection, rather than a response to activated immune defense. We Are Americans with rights and should innately have the choice to the treatment "WE" decide is most appropriate for "ourselves". Having this horrid infection, no support is difficult enough .. to have the medical community impeeding treatment leaving us to suffer is inhuman at best !! While under treatment many Toxins are released, its not something we wish to go through. It is of utmost importance that this horror be addressed and solution found to mediate this reaction that is some times called Herx reaction. But if you look up Herx, it is short term. Many, many with Lyme have intolerable reaction from toxins released .. it is torturous to under go treatment that is the only way we have of getting well no matter what form of treatment we choose. It Needs Research. Months and Months, Years and Years of this is simply intolerable and something that Must be researched and remedy found to bind/mediate reations. New Culture Based testing: http://www.betterhealthguy.com/joomla/blog/248

Denise Young at 10/12/2011 6:45:52 PM


http://www.ncbi.nlm.nih.gov/pubmed/15508783

Dolores Claesson at 10/9/2011 7:05:54 AM


Dr. John Goldman please do some more research before you have an opinion on the treatment of lyme disease. Lyme is a mult-factorial illness which includes bacteria, protozoans, over 100 viruses, fungi and parasites. Research out of Germany shows that different kinds of Borrelia respond to different antibiotics so a short course of doxycycline may not touch the particular strains of Borrelia senso stricto or lato that you may have. Brucella, Mycoplasmas and Chlamydias which are known co-infections are known to be chronic and the chronicity is postulated to be as a result of the macrophages tolerating the pathogens within them. There is so much research out there pointing to the chronicity of Borrelia that I find it amazing that you can actually have this opinion. Antibiotic resistance may be as a result of America feeding antibiotics like candy to its animal population. Research is being done to figure out how to block quorum sensing both inter and intra species communication of bacteria and biofilm busting agents to break up biofilms which may be another explanantion for antibiotic resistance. We need to target the correct antibiotics, anti-virals and antifungals and anti-parasiticals to be efficacious at destroying the myriad of pathogens within lyme patients. We also need excellent testing to ascertain which pathogens are within lyme sufferers. For instance, we can give doxycycline for years but that will not eradicate Brucella, Tularemia, Q fever, or many kinds of Borrelia. UNDNJ in NJ has figured out the genomic structure of 13 kinds of Borrelia. Lyme patients have multiple kinds of Borrelia within us all succumbing to different antibiotics as well as many other pathogens requiring different medications. Your naivete in understanding these complicated pathogens is harming the world wide epidemic of lyme sufferers. If you want some research please feel free to contact the ILADS physicians. Lyme patients know more than any IDSA representative.

Dolores Claesson at 10/9/2011 6:56:53 AM


Dolores Claesson 07/29/11 Lymies...I would get all these tests...Western Blot for Borrelia, also test for Borrelia hermsii, and Babesia duncani and microti and Quest can test for duncani, Bartonella henselae and quintana, Brucella, Tularemia, Coxiella burnetti or Q fever, many rickettsias ie Rocky Mountain Spotted Fever, Typhus, Ehrlichia, Anaplasma phagocytophilum, EBV, CMV, all Coxsackie viruses, and now Powassan virus and its cousin Deer Tick Virus, HSV 1 and 2, HHV 1-8 if available. Parvovirus B -19 papillomaviruses, Toxoplasmosis, Chlamydias and Mycoplasmas and get genetic tests for hypercoagulation like Mthfr and Factor V leiden, and test all your IgG subclasses 1-4, and CD 57 and C3a and C4a and CBS mutations and HPU/KPU and mold testing since so many of us have issues with mold. ECP or eoisonophil cationic protein seems to suggest to docs that you have babesia. Also transfer growth factor b-1 and Beta Strep. High CD 57 counts may be associated with Beta Strep. Heavy metals have a part in this and we are low in Secosteroid D or vitamin D and some are low in Potassium and others iron. Many are deficient in all amino acids. Our hormones are a mess and the whole HPA Hypothalmic pituitary axis is the problem. We can have probs with our adrenals and thryoid...we do not convert T4 to T3 and in my case I have high reverse T3 or rT3. We are quite low in testosterone as well. Check out every hormone in your body, amino acids and vitamins and minerals. There are over 100 viruses we can get from a tick and also many parasites. The labs that insurance covers can't find a parasite when we can see it under the microscope. Quest at Nichols Institute in Valencia California can culture samples and might even be able to distinguish Brucella suis from melitensis or arbortus. We also need an MRI of our brain with and without contrast. Many lymies are showing up with pituitary adenomas and pheomchromocytomas. Make sure that you do not have these. I have spent years trying to fig

Dolores Claesson at 10/9/2011 6:40:31 AM


Well, some of the things in this article are correct and others not. Lyme disease is a multi-factorial illness in which the tick salivates and injects multiple pathogens within its host. Some of those pathogens are Borrelia which is one of the infections as well as Babesia, all kinds of ricettsias such as Rocky Mountain spotted fever and Typhus and Anaplasma phagoctophilum, Ehrlichia Chaffeensis, Bartonella, Tularemia, Brucella, Coxiella burnetti or Q fever, Leptospirosis, Mycoplasmas, Chlamydias, and over 100 viruses, including, Powassan virus in WI and its cousin Deer Tick virus in Long Island and Coxsackie viruses A and B and Parvo virus B-19 and Herpes simplex viruses and HSV 1 is linked to the Bells Palsy. Fungi, and parasites such as Toxocariasis (larvae of immature worms) and many not yet discovered pathogens. The NIH and its division NIAID want a vaccine, so everyone is scrambling to find a vaccine. Erol Fikrig at Yale had a brilliant idea to find something that would disable the tick from regurgitating the contents of its mid-gut. This so far is no where near 100 % protection and he and others came up with an initial vaccine, Lymerix which was solely against Borrelia but caused life long arthritis in certain people. Money would be better spent trying to understand these pathogens and how they affect the immune system. Chlamydias, Mycoplasmas and Brucella are well known chronic infections and it is postulated that macrophages are tolerating the pathogens enabling them to live within the macrophages. A Princeton professor is working on blocking the inter and intra communication of bacteria known as Quorum sensing. This may be a new frontier to deal with antibiotic resistant organisms. She is incorporating Borrelia burgdorgferi in her research. Another problem with these pathogens is that they most likely are building bio-films so that they are shielded from antibiotics. Bio-film busting agents may prove beneficial to eradicate some of these bacterial infect

Dolores Claesson at 10/9/2011 6:36:51 AM


I believe the proposed task force should be established but before we educate the public we need to research efforts to be geared towards accurate testing and consistent effective treatment plans for those with Chronic Lyme. You can call it whatever you want...Post Lyme or Chronic Lyme but the reality is that there are more people than you know suffering with debilitating pain, fatigue, etc. All I want is for my doctor to be able to treat my illness in the way that he believes is in my best interest without the threat of losing his medical license. Lyme disease is getting more attention lately (thank God) which will lead to more research dollars going into accurate testing and effective treatment. I for one can't wait.

Darla Brown at 10/7/2011 2:14:33 PM


Doctors who treat family members with Lyme treat them with long term antibiotics. People who have just been diagnosed with Lyme they have had for years because of misdiagnosis due to incompetant doctors get better with long term antibiotics. Insurance companies dont want to pay for expensive treatment, so the government is trying to stop the treatment that we so desperately need. Doctors should have the right to treat based on clinical experiance and denying people the antibiotics they need is horrible. These doctors that try to take away the right of other doctors to treat should be ashamed.

Melissa at 10/6/2011 8:35:40 PM


This is really, very frustrating. The Only way these "people" will ever truly understand the seriousness and chronicity of Lyme and other tick-borne diseases, is if they themselves get it. However, since they are so against the concept of "chronic lyme", perhaps they will be satsified with a diagnosis of Parkinson's disease, ALS, Alzheimer's, MS, Lupus, Fibromyalgia... etc etc etc. Perhaps they will be satisfied "knowing" that they are being treated for their terminal illness. While, in fact, the immunosuppresant therapy is simply making their condition worse... ...I simply cannot believe that this total ignorance and closed mindedness is still so unbelieveably pronounced.... what year are we living in? ...and how many people are on antibiotics every day for acne?? TB?? What about HIV/AIDS patients? Hepatitis patients? They too are on a meriad of antimicrobials... As it took for HIV/AIDS, so it will for Lyme. It is absolutely unacceptable that heartless and mindless people are allowed to make decisions about things that they have NO idea.. Then again, the screening for medical school isn't that great anyway..... :/

anonymous at 10/6/2011 8:06:32 PM


I TOTALLY disagree with your statement and support HB 272!

anonymous at 10/6/2011 5:30:59 PM


My friend has been diagnosed with POTS disease and treatment for this condition has left her gravely ill. She DOES have 57 of the 76 signs/symptoms of Lyme disease but NO Dr has so far been willing to discuss the possibility of treating her for Lyme simply because she tested negative for Lyme when we all know this test is inconclusive. The ONLY time she seems to get better is when she is on an antibiotic for another diagnosis ie UTI but after a short time she gets VERY sick again. We need to value our pts life far more than this attitude that if the CDC says the tmt isnt compliant with what the insurance companies are willing to pay then the treatment ...must not work???

Trish at 9/14/2011 12:55:57 PM


what this bill does educates docs on all the treatment options for LYme. allows docs to treat longer if short term antibiotics don't work-this is necessary because there are reports of practicing physician's being told by insurance companies that if they don't stop treating lyme patients for longer than 4 weeks they will no longer allow any of their subscribers to receive reimbursement for any care at all from them. Basically, the doctor would be out of business with all the people insured by the insurance company. Insurance companies have made complaints to medical boards and physicians have been brought up on charges for prescribing longer than 4 weeks despite the fact that there is valid research showing longer is necessary and affective for some strains of the illness. Researchers have had similar harassing phone calls, your career will be over, you'll be out of work if you report those findings. This is happening in America. Its happening right now.

anonymous at 9/10/2011 10:06:14 PM


27 percent of the new cases of Lyme in the country were reported in Pennsylvania in 2009. The CDC conservatively estimates the actual number of new cases to be 10 times those accurately diagnosed, which would be 80,000 new cases in 2009. Since at least 33% of cases go undiagnosed, the CDC agree's that the actual number maybe much higher. Insurance companies only authorize payment for treatment within the guidelines established by the IDSA, a medical board, in NEW HARTFORD, CONNETICUT, the insurance capital of the US. The members were accused of conflict of interest since they sit on the insurance boards as well. Also they cherry picked only research that agrees with their 30 years out of date research based opinions that leave at least 50 percent of sufferers still sick. If you get this disease, be proactive. Do not see a dr. who treats by the IDSA guidelines. Go with a DR. who knows what he is doing because he actually treats Lyme patients. That would be a dr. who treats using a higher standard that is supported by research. Lots of wonderful research, just not that conducted by the ivory tower demigods of the IDSA, who all profit greatly off of Lyme disease. This is a really serious illness, and there is so much misinformation out there. There is so much corruption in our government and nothing is working. Is it a surprise then that the IDSA and CDC are all messed up too? The NIH is a mixed bag of research supporting all kinds of opinions. The mdeical board here is making it sound like the national institute of health is totally against ILADS but it isn't true. Also the American Association of Physicians and surgeons is supporting this bill. Anyone who has known someone they respected who lost their ability to function and regained it through longer treatment with antibiotics than the 4 weeks regulated by the idsa will support this bill.

Jackie at 9/10/2011 9:58:54 PM


Lyme makes people really sick, mainly because the orginal treatmetn guidelines were insufficient and those same people that made those original guidelines are in power still today. In the mid 70's a federal law got passed saying that doctors could now own patents on organisms and on testing practices. This was put into law to increase research by adding incentives, but instead it caused researchers to become territorial and secretive, because whoever got their first would have a passive huge income for the rest of their lives. Money creates greed and dependency. For more info on how this affects anyone diagnosed with a new illness like Lyme watch the wonderful new award winning documentary under our skin. It is available on netflix and on comcast free. It is also being broadcast on PBS here in PA.

Jack at 9/10/2011 9:45:39 PM


5 other states have successfully passed similar legislation to protect their people from the IDSA/NIH/CDC brotherhood of Lyme gridlock. Lyme is big business and the brotherhood stands to loose big time if we change the way we understand Lyme. Maine New Hamphsire, Connecticutt, Massachussettes, Rhode Island, New York, and now Texas has passed the same bill. Lyme is coming south and we need this protection. The insurance companies are against it, so you can bet it helps people.

widget at 9/10/2011 9:40:08 PM


The board makes some misrepresentations of the facts. I am disappointed in the oversimplifi-cation of things. There is research that shows antibiotics work. It depends on whose research you read. The IDSA may have more research because that's what they do. So if the idsa does research and ILADS treats people which one do you want to fix your body. The theory guys who sit at a desk all day or the guys with their shirtsleeves rolled up who see people and get them back up and running? You stated that the CDC, NIH,and the IDSA are all excellent sources of info on Lyme. If that was true and they all have it under control would the number of Lyme cases be doubling in PA? Would sick people be asking the state government in every state in New England to step in and set their guidelines aside? Would the federal government in 2010 have hired the institute of Medicine to review their work? Would the state Connecticut's attorney general have filed letters of intent to sue the IDSA for antitrust violations. The truth of the violations is in the fact that the IDSA caved and agreed to all of the state attorney generals demands. They violated the agreement when it came time to vote and as a result thousands of people will continue to be misdiagnosed each year. I wish it was a simple life...one where all strains of Lyme are cured the same...one where people could put their trust in government agencies...one where the outcome of research wasn't easy to predict based on what outcome would earn the researchers the most money. These times are anything but simple. Most people going to the doctor today go away with unanswered questions. Most illnesses defy being easily treated. Lyme symptoms are comparable to MS and can cause you not to be able to work. It is uncurable. Parents keep tall grasses away from your home. Mice carry ticks close to the home. Prevent bites, cause politics cause 50% of people to never get better.

Donna at 9/10/2011 9:33:45 PM


More than 14000 studies have concluded that chronic Lyme exists. The IDSA prefer's to keep debating that while thousands more go undiagnosed. The IDSA earns $222 million in grants and additional income from Lyme related patents. If they change their guidelines then research $ would shift away. The IDSA has committed anti-trust violations and it is a corrupt organization. Those are facts. By supporting them you could become party to any future lawsuits filed. With so many new infections in PA, we need you to reconsider your position. Help make PA a safe place to raise families again. Children are getting infected on school playgrounds at alarming rates. Most people only understand when someone they love gets terribly sick and has to struggle to find a physician who can properly treat them. The odds are getting higher that you too will soon experience this shift. Some people get an easy to treat strain of the disease, others get a harder strain and require longer treatment. The IDSA are researchers none of whom actually treat Lyme. Infectious Disease specialists treat a lot of illnesses. ILADS treats only Lyme/related illnesses and they are all treating patients. More physicians are revolting against the IDSA guidelines. The AAPS also supports the bill. At the recent IOM hearing the attending physicians were shouting off the floor to include chronic lyme and its treatment in the hearings. All of New England has similar bills to bill 272 already in place. Get on board before your opinion becomes irrelevant and behind the times. We all need you to lead. Antibiotics are our only hope. If u believed everything I've written here would you still deny me affordable antibiotics even if it had a 50% chance of allowing me to work again? Why are u doing this? $? How can u be sure I am not right? What if it happened to u? All that is necessary for bad to triumph is that good men do nothing. This is precisely what u are doing. disappointed in u all.

grace at 9/10/2011 8:49:07 PM

Last Updated: 8/30/2011
From: 
Email:  
To: 
Email:  
Subject: 
Message: