Bill Calls for Lyme Disease Treatment Protocol, More Education

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Pennsylvania Medical Society- Watch and listen intently to this video! Why has Frank Pallone continued to prevent Lyme bills from ever making it to the House Floor? Go to www.opensecrets.org-Frank Pallone. You will see where he gets ALL of his re-election campaign money- THE HEALTH INDUSTRY! There is something VERY fishy here!http://www.lymerights.org/html/house_debate_on_lyme_bill.html



Pennsylvania Medical Society- Time to take the ear plugs out of your ears and the blinders off your eyes! Watch and Listen! The IDSA's Guidelines DON'T WORK! WOW 14-16 American doctor's have determined our fate! http://www.vancouversun.com/videos/index.html?v=1567765416



Mass. Governor signed Lyme disease legislation- effective July 1,2010. The intent of the law is to protect and allow freedom of Mass. doctors to treat Lyme disease according to their best professional judgment, citing specifically the option for treatment beyond 30 days. The legislation allows the "clinical diagnosis" of Lyme disease based on medical history and physical exam as determined by the treating physician. Mass. became the fourth state in the country joining Conn. R.I. and Ca. to sign legislation that protects physicians who treat Lyme disease long-term. There is a reason why 4 states now have Lyme legislation in place- PEOPLE ARE SUFFERING! With PA being one of the most affected states by Lyme disease, it's time to step up to the plate and be #5!



why do doctors give a year of doxy for acne patients and not for lyme patients? doxy is the choice medicine for lyme! does this make sense?



BOTTOM LINE: doctors do not treat beyond the 4 week on antibdotic because they don't want to be disciplined for this. now if you were a doctor what would you do? STAY AWAY FROM LYME DIAGNOSES, LYME TEST and call it something else! that should be the reason for disciplary action.



Long term antibiotics is the only thing we have at this point for hope in recovering especially if not diagnosed early on. Also if the spirochete cycles every 3-4weeks our window of opportunity may be missed if the antibiotics are discontinued too soon. Doctors need to be educated on the co-infections. After 3 years I feel like I have finally beaten Lyme, Babesia and Bartonella but have visual & memory deficits, balance problems,& dizzy spells,for life. It would be cheaper to treat long term and beat the bug than end up on disablility with poor quality of life.



A comment from "D. F. In NEPA" was deleted because it personally attacked another person who had made comments. Please remember to refrain from insulting or demeaning remarks. Thank you.



Joined a business partnership with a retired military man. I've been battling Lyme for 12 years (the past 2.5 with a positive diagnosis and treatment plan). He shared with me that when he was out clearing brush during his Army years, (this goes back 15 years), all of the men were immediately treated with antibiotics from the tick bites they incurred. It was policy against Lyme. Of course that's not for us PA citizens. We must be the Lab Rats for this hideous disease.



As a chronic lyme patient with co-infections, I want to say I feel sorry for those who cannot understand what we are going through. My doctor removed the tick from my leg and didn't treat me. He then went on to refuse to believe I was sick for almost a year. I became bedridden, had seizures, and told I had a brain tumor. If my doctor had prescribed a low cost course of antibiotics immediately, it would have saved my insurance company thousands of dollars paying for tests, ER visits, many specialists visits, unnecesary tests and years of misery for me. I finally found a doctor who found my illness and treated me affectively. Why wait? There is no good reason for not treating. The proof is out there, long term treatments work. Look at ALL THE DATA, not just part of it. I spent many thousands of dollars out of pocket for hyperbaric oxygen treatments, co-pays and supplements that the insurance company refused to pay. They worked! My husband also suffers from lyme with neurological symptoms. It is a shame that the only doctors that understand this are directly affected by lyme themselves, or a family member. I hope those who don't understand have their eyes opened before it hits home directly! It's getting worse.. it will happen. What is the problem? Let doctors do their jobs and quit interfering with doctor patient relationships. Isn't that what this bill is to do? What is everyone afraid of? Insurance companies will spend less treating lyme than treating all the symptoms and damage this disease causes when it is not treated. I can't believe the government would not rather have people healthy and working than sick and on disability.



I think the best response to the issues raised below is summarized by Feder et al. in their excellent review "A critical appraisal of 'chronic Lyme disease'" N Engl J Med. 2007 Oct 4;357(14):1422-30: "How should clinicians handle the referral of symptomatic patients who are purported to have chronic Lyme disease? The scientific evidence against the concept of chronic Lyme disease should be discussed and the patient should be advised about the risks of unnecessary antibiotic therapy. The patient should be thoroughly evaluated for medical conditions that could explain the symptoms. If a diagnosis for which there is a specific treatment cannot be made, the goal should be to provide emotional support and management of pain, fatigue, or other symptoms as required. Explaining that there is no medication, such as an antibiotic, to cure the condition is one of the most difficult aspects of caring for such patients. Nevertheless, failure to do so in clear and empathetic language leaves the patient susceptible to those who would offer unproven and potentially dangerous therapies. Physicians and laypeople who believe in the existence of chronic Lyme disease have formed societies, created charitable foundations, started numerous support groups (even in locations in which B. burgdorferi infection is not endemic), and developed their own management guidelines. Scientists who challenge the notion of chronic Lyme disease have been criticized severely." My email inbox is a testimonial to that last point. I highly commend this well-referenced review article to all commenters below over opinion pieces like the biased review by Cameron (who has no published original research) in a journal I've never heard of.



As a patient with chronic Lyme disease, what choice do patients have other than to hope our government would take steps to ensure physicians treat Lyme patients? Not all physicians will even treat those of us who have been bitten by a tick. I was fortunate enough to have a "bulls eye" and a positive Western Blot, however my internist told me I was crazy and would not treat me. When she finally did, she didn't have me on the correct dose of antibiotic. Thankfully I found a Lyme literate doc who treated me. As a medical professional, I find it totally unacceptable that physicians will not treat those of us with Lyme. Thanks to not getting proper initial treatment, I now have numerous chronic problems from the Lyme disease. I urge physicians to learn more about how to treat Lyme disease. As for long term antibiotics, patients are on long term Doxycyclin for years and no one is arguing over that point. I haven't been able to work for over 8 yrs as a nurse thanks to the effects from Lyme. This is totally unacceptable in this day and age for physicians not to know how to properly treat Lyme disease and the co-infections that are associated with it. I'd have better luck being a dog and being treated by a veterinarian for Lyme disease. Even the vets put the canines on antibiotics spaced out over the year to treat the dogs who have Lyme disease. Seems like the vets are better trained on this disease than other physicians. I learned more about Lyme from my vet than I found out from my internist who didn't even realize it was a reportable disease to the state of PA. I hope the PA Medical Society will take the initiative and educate their physicians to this devastating disease. This isn't rocket science..it's a disease caused by a spirochete. I'm old enough to see the similarities between this disease and patients who had syphillis years ago when I was in nursing school in PA. It's time to treat these Lyme patients with the medications needed to eradicate this disease.



I wonder what would happen if a doctor who diagnosed a patient with cancer did not share information about a treatment options, such as chemo, surgery, and other medications, just because he or she didn't feel it was "good" for the patient...or that the AMA had no right to require him/her to do so? Would that be tolerated by society at large? Would that be tolerated by PA MED Society? I wonder why doctors don't complain about being required to inform patients of the options for OTHER devastating illnesses but feel put out and insulted when they consider the potential that they will have to TELL patients the truth about lyme treatment... that some times 28 days of doxy isn't enough? That sometimes an infection lingers and requires long term treatment? That often times there is more than one infection and the tests aren't good enough to identify them yet? Even that he/she doesn't know how to do it, but will send the patient to someone who does? But, I'm sure there are many doctors out there offended and insulted because they are being asked to share this information, such as Dr Curry. Why is that? How can doctors have the audacity to argue a treatment doesn't work when they see a patient recover from what they had told them was incurable after using the treatment poo pooed by the IDSA? Why on God's green earth do they still listen to the IDSA? How is that even possible? This is like a nightmare, only it's really happening. Most doctors who change their minds toward acceptance don't do so until they are deeply touched by lyme. Why does it have to come to that? The evidence is there.... Chronic Lyme DOES exist. Why won't you help us? I sure can't wait to leave this state some day. The sooner the better.



At what point do we allow DR's to treat patients without being avalanched by CDC requirements to document a multi faceted bacterial infection?? There is no use giving antibiotics without a guaranteed follow up visit before the treatment has ended and 6 wks after for a follow up antigen diagnosis if Lyme is suspected. These are the very minimal steps for the effective start to Lyme treatment. Most PA Dr's will deny you this information and treatment. Most do not offer the tests as a way of denial of treatment! The PA Medical Society has drug their feet in favor of Babiosis. The people of PA for many years have been patient while becoming patients. Strong legislation is overdue and badly needed in PA!!!



LymeActionPA would welcome the opportunity to meet with the PA Medical Society. Patients need options and support; clearly this bill does not legislate any specific treatments. However, you are right to be concerned of such instances - it is our concern as well. Today's environment does just that - one course of 2-4 weeks of one antibiotic only; that is seriously constraining your physicians. The medical community does "not have the option to prescribe new medicines and treatments as they emerge" at all. Options are instead limited; patients need solutions now with what is known today - you cannot withhold treatments that offer relief waiting for double-blind studies - we don't do that in other diesease, and shouldn't for diseases as debilitating and serious as these. This bill is designed to help physicians keep up to date on what is being learned, and to provide better options as they evolve, to provide new solutions to patients as they emerge, exactly what you say you want. We agree - that is what Medical Societies should do for physicians in the face of emerging science. LymeActionPA would like to further understand your objections and work with you to find approaches that achieve our shared objectives. A really good starting point would be for you to survey your membership and find the degree of confidence they have in the current treatment protocols used for Lyme disease from those on the front lines. Better yet, invite in Dr. Brian Fallon, Director of the Columbia University Lyme Disease Research Center, or Dr. Stephen Barthold, or Dr. Benjamin Luft, all at the edge of the best research going on in this area. Please note: the IDSA panel itself was split - 4:4 - on keeping their current approach to diagnosing Lyme. They did not at all agree on how Lyme should be diagnosed. This is the root cause of this whole situation - without this clarity, you cannot ethically constrain options for patients. We look forward to a response, LymeActionPA



I concur with the comment made below by Donna Falcone. I do, however, agree with Dr. Curry on one point, that being, "But to compel me to allow anything other than objective evidence to shape my discussion with patients referred to me for a positive Lyme serology or an ECM rash is to practice the very shoddiest form of medicine." That being said, perhaps you should heed your own advise doctor: do the research, both sides, and after you do have the courage to admit to your patients that you have failed them because you failed to do the right thing in the first place; You doctor have failed to be objective.



With all due respect Dr. Curry, you are mistaken in your facts. Chronic Lyme indeed does exist. "The evidence continues to mount that Chronic Lyme Disease (CLD) exists and must be addressed by the medical community if solutions are to be found. Four National Institutes of Health (NIH) trials validated the existence and severity of CLD. Despite the evidence, there are physicians who continue to deny the existence and severity of CLD, which can hinder efforts to find a solution. Recognizing CLD could facilitate efforts to avoid diagnostic delays of two years and durations of illness of 4.7 to 9 years described in the NIH trials." For full text of this article visit copy and paste http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2876246/?tool=pubmed or view the documents submitted by Dr Daniel Cameron to PA Public Hearing on June 22 found here: http://www.senatordonwhite.com/banking/2010/062210/agenda.htm



Re: Comments of S. Curry, MD I myself encountered one of the doctors in PA who encourages lifelong antibiotics and walked away angry at his scare tactics. However, I also encountered doctors in the UPMC system who treated me for more than the recommended IDSA treatment (I was given 6 weeks of IV antibiotics) and ended my treatment while I was still symptomatic. What happened next is that I got more and more sick over the course of the next year until I was part time at CMU and considering getting a wheelchair. At the same time, I spent hours researching the journal articles that have been published (including those you quote below and many others) and discovered that there is more ambiguity than you suggest below in our understanding of Bb. All sorts of other testing by top UPMC docs for what could be wrong with me came up negative (rheumatoid, lupus, etc). In the end, I found a *reputable* doctor who was willing to re-treat me, and in coordination with a UPMC doc started antibiotics again. After 18 months of oral antibiotics, I am now in remission, off medication, and full time again at CMU, a remarkable turn around from where I was when treatment was ended. Along the way I carefully gathered daily data about my symptoms in the most objective way possible (counting number of symptoms rather than severity, gathering it at the same time each day, etc) and was able to show with statistical significance that the changes I felt were being reflected on a regression curve. While my experience is 1 data point only, my reading on this matter in academic papers suggests that not every case is as straightforward as your post below implies. I would have liked to have been given the choice to continue my initial treatment until I was asymptomatic (or at least better than when it was asymptomatic (or at least better than when it was cut off) and I personally believe that it would have saved me a lot of heartache and headache.



Are you saying that if the language requiring Drs inform patients of all treatment options was removed that you would then agree with and support the bill? Most people I know with Lyme object to the insurance companies interfering w their licensed doctor's judgement ny denying what the medical doctor judges to be necessary... And indeed in many cases DOES restore health or at least, in my case for example, greatly improve quality of life with notable pain reduction, restoring cognitive functioning, and improved sleep patterns to name a few improvements out of many.



The idea that chronic Lyme disease exists at all has not been supported by any reputable research. Assuming that such a thing could exist, however, very well-designed blinded, randomized trials comparing how people do on long term IV antibiotics vs. placebo infusions have failed to see any difference. The repeated failure to generate any EVIDENCE that antibiotics beyond 28 days are necessary for the treatment of Lyme disease at any stage is the underpinning of the CDC, IDSA, and European guidelines for the treatment of Lyme disease. What this bill's sponsors wish to do is to carve out a special exception for those physicians--almost invariably those without board certification in infectious diseases--who wish to receive payment for therapies with no proved value and much potential harm for a disease entity that cannot be proved to exist. I have seen such practitioners ruin people's lives as they were given months of IV drugs while serious conditions like rheumatoid arthritis and other autoimmune diseases were overlooked. Worse, I have seen patients with serious infections (line-associated sepsis, C. difficile colitis) resulting from antibiotics they did not need. The proposed legislation would enshrine quackery into the laws of this Commonwealth. It's a free country, and if you want to ruin your health by allowing self-serving "Lyme specialists" and the patient advocacy groups who fail to speak for the thousands of patients who have been harmed by them to present their laughable theories about Borrelia, go for it. But to compel me to allow anything other than objective evidence to shape my discussion with patients referred to me for a positive Lyme serology or an ECM rash is to practice the very shoddiest form of medicine.



The AMA has already mandated that physicians share available treatment options with patients...but obviously that is not happening. Obviously most doctors adhere strictly to the grossly ineffective recommendations that suggest 28 days of antibiotics is enough for everyone... and that there is no such thing as Chronic Lyme Disease... so what you are saying in your first sentence above ("because it would legislate what physicians must say to patients in the privacy of an exam room about treatment of a particular disease") is that by not supporting the bill you are supporting a doctor who is willfully withholding information from patients in the exam room, regardless of the AMAs policy? You are saying "well, Dr., it's quite okay if you don't choose to MENTION that there are treatment options out there that have been shown to be successful with Chronic Lyme" even if that treatment could save their life/quality of life. Hmmm. That doesn't sound right. Are you SURE you meant to say that?



I sincerely encourage you to hold a Lyme Symposium for PA Physicians that would bring the scientists studying these diseases together to share what is known -- most physicians lack a basic understanding of these organisms -- share both sides from the clinical practice, and let your doctors decide. Your doctors deserve to get a good grounding in the science and research, and not just these continually referenced 4 studies that have many weaknesses, that don't allow for generalizations to patient populations. This is what a medical society should do with emerging diseases, not stick your head in the sand. I continue to hope that our family will see the Pa Medical Society stand up for patients and physicians. Here's hoping, suburban family of 5 with Lyme



I went for blood work today, in a local lab in YOUR STATE of PA, the MOST lyme endemic state in the USA. The woman at the lab was confused and flustered... she had no idea how to run these tests and had to "look them up". I have to go back tomorrow. What were the tests? ELISA, Western Blot, IgG and IgM tests, Erlichia, Bartonella, Babesiosis. Are you KIDDING ME???? I was stunned. I said to her "Wow... that really concerns me that you are not having orders for this test considering PA is the most lyme endemic state in the country." What could she say? It's not HER doing! She looked a little surprised herself. The doctors aren't ordering the TESTS????? Hmm.... gosh.... imagine that. And now ask yourself "Why do so many people have Chronic Lyme Disease"? I ask again, are you KIDDING me Pa Med. Do you not see a need for HONESTLY educating doctors on preventing and treating Lyme Disease? One way to PREVENT it is to test for it and treat it (hopefully) in the early stages. And then what? Your doctors are obviously not identifying the disease, and then when people have "chronic lyme" you say it doesn't exist. Heck yeah it exists. It exists and it is treatable, and PA SB1199 offers EDUCATION, PREVENTION, and TREATMENT options that are comprehensive. The proof is in the pudding, as they say... and this pudding is not up to snuff. I am just beside myself with disbelief.



So Pennsylvania would rather have me on Social Security Disability rather than give me antibiotics that could make me a functioning member of society again, right? That is what you are telling me. Do you enjoy watching us suffer? I was misdiagnosed for 21 years! Under-educated family physicians, cardiologists, psychiatrists, and psychologists all missed what was right in front of them! So for the past 8 years, YOU the taxpayers have been paying for me to sit here in silence searching for answers. Now whose money is that saving? It certainly isn't yours. You keep on with your politics and ignorance. I will fight this fight with my last breath.



PAMED needs to wake up. If your family members or yourself was suffereing w/ chronic Lyme you would be all for long term antibotics. I was diagnosed with Lyme in 2009, after many years of not knowing what was wrong with me. I was treated with 10 month of IV treatment. It did a world of good. After it was scaled back I slipped back, but for the most part I am doing ok. I also am on oral antibotics. This disease doesn't go away on its own or we all would be cured. Let us get treated how our doctors and we feel we need to be treated. If I had cancer i would get top of the line treatment, which I am glad i don't, Lyme is bad enough. With out this bill being passed we will suffer in silence and have to worry if the insurance is going to pay for the next dr visit or prescription.



I find your comments as to why you cannot support the long term antibiotic treatment for Lyme to be very inconsistent. Why is it appropriate for a highly biased group of doctors from the IDSA to dictate standards of care for the rest of the medical community? There is no standard of care that is scientifically proven and as far as I know the CDC and NIH agree with the existence of chronic Lyme. Many scientific studies have proven that the Sprirochete lives on in the body long after three weeks of abx therapy. Given the preponderance of evidence of chronic lyme, the fact that co-infections are common, and that the human body can be infected many times without creating an immunity to it, how can you or anyone set a standard of treatment at three weeks or less. It is inconsistent and by my estimation either lazy or conspiratorialon your part. The IDSA clearly has many conflicts of interest when it comes to setting standards of care for Lyme. They have not done anything since the hearings to change that fact. Why is the IDSA a more credible organization than ILADS?



I am confused about the obvious misinterpretation of this bill by the PA Medical Society as reflected in the statment, "The Pennsylvania Medical Society (PAMED) does not support Senate Bill 1199 because it would legislate what physicians must say to patients in the privacy of an exam room about treatment of a particular disease, interrupting the physician-patient relationship." The only thing the bill calls upon doctors to do is to be objective with their patients, including making their patients aware of their options in being treated for the disease. This is what is meant by informed consent. Any medical society grounded in science, knowledge, and objectivity would be encouraging its members to practice ethically, not the opposite. This is quite disheartening to me as a clinician and frightening to me as a patient.



I thought doctors were supposed to help people. I no longer have any confidence in the medical community.



The issue may have been debated by you and YOUR people, but you have not honestly related the contents of the bill. Show us, then, where in the bill it says what you have indicated. Please do that. Please show us what the bill SAYS and not what the inferred meaning is behind your policy. That's not a lot to ask for. Why is it so hard for you to provide?



We appreciate everyone’s comments. It’s important to hear patients’ points of view. This issue and our policy stance have been thoroughly debated among our physician leadership and at our annual meeting. Ask your physicians if they’re members of the Pennsylvania Medical Society and encourage them to join us in the debate of this and other important health care issues.



So far this isn't a debate. Please respond PAMed so that we can have a dialogue.



The AMA's Code of Medical Efforts clearly require: - The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives -The right to make decisions regarding the health care that is recommended by the physician -



I'd have to agree with the post by Aliza.........Your updated post continues to be misleading the public and the physicians on purpose. This actually is very good for your doctors.......and helps them treat patients. READ IT, it does not legislate ANY type of treatment. You either have not taken the time to read the bill, or watch the testimony and continue to post this nonsense out of pure ignorance or blind allegiance. Shame on you this is no way to run a society for Pa doctors!!!



I'm very confused by this. To the PA Medical Society, will you please clarify what you mean by showing me where in the bill there is a specific treatment endorsed? No one wants to see you violate your own policy, but it's just very confusing to read what you say when I can't find it in the bill.



Watch the video of the public hearing: http://nova.pasenategop.com/hearings/2010/bankinginsurance/062210.wmv



In your comments on this legislation you state the following: “The medical community must have the flexibility to prescribe treatments as new medications and procedures are discovered and then proven,” And yet the reality is that the ability of physicians to do that very thing when treating patients with Lyme disease is being hampered. This legislation is seeking to guarantee the ability of doctors to practice medicine as new treatments are being explored and proven. You cite the fact that an "independent" panel has confirmed the IDSA's stance on long-term antibiotic treatment. However, Ct Atty General Blumenthal found many conflicts of interest in the original panel necessitating a review panel which agreed to certain basic guidelines in their review procedures. The Review panel findings were made without following these procedures...many members on the Review panel disagreed with the IDSA recommendations. I encourage you to read all the testimony presented to the review panel as well as information regarding the Review Panel procedures. People affected by Lyme disease...especially when it goes undetected for many years...only want to be able to choose the treatment most effective for them. The concern over long term antibiotic use seems absurd when we hear often of adolescents being prescribed long-term antibiotics for acne (hardly a life altering condition). There are many respected physicians and researchers who have found benefit of long-term antibiotics in treating patients affected by tick-borne infections. We only want legislation that keeps these physicians from being censured and which prevents insurance companies from denying coverage for treatment based on one standard of care when there is a viable alternative standard.



Continued.... Bill 1199 is not going to interrupt the physician patient relationship; that credit goes to the CDC & the IDSA. SHAME on them!!!



I want to give you personal experience with Docs who have treated my Daughters Lyme Disease. She has had CLD since she was 11. She is now 33. We have seen three separate doctors during this time. NOT ONCE, did any of these docs advocate antibiotics at the beginning of the course of their treatment. The first, treated with diet, rest, acupuncture etc. After he retired, we moved onto a doc in NJ because we couldn't get help in our own State. For five full years, she treated w/o the use of antibiotics until my daughter became confined to a wheelchair. Then, and only then did she resort to IV. It worked in record time and she had a long remission. We believe she may have been bitten again and by that time we were able to find a doc in PA. She treated with vitamins, supplements, acupuncture, exercise and I could go on and on. Yes, we had to resort back to IV after the second bite, but again she went from bed, wheelchair, cane and then to walking again. DON'T ever let it be said that antibiotics don't work! My last comment would be this. My Father had terminal brain cancer, yet the docs wanted to do surgery, radiation and rehab and insurance was more than willing to pay. What was the point? I refused to put him through this. In others words, we are capable of making our own decisions to our medical care despite what the doctors suggest. He was a top doc in from the University of Penn and I feel acted irresponsibly. He took it as an insult that I would not follow his protocol. It is always about the money. My Father died peaceable without heroics. Also, persons with Aids are treated all the time knowing there is no cure. Why is Lyme not treated with the same respect? Side effects of antibiotics will occur, I am not stupid and neither is my daughter; however, doesn't quality of life rather than duration stand for something? If our doctors have been trained properly and we are given some credit in making our own choices, then it is time to TRUST. Bill 1199



The AMA's Code of Medical Efforts clearly require: - The right to receive information from physicians and to discuss the benefits, risks, and costs of appropriate treatment alternatives -The right to make decisions regarding the health care that is recommended by the physician -The right to courtesy, respect, dignity, responsiveness, and timely attention to health needs -The basic right to have adequate health care These rights are being violated; and this legislation is intervening when the "system" is not working as it should. This is when legislation is most called for. The right to be informed of all viable treatment options - there is no clearcut answer for Lyme yet - everyone agrees. Some improve on longer-term antibiotics, and when a rigorous diagnosis deals with all involved health issues. Turning away is not ethical, and certainly not generating the right health outcomes. Live up to our professions standards please.



My insurance company had a nurse call me and asked me questions about my care (I submitted claims for out of network internist bills, so they know) on lyme. I shared information on the 20 suppliments I was taking, my antibiotic regiment (all out of pocket, they're not paying that), my exercise regiment, my attempts to teach myself a spanish word or two for my brain, she was very encouraging until I STARTED ASKING QUESTIONS: Is there an IN-NETWORK PROVIDER FOR THIS???!!! Well, if you're a Lyme sufferer, you'll be chuckling and KNOWING that yes, put on hold until I got tired of holding for information. IF you're a PA DOCTOR, most likely you're going to tell me I need anti-depressants, because all the MRI's and CAT scans and Blood work didn't tell them anything they KNOW about. (YES MY INSURANCE COMPANY PAID FOR THE POSITIVE IGENEX TEST) If the protocol had been to be conservative and treat me for LYME back when I had 102 degree fevers, pain and blood test flags I wouldn't be in the horrible mess 12 years later. I'm not bitter, doctors make mistakes, but to read a book about this, to listen to this debate when the FUTURE OF OUR CHILDREN, the ones out there playing soccer or baseball AND NOT VIDEO GAMES (they're the safe ones that will be leading our country while the rest of us are sick) are at risk over the egos of the people we trust to care for us with science. LYME is painful. IF the medical community doesn't find answers for us, and you look very poised to hold hands with the pharmaceutical companies and insurance companies, we will find our own underground answers. This is happening as I type this, herbal remedies being recommended, RIFE machines being built. YOU ARE DAMAGING THE TRUST you think you hold dear to PATIENTS. A college friend of mind went to her doctor for a swollen insect bite that had a clear ring around it. She was TOLD she doesn't have Lyme. She went back two days later and INSISTED to be tested. She was positive. WAKE up PA.



I find it incredibly sad when our PA Medical Society is looking to a society-IDSA, that knowingly mis-represented it's legally mandated review process. This organization claims it was an "independent" process, and yet they handselected the members, who are all IDSA members, and exclude those with divergent views, again. They did NOT vote unanimously - just reading the report makes that clear. This stacked panel voted 4-4 regarding the most important recommendation - whether to require a CDC positive test or not - 4-4 - with a stacked panel. And, if you read the rest of the report, most of the recommendations have some significant change that needs to be made "in the next revision". I would say characterizing this as "unanimous" and "no changes required" is entirely misrepresentation and manipulation. My child couldn't walk, my child lost all her language capabilites, she couldn't remember words she'd known for years, she lost her balance, she had extreme pain - at 7 years old. Only due to her courageous physician who found the various tick-borne infections has she recovered. We need your help, not this continued arrogance and fear of responsibility for the disability of so many. The scientific evidence is arriving at the point, that malpractice will go through the roof, but you have within your hands the ability to help patients, and not let them go longer without treatments that attack these illnesses with the best we have available today. Advocating for patients -- we need better treatments, we need dedicated research, and commitment to heal. Please show us we can respect our PA Medical Society in Pennsylvania. Coming from a medical family myself, I have never been so disgusted with the lack of humanity, integrity and healing being evidenced by this organization.



Well. The IDSA is wrong. Now what?



Well, I don't find the revision any better than it was. I'll keep it really simple. This is what "I" believe in my heart,and from my experience. I think people get Lyme. I think doctors treat Lyme with 30 days antibiotics. I think that far too many people don't get better with short term treatment because they have co-infections Like Babesia, Bartonella, etc. This equals CHRONIC LYME. But there is no CHRONIC LYME...ok, well it appears that All of these buggers came from that initial tick bite. The quick treatment leaves people still very ill with other parasite infections. Antibiotics alone do not kill these other nasty things. Just saying NO to long term antibiotics wouldn't cut the mustard anymore. People are too sick for far too long, and this needs to be changed so doctors can try every approach. If it takes round 2 of antibiotics after treating the co-infections then they should be able to do it without all this nonsense. Change the testing to include all co-infections. Western Blot with co infection testing should be standard-loose the Elisa completely. If negative, and symptoms persist, try testing again on a different day of the month cycle. Treat the co-infections first, then use the antibiotics on the Lyme BB. Bet ya can get away with your 30 days antibiotics in most cases if you treat the other buggers first. JMHO just my humble opinion after over 30 years of suffering through the politics and the pain. All this-"long term antibiotics don't work"...well that might be true if you're not treating the other neat things that the tick carries. It will never work...Treat the co infections, let the doctors test for them, treat them and help us get well.



No disrespect intended, the opening statement is STILL not true. The bill does NOT endorse any treatment at all, one over the other. The bill merely allows a safety net in which more than one standard of care can be offered to patients, protects doctors who treat based on clinical judgement and not the narrowly defined "recommendations" of the IDSA and the CDC, and prohibits insurance companies from denying treatment using ONE standard of care after ANOTHER. Lest anyone get bogged down in the rhetoric again, please read the provisions of the bill, quoted here: To ensure that: (i) Physicians, insurers, patients and governmental agencies are educated that multiple standards of care exist. (ii) Physicians and other medical professionals provide patients with sufficient information about all standards of care to enable patients to make an informed choice as part of informed consent and respect the autonomy of that choice. (iii) Insurance reimbursement be provided for treatment rendered in accordance with the standard of care chosen. (iv) Pennsylvania government agencies provide unbiased information regarding multiple standards of care. No one is asking PA Med to support a treatment option. It is very confusing, however, that PA Med will not support legislation that protects patients and doctors who utilize one method of treatment over the other, especially if the "other" isn't successful. In failing to support this legislation PA Med is confusing a lot of constituents. Why would you not support a bill that provide patients with an opportunity to have their health restored. I'm sure you watched the hearing. If you didn't please visit Senator Don White's webpage: http://www.senatordonwhite.com/banking/2010/062210/agenda.htm There you will hear ample testimony, formal and informal, that demonstrates quite clearly that this is a serious problem and that we need to remain open to ideas that HELP people to recover. What ever happened to "first do no harm?"



Thank you to all those participating in the discussion on this very important topic. After reviewing your comments, we have made some clarifications on our position regarding Lyme disease treatment.



You might want to read what Quackwatch says about the use of antibiotics over time. Quackwatch seems to support the PAMED position. http://www.quackwatch.org/01QuackeryRelatedTopics/lyme.html



I am a local business man who has been fighting Chronic Lyme Disease for almost 5 years now. I have tried every short term method available, including a 30 day IV treatment, all without success. I started a lomg term anitbiotic regimen over 4 months age which seems to be holding out some hope. Please do not legislate out any ideas as no one including the PMS can difintely say that they know or have a proven cure for this horrible disease. Thank you.



I am a Cronic Lyme Disease patient! I have suffered with this disease since 2004 when no one around here understood what Lyme could do to someone let alone even that ticks around here carried it. I have been on meds since April 2009. I went out on DB in July 2009 for neurlogical Lyme. I was also on Iv antibotics for 9 months and which my insurance company dropped me after only 28days. Now they don't even want to pay the 28dys of meds. I have seen amazing improvements after the 4th month of the IV meds. I am now back to work but on partial DB and should be back full time in August. If it wasn't for the long term meds who knows where I would be today. I wasn't able to remember, hardly move from severe muscle pain, fatigued and sleeping 20hrs a day, numbness and hardly no use of my left arm, speech slurred, blurry vision, and the list could go on and on. I am still on some antibotics and will be for another year before this is all said and done. Hopefully at that time I will be in remission and it doesn't come back. I am all for the Senatte Bill 1199 becuase I do not want to see more people end up in my situation.



Yesterday I saw an old friend with a diagnosis of lyme's lesions on her brain. I had not seen her in 3 years. She can barely talk or walk. I could not believe my eyes. I learned that the only treatment for her is narcotics for pain relief. I am a retired nurse. We must do better.



Here's what PAMED Does and stands for: •Represent physicians in public venues including the government, insurance companies, and the media •Provide members with timely information, expert services, and professional support on medical practice issues •Advance public health, public policy, medical science, education, and ethics •Advocate for patients Where is your information for treatment of chronic Lyme? How are you helping the patients? What Lyme literate doctors do you represent? What is PAMED's suggestion for treating Lyme patients? I'm sorry but if you don't support this bill I think you've forgotten your mission?



I'm sorry but I can't find where the bill suggests any treatment. It simply lets our doctors and the patient procede without interference. If you need more information about the debate of treatment and persecution of doctors who are trying to heal patients read "Cure Unknown, inside the Lyme epidemic" by Pamela Weintraub. It is always about money. I have a nice place to walk with lots of deer ticks for anyone who doesn't believe in chronic Lyme! I thank God that my doctor is Lyme literate as I feel better than I have in 2 years.



Just to simplify, and this is directly copied and pasted FROM the SB1199 describing the provisions: To ensure that: (i) Physicians, insurers, patients and governmental agencies are educated that multiple standards of care exist. (ii) Physicians and other medical professionals provide patients with sufficient information about all standards of care to enable patients to make an informed choice as part of informed consent and respect the autonomy of that choice. (iii) Insurance reimbursement be provided for treatment rendered in accordance with the standard of care chosen. (iv) Pennsylvania government agencies provide unbiased information regarding multiple standards of care. I don't see anything there that supports the claim PMED says above: "PAMED does not support Senate Bill 1199 because it endorses a specific course of treatment." Please. If anyone can find where the bill endorses a specific course of treatment cut and paste it here. Try to find it. You won't because it's not there. This has been misconstrued, plain and simple. This bill has been grossly misrepresented by PAMED.



I think that's a great question. Do you mind if I ask to whom you are directing your question (a poster or the PA Medical Society)? It would help with follow up.



I think that's a great question. Do you mind if I ask to whom you are directing your question (a poster or the PA Medical Society)? It would help with follow up.



Either your explanation is misleading, or I am misreading the Bill. Can someone clarify this explanation for me?



Wayne County NE PA. It would save a lot of people a lot of money if doctors could just treat with longer courses of antibiotics, and be able to try to narrow in on the co-infections that cause long term chronic lyme. It would save a lot of money if they would test for co-infections of Lyme asap. I've been to 23 different doctors, dozens of MRI's, Xrays, Medication...all paid by insurance. I was treated for Lyme in 1995. Today I am so sick I am losing my home and my business. I tested POSITIVE last month for BABESIA, and 2 bands short of being retreated for LYME on my western blot. I'm trying to get the BABESIA treated in PA. But I can't be retreated for the Lyme in PA. WHY? I have a total of 7 positive bands on western Blot test. JUST NOT THE RIGHT ONES for the IDSA guidelines. Umm folks, you can't get BABESIA without having LYME. Please let us be treated so we can get our lives back. The antibiotics might be expensive, but DISABILITY, MRI's, XRAYS, Wrong diagnosis and expensive non-working meds will cost a whole lot more! Don't block us, help us PA Med Society.



I would like to invite all interested parties to visit www.lymeactionpa.com to stay up to date on advocacy efforts in the state, updates, and general information.



This bill does not endorse a specific course of treatment. PAMED, what you stated above is false, I'd like to ask you to remove it from above as it is misleading. "Physicians, insurers, patients and governmental agencies are educated that multiple standards of care exist. Physicians and other medical professionals provide patients with sufficient information about all standards of care to enable patients to make an informed choice as part of informed consent and respect the autonomy of that choice." PAMED, again, there is no where in the bill specifically endorsing any course of treatment. This bill will only allow consumers of healthcare to be aware of all of their choices which they are currently not being informed of which goes against a number of laws.



Calling all doctors! Do you want the freedom to treat your patients who have lyme disease, or to at least counsel them truthfully regarding this disease? My own family practice doctor has lamented that he has too many patients that he gives the standard treatment to, and then they come back, he knows it doesn't cure it, and yet feels his hands are tied. If doctors do their homework, and look at the basic biology of this organism- they will understand how misinformed the current treatment strategy is for early lyme, and why the "myth" that there is no chronic lyme is just that - a myth. The PA Medical Society should be standing up for it's physicians not forcing them into a restrictive box that does NOT heal patients. Shame on you - the science is there, and continues to evolve. Look at the work of Stephen Barthold, Benjamin Luft, Brian Fallon at Columbia University. It is time to stand up to this enormous arrogance, and do what is right for patients. I encourage all doctors to go out and do the research for yourself - look at the BASIC science that the manipulated interpretations that our out there. Thank you.



A public hearing took place yesterday which presented excellent information on the need for PA SB 1199. To view the entire hearing: http://nova.pasenategop.com/hearings/2010/bankinginsurance/062210.wmv The point was made over and over again that this legislation does NOT mandate a treatment plan, nor does it endorse one over the other. The bill (please READ IT) provides provisions that will allow doctors to inform patients of TWO standards of care available, and to treat based on their professional, clinical judgment.



First off SB 346 is dead, and is replaced by a SB 1199, which mirrrors HB 894. You folks are not keeping up on Pa legislation. Neithr bill endorses a specific course of treatment for Lyme disease. Please re-read both bills. The Medical Society should be behind any bill that allows or affords their physicians to make treatment choices as appropriate in consideration with their patients. No insurance company or guideline should be able to be legally dictate or deny treatment when more than one treatment option exists. Please educate your physicians and get onboard with better quality of care for Pa residents.



I have Lyme disease and I am in full support of HB 894. The IDSA's guidelines are CRIMINAL and NOTHING less than a HOLOCAUST on those suffering with this devastating disease. If you had this disease you too would be in support of HB 894. You wouldn't be following the IDSA's CORRUPT guidelines. www.underourskin.com!!!



Doctors in PA need to be educated to recognize, dx and treat Lyme appropriately. I have heard of doctors that don't even know what the rash looks like and send their patients home with a lotion instead of an abx. The sooner the treatment the better especially if an OVAL or bulls eye rash is present.