CHAT TRANSCRIPT: Lyme Disease chat with Dr. Lawrence Zemel and Dr. Daniel Cameron

NOTE: Thanks to everyone who joined us for today's live chat about the dangers and effects of Lyme disease.

Chronic Lyme disease: Does it exist and should it be treated with long-term antibiotics? Morning Call health reporter Milton D. Carrero held an online chat Friday, July 1 with representatives from the two main organizations managing the treatment of Lyme disease in the United States. Dr. Lawrence Zemel of the Infectious Diseases Society of America and Dr. Daniel Cameron from the International Lyme and Associated Diseases Society. Dr. Zemel and Dr. Cameron took questions from readers about Lyme disease, including the controversial issue of whether patients should be treated with long-term antibiotics for chronic Lyme disease.

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Dr. Lawrence Zemel is Chief of the Division of Rheumatology at the CT Children's Medical Center and Professor of Pediatrics at the University of Connecticut. Dr. Zemel is a graduate of New York's Brooklyn College and SUNY Buffalo followed by residency at Buffalo's Children's Hospital and fellowships at Tufts-New England Medical Center and Boston Children's Hospital. Dr. Zemel, works in the field of Pediatric Rheumatology and Pediatrics, and has expertise in multiple areas, including Lyme Disease, Antiphospholipid Syndrome (APS) and Juvenile Rheumatoid Arthritis.

Dr. Daniel Cameron graduated from the University of Minnesota School of Medicine and Public Health followed by residencies at Beth Israel Medical Center and Mt. Sinai School of Medicine in New York. Dr. Cameron is widely recognized for conducting epidemiologic research while practicing medicine. He has been viewed as a pioneer in Lyme disease as an author of practice guidelines, analytic reviews, and clinical trials. He currently sees patients in his private practice in Mt. Kisco, New York while continuing his research and writing. He maintains the website LymeProject.com.

The chat's transcript is below:

11:46

The Morning Call:  Welcome to today's Live Health Chat on Lyme Disease! Today's chat is hosted by Morning Call Health Reporter Milton Carerro, who will be joined by Dr. Lawrence Zemel and Dr. Daniel Cameron. The chat will begin shortly, but please feel free to submit your questions now. Thanks for joining us today! Friday July 1, 2011 11:46 The Morning Call

11:50

Milton Carrero:  Welcome Dr. Zemel is good to see that you've joined us already. Friday July 1, 2011 11:50 Milton Carrero

11:50

The Morning Call:  Dr. Zemel, thanks for joining us. You should be able to post to the chat. Friday July 1, 2011 11:50 The Morning Call

11:53

The Morning Call:  Thanks to everyone who's joined us so far for today's chat on Lyme Disease! Just a reminder, you can submit your questions now in advance of the chat, which will get underway at noon. Friday July 1, 2011 11:53 The Morning Call

11:53

Dr. Lawrence Zemel:  all set to go; nice to join you Friday July 1, 2011 11:53 Dr. Lawrence Zemel

11:54

Milton Carrero:  Dr. Cameron, good to see that you are here also. Welcome. Friday July 1, 2011 11:54 Milton Carrero

11:55

The Morning Call:  Dr. Cameron, thanks for joining us. You should be able to post to the chat. Friday July 1, 2011 11:55 The Morning Call

11:55

[Comment From BrendaBrenda: ]  I am just very interested in what will be discussed today. Friday July 1, 2011 11:55 Brenda

11:56

Milton Carrero:  Good Morning. I want to thank everybody who has joined for this discussion today, particularly Dr. Cameron and Dr. Zemel. Friday July 1, 2011 11:56 Milton Carrero

11:56

Milton Carrero:  We have been overwhelmed with questions as the interest for this topic is certainly great. Friday July 1, 2011 11:56 Milton Carrero

11:57

Milton Carrero:  We will try to get to as many questions as possible. Friday July 1, 2011 11:57 Milton Carrero

11:58

Milton Carrero:  We will be starting in a couple of minutes. Friday July 1, 2011 11:58 Milton Carrero

12:00

The Morning Call:  Thanks again to everyone for joining us for today's Live Health Chat on Lyme Disease! Again, today's chat is hosted by Morning Call Health Reporter Milton Carerro, and we're here now with Dr. Lawrence Zemel and Dr. Daniel Cameron!Milton, Dr. Zemel and Dr. Cameron are ready for your questions! Friday July 1, 2011 12:00 The Morning Call

12:01

Milton Carrero:  Dr. Zemel and Dr. Cameron, for the benefit of our readers, some of whom might not be familiar with the two organizations that you represent. Could you each please offer an opening remark about your work and your organization's position about the treatmet of Lyme disease and its existence as a long-term or chronic condition? Friday July 1, 2011 12:01 Milton Carrero

12:04

Dr. Lawrence Zemel:  I am the chief of pediatric Rheumatology at University of Ct. And have dealt with Lyme Disease for 34 years. The position of the IDSA is to provide the best evidence-based care of patients with Lyme Disease, to educate the public about Lyme Disease, and to foster additional research on treatment and prevention of Lyme Disease. Friday July 1, 2011 12:04 Dr. Lawrence Zemel

12:04

[Comment From Daniel CameronDaniel Cameron: ]  I am a past president of the International Lyme and Associated Diseases Society (ILADS). I am in private practice in Mt. Kisco and publish as a physican and epidemiologist. Friday July 1, 2011 12:04 Daniel Cameron

12:06

Milton Carrero:  OK, could each of you tell us your position regarding the controversial topic of chronic Lyme disease? Friday July 1, 2011 12:06 Milton Carrero

12:06

Milton Carrero:  Then we will begin posting the more specific questions from readers Friday July 1, 2011 12:06 Milton Carrero

12:09

Dr. Lawrence Zemel:  Approximately 10 percent of people who have had Lyme Disease will develop persistant symptoms following appropriate treatment. Most of these patients are no longer considered infected. Previous research has shown that at least 50 percent of people with "chronic Lyme Disease" never had Lyme Disease in the first place. We as physicians are obligated to treat these patients in the most humane and safe way possible. Friday July 1, 2011 12:09 Dr. Lawrence Zemel

12:10

Milton Carrero:  Thank you Dr. Zemel, we'll wait for Dr. Cameron's answer to continue with the next question. Friday July 1, 2011 12:10 Milton Carrero

12:11

Milton Carrero:  We are working on the technical side to make sure Dr. Cameron is logged in as a panelist. Friday July 1, 2011 12:11 Milton Carrero

12:12

Dr. Lawrence Zemel:  I am happy to take questions in the meantime. Friday July 1, 2011 12:12 Dr. Lawrence Zemel

12:12

[Comment From BillBill: ]  Is there a definitive test for Lyme Disease? Friday July 1, 2011 12:12 Bill

12:13

Daniel Cameron:  Lyme disease was described initially as acute. Many chronic neurologic and rheumatologic issues have been described. Four NIH trial described patients ill for years with severe symptoms. Doctors are divided. ILADS feels antibiotic treatment can behelpful. Friday July 1, 2011 12:13 Daniel Cameron

12:13

Dr. Lawrence Zemel:  We combine the two tier antibody test with clinical findings. Friday July 1, 2011 12:13 Dr. Lawrence Zemel

12:14

Daniel Cameron:  There are sevealr tests that have helped in research settings and for surveillance. The two-tier test is not sensitive enough in actual practice. Physicians must use their clincial judgement. Friday July 1, 2011 12:14 Daniel Cameron

12:14

[Comment From CassieCassie: ]  I was just wondering if you could have negative test results and still have Lyme? Friday July 1, 2011 12:14 Cassie

12:16

Daniel Cameron:  Yes. Antibiotics or steroids may keep the body from developing an immune response. There are also many strains with differing proteins. Friday July 1, 2011 12:16 Daniel Cameron

12:16

Dr. Lawrence Zemel:  Lyme tests can be negative in very early Lyme Disease. If Lyme Disease is not treated, the vast majority of antibody tests will be positive. The myth of sero-negative Lyme Disease is just that- mostly a myth Friday July 1, 2011 12:16 Dr. Lawrence Zemel

12:17

Milton Carrero:  One of the most controversial elements of this discussion is the use of long-term antibiotics to combat Lyme-related symptoms. Are there other medical conditions for which the extended use of antibiotics is permissible? Friday July 1, 2011 12:17 Milton Carrero

12:17

Daniel Cameron:  There a numerous studies published since the two-tier was adopted showing patients do not develop the 5 out of 10 IgG Western blot bands. They develop an IgG response. Just not the CDC list. Friday July 1, 2011 12:17 Daniel Cameron

12:17

Dr. Lawrence Zemel:  Dr Cameron is correct: early treatment with antibiotics may blunt an antibody response, but at that point, no further treatment is needed. Friday July 1, 2011 12:17 Dr. Lawrence Zemel

12:18

Milton Carrero:  Why is it such a controversial item when it comes to Lyme disease? Friday July 1, 2011 12:18 Milton Carrero

12:19

Daniel Cameron:  Often the antibiotic treatments are for other conditions including sinus infections, acne, or a sore throat with antibitics at lower doses and shorter durations. Lyme disease was not considered. Friday July 1, 2011 12:19 Daniel Cameron

12:19

Dr. Lawrence Zemel:  TB is treated for 6- 12 months, and syphilis may require long term antibiotics. But there is scientific data to support those treatments. Friday July 1, 2011 12:19 Dr. Lawrence Zemel

12:20

Milton Carrero:  Are thre any reliable studies that can demonstrate the efficacy of long-term antibiotics for Lyme disease? Friday July 1, 2011 12:20 Milton Carrero

12:20

Dr. Lawrence Zemel:  The controversy and confusion has been generated in large part by inaccurate postings on the internet by so called Lyme advacacy groups. Friday July 1, 2011 12:20 Dr. Lawrence Zemel

12:20

Daniel Cameron:  Acne treatment are also prescribed long term. Lyme diseae is similar in some respects to Syphilus. Q fever is another example. Friday July 1, 2011 12:20 Daniel Cameron

12:21

Milton Carrero:  Because the questions are so many, and often similar I'm trying address the most prevalent topics associated with Lyme disease Friday July 1, 2011 12:21 Milton Carrero

12:21

Milton Carrero:  1. Hello I wanted to ask you a question I recently had oral surgery that removed a lipo granuloma that also seems to have ended a battle I’ve had for years with late stage Lyme disease I was still forced to use heavy iv antibiotics for a few days after the surgery but from what I feel and the rash that I have had for the past 13 yrs has ended so I guess what I¿m asking is what role did this syste play in keeping my Lyme disease active and could there be more large syste that I,m not aware of still to come? I'm surprised to hear any doctor aver with any certainty at all that Chronic Lyme Disease can't exist after treatment with oral antibiotics alone, when the NIH is currently conducting a large study specifically to determine if Chronic Lyme Disease exists despite treatment with those antibiotics. The NIH's study brief at http://www.clinicaltrials.gov/ct2/show/NCT01143558?recr=Open&cond;=lyme+disease&cntry1;=NA%3AUS&cntry2;=EU%3AIE&age;=1&rank;=1 actually says "It is currently unknown why some patients continue to have symptoms. One possibility is that the antibiotics have not successfully gotten rid of all of the bacteria. Current tests for Lyme disease cannot tell whether the bacteria have been successfully eliminated from the body." Care to comment on that government statement? In particular, how does the doctor expect an infection in the brain by the Lyme spirochete to be eradicated by oral antibiotics, when no appropriate oral antibiotic is capable of crossing the blood-brain barrier? I call the doctors' attention to the new paper (May, 2011) at http://www.canlyme.com/Sapi_et_al_2011.pdf which quantitatively discusses this limitation. Steve Hollingsworth Friday July 1, 2011 12:21 Milton Carrero

12:21

Dr. Lawrence Zemel:  There are at least 3 studies that demonstrated the lack of benefit from the use of long-term antibiotics, suggesting that persistent symptoms are no longer antibiotic sensitive. Friday July 1, 2011 12:21 Dr. Lawrence Zemel

12:22

Daniel Cameron:  Dattwyler published several papers on Late Lyme disease with success. Donta also described successes, The original Logigian papers on neurologic LD also described successes. The Krupp clincal trial supported treatment. Friday July 1, 2011 12:22 Daniel Cameron

12:23

Dr. Lawrence Zemel:  Steve, CNS infections are treated with intravenous antibiotics. Thank you for sharing the other information. Friday July 1, 2011 12:23 Dr. Lawrence Zemel

12:23

[Comment From GuestGuest: ]  My daughter was diagnosed with Lymes 3 years ago it went undetected for months. Her first sign that there was a problem was bells palsy. Now 3 years later she has been diagnosed with PPD and suffers from depression and anxiety. Are any of these related in any way? Friday July 1, 2011 12:23 Guest

12:23

Daniel Cameron:  The three trials -Klemner's and Fallon describe patients ill an average of 4.7 to 9 years after treatment failures. Patients this severe for this long need much more support and treatment than was offered in the trials. Friday July 1, 2011 12:23 Daniel Cameron

12:24

Dr. Lawrence Zemel:  Guest: suggest you discuss with your PCP and possibly Infectious Disease consultant. Friday July 1, 2011 12:24 Dr. Lawrence Zemel

12:24

The Morning Call:  A quick thank you again to everyone who has joined us so far. For those of you arriving late (or for those unavailable to join us), a full transcript of this discussion will be available online shortly following the conclusion of today's chat. Friday July 1, 2011 12:24 The Morning Call

12:24

[Comment From mikemike: ]  is lyme disease under reported? Friday July 1, 2011 12:24 mike

12:24

Daniel Cameron:  Fallon from Columbia described neuropsychiatric manifestations years after treatment. There have been treatment failures in most early presentations. It is worth being evaluated. Friday July 1, 2011 12:24 Daniel Cameron

12:25

Dr. Lawrence Zemel:  Most likely under reported. Estimates are that Lyme Disease may be two to three times more prevalent than the CDC data. Friday July 1, 2011 12:25 Dr. Lawrence Zemel

12:26

Milton Carrero:  How many species of lyme bacteria exist and how many of those species are covered by the lyme testing available through Quest and Labcorp? Friday July 1, 2011 12:26 Milton Carrero

12:26

Daniel Cameron:  There are at least 10 time more cases than the 30,000 cases reported to the CDC per epidemiologist projections. The chief epidemiologist in Connecticut estimate in testimony there are 24 times the numbers in their state. Friday July 1, 2011 12:26 Daniel Cameron

12:27

[Comment From ChrisChris: ]  Why would no further treatment be needed if the patient is suffering on going and escalating symptoms? Friday July 1, 2011 12:27 Chris

12:27

Daniel Cameron:  Ehrlichia, Anaplamosis, Babesia can be tested at the local lab. There are speciality labs that have emerged. Bartonella and other bacteria and virus are in the tick and are of concern. Friday July 1, 2011 12:27 Daniel Cameron

12:28

Dr. Lawrence Zemel:  Dr Cameron's data is pure speculation. Current testing for the Lyme bacteria picks up all spirochetes in North America, at all commercial labs. One lab in California has not been shown to produce reliable results. Friday July 1, 2011 12:28 Dr. Lawrence Zemel

12:28

Milton Carrero:  Co-infections is a big part of the discussion concerning Lyme, could they play a part in the difficulties diagnosing Lyme disease? Friday July 1, 2011 12:28 Milton Carrero

12:29

Dr. Lawrence Zemel:  Chris: Persistent symptoms may represent earlier tissue damage even though the bacteria is gone. Futher more, antibodies to the Lyme bacteria may be toxic. Persistent symptoms do not necessarily mean ongoing infection. Friday July 1, 2011 12:29 Dr. Lawrence Zemel

12:29

Daniel Cameron:  Many of these chronically ill patients remain sick. Symptomatic treatment with pain medication, Lyrica, Neurontic etc often fail. Antibiotics have helped many of these patients. Friday July 1, 2011 12:29 Daniel Cameron

12:30

Daniel Cameron:  Krause first introduced the concept that Babesia and Lyme together can lead to a severe presentation. Friday July 1, 2011 12:30 Daniel Cameron

12:30

Milton Carrero:  Can we talk about the guidelines that each of your organizations suggest for the treatment of Lyme? Friday July 1, 2011 12:30 Milton Carrero

12:30

Dr. Lawrence Zemel:  Coinfections do not interfere with diagnostic testing. If patients have high fever and other flu like symptoms, then tests for anaplasma and Babesia are indicated. Friday July 1, 2011 12:30 Dr. Lawrence Zemel

12:31

Daniel Cameron:  Ther are always risks with any intervention. Physician who treat with antibitoics are equally concerned with risks. Nevertheless, the benefits outweigh the risk for many patients. Physicians should have the rights to treat with antibiotics. Friday July 1, 2011 12:31 Daniel Cameron

12:31

Milton Carrero:  From a reader: If you had a patient who came to you that despite suffering from a number of lyme symptoms for years but since he or she did not test CDC positive and therefore never given antibiotics by his/her dr. until they now had lesions on brain, neurological problems, vision problems, joint problems, would you treat with long term antibiotics if symptoms did not clear up after a few months? ¿Jean Springsteen. Friday July 1, 2011 12:31 Milton Carrero

12:32

Dr. Lawrence Zemel:  IDSA recommends oral antibiotics for 10-21 days for early Lyme Disease, one month for Lyme arthritis, and intravenous antibiotics for CNS disease or persistent arthritis. Friday July 1, 2011 12:32 Dr. Lawrence Zemel

12:33

Dr. Lawrence Zemel:  Jean: Suggest that you be evaluated by a neurologist to be sure that another illness is not present, especially since your tests are negative. Friday July 1, 2011 12:33 Dr. Lawrence Zemel

12:33

Milton Carrero:  Here is a question that alludes to insurance coverage the economic burden of Lyme disease treatment: Why do doctors who treat patients with long-term antibiotics charge patients so much? Friday July 1, 2011 12:33 Milton Carrero

12:34

Daniel Cameron:  I need to thoroughly evaluate each patient. I typcially call in neurologist and rheumatologist to evaluate the patient. I may the assistence of a pain managment program. I always keep a broad differential diagnosis going. Friday July 1, 2011 12:34 Daniel Cameron

12:34

Dr. Lawrence Zemel:  Dr Cameron, while physicians have a right to treat with antibiotics, they have a responsibility to practice medicine in the safest way possible, following established scientific principles. Avoiding science is not in society's best interest. Friday July 1, 2011 12:34 Dr. Lawrence Zemel

12:35

Milton Carrero:  It is obvious that there are clear differences in the way both guidelines approach the treatment of Lyme, Is there room for more dialogue and cooperation between physicians on both sides? Friday July 1, 2011 12:35 Milton Carrero

12:35

Milton Carrero:  Are you concerned about the impact that politics and controversy have on patients lives? Friday July 1, 2011 12:35 Milton Carrero

12:36

Daniel Cameron:  Many of the physicians who have worked with chronic manifestions find a number of their patients have severe manifestations including pain, headaches, fatigue, and joint pain. They need an extensive evaluation that takes much more time than and EM rash. Friday July 1, 2011 12:36 Daniel Cameron

12:36

Dr. Lawrence Zemel:  You will have to ask those physicians directly about the cost of care. There is one physician in southern CT who asks for money up front. One wonders about his motives. Friday July 1, 2011 12:36 Dr. Lawrence Zemel

12:37

Milton Carrero:  From a reader: 13. I contracted LD 5 yrs ago in California and I was initially treated on a 10-day antibiotic protocol. It helped temporarily, but I soon got very sick again with severe Lyme symptoms. I have since been on several antibiotic protocols, some lasting up to 6 months. These protocols have helped my symptoms tremendously. Earlier this year, I suffered from severe neuropathy and was unable to walk with great difficulty speaking, and I was put on 2 types of antibiotics for 4 months. My Lyme symptoms resolved, but I developed a severe intestinal infection that required 8 days of hospitalization on IV drip to resolve. I am currently symptom free and while I hope that I am 'cured', I know that I can remiss anytime. Friday July 1, 2011 12:37 Milton Carrero

12:37

Daniel Cameron:  There is an extensive published literature supporting ILADS. Friday July 1, 2011 12:37 Daniel Cameron

12:37

Dr. Lawrence Zemel:  Medicine should be practiced by physicians and not by politicians. Physicians should engage in a dialogue with their patients. Friday July 1, 2011 12:37 Dr. Lawrence Zemel

12:38

[Comment From SueSue: ]  Why do insurance companies dictate what type of antibiotic you can use? Friday July 1, 2011 12:38 Sue

12:38

Dr. Lawrence Zemel:  Dear 13 year old reader: I'm sorry that you have been ill. It's very difficult to respond to you through the internet. Work with your peditrician. Friday July 1, 2011 12:38 Dr. Lawrence Zemel

12:38

Daniel Cameron:  We need many more physicians to diagnosed and treat chronic Lyme disease. We will have less chronic LD if they are recognized early. Finally, more physcians will offer more options for patient within HMO's Friday July 1, 2011 12:38 Daniel Cameron

12:39

Daniel Cameron:  Elected officials are merely speaking up for their consitituents. Friday July 1, 2011 12:39 Daniel Cameron

12:39

Dr. Lawrence Zemel:  Insurance companies respond to evidence based medicine. Since there is no evidence, that IV therapy beyond 4-6 weeks is effective, they should rightfully deny coverage. Friday July 1, 2011 12:39 Dr. Lawrence Zemel

12:40

Milton Carrero:  Reader: Why are doctor¿s okay treating diseases like Fibromyalgia and chronic fatigue syndrome which get more attention, respect and treatment with really very little historical data or any available testing? Isn¿t it possible many of those people have Lyme Disease based on similar symptoms? And lifelong treatment for them is practically a requirement and endorsed by doctors. Friday July 1, 2011 12:40 Milton Carrero

12:40

Daniel Cameron:  Chronic manifestations can be tough. I am happy you are currently well. It gives my patients hope. Friday July 1, 2011 12:40 Daniel Cameron

12:40

Dr. Lawrence Zemel:  A small vocal group of constituents should not be dictating medical care. Friday July 1, 2011 12:40 Dr. Lawrence Zemel

12:41

[Comment From LoisLois: ]  The question remains, why is Lyme disease so underdiagnosed? Friday July 1, 2011 12:41 Lois

12:41

Daniel Cameron:  We need more dialogue among physicians to come to common ground for the increasing number of patient who fail treatment. Friday July 1, 2011 12:41 Daniel Cameron

12:42

Dr. Lawrence Zemel:  Any patient with Fibromyalgia or chronic fatigue syndrome who lives in a lYme endemic area should be tested for Lyme Disease. If tests are negative, then appropriate treatment is warranted for those disorders. Friday July 1, 2011 12:42 Dr. Lawrence Zemel

12:42

[Comment From HaroldHarold: ]  My daughter's doctor in southeastern PA pushed psychiatric care and behavior meds and refused to treat her without them. Why the emphasis on behavior and not treating the cause? Friday July 1, 2011 12:42 Harold

12:42

Daniel Cameron:  The criteria for diseases like fibromyalgia are not clear cut. Many patients with chronic manifestations are successfully treated and do not need lifelong antibiotic treatment. Friday July 1, 2011 12:42 Daniel Cameron

12:43

Daniel Cameron:  The test are not sensitive enough to rule out Lyme disease. Friday July 1, 2011 12:43 Daniel Cameron

12:43

Dr. Lawrence Zemel:  Lois: Most physicians are now testing for Lyme Disease if there is a reasonable likelihood that Lyme disease is present. It is probably not accurate to say that Lyme Disease is still underdiagnosed in most Lyme areas. Friday July 1, 2011 12:43 Dr. Lawrence Zemel

12:44

Daniel Cameron:  I often incorporate psychiatric and behavior approaches with antibiotics with success. Friday July 1, 2011 12:44 Daniel Cameron

12:44

Milton Carrero:  Can we talk more about the variety of symptoms, many of the patients says they are offended when they are prescribed antidepressants when they insist they have symptoms of Lyme? Could you tell us more about the neurological symptoms of this disease? Friday July 1, 2011 12:44 Milton Carrero

12:45

Daniel Cameron:  Fallon reported an average of two year delays in diagnosis in patients enrolling in their NIH trial. Friday July 1, 2011 12:45 Daniel Cameron

12:45

Dr. Lawrence Zemel:  Harold: If your daughter tests positive for Lyme disease then she should be treated with antibiotics. If she tests negative, then she requires other treatments. Friday July 1, 2011 12:45 Dr. Lawrence Zemel

12:46

[Comment From DedeeDedee: ]  Is it common for scientific principles to not be challenged? New discoveries cannot be made without challenging science. Friday July 1, 2011 12:46 Dedee

12:46

Dr. Lawrence Zemel:  Neuro symptoms of Lyme disease include 7th nerve palsy, meningitis, encephalitis, and peripheral neuropathy. There is controversy about the connection between behavioral symptoms and Lyme disease. Friday July 1, 2011 12:46 Dr. Lawrence Zemel

12:47

[Comment From TracyTracy: ]  Isn't medicine more of an "art" than science? Every person is different, why the need for a cookie cutter treatment in Lyme? Friday July 1, 2011 12:47 Tracy

12:47

[Comment From KariKari: ]  There are 5 in my family sick from the impact of politcs and controversy over Lyme. When will it end? What needs to be done? Friday July 1, 2011 12:47 Kari

12:47

Daniel Cameron:  Several of the key symptoms mimic LD including irritability, sadness, anxiety and depression. Psychiatric medications or counseling may help. Often these same patients have fatigue, headaches, lightheadedness, poor concentration, chest pain, sleep disturbances, numbness, and joint pain that the psych drug will not take care of. Friday July 1, 2011 12:47 Daniel Cameron

12:47

Dr. Lawrence Zemel:  Dedee: I entirely agree with you. This is why scientific guidelines are continually updated. The problem occurs when the public and wayward physicians ignore the science. Friday July 1, 2011 12:47 Dr. Lawrence Zemel

12:48

Daniel Cameron:  Early LD had been accepted. Chronic LD has encountered resistence by several clinicians in the community. The NIH trial confirmed the problem. We need a dialogue between the different views. Friday July 1, 2011 12:48 Daniel Cameron

12:48

Dr. Lawrence Zemel:  Tracy: There still is art in medicine. The quality and safety movement in medicine in this country requires some level of standardization in diagnosis and treatment. Friday July 1, 2011 12:48 Dr. Lawrence Zemel

12:49

Daniel Cameron:  Medicine is still an art at ILADS. Fortuneately, the evidence is growing to support ILADS concusions. Friday July 1, 2011 12:49 Daniel Cameron

12:49

[Comment From LoriLori: ]  I had a Lyme's disease bull's eye and have been on Doxycyline for a week now... I was told that the Lyme's disease may show up later down the line- while others told me that the antibiotic will take care of it. Which is it? Friday July 1, 2011 12:49 Lori

12:49

Dr. Lawrence Zemel:  Kari: With 5 in your family affected, I would seek care from a university based specialist. Friday July 1, 2011 12:49 Dr. Lawrence Zemel

12:50

Daniel Cameron:  Lyme disease is common enough to affect entire families. Some doctors treat the symptoms. ILADS advocates offering an antibitoic option. Friday July 1, 2011 12:50 Daniel Cameron

12:50

Dr. Lawrence Zemel:  Lori: early treatment is almost universally effective. Friday July 1, 2011 12:50 Dr. Lawrence Zemel

12:51

[Comment From EllenEllen: ]  My insurance will not cover the antibiotics my doctor prescribes and I can not afford them out of pocket. What are your thoughts on homeopathic and herbal treatments? Friday July 1, 2011 12:51 Ellen

12:51

Dr. Lawrence Zemel:  Ellen: I'm not aware of evidence to support alternative treatments in place of antibiotics. Can you please educate me? Friday July 1, 2011 12:51 Dr. Lawrence Zemel

12:52

Daniel Cameron:  Many of my patients with chronic issued try many different alternative medications. We need more research on new strategies. Friday July 1, 2011 12:52 Daniel Cameron

12:53

Milton Carrero:  Dr. Zemel, the IDSA was once accused by the attorney general of Conn. of having a conflict of interest among the panelists responsible for creating the official guidelines of treatment. Could you please comment about this? Friday July 1, 2011 12:53 Milton Carrero

12:54

Milton Carrero:  What measures did your organization take to avoid any appearance of a conflict of interest? Friday July 1, 2011 12:54 Milton Carrero

12:54

Daniel Cameron:  Lori At least 10 - 15% of patients treated in trials by leading institutions remain ill at 9 to 12 month followup. The numbers are much highe in cohort trials. Friday July 1, 2011 12:54 Daniel Cameron

12:55

Dr. Lawrence Zemel:  that was a pure political move with no basis or legality to investigate. If the authors truly had a conflict, they would have recommended long term antibiotics. This was a very unfortunate event, when politics was interfering with the scientific process. Friday July 1, 2011 12:55 Dr. Lawrence Zemel

12:55

Daniel Cameron:  ILADS published an evidence based guideline in 2004 reviewing the evidence. See our website at ILADS .org. We expect a new guideline soon. Many of our members are now publishing. The publication should help the dialogue. Friday July 1, 2011 12:55 Daniel Cameron

12:56

Milton Carrero:  Will the guidelines be reviewed again? Friday July 1, 2011 12:56 Milton Carrero

12:57

Dr. Lawrence Zemel:  The ILADS guidelines were reviewed by the British Health Agency and found to lack scientific credibility. Most major specialty organizations in North America and Europe have endorsed the IDSA guidelines. Friday July 1, 2011 12:57 Dr. Lawrence Zemel

12:58

Daniel Cameron:  ILADS continues to request active participation in all hearings or conferences to bring our experience and expertise into the discusssion. The Attorney General was concerned that physicians who treat chronic LD were not included in discussion or in guideline d iscussions. Friday July 1, 2011 12:58 Daniel Cameron

12:59

[Comment From Julia WagnerJulia Wagner: ]  Actually - while a dialogue will help, it is not uncommon in medicine to have multiple schools of thought that inform a physician, who can make the call that is best for that patient - the same approach should be used with Lyme - and physcians need to be educated that 2 schools of thought. Any scientist who vociferously opposes other thinking, is limited the potential for progress in medicine - we need to follow the science as it emerges, and not ignore or disparage this. The science just evolving last year was significant in explaining "chronic lyme" from the 13 subtrains genotyped by Dr. Luft with some having serious neuro sx and others a more limited easy to cure disease, to lymphadenopathy study finding spirochetes hiding in the lymphs as another means to evade the immune system. I so no reason why the IDSA should fight other points of view - physicians should be informed about emerging science period, and treat their patients to get them well. Chalking up all remaining symptons to "aches and pains of daily living" is not acceptable when other viable options have not been explored. Friday July 1, 2011 12:59 Julia Wagner

12:59

Dr. Lawrence Zemel:  The IDSA guidelines were published in 2006. As a result of the unfortunate attorney general investigation, a separate panel agreed with the original findings without change. New guidelines will probably be published in several years as new information becomes available. Friday July 1, 2011 12:59 Dr. Lawrence Zemel

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Daniel Cameron:  The British Health Agency is an example of another paper that did not include clinicians experienced in treating chroncic LD or concerns of patients who remain ill. Friday July 1, 2011 12:59 Daniel Cameron

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The Morning Call:  Thanks again so far to everyone who joined us today and sent in their questions! We've gotten an unbelievably overwhelming response from everyone. Friday July 1, 2011 12:59 The Morning Call

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The Morning Call:  Dr. Zemel and Dr. Cameron, we'd love to get more input from both of you this afternoon. Would you be available to continue today's chat? We can continue until 1:15 if you both have a little more time. Friday July 1, 2011 12:59 The Morning Call

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Daniel Cameron:  I have more time. Friday July 1, 2011 12:59 Daniel Cameron

1:00	Dr. Lawrence Zemel:  Unfortunately I have a commitment at this time. Thank you for allowing me to participate. Friday July 1, 2011 1:00 Dr. Lawrence Zemel

1:00	Milton Carrero:  Is there a possibility of cooperation between both organizations in the creations on new guidelines? Friday July 1, 2011 1:00 Milton Carrero

1:00	Daniel Cameron:  It was a pleasure to hold this dialogue. Friday July 1, 2011 1:00 Daniel Cameron

1:01	The Morning Call:  Not a problem! Folks, we're going to take one more question before we wrap things up. Friday July 1, 2011 1:01 The Morning Call

1:01	Milton Carrero:  Tell us more about the vaccine that was previously available for Lyme. Why wasn't it effective? Is there hope of new vaccine in the future? Friday July 1, 2011 1:01 Milton Carrero

1:02	Milton Carrero:  Thank you again for everyone who participated in this chat? Thanks to everyone for your interest. Be sure to join us again next month for another health webchat. Friday July 1, 2011 1:02 Milton Carrero

1:02	Daniel Cameron:  I remain hopeful. Friday July 1, 2011 1:02 Daniel Cameron

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The Morning Call:  Thanks again to Morning Call Health Reporter Milton Carerro for hosting today's Health Chat, and a big thank you to Dr. Zemel and Dr. Cameron for a great discussion! And of course, thank you to everyone for participating in today's online chat! Check back shortly at mcall.com/healthchat for a full transcript from this afternoon's chat. Have a great day and wonderful Fourth of July weekend! Friday July 1, 2011 1:03 The Morning Call

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