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| ZEMEL VS. CAMERON |
I'm going to be posting comments here during the course of the chat, then offer additional feedback here afterwards.
So far, this is off to a slow start. I don't know if it's the live chat software or if the servers are flooded with Lyme disease patients, but it's 10 minutes in and we barely have introductions. Dr. Cameron apparently wasn't logged in or having trouble logging in.
Okay, now things are moving along, and questions about testing are being posted by the audience. Questions on how to test for Lyme disease and on seronegative Lyme disease.
(I think that the servers are really busy - huge lag time on my end. I emailed my questions in advance, and I don't know if they are taking a combination of emailed questions or live - what is the deal here?)
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Not that Milton! We said
Milton Carrero! |
Milton Carrero, live chat moderator just wrote, "Because the questions are so many, and often similar I'm trying address the most prevalent topics associated with Lyme disease" - I suspect only a small fraction of questions and comments that got emailed or posted are showing up here and they may not ever pick mine. Or yours.
Okay, now we're getting a mix of questions and answers on different topics, some personal and some general. One man asks about the relationship between lipogranuloma cysts and late stage Lyme disease, a good question about the existence of chronic Lyme disease being investigated by an NIH study, the ineffectiveness of oral antibiotics for neurological Lyme disease, one mother's question about the relationship between her daughter's symptoms of anxiety and depression after Lyme disease...
Is Lyme disease underreported, why not continue to treat the patient if he is suffering, what is the role of coinfections, treatment approach by each organization, question about neurological testing... It's hard to keep up now, and the questions and answers are a jumble.
Okay, it looks like it's wrapping up now... Dr. Zemel has to leave even though Milton said an extra 15 minutes could be extended for the live chat.
My questions never made it into the chat - did any of yours?
In case you're wondering, here is a copy of what I sent out:
Mr. Carrero, I'd like to ask the following questions of Dr. Zemel and Dr. Cameron for Friday, July 1, chat on Lyme disease:
For Dr. Zemel, I have the following questions:
1) Since there is evidence that Borrelia burgdorferi can be intracellular and studies indicate a small number of spirochetes can survive antibiotic treatment, what further studies can be conducted to provide evidence of persistent post-antibiotic infection in human hosts? Are there any currently being done which address these issues?
2) What mechanisms does Borrelia burgdorferi use which lead to immune dysregulation in the human host, and what research do you know of being conducted now that could determine how to prevent immune dysregulation in the infected human host?
For Dr. Cameron, I have the following questions:
1) Do you and other members of ILADS compare case studies and have you been working on conducting your own clinical trials based on those case studies? Lyme patients are sorely in need of more research for effective treatment and hopefully shorter term treatment.
2) Have you and other members of ILADS considered writing a detailed, scientific book with citations that explains for both public and medical professionals why your treatment guidelines are more in line with the state of the science on Lyme disease? If not, would you? It would be great to have a better understanding why long-term treatment is an effective approach for a number of patients beyond their own success stories.
Thank you,
Camp Other
My general thoughts about the chat:
I think that a live, in-person presentation of the material would be more effective than the live chat presentation. One thing which kept happening is that even with leaving audience participation limited, questions and answers to those questions were being posted out of sync and hard to follow.
The answer to a previous question asked minutes ago would show up directly after a question which was just posted, making it difficult for the audience to line up questions and answers.
In a real time, in-person presentation, an answer would immediately follow a question. I would have preferred something along the lines of streaming video with a split screen that looked like a Presidential debate if I have to watch something like this again.
It's not clear to me from where Milton was drawing his questions at all times. Sometimes they seemed to be taken from email, and at other times from the live chat box. I wish that the Morning Call could put together a page showing all of the questions they'd been asked because I (and I'm sure others) are curious about what they are - and perhaps leave it up to Dr. Zemel and Dr. Cameron to address them in writing at a later time either for the Morning Call or elsewhere.
At any rate, my questions did not get asked. I'm wondering how much success I would have if I wrote the doctors directly.
Okay, comments on what was said:
"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."
Dr. Zemel, please provide references and citations for your statements. Up to 10 percent of early cases of infection have resulted in treatment failure and by extension, persisting symptoms. In a number of studies, the authors retreated individual patients - in some cases, with IV antibiotics when the study was based on oral antibiotics. They went on to improve, when they hadn't improved earlier. Do you call this a discrepancy, or is this a case where a garden variety Lyme disease infection became neuroborreliosis and researchers decided to give the patient additional treatment? Consider the real life scenario of a patient who fails early oral antibiotic treatment and does not go on to receive additional treatment when symptomatic. How do you differentiate between an individual case which requires more treatment versus one which has immediately become an autoimmune case?
Can you please cite evidence and research on how many patients with Chronic Lyme disease never had Lyme disease to begin with? I'd like to know more about that research.
It seems to me that between the IDSA Lyme disease guidelines panel's article in the NEJM and your comments that you tend to focus on this group of patients who never had Lyme disease in the first place. I know nothing about this group. Please focus on those of us who
have had it and conduct more research for effective treatment for us. We deserve humane, safe, and effective treatment.
"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."
But what about early treatment which is inadequate? Dr. Zemel, you're making an assumption that everyone who gets treated early has had enough antibiotics for a long enough duration of time. If a patient only receives 10 days of doxycycline - which is what some patients receive from their doctors (and not 21-28 days of oral antibiotics) is that enough? What if the patient has neuroborreliosis and they only receive a short course of doxycycline? What if they are allergic to doxycycline - could they have treatment failure from having had a shorter course of a third line choice which was not the most effective antibiotic to use for Borrelia burgdorferi?
A patient, Steve Hollingworth, had this to say:
"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?"
and
"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?"
Go Steve! Please keep asking these kinds of questions! This is the line of questioning which is sorely needed in these discussions.
Sadly, they never did answer your question about the NIH, did they? But you got this response from Dr. Zemel on your second one:
"Dr. Lawrence Zemel: Steve, CNS infections are treated with intravenous antibiotics. Thank you for sharing the other information."
Steve, I take it that this answer was inadequate for you? It was for me. While Dr. Zemel is technically correct, he is answering the letter of the question and not the spirit of it. His response didn't address my concern that a number of cases of neuroborreliosis are missed in diagnosis and not treated adequately. Dr. Brian Fallon has cited research which shows a relationship between neuroborreliosis and the development of chronic, persisting symptoms. Diagnosing and treating neuroborreliosis early on seems key to me in preventing persisting symptoms.
Backtracking a bit, I'd like to make a comparison here on the responses both doctors gave:
"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.
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."
Dr. Cameron, you get points for citing names for research. Dr. Zemel, given my knowledge and experience in the Lyme world, I know which studies you are likely to be referring to - but for the sake of the audience, please give names and citations for your studies.
I often wonder why in mentioning any studies on long-term antibiotic use, most of the media does not mention Dattwyler's research - given he is a member of the IDSA and has done a lot of Lyme research. Same goes for Logigian, who has cowritten work with Dr. Steere.
Biostatisticians such as Alison Delong have analyzed the raw data and data reporting on the clinical trials and studies related to the 2006 Lyme disease guidelines and came to the conclusion that while the studies were well designed, the data could be finessed in different ways and extended antibiotic treatment did, in fact, help a sub-population of the groups studied.Her team concluded that more research is necessary - something I've been saying all along.
Further discussion by both of you about the data on this sub-population would be very insightful for us all.
"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."
Dr. Cameron, where are these patients now? How are they doing? Were they on any treatment after the trials? Has anyone followed up on them?
Time for another comparison, this time on the issue of if Lyme disease is underreported:
"Dr. Lawrence Zemel: Most likely under reported. Estimates are that Lyme Disease may be two to three times more prevalent than the CDC data
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."
So, guys,
you both agree on something: Lyme disease IS underreported, anywhere from 2 times the reported number of cases are out there on upwards of 10 times. What about the citation by the CDC of there being 6-12 times the number of reported cases in highly endemic areas?
Could we please hire more epidemiologists and expand surveillance? I noticed it's getting the lowest amount of funding from the NIH. Can you shift funding from another area even if funding isn't increased for 2012? I'd like to aim for a more accurate estimate here if nothing else.
"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."
Dr. Zemel, please provide citations and research to support your claims. Last I checked, research indicated that Borrelia lonestari is not picked up by standardized lab tests for Lyme disease, and according to Durland Fish, neither is Borrelia miyamotoi. There may be other strains which have yet to be discovered which are not picked up.
I'm hoping that Dr. Ben Luft's research will lead to better testing in the future.
"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."
Dr. Zemel, can you explain how to detect evidence a patient has tissue damage, persistent infection, or a combination of both?
In stating that "antibodies to the Lyme bacteria may be toxic", could you explain more to me and everyone else reading along? This sort of statement requires clarification and sounds off a cause for concern in everyone not knowing what you mean.
"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."
Dr. Cameron, do you have a record of case studies on these patients? Have you conducted any larger scale studies on the treatment of post-treatment Lyme disease patients (to use Dr. Maloney's term, which is growing on me) which show which patients receive benefit from pain medication and which fail?
I'd be curious to know, because some subset of patients I know of have received some relief from pain medication while others have not. Do they have different conditions? I have also found some people have had abdominal pain and other pain is relieved by use of small doses of specific antidepressants and tranquilizing medications such as Ativan. Any comments on this?
"Daniel Cameron:
Krause first introduced the concept that Babesia and Lyme together can lead to a severe presentation."
True. Krause also wrote the Babesiosis treatment guidelines for 2006, if I recall correctly, and acknowledges that Babesia can relapse and may need additional treatment - especially in immunocompromised patients.
"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."
You know what?
This is a good response. But time and again, what I have noticed is that the reasonable response the ID doctor gives is not what is happening with people who are showing up to their primary care physician or urgent care clinic. Based on patients' own self reporting, what I hear about are people who were not accurately diagnosed early on by their family doctor and went on to develop more severe symptoms
If the agreed upon mantra between ILADS and IDSA doctors is "early treatment usually leads to success", Dr. Zemel, what is your organization doing to ensure patients get diagnosed and treated early on for both coinfections and Lyme disease, since coinfections can increase the severity and duration of symptoms?
"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."
Dr. Zemel, why is the treatment range such a wide number of days? How does a clinician make the decision to use 10 days versus 21 days? What if 10 days doesn't work - is retreatment advisable then?
If someone takes the recommended 2 tabs of doxycycline after a tick bite as prophylaxis, does that prevent a seropositive test from developing later if the prophylactic treatment fails and the patient goes on to develop Lyme disease later? This is important to know, and to let doctors know not to rely to heavily on tests and look at the clinical picture.
"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."
I agree with this statement on face value. But I don't always agree with the implied statement behind it, which is, "long-term antibiotic treatment is not safe and is not scientifically supported".
I think that more research is required on this issue, in terms of efficacy, and I think that long-term antibiotic use confers the same kinds of risks for many different kinds of infections. One has to weigh the risks and benefits in any medical treatment, and recognize there will always be risks. For example, I had to get a colonoscopy and sign a paper before the exam, a paper telling me there was a small chance I could die from the procedure - miniscule - but the benefits outweigh the risk. Do you make sure you don't have colon cancer or do you avoid the small chance of death? Most people would go for the colonoscopy. (No cancer was found, thankfully!)
"Dr. Lawrence Zemel: Medicine should be practiced by physicians and not by politicians. Physicians should engage in a dialogue with their patients."
Microbiologists and molecular biologists will hopefully split the difference for you all.
I'm really tired of your infighting.
Jane! Stop this crazy thing! I want to get off!
"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"
Dr. Cameron, I'm going to emphasize this bit: We need many more physicians to diagnose and treat Lyme disease, period. Early on, along with coinfections, so that people can avoid persistent symptoms.
Saying that more physicians and HMOs should be participating in increased early diagnosis and treatment is a positive statement on your end for both patients and for how it reflects on ILADS, because critics have stated that as long as ILADS stands to profit from their position there is no reason for the current situation to change.
"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."
Dr. Zemel, what do you do about insurance companies denying patients access to
any IV therapy to begin with? Let alone beyond 6 weeks?
"Dr. Lawrence Zemel: A small vocal group of constituents should not be dictating medical care."
Oh, I agree. But what does science have to say about this? If all we have is a hypothesis and not a proven and accepted theory, is it ethical to base treatment guidelines on a hypothesis or is more research required?
"Daniel Cameron: We need more dialogue among physicians to come to common ground for the increasing number of patient who fail treatment."
Yes, I agree here, too. But first and foremost, we need more research, more meticulously reported case studies, and clinical trials using antibiotic and non-antibiotic treatments. If you've got a hypothesis you want to provide evidence for, I'd like to see both sides actually do something about it to help patients.
More treatment studies, please? And more scientific research on Bb pathogenesis, please?
Are you familiar with William Burgdorfer's "thirty years quote"? I want to hear Dr. Zemel's response to it.
"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."
Do you have references and evidence to support your statements? What about patients in the southeast US? The midwest? The west coast? Canada? There are many reports patients have given of being told by doctors that Lyme disease is rare and not in their area when according to what limited epidemiological data is on record and their state health departments, Lyme disease is not rare. How do you recommend closing this gap between doctors' knowledge and knowledge of other institutions?
More Q & A:
"[Comment From Dedee]
Is it common for scientific principles to not be challenged? New discoveries cannot be made without challenging science."
"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."
It's a good question, Dedee. And Dr. Zemel, it's a good answer.
The problem is, I think treatment and diagnosis is lagging behind the science at the moment, and that right now, not enough is understood about chronic Lyme disease and Lyme disease's pathogenesis to effectively treat everyone in a timely fashion.
When one makes the statement, "We don't know what causes persisting symptoms", what that should mean is "We don't know what causes persisting symptoms". Period. The rest is speculation, and what the cause is may not be a uniform, one-size-fits-all answer. This is why I ask for more research, and I want to see more independent research from parties not invested in either "side", if there have to be sides at all.
Ah, look! This sounds like consensus. Sorta...
"[Comment From Ellen] 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?"
"Dr. Lawrence Zemel: Ellen: I'm not aware of evidence to support alternative treatments in place of antibiotics. Can you please educate me?"
"Daniel Cameron:
Many of my patients with chronic issued try many different alternative medications. We need more research on new strategies."
I initially found it amusing that Dr. Zemel is asking for a patient to educate him on the use of alternative treatment. But then I got pissed off. As someone who is supposed to be upholding his own guidelines, if that patient needs antibiotics, he could be providing advice as to how to get authorization for antibiotics if they are medically necessary and/or advise further testing to substantiate her diagnosis for treatment. Instead, he is humoring her.
But in the end, the message I'm getting out of this: Alternative treatments are currently not evidence-based treatments for Lyme disease. Sure, people try them, and some may help with some symptoms - but we need more research on them.
"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."
I hope that you are providing more peer-reviewed-from-established-journal citations and references to support your guideline, and that we get to see it soon. I eagerly await the outcome of all this work you've been doing.
"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."
Dr. Cameron, there's a reason why I said what I did above.
Interesting, Dr. Zemel. Could you please explain why each of these countries overseas have adopted IDSA's guidelines and not written their own, given that they have historically had somewhat different diseases and disease presentations? (This is becoming less the case with bird migration affecting infection distribution and rate.)
And then there are these differences in approach. Why is it in much of Europe doctors are trained to look for more cases of neuroborreliosis and treat them earlier on, whereas in the US they aren't? Recent evidence from EUCALB and your not-cited organizations state that the percentage of American-based Bb infected patients in Europe show a percentage of neurological symptoms equal to those found in European-based Bb infected patients. (It's in that recent Institute of Medicine report that was posted in April.)
Another patient weighs in...
[Comment From Julia 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."
I've bolded what I particularly would want to emphasize of your good points - thank you for contributing to this discussion. We need more people to ask questions referring to the science related to Lyme disease.
PS Julia: Please have someone proofread your question or type it into Word or some other text editor to run it through spell check first. I know you didn't mean to post typos, but it makes it harder to read.
So after this, Milton asked questions about vaccines, but they went unanswered as the chat was shut down at 1 pm EST.
This is all I have to say on this for now.
What are your thoughts about it?
Refer to the original chat transcript here:
http://www.courant.com/health/mc-health-chat-lyme-disease,0,4675217.htmlstory
