Jeremy Devine is a 3rd year Medical Student at The University of Toronto
On May 15th, 2016 the Conference to develop a federal framework on Lyme disease took place in Ottawa. A 30-day online consultation was launched on June 1, 2015 to inform the development of the Framework. Although ostensibly mandated by legislation, the conference was largely the work of Canada’s chief Lyme advocacy group: The Canadian Lyme Disease Foundation (CanLyme) and the patients they represent. CanLyme advocates for more liberal diagnostic and treatment guidelines, arguing that those followed in Canada – which are based on the Infectious Diseases Society of America (IDSA) guidelines – lead to misdiagnoses and neglected patients. Their position is reflected in Bill C-442 with the suggestion that current guidelines are “so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection.” This belief that the Lyme bacteria remains latent within the body, despite antibiotic therapy, is termed chronic Lyme disease and many patients feel prolonged antibiotic treatment, above the 4 weeks recommended by the IDSA, is needed to manage persistent symptoms.
However, evidence-based medicine has never accepted chronic Lyme disease as a genuine diagnosis. Studies are unanimous in demonstrating the ineffectiveness of prolonged antibiotic therapy above placebo, and patients who experience persistent symptoms almost always lack objective evidence of infection. Contrary to media discussions, the “controversy” over chronic Lyme has never pit physician against physician but rather patient against physician as the patient faces a medical community which is reluctant to recognize their internet-validated diagnosis.
Nevertheless, the patient testimonials heard throughout the 3-day conference were heart-wrenching as patients recounted their struggles in navigating a system deeply skeptical of their diagnosis but offering no acceptable alternative. Multiple specialists, expensive foreign treatment, and lives devastated by supposedly unrecognized Lyme were common themes. One woman had depleted her retirement savings to fund specialized Lyme treatment at a private clinic in the United States. Her Canadian serological testing did not indicate Lyme disease but an American laboratory had given a positive result and only after 16 months of continuous antibiotic therapy did she claim her illness began to improve. Another woman, after developing debilitating muscle pain and fatigue, had spent 5 years seeing over 10 different medical specialists before Lyme disease was diagnosed alternatively by her naturopath.
Yet substantial evidence would suggest that many at the conference never had a Lyme infection in the first place. Those who explained away a negative Canadian test result often did so with a positive one from for-profit U.S. labs – so-called “Lyme speciality laboratories” – that offer testing with very high false positive rates; use of these labs was popular among the conference attendees.
History repeats itself.
In 1934, an American microbiologist published an article titled “Chronic Brucellosis” in the Journal of the American Medical Association (JAMA). Echoing the Lyme narrative of today, the author, Mary C. Evans, lamented that so many cases of what she believed was a chronic brucellosis infection– acquired by drinking unpasteurized milk – were being misdiagnosed by American physicians as neurasthenia. Neurasthenia, which is no longer in modern medical vocabulary, meant literally exhausted nerves with patients experiencing profound fatigue, inexplicable body aches, insomnia, and general irritability – symptoms shared – Evans believed, by the patient with a chronic brucellosis infection. Her paper ended with a plea to the practising clinician:
“These facts [of the similar symptoms] challenge the right of a physician to make a diagnosis of neurasthenia – a diagnosis regarded as dishonorable by the patient, and also by his family, his employer, and his friends – without considering, among other possibilities, the possibility of chronic brucellosis.”
Evans was writing in a time when the teachings of Freud were still very much in the public’s consciousness. Neurasthenia, rather than what was previously regarded as a “real” weakening of the nervous system, was increasingly understood as a cover for psychosomatic illness – the mark of a troubled mind. Predictably, patients began to shun the diagnosis once the psyche was implicated. Naturally, Evans’ patients were grateful for the alternative diagnosis. However, it was not long before the legitimacy of chronic brucellosis was challenged by the medical establishment. Evans, along with other like-minded chronic brucellosis enthusiasts, had claimed one could still be chronically infected despite a negative serological “agglutination” test and that a fever, which was considered a staple symptom of brucellosis (and also provided objective evidence of infection), was not necessarily present in cases of chronic infection.
The parallels with the chronic Lyme controversy of today are striking.
Just as Evans and other enthusiasts insisted that a negative blood test could not rule out chronic brucellosis, so Lyme advocates stress the same for Canadian Lyme antibody testing. The CanLyme website, with a link inviting the user “to get the facts”, debunks various “Lyme Myths” they feel undermine their advocacy cause. Myth 5 highlights the flawed nature of Canadian Lyme disease testing, stressing that you can still be infected despite a negative serological test. Myth 6 states that there is no universally accepted test and that every laboratory has its “advantages and disadvantages”. One leaves the website with the impression that a Lyme diagnosis is essentially an act of faith on behalf of the patient.
Another parallel is the extent to which the symptomatology of both chronic brucellosis and chronic Lyme is made so vague and unrestricted that anyone with vexing chronic symptoms, unwilling to accept a psychological component, might be eligible for the preferable diagnosis of a chronic infection. Physicians in the 1940s complained of the “inconstant” and “protean” nature of the chronic brucellosis symptom list, and one could levy that same criticism against chronic Lyme disease when CanLyme claims a total of 74 different possible symptoms.
A final parallel centers on the stated insignificance of certain key symptoms generally used to make the diagnosis of infection. Evans considered the fever “an obstacle” in chronic brucellosis, while Lyme advocates take issue with the classic bull’s eye rash (as many claiming chronic Lyme have no personal recollection of the distinctive rash).
‘Chronic brucellosis’ disappeared following the medical community’s insistence that no evidence supported the diagnosis, and yet, despite similar concerns and skepticism, the idea of chronic Lyme disease is only gaining momentum today. This trend of patients dictating the details of their disease coupled with physicians hesitant to offend or upset can only result in confusion, misdirected care, and ultimately harm to the patient.
I think this opinion piece needs to be withdrawn from your magazine or edited to include the 700 plus articles that show Lyme Disease as a persistent infection. Since this article was posted, Vett Lloyd and a doctor who treats Lyme Disease in Canada have done a statistical model of infection and conclusions drawn were that the Canadian two tier method was only picking up ten percent of the cases of Lyme Disease in Canada so 90 percent of cases are undetectable. This is lower than the US where 56 percent of infections can be picked up by two tier testing. Does this mean that 90 percent of Canadians with Lyme Disease are entitled to be refused treatment from their publicaly funded healthcare system? Meanwhile the federal government suggests a clinical diagnosis on their page to healthcare professionals.
Time to end this idiocy and start treating people before we’re a country of chronically ill people who can’t work, need limited work hours, overwhelm disability insurance between the provinces and private insurance, not to mention the social costs.
Those who know Lyme and other TBDs can see the writer is quite ignorant of the science of Lyme and other TBDs that can come with ticks. It is also obvious he is trying to manipulate readers by claiming (incorrectly) that it is patient against doctor. Not only can doctors BE patients themselves, but there has always been a plethora of experts, researchers, doctors, those who have way more experience in the disease, saying that Borrelia can be a persistent infection.
The comparison with brucellosis made in this article is beyond silliness. I would have a hard time believing a medical student wrote it if I didn’t work with doctors every day. Some do not have any critical thinking ability.
It is doubtful this author will take the time to make this right, read through the most recent research (including persister cells and clearing persister cells in Borrelia infections with antibiotic combos in mice for example) even though he can be harming people with his misdirections and obvious confusion about the way this organism behaves.
I wonder if he’ll admit there might be a psychological component to that …
Kathleen M. Dickson
Fortunately for you, when you, your friends or family are infected by the numerous strains of Borrelia and co-infections, we and the other Chronic Lyme advocates will be here to help you cope with the horrific and debilitating symptoms and the lack of awareness and support among medical professionals.
We will also be able to direct you to the growing network of compassionate, intelligent and educated doctors who have taken the time to inform themselves on these issues and who still believe in practicing the art and science of healing.
Jennifer D. Kravis
Chair of the Board, Lyme Disease Society of Canada
How intriguing that thesee attacks on the “US Labs” continue, as if they are the only game in town.
I had the Canadian Test done and was told it was negative. As my condition deteriorated, I decided to revisit the possibility of vector-borne infections.
Therefore, I had the Igenix Western Blot test done – it came back positive Igenix but negative CDC for one of the few strains of Borrelia it actually tests for (there are many, and the CDC accepts a different number of positive ‘bands’ than Igenix to conclude if one is infected/exposed or not).
Because I was reluctant to go on aggressive antibiotics, despite having many of the symptoms, and having a positive test result, I paid big bucks to have my blood cultured for 16 weeks at a lab in the US (this test has also come under bashing/attacks) which came back positive. This means they GREW the bug out of my own blood.
Further re-testing, after treatment, has been through a highly reputable German Lab for an “Elispot” test which is not a serology test for antibodies (which many of us do not make in the long-term), and is not a culture (ref 1). ” Borrelia infections do not only show humoral immune responses by antibodies, but can activate T-lymphocytes at the same time. Once Borrelia burgdorferi is not active anymore, the T-cellular immune response should vanish. lymphocytes.”
It came back positive too.
That is a 3 to 1 win over the past 3 years saying -yes I have the bug – along with the symptoms, and the CDC in the US and the BCCDC in Canada (where I live) know their tests are not reliable and don’t test for all possible strains of the disease, nor does it include testing for co-infection such as Bartonella, Borrelia, unless specified. In BC, the serology has a ‘pre-probability’ mathematical model applied to the results, turning positives into negatives based on a filter that mathematically determines how ‘right’ the test is based on where you’ve traveled, if you’ve had a bulleseye rash, if there was an embedded tick. (Please correct me if I’m wrong – there is very little information available about this model, and doctors only get a yes/no answer from the test results sent to them via Central Control).
I have this to say to the Old Guard: Move forward, or move out of the way.
Lastly, there is a whole lot more to this disease than just persisting cells, spirochetes, cysts etc., We are talking about major relapsing fever and a major immuno-suppression systemic illness, thanks to the OsPA (Outer Surface Protein A) mechanism and a B-Cell AIDS type of illness (ref 2). We are also talking about potential research fraud and cover ups.
The case definition of Lyme Disease was changed in the the 90’s by Alan Steere et. al. to accommodate patenteering for a vaccine . That vaccine failed because it made people sick with the same symptoms as if they’d been bitten by a tick!). That case definition is the one the ISDA in the US (and therefore Canada) follows, and it excludes a vast majority of cases (Neurological). (ref 2)
ref 1: Elilspot http://www.arminlabs.com/en/tests/elispot
ref 2: https://badlymeattitude.com/2015/08/26/help-wanted-lyme-aids-2-0/
To say it has never pitted doct against doctor is a blatant, ignorant lie.
This article by Mr. Devine is a revealing testament to the quality of medical education in Canada, and provides insight to a serious problem facing Canadians.
This statement, “Yet substantial evidence would suggest that many at the conference never had a Lyme infection in the first place” is simply Mr. Devine repeating what an infectious disease doctor said at the Ottawa conference. That infectious disease doctor holds himself out as a expert on diagnosing Lyme disease yet he lives in a province with a very low number of confirmed cases (less than ten annually spread among many doctors). There is no evidence to make such a statement without each patient having gone an extensive differential diagnostic work-up employing all of today’s most current technology and science. This crystal ball method of diagnosing patients is being taught in our medical schools, using our tax dollars against us, while true investigative science is being pushed aside.
What is very evident in the medical literature is that the current 2 tier serology is inadequate and it will be 100% wrong every time, early or late stage, when the individual has a genotype of Borrelia that the tests are not designed to detect.
The tactic of comparing Lyme patients to other medical controversies is not new and is just as naive now as it was then. Mainstream infectious disease doctors in the past have compared Lyme patients with the anti-vaccine group, and now with a 1934 chronic brucellosis group. Luckily, in 2016 we have an amazing amount of technology, for example, able to detect persister cells in Lyme disease. Those scientists who are ethical investigators will not say that chronic Lyme disease does not exist… but then again they were taught to be scientists, not spin doctors.
Dr. Marshall was derided for years by mainstream medicine, who thought he was a quack for stating ulcers were often as a result of bacterial infection and treatable with antibiotics. He was openly ridiculed much in the same fashion as today’s infectious disease doctors ridicule anyone who disagrees with them on the Lyme file. It was only when science proved Dr. Marhall right that the childlike nonsense stopped. This is where we are today with Lyme disease and the anti-science, dogmatic approach to controlling the diagnosis and treatment of this serious illness. To hell with the science, you must believe my crystal ball!!
The Infectious Disease Society of America guidelines were wrong the moment they were published and have now been discounted as out of date and not meeting the standards of the Institute of Medicine GRADE level evidence. The alleged evidence used to support positions in those guidelines did not amount to much more than opinion… including the Klempner study Mr. Devine cited.
Mr. Devine, get on board with promoting good science based research. Relying on poor serological tests is old hat unless they can test across the genus Borrelia. Mathematical calculations to determine if a patient’s positive test is a true positive or a false positive are no more than pure crystal ball arrogance for a disease that is randomly transplanted anywhere that passerine birds fly.
It is amazing how our medical schools and the tax-payer research funders have avoided promoting human tissue study in many various patient groups to determine the true prevalence of borreliosis in our chronically ill population. Instead they promote and support indirect poor quality studies that do nothing to improve the quality of life NOW for the sick.
As I stated at the conference, if you believe the US private labs are so bad let us together design a study that will measure the accuracy of those labs and our provincial labs. This would not mean measuring the labs against a flawed CDC process using their well characterized samples of only B31 positive blood. We would measure against well characterized regional samples that would reflect what genotypes the population is actually being exposed to in those regions. The current one size fits all CDC method simply has never been an acceptable tool. Now that would be a good use of your and my tax dollars.
Canada has no idea how many Canadians have been exposed to Lyme disease over the decades and that must change. People are dying or becoming chronically ill while being refused access to proper medical attention. Employers are losing well trained staff. Enough is enough… time to get down to the business of good science and ethical, evidence based, non-dogmatic health care delivery.
President, Canadian Lyme Disease Foundation
Response “Bill C-442 and “Chronic Lyme Disease”: the parallels with chronic Brucellosis. -by Jeremy Devine
16 Aug 2016
The recent review of the Governments policy Expert’s report available here: http://tinyurl.com/j42ppdr “CDC Evades Accountability in Lyme Epidemic” by Jenna Luche-Thayer brings the management and dogma around Lyme disease into sharp focus. Much of this evidence the IDSA claims is fluff, barely level 4 science, or the opinion of some experts. When you say that evidence based medicine has always rejected that Lyme can be a serious chronic disease what you really means is that the IDSA, this old boys club at the centre of all this have always rejected this concept and every bit of scientific evidence that others have brought forward like the list of 700 peer-reviewed articles that demonstrate that Borrelia can survive brief rounds of antibiotic therapy available here: http://tinyurl.com/hb64vuq. Science is an ongoing debate and without debate, as in this case, it is not science. The definitions and guidelines around LB are drawn up behind closed doors in secret. This is dogma and it is wrong that they keep trying to write it in stone.
The problems really began when President Richard Nixon insisted that the CDC accept 50% funding from private industry, which was to be kept at arms length by the use of trusts. It hasn’t worked. Shareholder value determines what gets prioritized and there is no money in vaccines and combinations of older out of patent antibiotics seem to work on LB. The profits for industry are in marketing products to treat the chronic diseases of aging. The problem for Lyme is that it doesn’t kill enough people outright to warrant much attention. If you would like a better perspective on what Lyme disease can do to a physician follow the travails of Dr. Neil Spector: http://tinyurl.com/ztqle4r . You will be interested in what Dr. Stephen E. Phillips has to say about physicians with LB: http://tinyurl.com/jhft8b8 .
We have 6 physicians in Lunenburg and two of them have had heart block because of LB.
We can’t even agree on what we are talking about. The IDSA has devised a test that few can pass and then confuse the test with the disease. As a student it is wise to develop a healthy skepticism of everything you are being taught. Science and knowledge in most fields is growing at an ever-increasing rate except for Lyme disease (a borrelosis or LB). There have been only 3 studies and these are over 15 years old. At the same time there have been over 300 studies on Hepatitis C. When I was in dental school whole medical careers based on and books written on the ulcer personality. We have a variety of Pathogenic Borrelia species in Canada but the AMMI refuse to discuss the others and the fact that LB is a mixed infection for these ticks have cesspools for guts. Perhaps in your practice career someone might actually pick up the challenge and explain why Canada has the highest rate of MS in the world and yet the lowest rate of LB.
The CDC carefully analyzed the figures 3 different ways and found that they were missing 90% of the cases in the U.S. Similar discrepancies are to be found in Canada. Instead of the 917 lab confirmed cases in 2015 we had at least 9,000. By keeping the numbers low it is possible for the infectious disease doctors to ignore the situation and concentrate on their new mandate which is to remove antibiotics from most of the agricultural industry. If LB is going to be a problem they have learned to make it someone else’s. With Infectious disease’s ability to artificially keep the numbers so low it is hard for politicians to justify spending the money needed for research. It is a huge benefit to the for-profit health insurance companies to be able to use the test to decline or limit patient benefits. They love lunch box medicine where guidelines are set in stone. This does not lead to patient centered practices.
There are many powerful vested interests in keeping the status quo. They have managed to make a pandemic disappear.
With no reliable serological tests to fall back on it will necessitate the relearning of long forgotten skills like listening to the patient and taking a detailed history. This is a clinical disease that cannot be defined by serology simply because this is a disease of hard tissue. I read and followed everything put out by the IDSA and AMMI and like thousands of others only got better by realizing it was nonsense, crossing the border and taking a combination of 3 antibiotics, plaquenil and gabapentin for a year and a half and I am happy to be doing much better. Dr. David Patrick was trying to warn me of the U.S. Labs. My doctor didn’t want to see the lab report. He said it was up to me to convince him that I had LB. That takes time skill, training and knowledge.
We had a 10 year old who could tell us what was wrong with the recent study that said long-term antibiotics don’t work. She noticed right away the time limit was 6 weeks when a LB patient is told it usually takes 1.5 years and up to 4 years to treat and that only one antibiotic was used.
Perhaps you will learn how to listen to and respect your patients over time. Those were hundreds of horrendous stories we heard in Ottawa. A few might be anecdotal but hundreds and thousands are evidence.
Rob Murray DDS -retired
I appreciate that everyone should be allowed an opinion on Lyme Disease, even when the opinion, such as in this case is not quite correct. In fact, given that, as a third year med student, you have likely never seen, talked to, nor treated a Lyme Disease patient in your young life, one has to assume that you are simply regurgitating someone else’s thought on the subject. In fact, this blog very much smacks of coaching as much of it has been posted previously, word for word, by others who’s ideology is obsessive and blind to realities.
Let me start with the one thing you did get right:
The conference was held in May of this year.
However, it was not “ostensibly” legislated. It was legislated and, thus, it came to pass. Speakers at the conference consisted of those aforementioned persons who are obsessed in their narrow ideology, most of whom have never seen a patient, as well as those who have seen, talked to and treated patients and were a breath of fresh air, for those of us who are suffering.
In fact, as a result of the poor quality and less than understanding speeches from those who have never treated a lyme patient, a new Society has now been formed, consisting of volunteers from all across Canada. The Lyme Disease Society of Canada, of which I am President, will focus on ensuring the general public is made aware of the prevalence and severity of Lyme Disease, that those suffering from Chronic Lyme Disease, are provided with the programs, tools and resources to actually get the diagnosis, testing and treatment they desperately need by Dr”s who do treat lyme and providing front line medical staff and first responders with “evidence based medical reports, that do show up to date information on the difficulties of testing 100 different strains of the lyme bacteria and coinfections, the need for ongoing treatment and evidence backed reasons why the current ideology isn’t working.
As well, we will be bringing the current evidence of babesia in the blood to the Canadian Blood Services and requesting better screening for the public and will be bringing evidence based reports on the transference of lyme disease bacteria sexually and congenitally.
There are, in fact, two sets of guidelines, one that has been deemed to be out of date (CDC and IDSA) and thus removed from the NHO clearing house for guidelines and the other (ILADS) that were created by medical Dr’s who actually know how to diagnose and treat Lyme Patients. They are now the only guidelines accepted by the NHO.
Drs. are, in fact, pitted one against the other as was evident at the Conference, if you, personally had been there. Add to that several Dr’s have been censured by the College of Physicians and Surgeons for treating lyme disease, is also an example fo Dr. vs Dr.
As to patient vs Dr., there are many Dr’s who are willing to treat, but do so, “under the radar” because they don’t believe in listening to young med students regurgitating their professor’s text book theories, nor do they believe those who have never treated and are obsessively stuck in the past.
As for “internet-validated” diagnosis, where did you get most of your “peer reviewed” evidence based knowledge…if you did actually read it. The internet, of course. And, that’s what makes Lyme Patients so knowledgeable. They do research, they do question, they do make demands of practitioners, all because this is their life, this is their health and they deserve to be treated with respect by Dr’s who aren’t so ready to dismiss because it is easier or less time consuming to do so.
Never had Lyme in the first place:
Again, where you in attendance at the conference, because to make a statement that substantial evidence suggests many at the lyme conference didn’t even have lyme borders on a libelous statement. In the absence of any stated evidence in your blog, I would suggest you might want to refer to the Medical Law Handbook before making such statements. (And yes we have a copy and yes we understand it well.)
History repeats itself:
This last comment will be short and sweet. You’ve picked the wrong disease to compare with. Lyme Disease and it’s lack of acknowledgement, lack of understanding and persecution of Lyme Patients is more indicative of the fight that HIV/Aids went through. And, look at where they are now.
Throughout history there have been examples of the medical establishment denigrating an enlightened Dr’s findings and recommendations….think handwashing. So yes history is repeating itself and those who continue with a myopic view will, eventually, have to step back, not because of Lyme Patients pushing the agenda, but because researchers and Drs from many notable hospitals are producing evidence based and actual treatment results that show those who currently insist or are easily influenced to write about things they know nothing about new and more accurate results.
Having said all of that, I thank you for writing your blog, whether influenced or not. It gives those of us who know the opportunity to confirm the work that still has to be done as well as the confidence we are on the right track.
President, Lyme Disease Society of Canada
Anna Marie( mother of a Lyme sufferer)
Well said!! We must continue our fight , so our Lyme patients have a fighting chance!!
Evidence based studies of Lyme and tick borne diseases show bacterial persistence. Here are over 700 studies: http://www.ilads.org/ilads_news/wp-content/uploads/2015/09/EvidenceofPersistence-V2.pdf
Yes there is evidence of infection, but most physicians are not trained to see it. See this playlist of Lyme experts, particularly Dr. Alan MacDonald, for some alternative viewpoints: https://goo.gl/8rkNEp
My niece contracted borreliosis and co-infections at age 4. She alone is proof that prolonged antibiotic treatment – the right type and combination – can be lifesaving. She was 4 and in a delirium, deemed by her doctors to have untreatable “Childhood Disintegrative Disorder”. When she was treated privately by a Lyme literate doctor the improvement was dramatic. Placebo effect does not make rational sense for a 4 year old in a delirium. She would be profoundly disabled or more likely dead if not for that treatment.
If you are unbiased enough to view the above playlist, you will see that there are physicians in the medical community who indeed acknowledge and treat chronic Lyme. Dr. Edward Breitschwerdt quotes Aristotle in one of his lectures: “It is the mark of an educated mind to be able to entertain a thought without accepting it.” I have no doubt that as more physicians, along with their friends and family, are affected personally by borreliosis, their perspectives will dramatically change.
“The amount of energy necessary to refute bullshit is an order of magnitude bigger than to produce it.” (Attributed to the programmer Alberto Brandolini)
Maybe you should be challenging the federal government and our federal Public Health Agency in who we put our trust in when it comes to Lyme Disease. It’s very clear by this article written a medical student shows he has not done his homework but instead has based his opinion on the CDC’s outdated recommendation regarding dx, testing and treatment. We are Canadian. Not in the US. If this is what is taught in medical school in Canada, which I know has been for decades, then no wonder so many are still stick. Please familiar yourself with what OUR government has to say regarding Lyme dx and treatment. Clearly they have done their homework and have backed their guidelines on science because they have to. http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/lyme/treatment-traitement-eng.php
“How is Lyme disease diagnosed?
Getting a diagnosis of Lyme disease can be difficult as symptoms vary from person to person. Symptoms can also be similar to other illnesses. Your health care provider will likely:
examine your symptoms
determine if you were potentially exposed to Lyme-infected blacklegged ticks by asking about your recent activities
request (if necessary) laboratory testing to support a clinical diagnosis
Consult a health care provider as soon as possible if you have symptoms. Also consult with a doctor if you feel unwell in the weeks following a tick bite. The sooner you get treatment, the more rapid will be your recovery.
What is the treatment?
Most cases of Lyme disease can be effectively treated with 2 to 4 weeks of antibiotics. Depending on the symptoms and when you were diagnosed, you may require a longer course of antibiotics.
Some people experience symptoms that continue more than 6 months after treatment. Research continues into the causes of these persistent symptoms and possible treatment methods.”
You’ve also missed the 700+ peer reviewed scientific studies done regarding Lyme and persistence in some people (not all). Everyone does not fit in this “one size fits all” mentality due to if they have been treated, when they have been treated, with which antibiotic and their underlying medical issues. Example: If you knew anything about people with an MGUS you would know that antibodies are suppressed and in most cases make it difficult to fight off certain bacterial infections.
Unfortunately, Ms. Creswell is confusing the issues. She cites a Canadian web site with a basic summary of Lyme treatment guidelines which uses hedging language in order to account for possible rare outliers. This language does not excuse inappropriate diagnoses and treatments.
“Most cases of Lyme disease can be effectively treated with 2 to 4 weeks of antibiotics. Depending on the symptoms and when you were diagnosed, you may require a longer course of antibiotics.” – This hedging language does not in any way justify the months or years of antibiotics cocktails commonly prescribed by Lyme quacks. This is especially true for patients who have no objective evidence of Lyme disease, like most Chronic Lyme activists.
“Some people experience symptoms that continue more than 6 months after treatment. ” – This is called Post-Treatment Lyme Disease Syndrome. Since there is no evidence of continued infection in PTLDS, it would be inappropriate to treat PTLDS with antibiotics or any of the other quackery commonly used in Chronic Lyme groups.
Also a review of that list of “700 studies” bandied about by Chronic Lyme activists does not show what they think it shows. There are many repeats, irrelevant studies, non-human studies, and even studies demonstrating the lack of scientific support for claims made by “Lyme literate” quack doctors. In addition, you can’t just ignore evidence because you dislike it. The totality of the evidence must be considered.
In the past few decades since the first Chronic Lyme groups formed, the evidence against Chronic Lyme pseudoscience has only grown. Unfortunately, the religious fervor, finances, and population of the Chronic Lyme activists have also grown.
Mr. Chronic AKA Charles, you are confusing the issue. Let me remind you of the following:
1. The web site that I cited is our Federal Government of Canada website for public information regarding Lyme Disease. It’s not something you simply push aside and pretend it means nothing. As a Canadian, and like many others in the country, we rely on what our government tells us. They base their guidelines on science. This blog is Canadian via The Canadian Medical Association Journal.
2. You are based in the US. Here is some US based information for you to review exactly what I have posted on your Facebook page in the past.
Centers for Disease Control and Prevention, National Center for Infectious Diseases, Division of Vector-Borne Infectious Diseases
Publication date: 01/01/1991
Table of Contents
How the disease is spread
Life cycle of Lyme disease ticks
Lyme disease in domestic animals
Symptoms and signs of Lyme disease
Lyme disease and pregnancy
Treatment and prognosis
Personal protection from tick bites
Lyme disease research
POINT OF CONTACT FOR THIS DOCUMENT:
Lyme disease was first recognized in the United States in 1975, after a mysterious outbreak of arthritis near Lyme, Connecticut. Since then, reports of Lyme disease have increased dramatically, and the disease has become an important public health problem in some areas of the United States.
Lyme disease is an infection caused by Borrelia burgdorferi, a member of the family of spirochetes, or corkscrew-shaped bacteria.
How the disease is spread
Lyme disease is spread by the bite of ticks of the genus Ixodes that are infected with Borrelia burgdorferi. The deer (or bear) tick, Ixodes dammini, which normally feeds on the white-footed mouse, the white-tailed deer, other mammals, and birds, is responsible for transmitting Lyme disease bacteria to humans in the northeastern and north-central United States. (In these regions, this tick is also responsible for the spreading of babesiosis, a disease caused by a malaria-like parasite.) On the Pacific Coast, the bacteria are transmitted to humans by the western black-legged tick, Ixodes pacificus, and in the southeastern states possibly by the black-legged tick, Ixodes scapularis.
Ixodes ticks are much smaller than common dog and cattle ticks. In their larval and nymphal stages, they are no bigger than a pinhead. Adult ticks are slightly larger.
Ticks can attach to any part of the human body but often attach to the more hidden and hairy areas such as the groin, armpits, and scalp.
Research in the eastern United States has indicated that, for the most part, ticks transmit Lyme disease to humans during the nymph stage, probably because nymphs are more likely to feed on a person and are rarely noticed because of their small size (less than 2 mm). Thus, the nymphs typically have ample time to feed and transmit the infection (ticks are most likely to transmit infection after approximately 2 or more days of feeding).
Tick larvae are smaller than the nymphs, but they rarely carry the infection at the time of feeding and are probably not important in the transmission of Lyme disease to humans.
Adult ticks can transmit the disease, but since they are larger and more likely to be removed from a person’s body within a few hours, they are less likely than the nymphs to have sufficient time to transmit the infection. Moreover, adult Ixodes ticks are most active during the cooler months of the year, when outdoor activity is limited.
Ticks search for host animals from the tips of grasses and shrubs (not from trees) and transfer to animals or persons that brush against vegetation. Ticks only crawl; they do not fly or jump. Ticks found on the scalp usually have crawled there from lower parts of the body. Ticks feed on blood by inserting their mouth parts (not their whole bodies) into the skin of a host animal. They are slow feeders: a complete blood meal can take several days. As they feed, their bodies slowly enlarge.
Although in theory Lyme disease could spread through blood transfusions or other contact with infected blood or urine, no such transmission has been documented. There is no evidence that a person can get Lyme disease from the air, food or water, from sexual contact, or directly from wild or domestic animals. There is no convincing evidence that Lyme disease can be transmitted by insects such as mosquitoes, flies, or fleas.
Campers, hikers, outdoor workers, and others who frequent wooded, brushy, and grassy places are commonly exposed to ticks, and this may be important in the transmission of Lyme disease in some areas. Because new homes are often built in wooded areas, transmission of Lyme disease near homes has become an important problem in some areas of the United States. The risk of exposure to ticks is greatest in the woods and garden fringe areas of properties, but ticks may also be carried by animals into lawns and gardens.
Lyme disease has a wide distribution in northern temperate regions of the world. In the United States, the highest incidence occurs in the
Northeast, from Massachusetts to Maryland.
North-central states, especially Wisconsin and Minnesota.
West Coast, particularly northern California.
For Lyme disease to exist in an area, at least three closely interrelated elements must be present in nature: the Lyme disease bacteria, ticks that can transmit them, and mammals (such as mice and deer) to provide food for the ticks in their various life stages. Ticks that transmit Lyme disease can be found in temperate regions that may have periods of very low or high temperature and a constant high relative humidity at ground level.
Life cycle of Lyme disease ticks
Knowing the complex life cycle of the ticks that transmit Lyme disease is important in understanding the risk of acquiring the disease and in finding ways to prevent it.
The life cycle of these ticks requires 2 years to complete. Adult ticks feed and mate on large animals, especially deer, in the fall and early spring. Female ticks then drop off these animals to lay eggs on the ground. By summer, eggs hatch into larvae.
Larvae feed on mice and other small mammals and birds in the summer and early fall and then are inactive until the next spring when they molt into nymphs.
Nymphs feed on small rodents and other small mammals and birds in the late spring and summer and molt into adults in the fall, completing the 2-year life cycle.
Larvae and nymphs typically become infected with Lyme disease bacteria when they feed on infected small animals, particularly the white-footed mouse. The bacteria remain in the tick as it changes from larva to nymph or from nymph to adult. Infected nymphs and adult ticks then bite and transmit Lyme disease bacteria to other small rodents, other animals, and humans, all in the course of their normal feeding behavior.
Lyme disease in domestic animals
Domestic animals may become infected with Lyme disease bacteria and some of these (dogs, for instance) may develop arthritis. Domestic animals can carry infected ticks into areas where humans live, but whether pet owners are more likely than others to get Lyme disease is unknown.
Symptoms and signs of Lyme disease
Early Lyme Disease: The early stage of Lyme disease is usually marked by one or more of the following symptoms and signs:
chills and fever
muscle and joint pain
swollen lymph nodes
a characteristic skin rash, called erythema migrans
Erythema migrans is a red circular patch that appears usually 3 days to 1 month after the bite of an infected tick at the site of the bite. The patch then expands, often to a large size. Sometimes many patches appear, varying in shape, depending on their location. Common sites are the thigh, groin, trunk, and the armpits. The center of the rash may clear as it enlarges, resulting in a bulls-eye appearance. The rash may be warm, but it usually is not painful. Not all rashes that occur at the site of a tick bite are due to Lyme disease, however. For example, an allergic reaction to tick saliva often occurs at the site of a tick bite. The resulting rash can be confused with the rash of Lyme disease. Allergic reactions to tick saliva usually occur within hours to a few days after the tick bite, usually do not expand, and disappear within a few days.
Late Lyme Disease: Some symptoms and signs of Lyme disease may not appear until weeks, months, or years after a tick bite:
Arthritis is most likely to appear as brief bouts of pain and swelling, usually in one or more large joints, especially the knees.
Nervous system abnormalities can include numbness, pain, Bell’s palsy (paralysis of the facial muscles, usually on one side), and meningitis (fever, stiff neck, and severe headache).
Less frequently, irregularities of the heart rhythm occur.
In some persons the rash never forms; in some, the first and only sign of Lyme disease is arthritis, and in others, nervous system problems are the only evidence of Lyme disease.
Lyme disease and pregnancy
In rare cases, Lyme disease acquired during pregnancy may lead to infection of the fetus and possibly to stillbirth, but adverse effects to the fetus have not been conclusively documented. The Centers for Disease Control and Prevention (CDC) maintains a registry of pregnant women with Lyme disease to advance the understanding of the effects of Lyme disease on the developing fetus.
Lyme disease is often difficult to diagnose because its symptoms and signs mimic those of many other diseases. The fever, muscle aches, and fatigue of Lyme disease can easily be mistaken for viral infections, such as influenza or infectious mononucleosis. Joint pain can be mistaken for other types of arthritis, such as rheumatoid arthritis, and neurologic signs can mimic those caused by other conditions, such as multiple sclerosis. At the same time, other types of arthritis or neurologic diseases can be misdiagnosed as Lyme disease.
Diagnosis of Lyme disease should take into account
History of possible exposure to ticks, especially in areas where Lyme disease is known to occur.
Symptoms and signs.
The results of blood tests used to determine whether the patient has antibodies to Lyme disease bacteria.
These tests are most useful in later stages of illness, but even then they may give inaccurate results. Laboratory tests for Lyme disease have not yet been standardized nationally.
Treatment and prognosis
Lyme disease is treated with antibiotics under the supervision of a physician. Several antibiotics are effective. Antibiotics usually are given by mouth but may be given intravenously in more severe cases. Patients treated in the early stages with antibiotics usually recover rapidly and completely. Most patients who are treated in later stages of the disease also respond well to antibiotics. In a few patients who are treated for Lyme disease, symptoms of persisting infection may continue or recur, making additional antibiotic treatment necessary. Varying degrees of permanent damage to joints or the nervous system can develop in patients with late chronic Lyme disease. Typically these are patients in whom Lyme disease was unrecognized in the early stages or for whom the initial treatment was unsuccessful. Rare deaths from Lyme disease have been reported.
Tick Control: Removing leaves and clearing brush and tall grass around houses and at the edges of gardens may reduce the numbers of ticks that transmit Lyme disease. This is particularly important in the eastern United States, where most transmission of Lyme disease is thought to occur near the home.
A relationship has been observed between the abundance of deer and the abundance of deer ticks in the eastern United States.
Applying acaricides (chemicals that are toxic to ticks) to gardens, lawns, and the edge of woodlands near homes is being done in some areas, but questions remain regarding its effectiveness and environmental safety. Application to residential properties should be supervised by a licensed professional pest control expert.
Reducing and managing deer populations in geographic areas where Lyme disease occurs may reduce tick abundance. Removing plants that attract deer and constructing physical barriers may help discourage deer from coming near homes.
Personal protection from tick bites
The chances of being bitten by a tick can be decreased with a few precautions.
Avoid tick-infested areas, especially in May, June, and July (many local health departments and park or extension services have information on the local distribution of ticks).
Wear light-colored clothing so that ticks can be spotted more easily. Tuck pant legs into socks or boots and shirt into pants.
Tape the area where pants and socks meet so that ticks cannot crawl under clothing.
Spray insect repellent containing DEET on clothes and on exposed skin other than the face, or treat clothes (especially pants, socks, and shoes) with permethrin, which kills ticks on contact.
Wear a hat and a long-sleeved shirt for added protection.
Walk in the center of trails to avoid overhanging grass and brush.
After being outdoors, remove clothing and wash and dry it at a high temperature; inspect body carefully and remove attached ticks with tweezers, grasping the tick as close to the skin surface as possible and pulling straight back with a slow steady force; aviod crushing the tick’s body. In some areas, ticks (saved in a sealed container) can be submitted to the local health department for identification.
Preventive Antibiotic Treatment: Antibiotic treatment to prevent Lyme disease after a known tick bite may not be warranted. Physicians must determine whether the advantages of using antibiotics outweigh the disadvantages in any particular instance. If antibiotics are not used, physicians should alert patients to the symptoms of early Lyme disease and advise them to return for reevaluation if symptoms occur.
Lyme disease research
Research continues to discover
Where ticks are most likely to be and how best to protect against them.
Which chemicals and other approaches are best for controlling ticks in each kind of habitat.
Better diagnostic tests.
Improved antibiotic treatment.
An effective vaccine.
Effects of mother’s infection on the developing fetus.
How Lyme disease bacteria cause chronic infections of the joints and nervous system and how to prevent these complications.”
It has been more than established by scientific studies that persistence in some patients exists and again for various reason that I originally mentioned. Whether it’s called, Post-Treatment Lyme Disease Syndrome or Chronic Late Stage Lyme Disease as per the CDC in 1991, or Chronic Lyme does not matter. What is important is that patients have reliable testing, proper dx and treatment.
Mr. Chronic/Charles…you couldn’t have said it any better…”In addition, you can’t just ignore evidence because you dislike it. The totality of the evidence must be considered.”
May I suggest that If you don’t like the wording by our Federal government then please ask them to change it. I would also suggest that you re-read Elizabeth Rogers
President, Lyme Disease Society of Canada post to familiar yourself better with the correct information.
The IDSA guidelines for diagnosis and treatment of Lyme Disease, which are so strictly followed by CDC/Canada were REMOVED from he US Federal Dept. of Health in Feb 2016 for being out of date and not conforming to the Institute of Medicines requirements for clinical guidelines. They have been replaced, at a Federal level, by the ILADS (2014) Lyme Disease guidelines – evidence based and peer reviewed. These are the guidelines that have enabled Canadians to be properly diagnosed and treated.
Virtually all Canadian doctors are unaware that the outdated IDSA guidelines that they have been force-fed have been discounted.
There are multiple, peer reviewed articles that show that the ELISA test is, at best, around 50% accurate in detecting Lyme Disease. Health Canada, on their own site, says that the tests are unreliable.
IGenex, which is the American lab you refer to, has been licensed in all US States since 1991. It has repeatedly passed the stringent licensing requirements of the C.L.I.A. and the American College of Pathology. The Lyme testing they offer included the specific bands that were removed under the Dearborn Criteria. Therefore, it is no surprise that in a select group of people who clinically and by history have Lyme as part of the differential diagnosis would test positive by IGenex criteria.
IGenex is a for profit lab.
Lifelabs in a for profit lab.
Immunotech ….. US maker of the ELISA tests used in Canada is a for profit lab.
Your interest in Lyme Disease is to be commended, at your stage in training….but you have been derailed by the kind of scathing disrespect and mis-information that plagues the issues around Lyme Disease. Take this opportunity to investigate further…..I suggest you start with the excellent book by Pamela Weintraub “Cure Unknown”. It will give you an accurate overview of the issues…..and, who knows, you may be enlightened and educated to the point that, in the future, you would be the kind of doctor that Lyme patients would be fortunate to consult.
Dr Anne Uings
Unfortunately, due to my brain not functioning at it’s very best these days whether due to Lyme and/or other tick borne diseases, or something else Doctors seem to be unable to diagnose, I am going to provide a few links that I hope adequately respond to some of the comments made in this post.
– Re the testing. Those of us that refer to testing issues are saying this mostly due to the following – http://www.hc-sc.gc.ca/dhp-mps/medeff/bulletin/carn-bcei_v22n4-eng.php
– Re the guidelines. The fact that the IDSA guidelines have been removed from the National Guidelines Clearinghouse and that the ILADS (International Lyme and Associated Diseases Society) guidelines are the only ones there at present, suggests that Doctors should be able to utilize the ILADS guidelines for treatment of Lyme. Why are the IDSA guidelines pushed by Infectious Disease Doctors? – https://www.guideline.gov/summaries/summary/49320?
– Re longer term use of antibiotics to eradicate Lyme, most “patients” and some Doctors will suggest treating until a patient is well rather than stopping at an arbitrary amount of time. Others will suggest that it is how and when antibiotics are given that will help eradicate infection. There is still much to learn but to just focus on one or two research documents when considerable research has now been undertaken to suggest that the Lyme bacteria, once disseminated, is harder to eradicate, seems almost illegal, certainly unethical. – http://cid.oxfordjournals.org/content/45/2/149.full; http://www.northeastern.edu/news/2015/06/researchers-discovery-may-explain-difficulty-in-treating-lyme-disease/; http://www.borreliose-gesellschaft.de/Texte/guidelines.pdf; http://www.ei-resource.org/news/related-conditions-news/lyme-bacteria-found-to-hide-in-lymph-nodes-while-us-state-mandates-long-term-antibiotics-for-chronic-lyme/; http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0048277; and there are many, many more if one looks for them.
I would respectfully suggest that no more articles on Lyme disease be printed by CMAJ unless more thorough and unbiased research is undertaken.
Mr. Devine’s article is really excellent. It’s disappointing to see the same old propaganda from a Lyme Truther. Most people in these chronic lyme groups did not have Lyme disease in the first place. The plausibility is especially low if they were in areas with few reports of real lyme disease.
Testing may not be accurate in early lyme (and we could use some better tests in that stage), but luckily 70-80% of patients develop an EM rash, which can be used to diagnose a patient. Testing is invariably positive in late lyme when antibodies have had a chance to build up. In fact, Ms. Lugar’s reference notes a sensitivity of “97% for the sera of patients with Lyme arthritis.”
The National Guidelines Clearinghouse does not endorse guidelines, so having a guideline put up or taken down is irrelevant. The requirements for posting on the NGC are based on form, not science. The ILADS guidelines confess that they are based on “very-low quality evidence”, so there is no reason anyone should follow them.
Contrary to the misinformation spread by the Chronic Lyme Cult, there is a strong international scientific consensus regarding diagnosis and treatment of Lyme disease. Long term antibiotics are inappropriate based on at least 5 double-blind randomized controlled trials. In addition, there is no reason to try all the other quackery like herbs, chinese medicine, detoxing, rife machines, hyperbaric oxygen, stinging yourself with bees, ozone therapy, crazy IV therapies, etc.
All of the studies that Ms. Lugar has referenced are not in humans, and are considered extremely weak evidence since they are not necessarily applicable to humans.
Ms. Lugar also cites the pseudoscientific guidelines of Deutsche Borreliose-Gesellschaft , which is just the German version of the quack group ILADS. Science deniers love to cite other science deniers in support of their assertions, but it just ends up becoming an echo chamber.
Charles, please provide us the evidence to support that 70 to 80% of patients with Lyme disease will present with an EM rash. Here is evidence that contradicts that position, including specifically in Nova Scotia children with Lyme arthritis… http://canlyme.com/lyme-basics/symptoms/classic-lyme-rash/
I disagree with your assessment of the Mr. Devine’s article, which contained several factual errors. And, as I’ll explain, several of your remarks are not supported by a careful examination of the evidence.
Serologic testing for Lyme disease is unreliable. Studies by Ang, Bakkan, Hunfeld and others have repeatedly demonstrated that test results are often reproducible. The sensitivity of two-tier testing is skewed towards identifying cases of Lyme arthritis and missing cases of neurologic Lyme. Here’s the evidence. Bacon et al demonstrated that the C6ELISA was 94% sensitive for Lyme arthritis but only 73% sensitive for late neurologic Lyme. Dressler demonstrated that the 5 of 10 criteria used to interpret IgG western blot patterns was 96% sensitive for his well-characterized patients with Lyme arthritis but only 72% sensitive in his patients with active neuroborreliosis. Thus, while two-tier sensitivity for arthritis exceeds 90%, it is only 54% sensitive for neurologic Lyme. Seronegative patients clearly exist. You may be surprised to learn that 17% of the subjects in Logigian’s Lyme encephalopathy trial were seronegative yet they qualified for admission based on other parameters.
A strong consensus regarding the value of antibiotic retreatment is no substitute for being scientifically correct. Contrary to your understanding, 3 of the 5 studies you noted (Klempner x2 and the recent study by Berende) were so poorly designed that their findings should be ignored. For example, the inclusion criteria in the Berende study were so loose that they enrolled subjects without sufficiently screening for other etiologies of their illnesses, included treated and untreated subjects and included subjects whose baseline functioning was better than the mean of the general population. The remaining two trials, one by Krupp and the other by Fallon, were well-designed and both found that antibiotic retreatment provided sustained improvement for patients with severe fatigue. The treatment effect was moderate to large. For the details, see the biostatistical paper by Delong and Fallon’s 2012 paper that reviews the 4 NIH-funded trials.
Admittedly, those trials were plagued by a high rate of serious adverse events, which is why the authors did not recommend their specific therapeutic regimen for patients with persistent symptoms. But both authors said that further studies on antibiotic retreatment were warranted and they suggested that future research seek out regimens that were safer and less costly. Given the costs associated with conducting clinical trials, I’m amazed that so many physicians would walk away from promising findings that could lead to substantial improvements in patients’ lives.
As one of the co-authors of the ILADS guidelines, I was somewhat amused by your portrayal of our guidelines. Our transparent analysis of the trial evidence and formulation of treatment recommendations used the GRADE methodology, which is known to be quite rigorous. You are quite correct that we found the evidence to be of very low-quality. Hayes and Mead reached a similar conclusion in their GRADE analysis of the neurologic Lyme literature. Regardless of the poor evidence quality, physicians are looking for guidance, which we provided.
What amused me about your comment is that you apparently failed to recognize that we used the same trial evidence as the authors of the 2006 IDSA guidelines. That group did not perform systematic reviews of the appropriate literature and it over-rated the strength of the individual trials. It also appears that you failed to notice that 54% of the recommendations included in the IDSA guidelines were based on panel opinion; opinion is not evidence.
The evidence base for Lyme disease continues to evolve and substantial gaps in our understanding of the pathogen and how best to eradicate it remain. Thus, physicians caring for patients with Lyme disease often find themselves practicing in the grey zone. Without reliable biomarkers of disease, it is difficult to separate the infected from the non-infected. The lack of high-quality trial evidence makes it challenging to prescribe antibiotics with confidence. Despite these obstacles, I know many well-informed physicians who are willing to work with very ill Lyme patients. Please grant them a measure of professional courtesy and get out of their way.
I made an unintended error regarding serology that I will now correct. I meant to say that results are often unreproducible.
I should also add that Ang found the likelihood of a sample being positive on two-tier testing had more to do with which combination of ELISA and Western blot was used than the patient’s disease status.
Your deliberate use of discrediting labels to rationalize your position diminishes your credibility. Your chosen labels are: “Lyme truthers”, chronic Lyme “cult”, “quackery”, and “science deniers”. These speak to your bias.