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Monday, January 6, 2014

Lyme war: hotter than ever

The war over Lyme disease is perhaps only getting hotter. Numerous articles have been published in the last couple of years; many have been editorial in nature and have strongly touted the IDSA point of view. A piece written by Paul Auwaerter in 2012 published in “Transactions of the American Clinical and Climatological Association” is exemplary of this trend. Some important and relevant issues are covered in this pseudo-erudite, sarcastic editorial  -- masquerading in the guise of academic medical evidence.  Here the IDSA is strongly pressing its case while deriding phony LLMDS who mendaciously contend they are the only ones who truly understand the disease.  I personally do not like the term LLMD because both sides are generally very literate with regard to Lyme disease literature. Naturally each side cherry pick the data which supports their a-priori view. Of course I believe their viewpoint is dangerously wrong.
It is asserted that chronic Lyme disease is the diagnosis of the day, the soup du jour,  used to fill in a vacuum, to explain chronic maladies poorly understood by medical science. In typical fashion, chronic fatigue syndrome and fibromyalgia are trudged out as disorders erroneously attributed to Lyme disease. Lyme and other infectious diseases before it have been erroneously posited to fill the vacuum of poorly understood chronic illness according to the author. An historical list, ostensibly discredited, of infectious agents previously used for the same purpose are said to include: brucellosis, Epstein-Barr virus, candidiasis, toxic mold and others. The assumption here is that chronic Lyme disease will be replaced with some other entity in the future when the next best thing comes along.
The author states that the LLMDs and their community have created a phony world of bad doctors, bad research, poor publications and meetings to promulgate cockamamie theories and that a thin veneer of pseudoscience is used to unfairly and unwisely promote political agendas. Physicians who stand outside the narrow paradigms of the IDSA are labeled as unethical
The assumptions of the IDSA have been challenged as of late. This is nothing new. In "Contemporary Clinical Trials" in 2012, Delong published a biostatistical review of four clinical trials,(the cornerstone of the IDSA worldview) which clearly refutes the conclusions drawn by the IDSA from these studies. The new analysis shows there is evidence of beneficial effects of the treatments given in the studies.
This assessment was of course later challenged by the cadre of: Klempner, Baker, Shapiro, Marques, Dattwyler, Halperin and Wormser who not surprisingly, vehemently disagreed.

The most recent of the 4 studies was published in "Neurology" in 2008. Patients were treated with 10 weeks of intravenous ceftriaxone. Evaluation of the subjects at 12 week showed significant improvement in neuro-cognitive function and improvements in quality of life measures including fatigue, pain and impaired physical functioning. At 24 weeks the cognitive improvements were not sustained but the improvements in physical functioning were.
Apparently, Dr. Fallon, the lead investigator of the above mentioned study  is not enamored with the way these study results are being bandied about.  In "Open Neurology Journal" in 2012 he states that posttreatment Lyme disease improvements in patient outcomes were demonstrated in 2/4 of the NIH sponsored studies. He concludes:  “While repeated intravenous therapy can be effective, safer modes of delivery are needed.”
The IDSA continues to maintain that two-tier testing for Lyme disease is accurate. This is an important part of the narrative repeatedly used to prove patients do not have Lyme disease. In the "European Journal of Clinical Microbiology and Infectious Disease" in 2011, Ang et al tested 8 different ELISA systems and 5 immunoblots and found no consensus whatsoever amongst these various IDSA endorsed and FDA approved tests. This precious test, promoted to the hilt,  is not accurate.
The counter paradigm regarding Lyme disease is in fact steeped in science. Animal studies in mice, dogs and primates have shown that established Lyme cannot be fully eradicated from the host. Many unique, survival enhancing properties of the microbe in-vitro and in-vivo, have been well described in medical and scientific, peer-reviewed literature now over a period of decades. The assertion that groups like ILADS manufacture evidence is fabricated from whole cloth.
IDSA proponents  believe that notions of chronic Lyme disease reflect some type of mass hysteria fueled by bad science and the internet.  A frequent mantra oft repeated to my patients has been:  "if you only did not read the internet everything would be fine." If only it were true.  Lyme patients are misdiagnosed, disenfranchised, marginalized and dismissed by a medical system which is all to quick to labels them as crazy rather than sick.  The diagnosis of Munchausen's by proxy was used by a hospital in an effort to legally remove a sick child from loving parents. (This occurred to a patient I have evaluated).

Lyme disease is not a fad as the editorial states. Unfortunately it is here to stay. The epidemic has been increasing in prevalence and severity since the 1970s.
The treatment of patients suffering with this unseen plaque is challenging. Each case is different. Multiple factors influence the presentation of the disease. The scope of the illness ranges from mild to deadly.  Some factors seem random. Others are environmental or genetic. There are variant strains of Lyme which may play out differently. The contribution of co-infections with Babesia and other bacteria plays an enormous role.

Lyme war:
On one side, the fight is largely political. On the other it is largely professional. Well respected "experts" - the names mentioned above, and others, are using the full weight of regulatory authorities, prominently Medical Boards or other quality review organizations such as those working for health insurance companies, over whom they have much influence, to eliminate their adversaries:  physicians who do not agree with or practice by their standards.

Unfortunately we cannot have a civil disagreement about two paradigms and two standards of care. No. And that really stinks.


lymie said...

Another slanderous article pretending to be medical. Makes you wonder why the journals print this garbage.

vtherbalist said...

"At 24 weeks the cognitive improvements were not sustained but the improvements in physical functioning were not."

I do not have access to the articles cited. Can you please clarify this statement. Many thanks-

lymie said...

Here is an excerpt from the speech made by the incoming president of the group that published that slanderous Auwaeter article, that trashed lyme patients and their doctors. Seems their words and actions don't match.

"It is becoming increasingly easy to gather overwhelming amounts of biological, clinical, and administrative data about patients, and to identify differences between the normal and pathologic state of organs, tissues, cells, and molecules within patients. What is becoming increasingly difficult is discerning which of those differences are important. Ultimately, it is the changes occurring in the patient's well-being and clinical parameters that will instruct us about what is important."

Seems some of them can collect information but don't have the slightest idea what to do with it, and don't really care about patients at all.

The first part of the speech describes their cushy life and good paying jobs. Those things should be taken away from so called professionals who consign a whole group of people with a serious infectious disease to the wastebasket.

Camp Other said...

There's a lot I could say about this. Starting with the statement, "if you only did not read the internet everything would be fine", it should be noted that it is pretty much BS that chronic Lyme disease was a disease created by the Internet. Why? Because in 1992, there were already over 100 Lyme disease support groups in the US, and most of them were formed out of the need for patients to meet IN PERSON to discuss their persisting symptoms and how to deal with them. In 1992, most people did not have access to the internet, and as it was back then, the internet was very basic and had only a handful of sites; most of what was thought of as being the internet back then was text-based and accessed using a UNIX shell account.

So, it is total nonsense to think chronic Lyme disease is a disease which was invented by the internet. The problem of persisting symptoms caused by Lyme disease (and its coinfections) is older than that, and older than the discovery of Borrelia burgdoferi found in Shelter Island ticks. People were coming down sick with Lyme disease before that name was ever coined, and sick with persisting symptoms after a tick bite before anyone was certain Borrelia burgdorferi had any relationship to their illness.

Camp Other said...

Regarding the bulk of the content of your post, yes, it is a serious problem that the "Lyme Wars" have become so polarized - and worse, it punishes patients in the process.

I think that parts of the media are to blame or at least contribute to the war, because various newspapers and journals emphasize the ILADS vs. IDSA position statements and accusations of conflicts of interest they fling towards each other.

And hey, we know why they do it: It sells papers. Never mind that it does nothing to help patients or teach the public about what's really happening in Lyme disease research. Educating people would just not sell so well.

But seriously, to fix the situation at least somewhat, the emphasis in the media instead needs to be on the science itself and what microbiologists are learning in the field - especially what no one knows about Borrelia burgdorferi s.l. and Borrelia spp., and has yet to be answered. Both "sides" engage in speculation about what has yet to be answered, thinking they already have the answers - when it's clear not enough money is being invested in research which would eventually give us the data we need for those answers.

Trials and studies demonstrate at least some subset of patients improve in terms of cognition and fatigue when more antibiotics are given - but when antibiotics are stopped, patients begin to experience a decline and worsen. Studies by Barthold, Hodzic, and others point to persistent infection by Borrelia burgdorferi after antibiotics were given - in animal models, but some point to those as having potential to also explain what happens in people.

What really needs to happen is to not only have solid evidence that what happens in these animal models happens in people - but research which demonstrates that we have an effective way of stopping the resurgence of Borrelia burgdorferi which Hodzic et al has written about in this just published, open access paper: Resurgence of Persisting Non-Cultivable Borrelia burgdorferi following Antibiotic Treatment in Mice.

The media needs to start focusing on what is actually happening in the world of microbiological research regarding Borrelia, and stop focusing on the IDSA vs. ILADS debate. It needs to look at independent data and independent research from scientists who cannot be as easily labeled with "conflicts of interest" and "potential pseudoscience" tags, however valid or invalid those tags are.

We need a tie-breaker, and we needed it years ago. Otherwise, the polarization continues, and patients like me have gotten caught in the middle, where our insurance companies don't pick up the bill for treatment, where much of the medical profession ignores our history of tickborne infection, and where conspiracy theorists get more negative attention while the average Joe is suffering and just trying to get by - let alone slowly reclaiming or rebuilding the life which was taken away by disease.

We cannot be ignored and written off forever. Patients and the actual science need to be empowered, given the time and attention by the media, the medical profession at large, and society as a whole.

lymie said...

When it is said patients are caught in the middle of the lyme wars, what does this mean? Does not seem to be an accurate statement because the patients and the few doctors who will treat them adequately are on one side. The other side consists of those who aid and abet the malpractice of diagnosis failures and treatment withholding. There is no middle ground.

Camp Other said...

lymie said:

"When it is said patients are caught in the middle of the lyme wars, what does this mean? Does not seem to be an accurate statement because the patients and the few doctors who will treat them adequately are on one side. The other side consists of those who aid and abet the malpractice of diagnosis failures and treatment withholding. There is no middle ground."

Patients are caught in the middle of a media war about what chronic Lyme disease is and isn't - the focus isn't so much on the patients and finding better treatment for them, promoting research and getting funding - it's about IDSA's position versus ILADS position more often than not.

The focus by the media - and all mainstream medical professionals as well - needs to be on the patients and their needs, and not whether I should have had 2-3 weeks worth of antibiotics or 3 years.

If I am improving on antibiotics, then the media and the medical world needs to take my word for it. Family doctors, specialists, and physical therapists should begin tracking patients' progress in observable ways while they are on longer term antibiotics - rather than deny their reality.

If the treatment is helping, then it's helping. Why is this questioned? It shouldn't be. Instead, it should be recorded, examined, and studied.

Not just by the LLMDs who treat patients but the medical community as a whole. If Dr. Brian Fallon over at Columbia points out that a solid percentage of patients improve with more antibiotics - and that data is reflected in clinical studies - then who is to argue with those who report their own improvement? It should be a given that some people improve with more. More medical professionals need to understand this and absorb it.

Conversely, if additional treatment isn't helping someone, then they need some kind of help and perhaps antibiotics alone aren't enough or something else is needed.

All of these patients are also caught in the middle of the Lyme wars because not enough money is going towards research to help them. Research to help come up with better tests to more accurately diagnose early cases, including those who never get an EM rash. Help come up with more effective treatments for those diagnosed late. Help come up with even an experimental treatment that's safe for those who still suffer who have already tried everything else they could try.

As it stands, it's over 20 yrs of the same crap, pretty much, of arguing over whether or not I and others have had a persistent infection. Enough already. Do something to help the patients is what I say, and focus on that.

the proprietor said...

I have many problems with the IDSA /"conventional medicine" mentality but will only mention one of them: the practice of naming and cataloguing symptoms rather than identifying and naming causes. Borrelia is a causative agent. "Fibromyalgia" is only a vague description of a symptom. The two diagnoses are not equal; in fact, from my lay point of view, the latter is not a useful or informative diagnosis at all because it does not point to a cause or toward a successful treatment.

the proprietor said...

"if you only did not read the internet everything would be fine"

Sounds like the ID dr who saw me and wanted me to have anything but Lyme. WhenI insisted on a Lyme test -- having tried to establish, I have had all the symptoms and i've had at least five tick bites -- she came back with remarks like "have you been reading the Internet?" and, "You know, you really should go to medical school" (said condescendingly).

Barely interested in symptom history. Barely curious when I related the five known tick bites. Wanted to maintain control, threatened by a patient who actually knew something. (Well I'm the one suffering with this for ten years; i should know something.) She wanted me to have lupus, sarcoidosis, Reiter's ... I persisted, telling her I'd done my homework and that the symptoms match Lyme exactly -- so why not test for it?

She did relent, sending for a Generic "Lyme serology" but, as I was only to find out after the fact, that means the worthless EIA screen from a Wal Mart type lab. Took three weeks to see the doc to tell me results. Took another week to actually receive an actual lab report and figure out it was indeed an EIA. So, I've got a worthless puece of paper, i've wasted money and an entire month, and I've only gotten sicker in the meantime.