2 New Lyme Disease Detection Test For All Stages Of Infection

For all those observing today: Happy Carl Sagan Day! For everyone else: Happy New Lyme Test Day! I say this because today a new blood test for the detection of all stages of Lyme disease has been launched.

In a press release, Boulder Diagnostics reported the European market launch of the CE marked SpiroFind in vitro diagnostic test for the detection of active Lyme Borreliosis. The makers of the novel SpiroFind test claim it can detect active Lyme Borreliosis through all stages of disease from early disease to late and persistent manifestation.

The test is based on measuring the cellular immune response to a specific challenge with the Borrelia organism. The effectiveness of the SpiroFind test was confirmed in a clinical study at the Radboud University* Nijmegen Medical Centre, which is submitted for peer-reviewed publication and for presentation at the ECCMID conference in Berlin, Germany in April, 2013.

“We are proud to offer this important new tool for the correct diagnosis of Lyme disease”, comments Dr. Wolfgang Pieken, CEO of Boulder Diagnostics Inc., and adds “the SpiroFind test is the first method to query the trained immunity to Borrelia infection as a signal for active disease”.

“At our clinical laboratory in Mellrichstadt, Germany, we now accept whole blood samples for testing by the SpiroFind method,” states Dr. Anton Waldherr, laboratory physician of Boulder Diagnostics Europe GmbH.

Professor Leo Joosten of Raboud University has been collaborating with Boulder Diagnostics and has worked on a project by Oosten et al which may have shaped the design of this test, "The interaction between NOD2-autophagy pathway and inflammasome activation determines the chronicity of Lyme arthritis" - see this paper's full text on Pubmed. The reason why some patients may develop persisting symptoms is because of a defect in their immune system.

Looking at Dr. Joosten's long list of publications on immune factors involved in infection, one can see that he has accomplished a lot of research on cytokines, Toll-like receptors (TLRs), and biomarkers of infection and inflammation.

It also should be noted here that Raboud University has also been involved in clinical studies on the use of long term antibiotic treatment for chronic Lyme disease as the sponsor of the Persistent Lyme Empiric Antibiotic Study Europe (PLEASE) - perhaps subjects of this study were also used to help assess this new test?


Links:

• The 23rd European Congress of Clinical Microbiology and Infectious Diseases - 2013
• Recognition of Borrelia burgdorferi by NOD2 is central for the induction of an inflammatory reaction.
• Related research news in Dutch: http://www.reumafonds.nl/informatie-voor-doelgroepen/patienten/onderzoek/overig
• Persistent Lyme Empiric Antibiotic Study Europe

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0 Rant: Can The IDSA Meet Lyme Disease Patients Halfway?

A background story for this rant is in order: The following is a rant from Lymenet Europe in response to one member's comment that I blame the IDSA for dysfunction when it comes to the quality of communications between the IDSA and patients and advocates, and don't place enough responsibility for that dysfunction on patients and advocates instead.

I disagree with this assertion. I'm not looking at blame. I'm looking at accountability. And I think both "sides" of this conflict are responsible for letting things get to the point where they are now.

All I know as a patient is that I'm looking at over twenty years of the conflict over causation for my persisting symptoms and even if that's not resolved to the degree that everyone would like - I want greater acknowledgement of my condition by the IDSA and medical community as a whole.

I'm not looking for a sign that the IDSA will change everything they do to fulfill all chronic Lyme disease patients' wishes. That isn't what this is about and I don't think it's something that is realistically achievable at this point in time.

This is about moving beyond awareness to acknowledgement that people with persisting symptoms can have a range of severity in their symptoms and be affected by them anywhere from minimally to profoundly.

This is about being taken seriously, regardless of what causes my persisting symptoms after having contracted Lyme disease. This is about having the medical community as a whole not write off symptoms as being psychosomatic in nature. This is, in a nutshell, about respect...

---

Camp Other wrote:

"My issue is with the quality of interactions they have had with advocacy groups and patients, and their inability to provide education, outreach, support,and research that helps those of us with persisting symptoms."


Bagge wrote:

"It seems you are blaming them for the dysfunction, and not placing adequate responsibility onto the activists. I'll leave it at that. It would be an inappropriate use of this forum for me to comment further as to my opinion on activist antics and the degree to which their specific actions are directly endangering and exploiting patients. If I had the means, I'd write a Lancet article about it so as to warn the public about the dangers."

Camp Other wrote:

Bagge, I'm not blaming anyone. I am venting my frustration to some degree, and it is not about any one "side". It's about the situation and how this conflict over causation has gone on for a long time now.

When I hear you discuss chronic Lyme disease, your focus is very much on pseudoscience. And doctors who you want to condemn for their actions, whether its unfounded treatments or egregious behavior. But I hear very little from you on how best to serve the needs of patients suffering with persisting symptoms after contracting Lyme disease. So after you have warned the public to the degree that you find necessary and make the parties accountable that you think should be accountable, what's next?

I don't know who, ultimately, could be responsible for creating what I'd call détente, but it would be refreshing to see. I think one sign of it was when patients protested the IDSA conference in San Diego and instead of getting called hypochondriacs and crazy, some conference participants came up to them and asked them questions about why they were there. Polite exchanges, and no one got their head ripped off from what I've heard.

Not all activists and patients are frothing at the mouth and posting conspiracy theories daily and harassing the IDSA and its doctors. We might be angry, but we have reasons to be and I think it's reasonable to request that those reasons be addressed and that there be a dialog between Lyme disease patients and the medical community, including the IDSA.

It used to be that Lyme disease patients were welcome at conferences where different infectious disease specialists would discuss their research on Lyme disease and patients could ask them questions - but that changed. I had read somewhere at some point that this practice stopped some time in the 1990's when some researchers wanted to discuss the issue of persistent infection and their papers were rejected for presentation - but later were accepted after some amount of pressure on the IDSA from patients and support groups. The full story on what happened is not clear to me, though, and I think the only online accounting of it I read has been removed (The old LDF site? Not certain.).

I think some essential rift in the social fabric may have been torn there, if that's what happened. I would like to hear someone else's story on how the "sides" unfolded. I don't know how many people know what happened and which key events took place that led to the development of "sides". I don't know the whole story myself.

I wonder why Chronic Lyme Disease is different, because when it comes to other illnesses including rare and hard to treat ones, in a number of cases patients have closer relationships to those researchers and clinical doctors who are working on their disease. In Lyme, we don't have that relationship in a number of ways - though we do have researchers like Dr. Luft and Dr. Norris who will attend Columbia Lyme disease conferences and present their research which is very much appreciated by me. But it's not a broader scope conference such as the IOM workshop held in 2010. That was a rare, one time event.

But getting back to this part of what I said: "inability to provide education, outreach, support, and research that helps those of us with persisting symptoms."

I guess my thoughts on that when I wrote it is that I don't have the kind of relationship as a patient with different scientific institutions that, say, some patients for other conditions have with researchers at the NIH-NIAID for theirs. And I see that, while as a patient I can be affiliated with Lyme disease advocacy organizations and groups such as the Lyme Research Alliance or a member of my local Lyme disease patient support group where we share tips and discuss the major impact being ill has had on our lives - there isn't really this sense of being a person with my condition which is integrated into the mainstream medical model somehow...

Basically, either I get my support and have a voice with Lyme disease advocacy groups and other patients - or I don't get it. And this is true for a lot of patients. We have each other, but we don't have the back of the mainstream medical community the way that someone with, say, cancer has or someone with Chagas disease. These are recognized conditions which are complicated and not well understood, have a major impact on people, and family doctors try to work with patients with these conditions.

But say you have chronic Lyme disease, and because there is no acceptance of this condition from much of the mainstream, you get looked at oddly because doctors have read from the IDSA and other institutions that it doesn't exist... Yet, just the same, I am not well, and not at my pre-infection baseline for health, and if there IS permanent damage due to having been infected, then that needs to be taken into consideration and worked with as a doctor.

Problem is, it isn't by most doctors. I'm probably lucky I have one doctor who is willing to consider that having a history of Lyme disease infection may have affected my health in a number of ways. Not everyone is that lucky.

Because patients in my situation do not have the back of much of the mainstream medical community, we are isolated and turn to our support groups, advocacy orgs, and LLMDs for support and validation. And why go somewhere else where people don't take you seriously? You don't. You stay as far away from it as you can.

As a patient, the only other choice that you have is to totally back away from support groups, advocacy orgs, and LLMDs and avoid all doctors and basically try to manage life on your own the best you can. And either choice is isolating, in its own way.

And let's look what is happening from the perspective of a patient:

On the one hand, the IDSA guidelines which are supposed to be used by doctors to guide them in treatment state that there is no entity called chronic Lyme disease but that some patients have post treatment symptoms which are described as "the aches and pains of daily living" (which is considered minor, one-can-live-with-it pain) when, on the other hand, the Klempner study discusses patients enrolled who at their most severe are as disabled as someone with congestive heart failure.

When looking at that description, those who are the most disabled after contracting Lyme disease and have persisting symptoms after initial treatment are going to be upset, because that statement in the guidelines minimizes their pain. It doesn't even begin to describe the degree of dysfunction some of them are experiencing. It sure as hell would not have described my symptoms in the two years after infection began, and at times, it would not describe my symptoms now.

So to patients, it's minimizing, and gives all doctors relying on those guidelines the idea that our problems can be shrugged off and we can function with them. A lot of us can't function (or at least do not function very well), though, so I think that if the IDSA and other medical organizations would state in a professional manner in the next guidelines review that there is a range of symptom severity after initial treatment in those patients who do not completely recover that would at least reduce some of the anger.

"The aches and pains of daily living" phrase has to go, regardless of whatever problems were found in the population at large over time. That kind of comparison is like saying "let's compare one sick person to another sick person". It's not useful, and from a scientific perspective, it is more accurate to describe the patients' symptoms in terms of how they are limiting mobility and functionality and quality of life measures, so why not do that instead? That would more accurately characterize our problems without being dismissive.

I am aware that the IDSA is, in all likelihood not going to change their guidelines to designate longer term antibiotic treatment courses as Lyme disease patients and advocacy groups would like to see them do. That is unlikely to happen unless certain postulates of Koch's are met regarding Borrelia burgdorferi. But in the meantime, can't something be done to at least acknowledge the range of severity of symptoms and QOL issues patients have? Can any kind of suggested safe and effective treatment be included (one reason I wished something like Low Dose Naltrexone could be studied would be to include it here) that helps patients? There is, at present, NOTHING.

And then there's the issue of family doctors and urgent care doctors not even knowing how to treat EARLY ACUTE Lyme disease. Before we even get to the issue of whether or not Lyme disease can be a persistent infection, it seems so many patients have had an encounter with a doctor who didn't even know how to properly apply existing IDSA guidelines to patients.

Patients go to family doctors and urgent care doctors FIRST, not an infectious disease doctor, and not usually an LLMD, either. Some patients see a doctor for a tickbite and have no insurance, and could not afford to see either an infectious disease specialist or an LLMD, when it comes down to it.

And there are many, many stories of patients seeing family doctors or urgent care doctors where they either they misdiagnose the rash, or they test too early so the patient's test is predictably negative,or they see a rash but wait for test results weeks later to go ahead with treatment, or they do not consider coinfections in the percentage who do get them. That's just a few examples. And then they get disseminated infection later - if not late stage - when it's more difficult to effectively treat the infection.

Based on experiences like these, from the patients' perspective, a certain percentage of us have lost some faith in a lot of doctors and would rather turn our health care over to LLMDs and alternative practitioners. We feel the system failed us, and if our symptoms are serious, then the system seriously failed us. That's how it is.

If the IDSA wanted to make life better for everyone, is there anything they could do to ensure doctors had more training to make early clinical diagnoses of Lyme disease and other tickborne infections? Maybe they are already doing this training, but a refresher is needed from time to time. From what I know about med school, tickborne illnesses are covered very quickly and not in great depth. There is a LOT to learn and remember.

I can't help but think that there has to be some way to avoid becoming another member of the controversial disease club I'm in and to avoid paying its horrible annual dues. I keep thinking my situation could have been prevented if more family doctors and urgent care doctors were better trained to handle acute cases of tickborne diseases. So if the IDSA did more such training, put educational posters on clinic walls as reminders, and let patients know that they were working on improving diagnosis and treatment in the typical clinical scenario and not one where you have more specialized tests and tools to use as an academic physician, then some patients might be less angry at the IDSA and say, "Thank you for doing this". They might also add, "Why didn't you do it sooner?", but that's how it goes.

By and large, the IDSA could do more to at least explain where they are coming from by creating an informative web site explaining what research they are doing, how they have come to the conclusion that even if they do not have enough evidence to support that patients have a persisting infection after initial treatment - they do have some evidence that supports an autoimmune hypothesis, and allow some method of allowing patients to ask questions online about this hypothesis. Put it all in one place. And also: educate medical professionals and society about the range of severity of symptoms in patients with persisting symptoms. Take the condition seriously, even if patient advocates and the IDSA disagree as to the cause of those symptoms.

It is probably not going to be a site that all Lyme patients will use, but it would make it clear what the IDSA's viewpoint is without anyone else misinterpreting their view. The IDSA could expect to see some very vocal detractors because of the controversy. At the same time, it could be informative if patients were given a chance to air their complaints and also ask questions so the IDSA knows what is on their minds. Just like this board - as contentious as it can get - there can be rules about threats and harassment in response to articles posted and those who violate them can be removed.

I get the impression, though, that part of the problem is that when it comes to the "sides", no one wants to change anything because it would be viewed as a concession, and would become a slippery slope.

I don't think it has to be that way, though, because in my opinion, there is a reasonable middle ground which could be found which offers patients more acknowledgment for the serious nature of their condition and support without labeling based on its cause on one side - and on the other, opens the floor to some dialog from patients who are not going to be hostile to the IDSA on the other.

But when you're looking at over twenty years of Lyme disease patient history, from the perspective of many patients and advocacy groups, they have lost trust and faith in IDSA. These changes would help, I think, in lowering the volume of anger that is out there - but it would not remove it.

There is a lot of anger. A lot of frustration. I share in it, and yet, I'm not always certain where my anger is directed. It changes:

Am I angry at my ex-family doctor who misdiagnosed me and did not treat me? Yes. Am I angry that the current guidelines seem to minimize my experience and discount my condition, and don't even recognize their alternative, PLDS, as a legitimate diagnosis, for those who have developed some autoimmune disorder? Yes. Am I angry that this makes it harder for patients to file for disability with a diagnosis like chronic Lyme disease? Yes. Am I angry that IV antibiotic treatment would not be covered by insurance even when I only wanted to try it for no more than one month? Yes. Am I angry that mainstream doctors in the ER have dismissed my medical history in making medical decisions about my care? Yes. Am I angry that a few ER doctors have labeled my condition somatic when they have never seen my entire medical record? Yes. Am I angry that, while I have had a lot of antibiotics and they have helped, now they do not seem to help with my remaining symptoms? Yes. Am I angry that there isn't a new treatment that is proven to help with remaining symptoms? Yes. Am I angry I haven't been able to work in years and have lost income and more medical debt? Yes. And it goes on.

So as a patient, I have a number of things to be angry about, and my anger is probably best described at being aimed at a lack of societal support and acknowledgment for this condition, as well as lack of the same from the medical profession, and anger that more research hasn't been done that puts an end to the controversy and/or comes up with a treatment that works well enough that I can work again and can live with it.

There are a number of patients who feel as I do and are in the same situation I find myself in. We might periodically try antibiotics again or herbs and acupuncture, just to see if it makes a difference. And we know that in the future research might find an answer for us...

But in the meantime...In the meantime, what can we do to make life better?

If both "sides" of this debate could engage the medical community at large in answering that question, and have compassion for patients and recognize we do have nerve damage, musculoskeletal pain, and moderate to severe fatigue (for example) due to having had Lyme disease - rather than labeling us with some psychosomatic problem - it would be a meaningful step.

And if the controversy between the "sides" will not end, I've always thought a third party could be established. On my own site I've advocated for a middle ground, a third independent party to somehow step outside the struggle and just say, "This is how it is. This is what we know about Borrelia. This is what we don't know about Borrelia. Any questions?" and let someone who is not invested in the struggle financially or ideologically become a source of reliable information from what would be viewed as a neutral platform.

But in the meantime, the "sides" is what I have to live with.

What do you think would have to happen to better meet the needs of patients, Bagge, now that I've outlined what makes me angry?

Imagine you are a patient, living with daily pain and dysfunction, and you haven't been able to work since you became ill with persisting symptoms after contracting Lyme disease? What would you do, and what would your expectations be of the medical community and society in response to your condition?

---

Edited to include:

I just received information about this call to action ILADS is making for patients to comment asap on the US Health & Human Services Department Healthy People 2020 campaign.

Link here: ILADS Healthy People 2020 Campaign

It's something I can support, and I wish that this announcement had been made sooner as the deadline is today, November 7.

The overall announcement is as follows:

"ILADS has submitted four objectives addressing chronic manifestations of Lyme disease to the U.S. Department of Health and Human Services (HHS) for inclusion in their Healthy People 2020. Healthy People 2020 is an ambitious, yet achievable, 10-year agenda that could improve the Nation’s health for individuals with Lyme disease. It is important that your voice be heard.

ILADS Lyme Disease Objectives:

1. Increase the proportion of persons with acute disease who are timely and accurately diagnosed.

2. Decrease the proportion of persons with chronic manifestations of Lyme disease.

3. Increase the proportion of persons with chronic manifestations of LD who are timely and accurately diagnosed.

4. Reduce the number of persons with a history of Lyme disease with subjective symptoms severe enough to result in a substantial reduction in previous levels of occupational, educational, social, or personal activities."

These all sound like reasonable goals. Goals everyone can back, no matter what causes my symptoms.

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2 On Tick Spit, Immune Evasion, and Round Bodies

There has been much interest in the relationship between tick saliva and the immune response to Borrelia burgdorferi in their host mammals - both animal and human. Recently, the following paper, "Neutrophil Extracellular Traps Entrap and Kill Borrelia burgdorferi Sensu Stricto Spirochetes and Are Not Affected by Ixodes ricinus Tick Saliva", from the Journal of Immunology added to data on how tick saliva affects the immune response at the bite site in a murine model, and may also explain what happens in humans bitten by Ixodes ricinus ticks.

J Immunol. 2012 Oct 29. [Epub ahead of print]

Neutrophil Extracellular Traps Entrap and Kill Borrelia burgdorferi Sensu Stricto Spirochetes and Are Not Affected by Ixodes ricinus Tick Saliva.

Menten-Dedoyart C, Faccinetto C, Golovchenko M, Dupiereux I, Van Lerberghe PB, Dubois S, Desmet C, Elmoualij B, Baron F, Rudenko N, Oury C, Heinen E, Couvreur B.
Laboratory of Human Histology-Centre de Recherche sur les Protéines Prion, University of Liège, B-4000 Liège, Belgium;

Abstract

Lyme disease is caused by spirochetes of the Borrelia burgdorferi sensu lato complex. They are transmitted mainly by Ixodes ricinus ticks. After a few hours of infestation, neutrophils massively infiltrate the bite site. They can kill Borrelia via phagocytosis, oxidative burst, and hydrolytic enzymes. However, factors in tick saliva promote propagation of the bacteria in the host even in the presence of a large number of neutrophils.

The neutrophil extracellular trap (NET) consists of the extrusion of the neutrophil's own DNA, forming traps that can retain and kill bacteria. The production of reactive oxygen species is apparently associated with the onset of NETs (NETosis).

In this article, we:

• Describe NET formation at the tick bite site in vivo in mice.
• Show that Borrelia burgdorferi sensu stricto spirochetes become trapped and killed by NETs in humans and that the bacteria do not seem to release significant nucleases to evade this process.
• Show that saliva from I. ricinus did not affect NET formation by human neutrophils or its stability. However, it greatly decreased neutrophil reactive oxygen species production, suggesting that a strong decrease of hydrogen peroxide does not affect NET formation.
• Demonstrate that round bodies trapped in NETs were observed, some of them staining as live bacteria.

This observation could help contribute to a better understanding of the early steps of Borrelia invasion and erythema migrans formation after tick bite.

Source: http://www.ncbi.nlm.nih.gov/pubmed/23109724

Comments:

Previous research on Ixodes scapularis and Ixodes ricinus ticks has shown that these ticks' saliva proteins have a negative effect on neutrophils, such as:

Use of CFSE staining of borreliae in studies on the interaction between borreliae and human neutrophils
Inhibition of Neutrophil Function by Two Tick Salivary Proteins
Tick Saliva Reduces Adherence and Area of Human Neutrophils
Horizon Press: Vector-Host Interactions In Disease Transmission

In this new research, there is evidence that even if neutrophils do not kill Borrelia burgdorferi spirochetes from I. ricinus ticks - that NETS stand a chance of killing them instead. And that when neutrophils form NETS, spirochetes found trapped in them often form round bodies which are alive.

What are NETS?

To quote "Neutrophil extracellular traps: Is immunity the second function of chromatin?":

"Neutrophil extracellular traps (NETs) are made of processed chromatin bound to granular and selected cytoplasmic proteins. NETs are released by white blood cells called neutrophils, maybe as a last resort, to control microbial infections. This release of chromatin is the result of a unique form of cell death, dubbed “NETosis.”"

At the above link, readers may watch a video of NETS being formed from neutrophils.

It is not known from this abstract which interactions between spirochetes and human cells took place or if the interaction in humans was extrapolated from a murine model. A reading of the full text is necessary for greater understanding.

More on neutrophil extracellular traps:
http://en.wikipedia.org/wiki/Neutrophil_extracellular_traps
http://jcb.rupress.org/content/198/5/773.full

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0 Symbiotic Spirochetes In Animal Models

Recently, I noticed this intriguing item in the news that is of interest to many medical professionals around the world who are struggling to care for patients' difficult to eradicate C. difficile infections: A recent murine study[1] provided evidence that a simple mixture of six phylogenetically diverse intestinal bacteria - including novel species - can re-establish a health-associated microbiota and clear C. difficile infection from mice.

With this outcome, it's possible that medical professionals will no longer apply the treatment of last resort - fecal transplants - to save human patients' lives. Instead, all patients with raging C. difficile infections will have to do is swallow a pill or consume food that contains the strains of bacteria needed to reverse dysbiosis and rebalance the microbiota in their stomachs so that C. difficile is no longer a threat.

Over time, researchers are uncovering the complicated dynamic between different microorganisms which live inside the human gut. Also, they are refining their understanding of the dynamic between different microorganisms inside animals with increasing speed as more invasive studies can be completed in animals than can be easily completed in humans. Among these studies are those on the relationship between spirochetes and other microorganisms found in ruminants such as cattle and sheep, termites, and molluscs.

Symbiotic Spirochetes In Termites
 

Microscopic image of Mixotricha paradoxa
covered with thousands of Treponema spirochetes

One interesting and complex symbiotic relationship involving spirochetes is found within termites' guts. Spirochetes are one of the most abundant bacteria present in the gut fluid of termites, and the symbiotic relationship between various microbes in termites of all kinds actually predates the evolution of termites from their wood-feeding roach ancestors over 120 million years ago [2].

Most termites have spirochetes which are free-living in the gut fluid, but they have also been found as ectosymbionts attached to protists inside termite guts. Mixotricha paradoxa is protozoa found inside the gut of the Australian termite species, Mastotermes darwiniensis. It was originally thought the long tiny hair-like structures covering the length of its body were short cilia - outgrowths from the protozoa itself. However, upon closer examination years later, scientists Cleveland and Grimstone[3] discovered these were not cilia but a dense carpet of Treponema spirochetes - spirochetes which help propel Mixotricha paradoxa forward while it uses its own anterior flagella to steer in the right direction. How it coordinates this movement is unknown - it is surmised that they automatically synchronize due to their proximity.

These spirochetes not only help Mixotricha paradoxa move forward, though. One thing Mixotricha paradoxa does to help its host, the termite, do is help break down cellulose into sugars and then hydrogen, acetate, and carbon dioxide from the wood it eats. From there, what the Treponema spirochetes are predicted to do is oxidize the acetate which was produced and use it to support 100% of the termite's respiration requirements.[4]

What makes this symbiosis even more complex is that it doesn't stop there. No, not only does Mixotricha paradoxa have a Treponema spirochete helping it survive - but it also has three more bacterial species onboard: A lot of rod-shaped bacteria related to Bacteroides live on its surface, and is suspected to help breakdown cellulose as it sits alongside the Treponema spirochetes; a spherical form of bacteria lives inside Mixotricha which is hypothesized to act as mitochondria for the protozoa (as Mixotricha does not have its own mitochondria); a large spirochete attributed to the genus Canaleparolina.[5]

Not much is known about these three bacterial species' lives in Mixotricha paradoxa, and more research is needed. The most recent research on Mixotricha paradoxa adds to this complex symbiotic dynamic, as it has been discovered that not all glycolytic activities in Mixotricha paradoxa are produced by its microorganisms - cellulases have been detected in the salivary glands of Mastotermes darwiniensis - the termite itself.[6]

Symbiotic Spirochetes In Ruminants

The bovine or cow stomach has a wide variety of organisms inside it - such as fungi, bacteria, archaea, protista, and viruses. All these organisms help break down food, especially plant matter and in particular, cellulose. And like the Mixotricha paradoxa inside the Australian termite, Mastotermes darwiniensis, the organisms are all dependent on each other to some degree and use the byproducts of one another for their own benefit.

Cows - unlike people - have four stomach compartments to digest their food: the rumen, the reticulum, the omasum, and the abomasum. The rumen is the largest compartment, and it contains a huge number of different microbes. The reticulum is responsible for creating cud and trapping indigestible substances like rocks or nails - and unfortunately, can be subject to more injury than the other compartments. The omasum sends large substances to the rumen and reticulum while allowing smaller substances to pass on to the abomasum. And the abomasum is very similar to a human stomach, as it produces stomach acids and enzymes to break down proteins before sending the result to the small intestine.

While the most common bacteria in the bovine stomach are gram-positive cocci and rods, a smaller percentage of their population are spirochetes which play a role in ruminant digestion. Organisms such as Treponema bryantii, a saccharolytic spirochete, enhances the breakdown of cellulose while cellulolytic bacteria of different species break down plant cell walls into soluble sugars.

Two interesting passages from the publication, Interspecies bacterial interactions in biofilms, by James, Beaudette, and Costerton[7], highlight the relationship between Treponema bryantii and other microbes studied in vitro from bovine rumen:

"Observations of biofilms on cellulose particles from the rumen revealed cellulolytic as well as noncellulolytic bacteria enmeshed in the exopolysaccharide matrix of the biofilm. Addition of a noncellulolytic species, Treponema bryantii, to cultures of a cellulolytic species, Fibrobacter succinogenes or Ruminococcus albus, resulted in an enhanced rate of cellulose degradation. Presumably, T. bryantii utilized the hydrolytic products (eg, glucose or cellobiose) from the cellulolytic bacteria which may repress and/or inhibit the cellulolytic enzymes."

"...Microscopy of biofilms formed during protocooperative cellulose digestion by R. flavefaciens and T. bryantii revealed that cellulolytic R. flavefaciens cells were attached directly to cellulose particles, while the spirochete, T. bryantii, was located in the upper biofilm layers. This spatial arrangement and the mobility of spirochetes in viscous environments suggest that this organism may move through the biofilm, scavenging the products of the cellulolytic bacteria."

The first study of Treponema bryantii in 1980, Treponema bryantii sp. nov., a rumen spirochete that interacts with cellulolytic bacteria[8], offers more specifics in its abstract as to its biological requirements:

"...When cocultured in these media the spirochete used, as fermentable substrates, soluble sugars released from cellulose by the cellulolytic bacterium. In cellulose-containing agar medium the spirochete enhanced cellulose breakdown by the Bacteroides succinogenes strain. Electron microscopy showed that the helical spirochete cells possessed an outer sheath, a protoplasmic cylinder, and two periplasmic fibrils. Under a CO2 atmosphere, in a reduced medium containing inorganic salts, rumen fluid, glucose, and NaHCO3, the spirochete grew to a final density of 1.9 X 10(9) cells/ml. Succinate, acetate, and formate were products of the fermentation of glucose by growing cells. CO2 (HCO3-), branched short-chain fatty acids, folic acid, biotin, niacinamide, thiamine, pyridoxal, and a carbohydrate were required for growth of the spirochete."

Spirochete Symbiosis In Molluscs

While so far there is no evidence molluscs harbor spirochetes which have symbiotic relationships with its host or other microorganisms, spirochetes which coexist peacefully within their host are worth noting.

Spirochetes from the genus Cristispira have been found inside more than 50 species of 22 families of marine bivalves and 3 freshwater bivalves. It has been shown to be a commensal organism living within molluscs and has not been shown to provide any benefit or disadvantage to molluscs such as Prince Edward Island oysters.

This past May, an interesting paper was published, Spirochetes in gastropods from Lake Baikal and North American freshwaters: new multi-family, multi-habitat host records[9].

The abstract states:

"We describe the first records of spirochetes in the gut of fourteen species of continental gastropods from a range of habitats and representing six families (Amnicolidae, Baicaliidae, Bithyniidae, Pyrgulidae, Lithoglyphidae and Benedictiidae). The bacteria were mainly found in the crystalline style sac, as has been reported in marine bivalves. The surveyed habitats include water bodies in North America and Eurasia, including deep water hydrothermal vent and gas hydrate zones in Lake Baikal. Spirochetes were present both in mature and young snails, but were not detected in embryos before hatching, indicating lateral transfer. The surveyed gastropods range in trophic strategy, including phyto-, detrito- and bacteriophagous grazers and filter feeders. Our results indicate that spirochetes are commensal in the surveyed gastropods with potential limited benefit and no detriment to the host animal. We suggest that the specialized internal habitat of the crystalline style sac in molluscs is likely to reveal unrecognized spirochete diversity that will shed new light on gastropod trophic ecology and spirochete diversity."

More research is needed to determine which limited benefits different spirochetes may provide for their hosts.

Looking at the symbiotic and commensal relationships between animals and spirochetes - or between spirochetes and other microbes - one has to wonder what kind of relationships different spirochetes have with us and microbes within us. Humans already play host to spirochetes which are considered commensal Treponema and unfortunate hosts to spirochetes which are pathogenic such as those which cause syphilis and Lyme disease (Borreliosis). But is there more to this story than is often told? Do these bacteria have deeper relationships?

References:

1) Trevor D. Lawley, Simon Clare, Alan W. Walker, Mark D. Stares, Thomas R. Connor, Claire Raisen, David Goulding, Roland Rad, Fernanda Schreiber, Cordelia Brandt, Laura J. Deakin, Derek J. Pickard, Sylvia H. Duncan, Harry J. Flint, Taane G. Clark, Julian Parkhill, Gordon Dougan. Targeted Restoration of the Intestinal Microbiota with a Simple, Defined Bacteriotherapy Resolves Relapsing Clostridium difficile Disease in Mice. PLoS Pathogens, 2012; 8 (10): e1002995 DOI: 10.1371/journal.ppat.1002995
2) Grimaldi, D. and Engel, MS. Evolution of the insects. 2005. Cambridge University Press, NewYork, NY.
3) Cleveland, L.R., and A.V. Grimstone. The fine structure of the flagellate Mixotricha paraodoxa and its associated micro-organisms. 1964. Society 159:668-686.
4) Leadbetter, J.R. Acotgenesis from H2 Plus CO2 by Spirochetes from Termite Guts. 1999. Science 283:686-689.
5) Brugerolle G. Devescovinid features, a remarkable surface cytoskeleton, and epibiotic bacteria revisited in Mixotricha paradoxa, a parabasalid flagellate. Protoplasma. 2004 Oct;224(1-2):49-59.
6) Konig, H., Li Li, Wenzel, M, Frohlich, J.  Bacterial Ectosymbionts which Confer Motility. p. 86 Molecular Basis of Symbiosis. 2006. Springer-Verlag.
7) G A James, L Beaudette and J W Costerton. Interspecies bacterial interactions in biofilms. Journal of Industrial Microbiology & Biotechnology. Volume 15, Number 4 (1995), 257-262, DOI: 10.1007/BF01569978
8) Stanton TB, and Canale-Parola E. Treponema bryantii sp. nov., a rumen spirochete that interacts with cellulolytic bacteria. Arch Microbiol. 1980 Sep;127(2):145-56.
9) Tatiana Sitnikova,Ellinor Michel, Yulia Tulupova, Igor Khanaev, Valentina Parfenova, Larisa Prozorova. Spirochetes in gastropods from Lake Baikal and North American freshwaters: new multi-family, multi-habitat host records. Symbiosis. May 2012, Volume 56, Issue 3, pp 103-110.

Additional Reading:
Xinning Zhang and Jared R. Leadbetter. Evidence for Cascades of Perturbation and Adaptation in the Metabolic Genes of Higher Termite Gut Symbionts. mBio vol 3. no.4 e00223-12. http://mbio.asm.org/content/3/4/e00223-12.full
Nordhoff M, Wieler LH.Berl Munch Tierarztl Wochenschr. 2005 Jan-Feb;118(1-2):24-36 .[Incidence and significance of treponemes in animals].[Article in German]

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4 Commentary: Slate's Article On Romney & Lyme Disease

It seems like over the past two weeks, every time I turned around, there's a new article about Mitt Romney and chronic Lyme disease. How much mileage from one topic can the media get? You would think by now they would have moved on, but today The Day decided it was going to post yet another rehashing about this subject.

Well, if they get to rehash, then so do I. I have some things to say in response to the Slate's article, "Why Is Romney Campaigning on Medical Quackery?", even though it's not the most recent in this set of offerings.

And again, I'd like to make one request of the media at large:

Can you please investigate more deeply the issue of people with persisting symptoms after delayed or initial antibiotic treatment for Lyme disease?

And not just spout out the same tired phrase that clinical trials to date have not shown that the use of long term antibiotics has been effective for the treatment of chronic Lyme disease (or what the CDC and other organizations call "Post Lyme Disease Syndrome")?

But I digress...

On to eviscerating the Slate...

"Let’s play doctor. A patient comes to you with joint pain, difficulty concentrating, anxiety, poor attention, and mood swings. You might run a series of tests to rule out a persistent infection or other disorder. If your patient lives in a tick- and Lyme-disease-infested area, you would be wise to test for the bacterium Borrelia burgdorferi and, if detected, prescribe a course of antibiotics. But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. If you are a good doctor, and you are, you might explore a diagnosis of depression, a disease that afflicts almost 10 percent of the population at any given time."

Okay, I'm going to respond to this with, "let's NOT play doctor", because it's not within our training and expertise to give medical advice if we are blogging or writing for online magazines and we are not doctors - or even if we are doctors, and have not actually seen the patient in question before making a diagnosis.

But as we are talking about some hypothetical case here - patient X - and not a real person, then I'm going to use patient X to discuss hypotheticals.

First, joint pain, difficulty concentrating, anxiety, poor attention, and mood swings can be indicative of any of a number of disorders. The doctor is correct to consider different diagnoses, and rule out or rule in anything which may be causing these symptoms. They can be related to some rheumatoid or autoimmune disorder, exposure to certain toxic substances, stress, immunological problems, and other conditions. Patient X may even have more than one condition which is producing these symptoms and need proper diagnosis and treatment.

I would not automatically leap to the conclusion that depression is the disease that is happening - and even so, depression can be a symptom of another underlying condition such as hypothyroidism, hormonal imbalance, or serious vitamin deficiency.

Let's reexamine this portion, and part of the succeeding paragraph:

"But suppose the tests come back negative and there is little evidence that your patient was bitten by a tick or was infected with the Lyme disease bacterium. [...] If you are a doctor who believes that the CDC and NIH have misrepresented carefully vetted clinical trial data about the diagnosis and treatment of Lyme disease, however, you might diagnose your patient with chronic Lyme disease and prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics."

First of all, is clinical trial data about the diagnosis and treatment of Lyme disease the only data on which a medical practitioner should base their diagnosis and treatment of tickborne diseases in a particular individual patient?

The problem is this soundbite doesn't even begin to offer an overview of why a medical practitioner would think that maybe - just maybe - someone with a negative test for Lyme disease might still have Lyme disease. Or how it is that diagnosing Lyme disease can be a difficult task at times for any doctor.

The words chosen that follow - "prescribe an intensive, long-term, side-effect-laden, mega-dose of antibiotics" - reflect the judgment of the writer on how people with Lyme disease are treated without the writer actually investigating which antibiotics are used at which dosage for how long, nor how long-term antibiotic treatment for Lyme disease compares with long-term antibiotic treatment for other conditions, nor even what happens to those who have Lyme disease who do not receive long-term antibiotic treatment.

The costs and benefits of antibiotic treatment in general are not weighed and shared, so all it can be is a negative description of this treatment without investigating the long term outcomes of case-by-case studies of those patients who are either receiving it or where such treatment has been withheld.

On to another part of the article...

"As a Slate story pointed out years ago, chronic Lyme disease—not the persistent effects of a long-term bacterial infection but a collection of mysterious symptoms—has powerful supporters. Advocates for the diagnosis tend to blame the medical establishment for not taking them seriously enough."

Here I have a problem with this description of the condition, because it's not reflecting reality.

No one seems to really understand entirely what chronic Lyme disease is and what causes it. No one.

The CDC and IDSA have said that Lyme disease cannot become a chronic and persisting infection after a certain minimum allotment of antibiotic treatment, and offer up the hypothesis that any symptoms beyond this treatment are a (potentially autoimmune) condition known as Post Lyme Disease Syndrome (PLDS). However, this is a hypothesis, and thus far there are no treatment trials which put this hypothesis to the test.

If this hypothesis is so strongly supported, then why are federally funded treatment trials currently being conducted which are about providing evidence for Lyme disease as a persisting infection? Why is there a study currently recruiting which is entitled, "Searching For Persistence In Infection In Lyme Disease"? And why has another study been conducted in Europe, known as the "Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)"?

This doesn't sound like the issue of what causes chronic Lyme disease's persisting symptoms is settled. If so, treatment trials which address this devastating autoimmune condition would outweigh clinical trials on Lyme disease. If one searches for clinical trials for treating Post Lyme Disease Syndrome, the total sum is zero.

To add to this, why is it that the researchers who completed the most recent research on persisting Lyme disease infection in non-human primates concluded this at the end of their recent publication, "Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection"?:

"Our studies do however offer proof of the principle that intact spirochetes can persist in an incidental host comparable to humans, following antibiotic therapy. Additionally, our experiments uncover residual antigen associated with inflammatory foci. Whether persistent spirochetes or spirochetal antigen can cause PTLDS remains unanswered."

That chronic Lyme disease is a mystery is true. That one can readily come to the conclusion that it is not a persistent infection under any circumstances, in any situation, has yet to be established - just as these symptoms being caused an autoimmune condition has yet to be established.

But the content of Slate's article and that of others is very negative about the hypothesis of persisting infection without any specific evidence to strongly back an alternative explanation - or refute the evidence provided in a study such as Embers et al, above.

To continue...

"In 2008, the attorney general of Connecticut investigated the Infectious Diseases Society of America, a 50-year-old organization with more than 9,000 physician and scientist members, for misrepresenting the science of Lyme disease. Not to be outdone, Virginia Gov. Bob McDonnell assembled a governor’s task force on Lyme disease. He appointed Michael Farris as its chair. Farris is a lawyer and the chancellor of Patrick Henry College, aka God’s Harvard, whose motto is “For Christ and for Liberty” and whose “Statement of Faith” holds that the “Bible in its entirety” is “inerrant.” The school isn’t known for its biology department"

You know, we can argue this one until the cows come home. I honestly am not too keen that politicians are getting involved with medical debates - even though I as a patient want more recognition for my condition and more research for it.

What I want is more recognition from the medical profession, and for there to be programs put in place to help those of us with chronic Lyme disease. And what I really want is for someone with an understanding of the disease who has researched it extensively - and has suffered with it long term themselves - to come forward and represent me and other patients; to work from a desire to find the truth about what is causing our symptoms.

I do not need to see another advisory board, appointed chair, or politician try to defend my condition without a more intimate and thorough understanding of it. And I definitely do not need to see my condition being used in a political free-for-all from any side, from any party or special interest group, in order to try to gain more votes.

I find Slate's use of pulling out an appointed chair who is not big on science and who oversees a college with a statement of faith which holds the Bible as being infallible as being a diversion from the issue at hand: the issue of whether or not Borrelia burgdorferi can be a persistent infection.

All we see is an obvious character to take issue with if one is on the side of science and skepticism and wants an easy target to use to rail against the chronic Lyme disease issue... Of course those who are scientifically minded and skeptics are not going to take the word of an evangelical young earth creationist as being one educated about Lyme disease.

On the other hand, if we take one governor and one evangelical chair out of the picture, who do we have left that could have been interviewed instead? How about some scientists, for example? What about Dr. John Aucott of John Hopkins University, Dr. Stephen Barthold of UC Davis, Dr. Monica Embers of Tulane University, Dr. Straubinger, Dr. Brian Fallon of Columbia University, and others who have been studying Borrelia burgdorferi? They have nothing to lose by being asked for their opinion, being neither in politics, nor making money directly off treating patients, or nor working directly for the IDSA. Why doesn't Slate ask them about their scientific opinion on the cause of chronic Lyme disease?

But Slate doesn't do this. Slate goes for low-hanging fruit to support its diatribe against chronic Lyme disease - with the primary goal of denigrating Romney's attempts to appeal to voter subgroups and to support their characterization of Romney as being anti-science.

The mistake Slate makes is in conflating Romney's anti-science leanings with chronic Lyme disease as a condition which does not have enough evidence to support it. The two topics are issues which deserve independent examination.

Onward and upward...

"But the task force seems to have bought into the conspiracy theory that the infectious disease establishment is maliciously interfering with proper treatment. It states: “There is no scientific basis for concluding that 30 days or less of antibiotics is sufficient treatment for every case of Lyme disease.” Again, tell it to the Centers for Disease Control and Prevention."

I am not one of those people who will sit here and spout conspiracy theories. Refer to my page, What To Expect Here, if you have any questions. But there is the issue of oversimplifying and dumbing down the issues involved with properly treating Lyme disease - which is exactly what this article is doing.

It is not true that every case of Lyme disease is sufficiently treated with 30 days or less of antibiotics. Most acute cases are sufficiently treated with 30 days or less, but even when looking at the IDSA's guidelines themselves, they state that up to 10% of all acute Lyme disease patients experience treatment failures. These patients must be retreated and investigated for presence of tickborne coinfections. Also, a certain percentage of patients will have Lyme arthritis, which even Allen Steere treats with two months of oral antibiotics - and if symptoms are still present, a third month of IV antibiotics as well.

I can offer a number of cases where IDSA infectious disease doctors themselves have given individual patients with Lyme disease more than 30 days of antibiotics without thinking too hard, but cannot do so in detail because it would violate HIPAA practices. But these patients are out there, and have been helped by more than 30 days of antibiotics by patients treated by the IDSA's own specialists.

To add to this, there are those outliers with late stage Lyme disease and chronic Lyme disease who do not respond as well to treatment as early acute cases do. These patients have not been studied anywhere nearly enough, in part because fewer cases in these categories are diagnosed - but also because these patients' conditions are not as well understood or always as easily diagnosed to begin with because the obvious, early acute symptoms like a bull's eye rash are missing.

The Slate article continues...

"Another treatment point is telling: “We received substantial testimony from lay witnesses that they had been successfully treated with long-term antibiotics.” Pro tip: the plural of anecdote is not data. Just because someone signed up to address a public portion of the task force meeting does not mean their understanding or explanation of their own medical care is accurate or relevant."

I've said before that I know that the plural of anecdote is not data. And I understand that someone's own experience of their own medical care is not admissible as treatment for everyone.

But then, I've never made the claim that it was, anywhere... I've only made the statement that I think it is possible some people might need longer courses of antibiotics than the guidelines suggest are needed. How long, I think depends on the patient and their condition (genetics, underlying conditions, coinfections, etc).

But that is not for me to judge. I'm not a doctor, and we're talking about individual cases here... If IDSA doctors have the clinical leeway to make decisions to treat individual patients with more than 30 days worth of antibiotics and have it be covered by insurance, well, so then do other doctors - including my own primary care physician and someone who calls themselves an LLMD. The keyword in the document they published, after all, is guidelines.

If that's not happening and insurers are not covering additional treatment for patients when doctors authorize it, then that's an issue that Slate and other publications should be investigating.

To continue...

"I don’t mean to make fun of people who are suffering from what they think is chronic Lyme disease. Their symptoms are real, and they deserve help. But giving them a phantom diagnosis and making them part of a crusade to bring truth to medicine just perpetuates the idea that the symptoms they describe must be part of a complex, classic disease."

Look, this is all fine and good to hold this opinion. However, consider that I don't see enough evidence supporting an alternative diagnosis. The CDC, as you've cited, mentions Post Lyme Disease Syndrome. And yet, this is just a hypothesis and it has yet to graduate to being theory.

Just because the outcome of three clinical trials for long term antibiotic treatment on some patients with chronic Lyme disease showed that continued treatment did not permanently alleviate symptoms once treatment stopped does not mean that there isn't a persistent infection present.

And if Post Lyme Disease Syndrome is a genuine condition, with what may very well be its own genuine biomarkers for it - then as its own separate disease complex, it requires its own research arm and treatment for it.

Now Slate, are you saying PLDS doesn't exist, either, and you're going to flake on this illness which has scientific evidence to back its existence and call it depression?

Of course - because the next thing out of Slate's mouth is this:

"It’s much more likely to be depression, and depression is treatable."

Here we go with the depression, again.

Funny you should say this. Because I have had episodic depression. And I will tell you: Episodic depression was a fucking walk in the park compared to Lyme disease.

There simply is no comparison between the two, other than, well, having Lyme disease has made me feel depressed because it totally changed my life and not for the better.

Why would someone who could work full time at a high paying salary who had lots of friends and opportunity to travel the world a lot give that up to stay at home on the sofa with constant headaches and fatigue and hardly see anyone or go anywhere? To be seriously broke and give up on one's dream of owning a home?

The Lyme disease made me depressed. I don't have depression here as a separate clinical entity all on its own.

And depression, in my experience, never gave me a tick bite, an EM rash, high fevers, swollen lymph nodes, visible joint swelling, paresthesias, and a stocking and glove pattern of neuropathy on my feet.

I challenge you to ask any therapist if they think these symptoms are signs of depression. They'll tell you what they told me: "Your illness is not in your head; you have a genuine physical illness. See a doctor, but see me to deal with the depression that being ill can bring on if you need it."

And seriously... While taking antidepressants can help people with depression, if there is an organic cause for one's depression, such as infection, that needs to be treated first. One only needs to look at cases of psychiatric presentations of Lyme disease - however controversial they are - to at least ask if it isn't a possibility based on the patient's clinical history and limited response to common antidepressants.

Ask those chronic Lyme disease patients who have already taken antidepressants and have seen therapists just how well they have done. Ask. Quite a number of us have already tried exactly what some doctors suggested we do, when they thought we had depression and that is why we felt as crappy as we have. Either they're wrong, or partly wrong, or the drugs they prescribe us just aren't doing the trick.

Depression. Ha. If it is depression, well, then where are the clinical trials where antidepressants and long term antibiotics are used to treat chronic Lyme disease, so we can see the outcome? How about a third treatment arm with therapy alone? At least you'll give us patients a space of our own to swear at and curse modern medicine for not doing more for us.

There's more...

"As the CDC gently points out, mentioning other diagnoses that have been favorite catch-alls, “Your doctor may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions. It simply means that the doctor is trying to help you cope with your symptoms using the best tools available."

And no one knows what exactly causes fibromyalgia or chronic fatigue syndrome. Obviously XMRV has been taken off the table as a cause for chronic fatigue syndrome - but some other virus or another agent may be the cause of this condition.

In any case, neither of these conditions have clear etiology, so you could be trading one mystery for another. None of which are well understood. And all of which are treated symptomatically, and all of which the drugs prescribed (with the exception drugs such as Lyrica, which is the first drug specifcally prescribed to treat fibromyalgia - which also has the unfortunate side effect of potentially causing suicidal behavior) are being offered based on an educated guess that they might work and, well, patient anecdote. They're prescribed off-label for these mysterious conditions of unknown etiology.

So how is treating chronic Lyme disease with antibiotics any different in this respect, until more research comes in on how to better treat it? Until we better understand the cause?

It may be that while long term antibiotic use for everyone with persisting symptoms may not hold up in small scale clinical trials that it may hold up in individual situations for particular patients with specific backgrounds - backgrounds which may not have been widely represented in the trials which have been held to date. Often it takes years for a wider population using a given drug or treatment regimen to expose its side effects and benefits - the outcomes are not always obvious at first.

And the last bit from the Slate:

"Disregarding my own advice about not taking an anecdote as data, I have my own story about chronic Lyme disease. A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."

I am very sorry for your loss, no matter what the cause. This is the tragic loss of one woman's life, and it may have been prevented.

I don't know, though, and I don't know the full story either way. I only have your anecdote.

She could have had undiagnosed Lyme disease. She could have had depression. She could have had something else entirely. She could have had more than one problem which included depression.

If depression is a concern, I recommend anyone with any illness see a therapist because in many cases therapy is equally as effective as antidepressants. And if that doesn't help, cautiously try out an antidepressant that is neuroprotective if no other biological or organic cause can be found for the depression. But certainly, if one continues to have the same symptoms while on antidepressants and begins an empiric course of antibiotics later and finds those symptoms begin to lift, well, then go with what works and maybe science does not immediately have all the answers. Sometimes symptoms which appear psychiatric in nature can have an infection as their cause.

So, anyway...

Whether or not persistent bacteria is the cause of all or some patients' symptoms, in my opinion, is still up for grabs. And at this point, many patients have either made the decision to ignore the results of the three small clinical trials which have been completed, or beg for more research on treatment to help us, or both.

I am a pro-science, pro-research person with a history of skepticism. I am skeptical about my own damn disease. And yet, no one has given me any particular advice in mainstream medicine or science as to what to do about it.

You might want to send your money directly to UC Davis or Tulane University for private research instead. But don't come kvetching to me that I'm running off to an LLMD because my primary care provider referred me to one.*

That's just more complaining - rather than addressing the root of the problem in the first place. Those of us in pain can only wait so long and do nothing for so long...

* True story.

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0 Mitt Romney, Lyme Disease, And The Media

Well, I guess I had to come out of the woodwork to comment on this recent turn of events... If life wasn't so hectic lately, I could have blogged sooner, and written about David Suzuki's observations on how changes in the environment have led to increased incidence of Lyme disease, or Senator Blumenthal's request for personal stories of patients who have been affected by Lyme disease, or the discovery of a new, serious  tickborne phlebovirus in Missouri.

But no, that didn't happen...

The first opportunity I really have to sit down and write here, the news that is crossing my desk and getting a lot of airtime is about Presidential candidate Mitt Romney and the media's commentary on how his support for greater awareness of chronic Lyme disease has been used to ignite interest in Virginia voters who have been struggling with the disease.

And the media has not stopped there, with its opinion pieces focused on how any candidate for office can and will try to influence the vote of certain subgroups of people affected by issue x or issue y... No, after initial criticism was volleyed at Romney, a number of journalists posted articles on chronic Lyme disease and how it is not a real medical condition.

Well, here we go again. It is the same story told by some newspapers and writers, over and over again, about how chronic Lyme disease doesn't exist and how doctors who treat it are taking unfair advantage of patients who are suffering and how patients are naive dupes for a disease based on pseudoscience.

I honestly think at this point that many of you who are writing these pieces for publication have a template for about five boilerplate articles on chronic Lyme disease that you have slight variations on, and publish each article just far apart from each other that the busy, overworked, and exhausted public won't notice that you essentially wrote the same damn thing again - but perhaps with a little twist.

When I first began this blog, it was because of an article written in the Chicago Tribune which was supposed to be about how chronic Lyme disease is a dubious diagnosis - when the content of the article itself had no relationship to the title, and did not examine the issue of whether or not Borrelia burgdorferi - the bacteria which causes Lyme disease - could potentially cause a persistent infection in some people.

What the article in the Chicago Tribune did was look at two doctors who were said to have treated chronic Lyme disease who were reported for disciplinary action to their medical boards for various reasons unrelated to Lyme disease and one charlatan who - like many who promise to offer a cure for cancer - has no cure and no credentials whatsoever.

What a brave and insightful piece of literature it was, to move beyond the carefully crafted soundbites of a puffed-up opinion piece, by closely examining all the issues behind why some doctors, researchers, and patients may think that Lyme disease could persist - and why and why that isn't supported by existing evidence.

Not.

The article did not in any way, shape, or form discuss the scientific complexity involved in Borrelia infections, and the difficulty that doctors can have in properly diagnosing it as its symptoms mimic other conditions. It did not look at the state of the science on Borrelia burgdorferi sensu latu, and how a broad range of strains have different effects and disseminate at different rates.

Anyone reading it would have walked away not with the message that Lyme disease and other tickborne infections can produce a complex symptom presentation. Anyone reading it would not have learned how to prevent such illnesses or to even learn if there are differential diagnoses which one should look at which may be confused with chronic Lyme disease. It wasn't a helpful article that way. What they would have walked away with is the message that there are some doctors out there who have been disciplined for various reasons who happen to treat people with persisting symptoms related to Lyme disease, and some misinformation online about what Lyme disease is and is not.

The recent spate of articles which spend time criticizing Mitt Romney's move to spread awareness of Lyme disease as part of his future goals if elected have also had pretty much the same kind of content, and as opinion pieces are intended to persuade the audience and win them over to the writer's view. However, it should be noted that in no way should these opinion pieces be taken as the final word or even current word in science on what Lyme disease is all about - because as opinion pieces, they are neglecting mention of the scientific evidence needed to support their assertions.

The New Yorker's  recent article, "Mitt Romney Versus Lyme Disease And Science", states that:

"...If left untreated, Lyme disease can be crippling, yet it is a difficult illness to contract: a tick needs to attach itself to your body for at least twenty-four hours. Even then, two weeks worth of commonly prescribed antibiotics will kill the bacterium."

Yes, indeed, if left untreated Lyme disease can be crippling. This much is true: late stage, untreated Lyme disease can lead to cardiac, neurological, and arthritic complications. However, there is more to the rest of the story when it comes to the remainder of this passage: If a tick is on your body for fewer than twenty-four hours, there are circumstances under which transmission of Lyme disease (as well as other tickborne infections) may occur - including if the tick is improperly removed. Also, even the most conservative reading of the IDSA's 2006 guidelines for the treatment of Lyme disease would state that given certain objective and clinical signs, some patients may need retreatment or more than two weeks' worth of antibiotics - particularly if there are certain cardiac, neurological, and arthritic symptoms present.

The New Yorker article simplifies the nature of Lyme disease and makes sweeping statements here. What it could have said - and still be true to mainstream infectious disease canon - could have been this:

"...If left untreated, Lyme disease can be crippling. In American scientific research to date, it has been shown that in most cases, an Ixodes scapularis or pacificus tick needs to attach itself to your body for at least twenty-four hours before Lyme disease can be contracted. Improper tick removal and other factors may, however, contribute to earlier contraction of disease. One might note that there is some evidence that in Europe, Ixodes ricinus ticks have a shorter transmission time for passing on Lyme disease bacteria than American ticks. But even then, in acute cases, the immediate treatment of two weeks' worth of commonly prescribed antibiotics will kill the bacterium in most cases. If symptoms continue, further evaluation for more severe infection and tickborne coinfections is needed."

I think some more qualifiers are needed there. And I know - this is, perhaps, a less targeted passage in that it steps outside of American research and points at what's happening in Europe. But the point is, Lyme disease is a global issue and a global problem, due to global warming and climate change. It's not just Virginia's. Or even the eastern seaboard's problem.

People travel. People get sick overseas. Lyme disease is overseas. And perhaps it helps to raise the question of how much scientific research on Borrelia may be applicable in different locations the more that is learned about the bacteria as a whole... More research here is really the key to better understanding this bug.

I will, however, give The New Yorker's Michael Specter credit for this mention:

"In fact, there is a clear scientific issue that can only make Lyme disease worse—but it is a problem that Romney and the Republicans have ignored. The Intergovernmental Panel on Climate Change has noted that increasing temperature helps keep ticks alive. More ticks means more Lyme disease. This is a connection, as Mother Jones first noted, that Romney has failed to consider. Instead, he has said that spending huge sums trying to reduce CO2 emissions is “not the right course for us."

Climate change is a huge player in the tickborne illness game, and I don't need Al Gore or the IPCC or even David Suzuki to point this out for me. Look outside every year, and tell me what I don't see with my own eyes: The ticks are out there earlier, and out there for longer periods of time than they've been in the past. Ask the epidemiologists and entomologists, too, if you need confirmation... Sure populations will wax and wane to a degree - but what's the trend over time?

The Business Insider's article, "Why Romney's Statements About Chronic Lyme Disease Are Dangerous", does tend to give the topic a somewhat more balanced approach by acknowledging that there is a debate within the medical and scientific community by stating, "Many doctors and researchers don't believe in this syndrome, which lasts much longer than your run-of-the-mill Lyme disease infection. The CDC, NIAID, and leading medical professionals agree that the syndrome doesn't exist. There are others within the scientific community, and especially outside of it, that debate these experts."

This, at least, is an opening gambit which sets the tone for the rest of the article by acknowledging there is a debate - with the primary focus being that politicians such as Mitt Romney should steer clear of medical debates and leave such debates to science, where they belong. Politicians are not qualified to participate in such debates.

One notable passage for me was this one:

"The symptoms of chronic Lyme disease could also be caused by an auto-immune reaction to the infection, or lasting damage from the bacterial invasion. Either way, these symptoms aren't helped by additional long-term antibiotic treatment, which has side effects and dangers of its own."

This is perhaps the first and only statement in the entire article which focuses on what some potential causes are of chronic Lyme disease, giving it some acknowledgement that yes, in fact, this condition does exist - even if its cause has been greatly debated. But there are no citations and there is no supporting evidence given to back this passage - nor a good percentage of other statements made in the article. There is no mention, either, of Dr. Monica Embers' "Persistence of Borrelia burgdorferi in Rhesus Macaques" study or other research which present the possibility that Borrelia burgdorferi might persist after antibiotic treatment.

In Slate magazine, Laura Helmuth reports this personal story:

"A friend of one of my brothers had been suffering for years from headaches, fatigue, a sense of despair, a belief that she wasn’t worthy of her job or her boyfriend. She was diagnosed with chronic Lyme disease and was treated with antibiotics, which were ineffective. What she wasn’t treated for, and could have been, was severe depression. She killed herself."

While I am very saddened to hear of this woman's death, there isn't enough information here to know exactly what happened. She may have had severe depression, she may have had Lyme disease, and/or she may have had a completely different medical issue. I simply don't know - there's no way to verify this story - it is also possible the woman in question had both Lyme disease and depression, because it happens to a number of people. It happened to me, too... I was in so much pain in the past, I was begging for God to take me.

If you are depressed, I hope you will seek treatment for it, and see a qualified licensed therapist for help. But it has been said by many in the medical profession to seek alternative causes for depression and fatigue, as hypothyroidism and other conditions may give rise to these symptoms. There can be underlying medical reasons for one's depression, and it may be that antidepressants are not the primary tool for healing.

In any piece of writing, it is important to consider the following questions:

• What is the expertise and education of the person writing?
• What is the agenda of the writer? Are they trying to promote an idea, sell a product, evoke a strong emotional response to gain readership, present different sides of a contested issue, or educate the public on an important matter?
• What is the outcome that can be achieved by publishing this specific piece in this particular publication?
• What references and citations has the writer given to support their assertions and statements?
• Does a thorough survey of the information provided and research completed from different sources provide evidence which support the writer's position? 
• Is there information and research which supports an alternative position? What is the strength of the evidence supporting these positions?

I encourage anyone reading these articles about Mitt Romney and chronic Lyme disease to ask themselves the same questions above, and to do your own research on whether or not Lyme disease can lead to persisting symptoms after initial (especially delayed) treatment with antibiotics.

The entire Internet is out there at your disposal to use, and scientific journals, books, PubMed, and other reliable sources from which to get your information on Lyme disease - all free of spin.

Of course, you yourself will end up walking away from all the research required to even begin to understand Borrelia burgdorferi with your own personal spin - but at least you will know more than you can learn from reading a random article which gets published in an online newspaper or magazine.

And write to researchers if you want to better understand their research. It's the honest way to understand what their position is on their own work, rather than assume their position based on others' interpretations of their work. They will likely be touched that you made the effort to ask questions than assume someone else's interpretation (which may or may not be correct), and be pleased that you took the attitude that no question is a stupid question.

As for your vote: vote with your conscience. I can't tell anyone how to vote and it's not my job to tell you how to vote. I can only tell you that after seeing George W. Bush in office and how little attention and assistance he gave the Lyme disease patient community after his own battle with the disease that I have little faith in any politician delivering the much needed funds for translational medicine and treatment research that will help me and my fellow patients.

I feel pretty much the same about anyone else running for office, and anyone trying to stay in office: Show me you can make my life better, either directly or indirectly through concrete and substantial action - or hire someone working for you who will.

I don't want someone to discuss synergy (some vague assertion with no concrete plan), creating another task force or Lyme disease committee, or official state day in observance of Lyme disease. No. What I want to see is money going directly towards treatment and testing research - towards something tangible that has clear actionable goals and benchmarks to be met. What I want to see is concerted effort towards directly supporting those who are ill, with access to a wider range of treatment options, home health care aides, transportation, and supportive services (therapy to help patients physically and emotionally) during the darkest times of our lives.

I also am not a "single issue voter", either. If you are running for office and you make campaign promises that are about promoting awareness of Lyme disease - but slash support for medicare and disability, and make it harder for those of us who are ill and dysfunctional to get the help we need on a broad scale - I can't in my good conscience vote for you. I have to vote for someone who supports all of us who are dealing with disabilities - my fellow humans who are suffering - and those who are currently well who, unfortunately, may one day join our ranks.

In closing, I leave you with one passage from The Business Insider:

"Romney should pledge to funnel money into research organizations that could find the actual cause of this disease, and he could help stop its spread by addressing the causes of global climate change, the main reason the disease has reached so far and wide and continues to spread."

I wouldn't stop there. EVERYONE should pledge to funnel money into research organizations that could find the actual cause of this disease - and more importantly, effective treatment and testing for it.


Image Credit: Former Governor Mitt Romney giving an interview at a supporters rally in Paradise Valley, Arizona. December 6, 2011. Source: http://www.flickr.com/photos/gageskidmore/6468744615/. Taken by Gage Skidmore. This image is licensed under the Creative Commons Attribution-Share Alike 2.0 Generic license.

This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.

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